*sapphoq healing tbi
Monday, October 27, 2008
Driving, Executive Functions, and Stuff
Yeah, I've been gone for awhile.
(http://life.sapphoq.com)
Now I am back.
I've been to Peter Kahrmann's workshop/peer support group in Albany where I found out that the part of my brain that caused my multi-tasking to "shit the bed" as the neuropsych at Sunnyview had so eloquently expressed it is my frontal lobe. Frontal lobe damage is the reason why I cannot carry laundry from the back porch to the bedroom and converse at the same time.
I took Dad to a driving evaluation at Sunnyview today. I learned a few things while there. I learned that many of Dad's vision problems (his visual acuity which is commonly expressed by numbers like 20/20 or 20/30 or 20/40 is acceptable) from his dementia are the same vision problems
that some of us with brain injuries struggle with. For those who like meaningless stats, 80% of folks with t.b.i.s have vision problems and 20% of us have auditory problems. 99% of us have memory problems. I don't have the memory or the auditory problems. I do have the vision problems.
During the driving eval at Sunnyview, the evaluator tested for visual acuity, visual scanning, visual discrimination, color discrimination, peripheral vision, impulsivity, and reaction time.
The difference between traumatic brain injury and dementia is that we can expect some improvement in some areas over time. Dementia does not improve. Dementia progresses and worsens over time. Brain damage is brain damage though, in spite of different prognoses. Consequently, some of the things we learn from places like B.I.A.-U.S.A. like "every brain injury is different" is also expressed in Alzheimers' circles as "every dementia looks different."
spike
(http://life.sapphoq.com)
Now I am back.
I've been to Peter Kahrmann's workshop/peer support group in Albany where I found out that the part of my brain that caused my multi-tasking to "shit the bed" as the neuropsych at Sunnyview had so eloquently expressed it is my frontal lobe. Frontal lobe damage is the reason why I cannot carry laundry from the back porch to the bedroom and converse at the same time.
I took Dad to a driving evaluation at Sunnyview today. I learned a few things while there. I learned that many of Dad's vision problems (his visual acuity which is commonly expressed by numbers like 20/20 or 20/30 or 20/40 is acceptable) from his dementia are the same vision problems
that some of us with brain injuries struggle with. For those who like meaningless stats, 80% of folks with t.b.i.s have vision problems and 20% of us have auditory problems. 99% of us have memory problems. I don't have the memory or the auditory problems. I do have the vision problems.
During the driving eval at Sunnyview, the evaluator tested for visual acuity, visual scanning, visual discrimination, color discrimination, peripheral vision, impulsivity, and reaction time.
The difference between traumatic brain injury and dementia is that we can expect some improvement in some areas over time. Dementia does not improve. Dementia progresses and worsens over time. Brain damage is brain damage though, in spite of different prognoses. Consequently, some of the things we learn from places like B.I.A.-U.S.A. like "every brain injury is different" is also expressed in Alzheimers' circles as "every dementia looks different."
spike
Labels: driving, executive function, frontal lobe, Peter Kahrmann, t.b.i., tbi, traumatic+brain+injury
¶ 7:04 PM 0 comments links to this post
Saturday, August 23, 2008
The Rigging of Failure 8/23/08
a big shout-out to the unknown damsel
The stoopid saga of VESID sucks carries on. The job handler/job developer/employment consultant whatever has transferred to a different job herself. The VESID-sucks counselor (my third) is apparently absent from work due to personal/medical whatever. Consequently, I have once again attained the status of limbo without the use of drugs.
As damsel has pointed out in a couple of comments over at Blogaholics, VESID-sucks has as a modus operandi the rigging of failure. Specifically and anecdotally only (based on googling various and sundry terms such as "VESID sucks" and "VESID horror stories" and "VESID complaints") one problem is the mindset to shove us into a job any job without much regard to anything. The other problem is the tendency of VESID helpers to declare many of us as being somehow falling short in the intelligence department and the blatant advice to lower our goals. Of course, if picking up pins with a tweezer and putting them in a container is a measure of anything at all-- the stoopid it burns-- then lots of people should automatically settle for a two year community college degree or a secretarial course or a job in retail or at a supermarket packing groceries. Sigh.
Anecdotally only, a good friend of mine was advised by his O.V.R. testers in another state that college would be an "impossible" goal for him to reach as well. Friend is brilliant. Friend went on to achieve 4.0 in college courses. See, the rub is that if any of our employment situations, college enrollment in courses or a pursuit of study, etcetera is not in line with what VESID sucks (or O.V.R. sucks) assumes is "realistic" based on our putting pins into a container using tweezers, they don't have to support it. In other words, I can be denied job coaching if the lousy little part-time job I have demands that I do something that VESID doesn't think I should do or am capable of doing. And folks who wish to obtain bachelor degrees or more can be denied needed funding by VESID or O.V.R. because the rigors of academia are a far stretch from what their stoopid testing shows that those folks should be able to do.
Could it be funding? The organization that is supposed to provide me with job development and job coaching services is getting paid more than three thousand dollars for one year of their non-services. (Just as soon as I provide a doctor's note indicating that a temporary exacerbation of vertigo into a two-week "attack" is now resolved for the time being and I can "return to work" which I don't have, my non-services can resume. Just as soon as someone figures out that I am on their caseload that is.)
VESID stands to benefit financially by talking people down into two years of college or a secretarial course versus bachelor's level studies and more. And VESID benefits financially by setting their counselors' objectives to get the disabled customers working (at anything) as soon as frickin' possible. To hell with our aspirations. To hell with what we want. To hell with MEANINGFUL employment. No love, VESID sucks, no love.
The three thousand bucks VESID has wasted on my non-employment this past year could have been used to send damsel to her very much wanted and sought after bachelor's degree. Ah, damsel wasn't even eligible for financial aid from VESID sucks and they made her take those stupid tests anyways. Those of us who are not totally broke don't get to have our tuitions paid. Books and twelve cents a mile was the last I heard. At the price of gas these days, twelve cents a mile is a bad joke. Considering that the professional VESID helpers are getting around three times that amount for their mileage, it is an insult.
Another two friends recently found themselves as "trainees" or whatever the fancy word is at a local sheltered workshop. Apparently, those of us who are judged severely disabled do get encouraged to spend at least twenty hours a week at one of those places. It's part of the process of getting the disabled into jobs. The two friends were told that this was now their best chance at gaining supportive employment down the road. Other avenues-- community college courses or a job developer calling them up on Fridays and nagging them-- failed to produce a job of any sort for my two friends. Who exactly refers the VESID failures to sheltered workshops? I still have not found the answer to that question. Neither the VESID sucks counselors nor the job developer have admitted to initiating referral. I asked. I searched the website for clues. No clear information was given. But I digress.
It is LEGAL to pay a disabled "trainee" less than the minimum wage at such places. Way less. The assumption is (based on "timed studies" often conducted with staff volunteers) that a disabled worker cannot possibly be fast enough or good enough to make the minimum wage. The disabled worker in a sheltered workshop is subject usually to piecework, pro-rated of course. If the disabled "trainee" is lucky enough to qualify for training off-site (welding or warehouse loading or potato peeling or newspaper insert stuffing or cleaning), the disabled "trainee" still will not receive minimum wage. Under the law, the workshop is not required to pay it. In effect, the "trainee" is furnishing part of the salary of the on-site rehab counselor (separate from the VESID counselor), part of the salary of the workshop supervisor, part of the salary of the off-site trainer, part of the salaries of all of the staff people who come in contact with the trainee. And of course, part of the profit of the sheltered workshop comes from the trainee's pittance because the workshop is able to low-ball other businesses when it comes to bidding.
Meanwhile, the absence of vertigo attacks is the least of my concerns. I continue to have serious problems which concern me far more than the fact that my world drifts to the left 24/7. As usual, anything worth having is worth working for. And I shall have to force my damaged brain to think of other options to reach my goals and other people who can point out some ways to proceed. There is a word for those people who are willing to help yet aren't professional helpers-- natural supports. All of this leads me to tentatively conclude that VESID sucks must therefore be the unnatural supports.
Oh yeah and VESID sucks: fruck you.
sapphoq healing t.b.i.
p.s. damsel, if you ever want to get in touch with me, my insanejournal blog (user name sapphoq) allows anonymous comments which are screened. Or, you can e-mail sapphoq. sapphoq has an e-mail account at google.
a big shout-out to the unknown damsel
The stoopid saga of VESID sucks carries on. The job handler/job developer/employment consultant whatever has transferred to a different job herself. The VESID-sucks counselor (my third) is apparently absent from work due to personal/medical whatever. Consequently, I have once again attained the status of limbo without the use of drugs.
As damsel has pointed out in a couple of comments over at Blogaholics, VESID-sucks has as a modus operandi the rigging of failure. Specifically and anecdotally only (based on googling various and sundry terms such as "VESID sucks" and "VESID horror stories" and "VESID complaints") one problem is the mindset to shove us into a job any job without much regard to anything. The other problem is the tendency of VESID helpers to declare many of us as being somehow falling short in the intelligence department and the blatant advice to lower our goals. Of course, if picking up pins with a tweezer and putting them in a container is a measure of anything at all-- the stoopid it burns-- then lots of people should automatically settle for a two year community college degree or a secretarial course or a job in retail or at a supermarket packing groceries. Sigh.
Anecdotally only, a good friend of mine was advised by his O.V.R. testers in another state that college would be an "impossible" goal for him to reach as well. Friend is brilliant. Friend went on to achieve 4.0 in college courses. See, the rub is that if any of our employment situations, college enrollment in courses or a pursuit of study, etcetera is not in line with what VESID sucks (or O.V.R. sucks) assumes is "realistic" based on our putting pins into a container using tweezers, they don't have to support it. In other words, I can be denied job coaching if the lousy little part-time job I have demands that I do something that VESID doesn't think I should do or am capable of doing. And folks who wish to obtain bachelor degrees or more can be denied needed funding by VESID or O.V.R. because the rigors of academia are a far stretch from what their stoopid testing shows that those folks should be able to do.
Could it be funding? The organization that is supposed to provide me with job development and job coaching services is getting paid more than three thousand dollars for one year of their non-services. (Just as soon as I provide a doctor's note indicating that a temporary exacerbation of vertigo into a two-week "attack" is now resolved for the time being and I can "return to work" which I don't have, my non-services can resume. Just as soon as someone figures out that I am on their caseload that is.)
VESID stands to benefit financially by talking people down into two years of college or a secretarial course versus bachelor's level studies and more. And VESID benefits financially by setting their counselors' objectives to get the disabled customers working (at anything) as soon as frickin' possible. To hell with our aspirations. To hell with what we want. To hell with MEANINGFUL employment. No love, VESID sucks, no love.
The three thousand bucks VESID has wasted on my non-employment this past year could have been used to send damsel to her very much wanted and sought after bachelor's degree. Ah, damsel wasn't even eligible for financial aid from VESID sucks and they made her take those stupid tests anyways. Those of us who are not totally broke don't get to have our tuitions paid. Books and twelve cents a mile was the last I heard. At the price of gas these days, twelve cents a mile is a bad joke. Considering that the professional VESID helpers are getting around three times that amount for their mileage, it is an insult.
Another two friends recently found themselves as "trainees" or whatever the fancy word is at a local sheltered workshop. Apparently, those of us who are judged severely disabled do get encouraged to spend at least twenty hours a week at one of those places. It's part of the process of getting the disabled into jobs. The two friends were told that this was now their best chance at gaining supportive employment down the road. Other avenues-- community college courses or a job developer calling them up on Fridays and nagging them-- failed to produce a job of any sort for my two friends. Who exactly refers the VESID failures to sheltered workshops? I still have not found the answer to that question. Neither the VESID sucks counselors nor the job developer have admitted to initiating referral. I asked. I searched the website for clues. No clear information was given. But I digress.
It is LEGAL to pay a disabled "trainee" less than the minimum wage at such places. Way less. The assumption is (based on "timed studies" often conducted with staff volunteers) that a disabled worker cannot possibly be fast enough or good enough to make the minimum wage. The disabled worker in a sheltered workshop is subject usually to piecework, pro-rated of course. If the disabled "trainee" is lucky enough to qualify for training off-site (welding or warehouse loading or potato peeling or newspaper insert stuffing or cleaning), the disabled "trainee" still will not receive minimum wage. Under the law, the workshop is not required to pay it. In effect, the "trainee" is furnishing part of the salary of the on-site rehab counselor (separate from the VESID counselor), part of the salary of the workshop supervisor, part of the salary of the off-site trainer, part of the salaries of all of the staff people who come in contact with the trainee. And of course, part of the profit of the sheltered workshop comes from the trainee's pittance because the workshop is able to low-ball other businesses when it comes to bidding.
Meanwhile, the absence of vertigo attacks is the least of my concerns. I continue to have serious problems which concern me far more than the fact that my world drifts to the left 24/7. As usual, anything worth having is worth working for. And I shall have to force my damaged brain to think of other options to reach my goals and other people who can point out some ways to proceed. There is a word for those people who are willing to help yet aren't professional helpers-- natural supports. All of this leads me to tentatively conclude that VESID sucks must therefore be the unnatural supports.
Oh yeah and VESID sucks: fruck you.
sapphoq healing t.b.i.
p.s. damsel, if you ever want to get in touch with me, my insanejournal blog (user name sapphoq) allows anonymous comments which are screened. Or, you can e-mail sapphoq. sapphoq has an e-mail account at google.
Labels: employment, t.b.i., tbi, traumatic+brain+injury, VESID sucks
¶ 10:51 PM 0 comments links to this post
VESID sucks comment
Somehow I missed it. Over at the Blogaholics Anonymous Gr0up Blog, one of my rants against the organization VESID-sucks garnered a comment which can be seen here
If you wish to read the comment by damsel, you will have to scroll down to almost the end of the page.
In case the link does not work, it is at:
http://the-blogaholics-anonymous.blogspot.com/2008/05/
face-to-ass-with-past.html?showComment=1218955740000#c7960326866138253548
sapphoq healing t.b.i.
If you wish to read the comment by damsel, you will have to scroll down to almost the end of the page.
In case the link does not work, it is at:
http://the-blogaholics-anonymous.blogspot.com/2008/05/
face-to-ass-with-past.html?showComment=1218955740000#c7960326866138253548
sapphoq healing t.b.i.
Labels: employment, t.b.i., tbi, traumatic+brain+injury, VESID sucks
¶ 10:47 PM 0 comments links to this post
Monday, July 07, 2008
Kristen Furseth-Mullaney's triumph
http://www.freep.com/apps/pbcs.dll/article?AID=/20080706/SPORTS17/807060590/1065
A big shout-out to Kristen Furseth-Mullaney who is vying for a spot at the Olympics as a racewalker for the United States. She hails from Okemos, Michigan. Furseth-Mullaney suffered a traumatic brain injury in 2006 when she was hit by a car while biking in the Caribbean. After having to relearn how to walk, she began her athletic comeback in the water and gradually was able to swim laps. She wanted to run but the docs nixed that idea. They did allow her to try race-walking and so she did. The mother of two has left frontal lobe damage but that did not stop her from setting goals and achieving them. The most recent m.r.i. shows the possibility of a brain tumor and she is also now diagnosed with adrenal insufficiency. My baseball cap off to a woman who did not let traumatic brain injury stop her from pursuing a dream.
sapphoq healing t.b.i.
A big shout-out to Kristen Furseth-Mullaney who is vying for a spot at the Olympics as a racewalker for the United States. She hails from Okemos, Michigan. Furseth-Mullaney suffered a traumatic brain injury in 2006 when she was hit by a car while biking in the Caribbean. After having to relearn how to walk, she began her athletic comeback in the water and gradually was able to swim laps. She wanted to run but the docs nixed that idea. They did allow her to try race-walking and so she did. The mother of two has left frontal lobe damage but that did not stop her from setting goals and achieving them. The most recent m.r.i. shows the possibility of a brain tumor and she is also now diagnosed with adrenal insufficiency. My baseball cap off to a woman who did not let traumatic brain injury stop her from pursuing a dream.
sapphoq healing t.b.i.
Labels: a.b.i., acquired brain injury, brain-tumored, goals, t.b.i., tbi
¶ 10:01 PM 0 comments links to this post
Friday, June 13, 2008
A Shout-Out to Matt Evans of Kalamazoo
At the age of eight, Matt Evans was hiking in Colorado and he fell off a cliff. He fractured a skull. His brain injury left him with slowed cognitive processing. On top of that, he had a stroke which left him with some paralysis in an arm, difficulty walking and speaking, and the need for several surgeries on both his right arm and leg. In spite of his difficulties, Matt Evans continued to play golf-- albeit one-handedly-- and it is reported that he indulges in a game of pick-up basketball here and there. He graduated with a 3.5 cum and he hopes to pursue further studies and a career in elementary education.
Matt Evans, I salute you for persevering in spite of your disability and I wish you the best in life.
sapphoq healing traumatic brain injury
http://blog.mlive.com/grpress/2008/06/kalamazoo_central_grad_overcom.html
Matt Evans, I salute you for persevering in spite of your disability and I wish you the best in life.
sapphoq healing traumatic brain injury
http://blog.mlive.com/grpress/2008/06/kalamazoo_central_grad_overcom.html
Labels: achievement, Matt Evans, stroke, t.b.i., tbi, traumatic+brain+injury
¶ 9:11 PM 0 comments links to this post
Sunday, June 08, 2008
I Am What I Am-- no, not Popeye the Sailor Man
This weekend left me hot as hell and thinking about getting a summer shack up in the Aleutian Islands. The dog would love it up there of that I am sure. However, we are where we are and where we happened to be this weekend was humid as all get out. It was the kind of weather that rose off the sidewalks in a deep haze. One time way back when I was working in a nursing home, I had left some old lady's shoes on the radiator. Big mistake. The soles were melting by time someone else rescued them. It wasn't hot enough here to fry an egg perhaps, but it was probably hot enough to melt the rubber soles off of shoes left on some black tarry street. The kids down the block had gotten one of them pint-sized electric cars and they were cruising over their front lawn. I laughed to see their yellow lab slowly lopping after it, reaching out once every so often to bite the tires.
Yesterday I went to a speaker jam. Those that know me well know that I have been in recovery for a very long time-- in fact more than half my life. Yes I still attend meetings of several twelve step groups on a regular basis. I have been accused of all kinds of crimes related to being anti-12 step groups on the internet because I am a sometimes critic of ways and means and probably because I am a Witch/Atheist/currently a Discordian. (If you don't know what Discordianism is, please google it if you care). Or maybe because I am sometimes a jerk. Whatever. In the blogging world as in real life, that is the risk that one takes when expressing oneself: That sooner or later somebody is going to take exception to one's opinions. Oh well. The price of freedom of speech is one that I am willing to pay.
At any rate, I didn't get to the speaker jam at the beginning but that was alright. I am not a morning person, that is fer sure. So I missed the first two speakers out of ten; and the last one. I was there for seven speakers of varying abilities and stories. One thing became immediately clear to me-- from the women speakers as well as from the men speakers-- and that one thing is that a vast majority of those who spoke yesterday have sex on their minds. I learned quite a bit yesterday. Sex problems don't magically disappear when one gets into recovery. I just wasn't expecting them to be so prevalent in what I heard yesterday. A secondary theme was gambling problems in recovery. I was especially appreciative of that since the last couple of months I have wanted to get high and to gamble. The odd thing about wanting to gamble for me is that gambling was never my thing. It didn't do much for me, I only remember getting one gambling "rush" and that was in a small group of folks from Running Sores who were at the race track. I'd been forced to go to that racetrack under the guise of a manager appreciation party when people were still able to force me to be social in a large group but that is a whole other tale. And not a terribly interesting one at that.
About midway through the afternoon, I noticed that someone (who still works at Running Sores) had entered the room and was sitting not far away from me. She was doing a fairly good imitation of being blind to my presence. That was a pretense that I was content to let be. I really didn't care one way or the other. Or at least I had decided not to care for the moment. A bit later as I got up to leave (before speaker number ten and the clean time countdown), the Running Sores woman had moved and I walked right past her to go outside and to my car. Again, she turned away from me. Several thoughts vied for my attention. One of them was along the lines of, "What the hell. Am I a leper? Is brain damage catching?" Some of the other ones were more sane, or at least more of a rationalizing nature. "I didn't want to talk to you either." "Whatever." And there was the ultra-adult thought which ran, "Hey it's been about four and a half years now. Isn't it time to get over this mental masturbation about Running Sores and how 'cruelly' I was treated? Get on with life already."
The thing is, healing doesn't necessarily happen upon demand. Or there would be bunches of people demanding healing, maybe even curing, and getting it. Emotional healing is not much different from the physical in that regard in my opinion. From past experience after a devastating house fire, I know I have to call each thing/person by name and say what they meant to me before I will be able to let go in a real way. So there is more work to do on that score. It's okay though because I have a way to address it and a support network to help me get through it.
I am most fortunate because my support network is not limited to people in recovery. Like the inane commercial for a credit card with frills says, "I got people." This whole life thing, being a citizen of the universe and all of that, is not a simple matter of us versus them. It is not you and me against the world or people in recovery fighting with the aliens (those without a 12 step program, whether they need to be in some form of recovery or not). Nor is it any faction of the gay/lesbian/bisexual/transsexual/transgendered/intersexed/queer communities against the straights, atheists fighting the Christians or other religious groups, disabled against everyone else. Nor even those of us with atypical neurology slugging it out with the neurotypicals.
I sometimes have to remind myself of these things rather forcefully. I have to remind myself that business is business, period. That although I believe that ninety eight percent of those working in the human services field deserve to be eaten by Baba Yaga, really life cannot be reduced to black and white. Consequently, the woman from Running Sores who was at the same speaker jam that I was at yesterday had the same right to be there that I had. And I had the same right to be there that she had.
The last time I saw her was early on after my accident at the local mall. She had gotten my old job but spared no sympathy for her old boss. Hey, I lived anyway. I could obsess over the lack of support from the folks at Running Sores or I could dwell on the support that I was getting elsewhere. Traumatic brain injury has made obsessions the easier softer way and so in truth, for several years I did ruminate excessively over the idea that I did not get a get well card from the folks at Running Sores. [A friend finally sent me a Get Well card, hoping that would help. It did]. What I got from Running Sores was a form from the safety committee which asked, "How could this accident have been prevented?" I wrote down "Shoot all of the pot smokers who drive." [The man who had hit my car was high]. The lawyer was keeping close tabs on my altered states at that time so he was able to convince me to send all forms to him. Whenever I was asked about some form or other, I learned to say, "The lawyer has it. I can't understand it." That much was true. Filling out any kind of form during the first two years post-accident took about an hour and a half and resulted in colossal headaches. And my "answers" were not coherent. The lawyer put all the forms in the round file and had some assistant or other fill them out only when forced to. That is how lawyers do things.
In truth, although my nemesis was ignoring me at the speaker jam, I really didn't have much to say to her either. What could I have said? Hello, how is work? Lame. Good to see you. It wasn't. You are looking well. Like I care. By the way, yes indeed it is a traumatic brain injury just like I had told you at the mall and I am on disability and I hate VESID sucks. She isn't required to care about any of that in even the most superficial way. Just as I am not required to care about her life either.
Traumatic brain injury is a polite word for brain damage. I am brain-damaged. My life got derailed through no fault of my own (for once) four and a half years ago. And yet. The world didn't stop because my world shattered. Since the accident, I've had to deal with lots of stuff. I am not dead. I am very much alive, still breathing. Breathing is a definite plus. I can let the shoes stay on the radiator, their soles melting down into the heat. Or I can take the shoes off of the radiator, open the window to let the stench of burning rubber out, and get on with living the best way I know how.
The metaphor with the shoes bothers me. Like many metaphors that I hear in the rooms of recovery, there is no allowance for more than two ways. Either we are going forwards or we are going backwards. We are progressing in our recovery or we are headed for a fall. We are on g-d's side or we aren't. We are part of the problem or we are part of the solution. I have problems with the whole good-evil dichotomy. For quite awhile now, I've suspected it is just a neat over-simplistic way of saying good g-d-fearing folks to the right and the rest of the infidels to the left. Those of you who know the significance of the numbers 23 and 5 will understand.
The other thing that bothers me is the blending. The whole "all religions are different ways of going up the same mountain." Or "all religions are just different ways of knowing the same g-d." Or, even worse, "all religions kind of meld together." Uh, no they don't. All of the religions of the world cannot even agree on the basics. Christians say Jesus is the Son of g-d. Muslims declare that Allah didn't have a son of any sort. Jews say the Messiah didn't come yet. The Hindus and the Muslims have been fighting each other in India for years and years. Several Muslim factions are also at war. The Koran has produced believers who take on the admonishment to "Kill the infidels" quite literally. Other believers found their ways around that. The Bible has been used to justify slavery, separation of the races, oppression of women and the disabled and those of us who are not straight. And there are believers who find their way around those verses as well. The Buddhists are actually atheistic in their own right with a twist. I think I will read some more of that Richard Dawkins book along with some of the others ones laying around here. (More book reviews coming up by next week at http://sapphoqreviews.blogspot.com). All religions and cultures and peoples are not equally good nor do they all hold equal value to the survival of the humans and other stuff. Call me politically incorrect. I consider that to be a compliment.
I think about the stuff we have lost and the stuff we are losing to political correctness. Like the pot smokers who drive, lets go shoot all of the comedians. Follow that up with the hanging of bloggers and mediacs, gassing of politicians and educators. Oh, but not just the liberals who in my mind are responsible for things like the renaming of the Sambo's restaurants. Let's rid the world of the conservatives too who don't agree with the libs. Let the dems and the pubs drown together as they debate things like a New York State Law that officially makes it illegal to sell a cow which has tuberculosis. If we get rid of everyone who doesn't agree with everyone else, there would be no one left. I have gone off on another flight of fancy. Drat this brain damage.
Drat the Brain Injury Association of the United States of America which had green rubberized bracelets made up. I don't know how or why someone decided that green is the color of brain injury. Myself, I would have opted for a gray/black combination. I would not wear the bracelet when it first came out nor will I now. The bracelet says, "Mind Matters." Screw that. Scientists cannot agree on whether the mind exists at all. Oh it may and it may or may not be part of or the same as the brain or separate from the brain. Or the mind might me a figment of the imagination. No one asked me my opinion when it was time to decide what color to use or what slogan to put on the stupid rubber bracelet. My slogan, "BRAINS matter." My brain matters. The same political correctness that causes "traumatic brain injury" to be preferable to the words "brain damage," is that the reason behind picking the non-specific "mind" over the very specific "brain?"
English does not have a verb to distinguish a temporary state of being from the essence of being. In Spanish, a language whose beauty captivates me, there are two verbs that translate into the English "to be." There is ser-- a state of being which is not intrinsic to the organism. And there is estar which describes the essence of being. Thus, when I straightforwardly say at to a group of people in recovery that I was a failure at teaching I have no way of indicating that I am not claiming that failure permeates and defines me. Along comes the rationalizations. Someone's g-d didn't want them to be a famous fill-in-the-prestigious-career-of-choice. Someone else informs a small group of folks within my earshot that her definition of failure is different than mine. I can't help but wonder if this unwillingness to admit that because some of us failed at some undertakings that means that we were failures at those undertakings is a leftover from the rah-rah cheerleader self-esteem school of thought. Objectivism certainly has its' foes these days from schoolrooms to boardrooms. I owe a debt to objectivism. Objectivism actually helped me to separate my rationalizations from reality. I learned that yes indeed we are not born equal in terms of ability. I learned through objectivism to take responsibility for my actions, to examine how I contributed to my failures. I cannot push my failure at teaching in the classroom off on some higher power or even on some lower power. It was my own internal inability to ask for help that caused my downfall. So yes I failed at teaching. I was a failure as a teacher in the classroom. Those of you who protest that have never seen me with a group of children as I struggled with the expectation that I keep some sort of order and impose some discipline. I was a failure at teaching-- ser. I am not the totality of failure-- estar.
Even when my brain damage a.k.a. traumatic brain injury has made communication difficult, I know that for example the failure of VESID sucks to adequately serve me is also partially my failure as well. The folks at Running Sores were conducting business as usual after my accident, probably in accordance with legal advice. Brain injuries are expensive. Their insurance company didn't want to get stuck with my medical bills just as my automobile insurance company didn't want to get stuck with my medical bills. Business is business. I don't have to personalize any of it. I didn't understand that back in the early days after my accident when I was sleeping for twenty hours a day. I can understand it now. I am not who I used to be. Even my taste in reading material has changed. I am not who I was going to be-- would have been today if the accident hadn't happened. I am certainly not better off. Spare me.
I am who I am. And regardless of the attitudes and actions of people and agencies around me, I know that I am going to keep striving.
sapphoq healing t.b.i.
Yesterday I went to a speaker jam. Those that know me well know that I have been in recovery for a very long time-- in fact more than half my life. Yes I still attend meetings of several twelve step groups on a regular basis. I have been accused of all kinds of crimes related to being anti-12 step groups on the internet because I am a sometimes critic of ways and means and probably because I am a Witch/Atheist/currently a Discordian. (If you don't know what Discordianism is, please google it if you care). Or maybe because I am sometimes a jerk. Whatever. In the blogging world as in real life, that is the risk that one takes when expressing oneself: That sooner or later somebody is going to take exception to one's opinions. Oh well. The price of freedom of speech is one that I am willing to pay.
At any rate, I didn't get to the speaker jam at the beginning but that was alright. I am not a morning person, that is fer sure. So I missed the first two speakers out of ten; and the last one. I was there for seven speakers of varying abilities and stories. One thing became immediately clear to me-- from the women speakers as well as from the men speakers-- and that one thing is that a vast majority of those who spoke yesterday have sex on their minds. I learned quite a bit yesterday. Sex problems don't magically disappear when one gets into recovery. I just wasn't expecting them to be so prevalent in what I heard yesterday. A secondary theme was gambling problems in recovery. I was especially appreciative of that since the last couple of months I have wanted to get high and to gamble. The odd thing about wanting to gamble for me is that gambling was never my thing. It didn't do much for me, I only remember getting one gambling "rush" and that was in a small group of folks from Running Sores who were at the race track. I'd been forced to go to that racetrack under the guise of a manager appreciation party when people were still able to force me to be social in a large group but that is a whole other tale. And not a terribly interesting one at that.
About midway through the afternoon, I noticed that someone (who still works at Running Sores) had entered the room and was sitting not far away from me. She was doing a fairly good imitation of being blind to my presence. That was a pretense that I was content to let be. I really didn't care one way or the other. Or at least I had decided not to care for the moment. A bit later as I got up to leave (before speaker number ten and the clean time countdown), the Running Sores woman had moved and I walked right past her to go outside and to my car. Again, she turned away from me. Several thoughts vied for my attention. One of them was along the lines of, "What the hell. Am I a leper? Is brain damage catching?" Some of the other ones were more sane, or at least more of a rationalizing nature. "I didn't want to talk to you either." "Whatever." And there was the ultra-adult thought which ran, "Hey it's been about four and a half years now. Isn't it time to get over this mental masturbation about Running Sores and how 'cruelly' I was treated? Get on with life already."
The thing is, healing doesn't necessarily happen upon demand. Or there would be bunches of people demanding healing, maybe even curing, and getting it. Emotional healing is not much different from the physical in that regard in my opinion. From past experience after a devastating house fire, I know I have to call each thing/person by name and say what they meant to me before I will be able to let go in a real way. So there is more work to do on that score. It's okay though because I have a way to address it and a support network to help me get through it.
I am most fortunate because my support network is not limited to people in recovery. Like the inane commercial for a credit card with frills says, "I got people." This whole life thing, being a citizen of the universe and all of that, is not a simple matter of us versus them. It is not you and me against the world or people in recovery fighting with the aliens (those without a 12 step program, whether they need to be in some form of recovery or not). Nor is it any faction of the gay/lesbian/bisexual/transsexual/transgendered/intersexed/queer communities against the straights, atheists fighting the Christians or other religious groups, disabled against everyone else. Nor even those of us with atypical neurology slugging it out with the neurotypicals.
I sometimes have to remind myself of these things rather forcefully. I have to remind myself that business is business, period. That although I believe that ninety eight percent of those working in the human services field deserve to be eaten by Baba Yaga, really life cannot be reduced to black and white. Consequently, the woman from Running Sores who was at the same speaker jam that I was at yesterday had the same right to be there that I had. And I had the same right to be there that she had.
The last time I saw her was early on after my accident at the local mall. She had gotten my old job but spared no sympathy for her old boss. Hey, I lived anyway. I could obsess over the lack of support from the folks at Running Sores or I could dwell on the support that I was getting elsewhere. Traumatic brain injury has made obsessions the easier softer way and so in truth, for several years I did ruminate excessively over the idea that I did not get a get well card from the folks at Running Sores. [A friend finally sent me a Get Well card, hoping that would help. It did]. What I got from Running Sores was a form from the safety committee which asked, "How could this accident have been prevented?" I wrote down "Shoot all of the pot smokers who drive." [The man who had hit my car was high]. The lawyer was keeping close tabs on my altered states at that time so he was able to convince me to send all forms to him. Whenever I was asked about some form or other, I learned to say, "The lawyer has it. I can't understand it." That much was true. Filling out any kind of form during the first two years post-accident took about an hour and a half and resulted in colossal headaches. And my "answers" were not coherent. The lawyer put all the forms in the round file and had some assistant or other fill them out only when forced to. That is how lawyers do things.
In truth, although my nemesis was ignoring me at the speaker jam, I really didn't have much to say to her either. What could I have said? Hello, how is work? Lame. Good to see you. It wasn't. You are looking well. Like I care. By the way, yes indeed it is a traumatic brain injury just like I had told you at the mall and I am on disability and I hate VESID sucks. She isn't required to care about any of that in even the most superficial way. Just as I am not required to care about her life either.
Traumatic brain injury is a polite word for brain damage. I am brain-damaged. My life got derailed through no fault of my own (for once) four and a half years ago. And yet. The world didn't stop because my world shattered. Since the accident, I've had to deal with lots of stuff. I am not dead. I am very much alive, still breathing. Breathing is a definite plus. I can let the shoes stay on the radiator, their soles melting down into the heat. Or I can take the shoes off of the radiator, open the window to let the stench of burning rubber out, and get on with living the best way I know how.
The metaphor with the shoes bothers me. Like many metaphors that I hear in the rooms of recovery, there is no allowance for more than two ways. Either we are going forwards or we are going backwards. We are progressing in our recovery or we are headed for a fall. We are on g-d's side or we aren't. We are part of the problem or we are part of the solution. I have problems with the whole good-evil dichotomy. For quite awhile now, I've suspected it is just a neat over-simplistic way of saying good g-d-fearing folks to the right and the rest of the infidels to the left. Those of you who know the significance of the numbers 23 and 5 will understand.
The other thing that bothers me is the blending. The whole "all religions are different ways of going up the same mountain." Or "all religions are just different ways of knowing the same g-d." Or, even worse, "all religions kind of meld together." Uh, no they don't. All of the religions of the world cannot even agree on the basics. Christians say Jesus is the Son of g-d. Muslims declare that Allah didn't have a son of any sort. Jews say the Messiah didn't come yet. The Hindus and the Muslims have been fighting each other in India for years and years. Several Muslim factions are also at war. The Koran has produced believers who take on the admonishment to "Kill the infidels" quite literally. Other believers found their ways around that. The Bible has been used to justify slavery, separation of the races, oppression of women and the disabled and those of us who are not straight. And there are believers who find their way around those verses as well. The Buddhists are actually atheistic in their own right with a twist. I think I will read some more of that Richard Dawkins book along with some of the others ones laying around here. (More book reviews coming up by next week at http://sapphoqreviews.blogspot.com). All religions and cultures and peoples are not equally good nor do they all hold equal value to the survival of the humans and other stuff. Call me politically incorrect. I consider that to be a compliment.
I think about the stuff we have lost and the stuff we are losing to political correctness. Like the pot smokers who drive, lets go shoot all of the comedians. Follow that up with the hanging of bloggers and mediacs, gassing of politicians and educators. Oh, but not just the liberals who in my mind are responsible for things like the renaming of the Sambo's restaurants. Let's rid the world of the conservatives too who don't agree with the libs. Let the dems and the pubs drown together as they debate things like a New York State Law that officially makes it illegal to sell a cow which has tuberculosis. If we get rid of everyone who doesn't agree with everyone else, there would be no one left. I have gone off on another flight of fancy. Drat this brain damage.
Drat the Brain Injury Association of the United States of America which had green rubberized bracelets made up. I don't know how or why someone decided that green is the color of brain injury. Myself, I would have opted for a gray/black combination. I would not wear the bracelet when it first came out nor will I now. The bracelet says, "Mind Matters." Screw that. Scientists cannot agree on whether the mind exists at all. Oh it may and it may or may not be part of or the same as the brain or separate from the brain. Or the mind might me a figment of the imagination. No one asked me my opinion when it was time to decide what color to use or what slogan to put on the stupid rubber bracelet. My slogan, "BRAINS matter." My brain matters. The same political correctness that causes "traumatic brain injury" to be preferable to the words "brain damage," is that the reason behind picking the non-specific "mind" over the very specific "brain?"
English does not have a verb to distinguish a temporary state of being from the essence of being. In Spanish, a language whose beauty captivates me, there are two verbs that translate into the English "to be." There is ser-- a state of being which is not intrinsic to the organism. And there is estar which describes the essence of being. Thus, when I straightforwardly say at to a group of people in recovery that I was a failure at teaching I have no way of indicating that I am not claiming that failure permeates and defines me. Along comes the rationalizations. Someone's g-d didn't want them to be a famous fill-in-the-prestigious-career-of-choice. Someone else informs a small group of folks within my earshot that her definition of failure is different than mine. I can't help but wonder if this unwillingness to admit that because some of us failed at some undertakings that means that we were failures at those undertakings is a leftover from the rah-rah cheerleader self-esteem school of thought. Objectivism certainly has its' foes these days from schoolrooms to boardrooms. I owe a debt to objectivism. Objectivism actually helped me to separate my rationalizations from reality. I learned that yes indeed we are not born equal in terms of ability. I learned through objectivism to take responsibility for my actions, to examine how I contributed to my failures. I cannot push my failure at teaching in the classroom off on some higher power or even on some lower power. It was my own internal inability to ask for help that caused my downfall. So yes I failed at teaching. I was a failure as a teacher in the classroom. Those of you who protest that have never seen me with a group of children as I struggled with the expectation that I keep some sort of order and impose some discipline. I was a failure at teaching-- ser. I am not the totality of failure-- estar.
Even when my brain damage a.k.a. traumatic brain injury has made communication difficult, I know that for example the failure of VESID sucks to adequately serve me is also partially my failure as well. The folks at Running Sores were conducting business as usual after my accident, probably in accordance with legal advice. Brain injuries are expensive. Their insurance company didn't want to get stuck with my medical bills just as my automobile insurance company didn't want to get stuck with my medical bills. Business is business. I don't have to personalize any of it. I didn't understand that back in the early days after my accident when I was sleeping for twenty hours a day. I can understand it now. I am not who I used to be. Even my taste in reading material has changed. I am not who I was going to be-- would have been today if the accident hadn't happened. I am certainly not better off. Spare me.
I am who I am. And regardless of the attitudes and actions of people and agencies around me, I know that I am going to keep striving.
sapphoq healing t.b.i.
Labels: recovery, t.b.i., tbi, traumatic+brain+injury, treatment, VESID sucks
¶ 10:30 PM 0 comments links to this post
Wednesday, May 28, 2008
Stuff that annoys me, stuff I am happy about
A list in no particular order inspired by a blogger who wrote a list of how to annoy an aspie. Unfortunately, I can't find the link to that particular post at the moment. When/if I do, I will add it.
If you have a brain injury and not all of the stuff on my list annoys you, that is okay.
Write your own wish if you want to.
If you don't have a brain injury and not all of the stuff/most of the stuff on my list annoys you, that is probably okay. Write your own. I don't have the monopoly on being annoyed and some of the stuff mentioned here is not specific to folks with disabilities.
So here goes:
1. "Oh yeah, I have that too." Unless you also have atypical neurology, NO YOU DON'T.
2. Repetitive forms.
3. Too loud, too bright, too scratchy.
4. The world requires multi-tasking for almost everything. My ability to multi-task has shit the bed and ain't coming back.
5. Cognitive art therapists who claim to have degrees from "schools" which are suspected of being diploma mills and reported as such when Googled.
6. Anyone who insists that said cognitive art therapists are loved by gazillions of fans. That whole being loved thing is the emotional stance of infants.
7. Medical doctors who do not listen.
8. Expressive aphasia sucks.
9. "You are a person WITH a traumatic brain injury." No asshole, I have a t.b.i.
10. Referring to t.b.i.-ers or survivors of t.b.i. as t.b.i.s. Uh, hello. We are not our labels. We are not alcoholism, broken legs, or brain injuries. [See number nine.]
11. VESID. VESID sucks. [VESID is called o.v.r. in other states.] And by the way any vocational rehabilitation counselors who may have stumbled across this post, disabled people do NOT spend all of their time home watching television. Even people with developmental disabilities do NOT spend all of their free time home watching television. Your sheltered workshops are a modern form of slave labor and an abomination.
12. Being talked down to by professional "helpers" who don't help.
13. Dealing with the mail order pharmacy.
14. Fatigue.
15. A body that does not bend due to neurology.
16. Inadequate pain management.
17. "The brain rewires itself." Yep, it does. The result is a dirt road where high speed freeways used to exist. And when the neurons don't connect up correctly, say hello to permanent central nervous system tremor.
18. There is a reason why I am not working. Not working does NOT obligate me to be your fetch and step. If I felt well enough to do you all those favors you seem to think I am capable of doing for you, I would be working. So bugger off.
19. Perception problems and visual disturbances getting in the way of a variety of activities.
20. Happy happy joy joy 12 step people who assure me that their g-d wanted this to happen to me as part of some masterful plan. Please take your mental masturbations elsewhere. I have enough of my own.
21. Automatic assumptions that my anger is somehow bad or dysfunction and needs healing. When I want your opinion, I will ask you. And besides, you are not my shrink.
22. Unclear directions.
23. Not enough help to do the things that I can no longer do.
24. A-motivational syndrome-- mine.
25. A social security disability system which denies disability to those of us who have worked all of our adult lives and now can't as well as to people who are on chemo for crying out loud. Along with worker's comp and "no fault" [we ain't paying cuz it ain't our fault] auto insurance companies, health maintenance organizations, and in laws.
***
Stuff I am happy about: being alive, being abstinent, my friends, my family, my dog, my cats, my frogs, the stuff inside of me that enables me to keep striving.
sapphoq healing t.b.i.
If you have a brain injury and not all of the stuff on my list annoys you, that is okay.
Write your own wish if you want to.
If you don't have a brain injury and not all of the stuff/most of the stuff on my list annoys you, that is probably okay. Write your own. I don't have the monopoly on being annoyed and some of the stuff mentioned here is not specific to folks with disabilities.
So here goes:
1. "Oh yeah, I have that too." Unless you also have atypical neurology, NO YOU DON'T.
2. Repetitive forms.
3. Too loud, too bright, too scratchy.
4. The world requires multi-tasking for almost everything. My ability to multi-task has shit the bed and ain't coming back.
5. Cognitive art therapists who claim to have degrees from "schools" which are suspected of being diploma mills and reported as such when Googled.
6. Anyone who insists that said cognitive art therapists are loved by gazillions of fans. That whole being loved thing is the emotional stance of infants.
7. Medical doctors who do not listen.
8. Expressive aphasia sucks.
9. "You are a person WITH a traumatic brain injury." No asshole, I have a t.b.i.
10. Referring to t.b.i.-ers or survivors of t.b.i. as t.b.i.s. Uh, hello. We are not our labels. We are not alcoholism, broken legs, or brain injuries. [See number nine.]
11. VESID. VESID sucks. [VESID is called o.v.r. in other states.] And by the way any vocational rehabilitation counselors who may have stumbled across this post, disabled people do NOT spend all of their time home watching television. Even people with developmental disabilities do NOT spend all of their free time home watching television. Your sheltered workshops are a modern form of slave labor and an abomination.
12. Being talked down to by professional "helpers" who don't help.
13. Dealing with the mail order pharmacy.
14. Fatigue.
15. A body that does not bend due to neurology.
16. Inadequate pain management.
17. "The brain rewires itself." Yep, it does. The result is a dirt road where high speed freeways used to exist. And when the neurons don't connect up correctly, say hello to permanent central nervous system tremor.
18. There is a reason why I am not working. Not working does NOT obligate me to be your fetch and step. If I felt well enough to do you all those favors you seem to think I am capable of doing for you, I would be working. So bugger off.
19. Perception problems and visual disturbances getting in the way of a variety of activities.
20. Happy happy joy joy 12 step people who assure me that their g-d wanted this to happen to me as part of some masterful plan. Please take your mental masturbations elsewhere. I have enough of my own.
21. Automatic assumptions that my anger is somehow bad or dysfunction and needs healing. When I want your opinion, I will ask you. And besides, you are not my shrink.
22. Unclear directions.
23. Not enough help to do the things that I can no longer do.
24. A-motivational syndrome-- mine.
25. A social security disability system which denies disability to those of us who have worked all of our adult lives and now can't as well as to people who are on chemo for crying out loud. Along with worker's comp and "no fault" [we ain't paying cuz it ain't our fault] auto insurance companies, health maintenance organizations, and in laws.
***
Stuff I am happy about: being alive, being abstinent, my friends, my family, my dog, my cats, my frogs, the stuff inside of me that enables me to keep striving.
sapphoq healing t.b.i.
Labels: a.b.i., accessibility, acquired+brain+injury, tbi, traumatic+brain+injury
¶ 2:45 AM 0 comments links to this post
Wednesday, February 06, 2008
Making Work Work
"Even in the future, nothing works!" -Dark Helmet in the movie Spaceballs
A job interview today. For a job for which before my car accident I was considered to be overqualified for. I interviewed well, she told me. She enjoyed talking to me. It lasted an hour. She said she was leaving for vacation and did not wish to leave me hanging. She would discuss with personnel and tell them to go ahead and have me interview with other people.
Damn this brain injury. Damn these feet, the vision, the inability to multi-task, the bad back.
Her concern-- the position is a third shift and take-downs would surely be involved. Could I do them now? The job is very physical. That was her concern. And it is a legitimate one.
The only thing I could say in response was yes that is a valid concern however (insert words that mean I am one determined mutherfrucker no matter what and that I can learn anything I need to learn) and perhaps I would need some extra practice with the other two staffers that I would be working with...their styles...all of that. What I didn't tell her is that I've always hated doing SKIP-R. I hated doing two-person escorts at my last job the few times I had to. And I didn't tell her about the vertigo even after being asked specifically about all of the t.b.i. crap
and complications and residual effects.
The fairly useless job handler claims she will go in tomorrow to get me those follow-alongs (in the other three departments) that the moronic VESID folks funded me for. "VESID won't support any jobs that are not within your limitations," the job handler tells me. She is young enough to have a MySpace page as her main blog, complete with an exaggerated description of her profession. And stupid enough for her user name to be the same as her legal name.
(Yes I have a MySpace page too, however it is primarily to keep up with heathen
news that a friend publishes there.)
Has she even read the list of limitations from various doctors? One of them says 15 hours a week. I'm guessing that the morons from VESID skipped over that one too. Too inconvenient. It would require a filing of a form to get an exception for the usual requirement of "must be able to work at least 20 hours a week." No overhead reaching. No lifting over 10 pounds. Avoid night driving. No carrying loose things downstairs. There's a bunch of them, along with bunches of diagnoses from various doctors of things all related to my brain injury, or made worse by my brain injury. I specifically pointed out the limitations to her several times. The civil service job she told me about today was for being a corrections officer for crying out loud. I wanted to bang my head against the wall after that revelation. I already have diagnosable brain damage (yes folks, traumatic brain injury is a polite word for brain damage) so I resisted the impulse.
Bits of depression threaten to rain down on me. Time to keep going. Routine helps. E-mail, blogging, and cognitive work tonight. Drug court tomorrow with a friend's daughter and keep putting in those applications. I won't stop with that until a job offer comes through. Walk with the dog. Practice walking on uneven ground with the dog. Housework would be a good thing. Water the plants before death ensues. Do the next clean thing. You drink, you drug, you die. A line from a rehab movie I saw once during my torturous time tutoring adolescents. I prefer adolescents in groups of one. Huge problem. There were 26 of them. But I stuck it out for my obligatory 3 years before beating feet out of there. The money wasn't worth it.
And fuck VESID. It would be nice to have their support (i.e. job coach) on a job however if that becomes "not able to happen by golly because whatever job violates some limitation or other" I'm going to go to work anyways. Even if it means working at the local Walmart as a tire-changer and an oil-changer. Even if it means using a fricking cart to bring the tire to the car.
The local Walmart is so desperate for help that I have an interview to do that on Monday. "Did you apply to be a mechanic by mistake?" the woman asked me on the phone after she found out that I never done either. "No," I told her, "I applied for all of the positions. I am willing to learn whatever you or someone wishes to teach me." Then I heard, "Oh well that is really hard work and blah blah blah I will call you back when there is a service writer position open and blah blah blah." She called me back an hour and a half later. That interview was supposed to be tomorrow but she changed it to Monday. That's okay. I haven't run out of places to apply to.
Because I am going to work this year. Even if it means missing the week in Maine with my husband this summer and the week visiting my friend Philly Dave this summer. I am going to work this year. I am going to work this year no matter what. If nothing in the future works, then I am going to make it work or beat it beyond recognition in my endeavor.
sapphoq healing t.b.i.
A job interview today. For a job for which before my car accident I was considered to be overqualified for. I interviewed well, she told me. She enjoyed talking to me. It lasted an hour. She said she was leaving for vacation and did not wish to leave me hanging. She would discuss with personnel and tell them to go ahead and have me interview with other people.
Damn this brain injury. Damn these feet, the vision, the inability to multi-task, the bad back.
Her concern-- the position is a third shift and take-downs would surely be involved. Could I do them now? The job is very physical. That was her concern. And it is a legitimate one.
The only thing I could say in response was yes that is a valid concern however (insert words that mean I am one determined mutherfrucker no matter what and that I can learn anything I need to learn) and perhaps I would need some extra practice with the other two staffers that I would be working with...their styles...all of that. What I didn't tell her is that I've always hated doing SKIP-R. I hated doing two-person escorts at my last job the few times I had to. And I didn't tell her about the vertigo even after being asked specifically about all of the t.b.i. crap
and complications and residual effects.
The fairly useless job handler claims she will go in tomorrow to get me those follow-alongs (in the other three departments) that the moronic VESID folks funded me for. "VESID won't support any jobs that are not within your limitations," the job handler tells me. She is young enough to have a MySpace page as her main blog, complete with an exaggerated description of her profession. And stupid enough for her user name to be the same as her legal name.
(Yes I have a MySpace page too, however it is primarily to keep up with heathen
news that a friend publishes there.)
Has she even read the list of limitations from various doctors? One of them says 15 hours a week. I'm guessing that the morons from VESID skipped over that one too. Too inconvenient. It would require a filing of a form to get an exception for the usual requirement of "must be able to work at least 20 hours a week." No overhead reaching. No lifting over 10 pounds. Avoid night driving. No carrying loose things downstairs. There's a bunch of them, along with bunches of diagnoses from various doctors of things all related to my brain injury, or made worse by my brain injury. I specifically pointed out the limitations to her several times. The civil service job she told me about today was for being a corrections officer for crying out loud. I wanted to bang my head against the wall after that revelation. I already have diagnosable brain damage (yes folks, traumatic brain injury is a polite word for brain damage) so I resisted the impulse.
Bits of depression threaten to rain down on me. Time to keep going. Routine helps. E-mail, blogging, and cognitive work tonight. Drug court tomorrow with a friend's daughter and keep putting in those applications. I won't stop with that until a job offer comes through. Walk with the dog. Practice walking on uneven ground with the dog. Housework would be a good thing. Water the plants before death ensues. Do the next clean thing. You drink, you drug, you die. A line from a rehab movie I saw once during my torturous time tutoring adolescents. I prefer adolescents in groups of one. Huge problem. There were 26 of them. But I stuck it out for my obligatory 3 years before beating feet out of there. The money wasn't worth it.
And fuck VESID. It would be nice to have their support (i.e. job coach) on a job however if that becomes "not able to happen by golly because whatever job violates some limitation or other" I'm going to go to work anyways. Even if it means working at the local Walmart as a tire-changer and an oil-changer. Even if it means using a fricking cart to bring the tire to the car.
The local Walmart is so desperate for help that I have an interview to do that on Monday. "Did you apply to be a mechanic by mistake?" the woman asked me on the phone after she found out that I never done either. "No," I told her, "I applied for all of the positions. I am willing to learn whatever you or someone wishes to teach me." Then I heard, "Oh well that is really hard work and blah blah blah I will call you back when there is a service writer position open and blah blah blah." She called me back an hour and a half later. That interview was supposed to be tomorrow but she changed it to Monday. That's okay. I haven't run out of places to apply to.
Because I am going to work this year. Even if it means missing the week in Maine with my husband this summer and the week visiting my friend Philly Dave this summer. I am going to work this year. I am going to work this year no matter what. If nothing in the future works, then I am going to make it work or beat it beyond recognition in my endeavor.
sapphoq healing t.b.i.
Labels: employment, t.b.i., tbi, traumatic+brain+injury, VESID
¶ 10:15 PM 0 comments links to this post
Monday, January 21, 2008
Total Aggravation
I got accepted into a 55b/c program which basically means that I may be able to get a (real) State job with accommodations. The shrink (who is well acquainted with more than drugging people to death and is actually keeping track of what is happening with my traumatic brain injury (from a car accident); and who is familiar with the program) tells me this is my best bet for getting employment after being out of work for four years due to my car accident. I don't just want any old job where the chances are high that the salary will be not enough for me to live on and that I will get fired. I can't multi-task at all anymore. I wasn't really good at it but now any ability I had to multi-task is totally dead. I want a job coach to assist me during the first couple of months or so at the State job which I haven't gotten yet. This has been my plan since I first heard about this 55b/c program.
(VESID is OVR in other places but in New York State it is called VESID).
I told the VESID "counselor" (third in less than three years) this. Apparently, the paperwork, my suppos-ed Individualized Employment Plan-- which took a couple years in the making because I had refused to go to their favored agency connected with the sheltered workshop for job coaching services-- requires a specific job goal. Fine. A couple of months ago, I rattled off several job choices so that way just maybe I could finally get to the agency of my choice to arrange for job coaching.
I finally got to meet with the job handler who then would assist me in helping me find a job. Again, I repeated myself by telling her that I want to get a job with the State via the 55b/c program. (She has never heard of said program). Again, the suppos-ed Individualized Employment Plan requires a specific job to fill in the blank. "Working for the State" is not adequate. The job handler changes the job goal from "animal care technician" to a state job title. This requires the VESID "counselor" to rewrite the I.E.P. but I don't care about that.
During the meeting with the job handler, I learn that VESID approved my request for job trials. A job trial means I would get to follow someone on a job for a couple of hours to see if I could possibly stand doing a job like that one. I am approved for 15 hours. 5 for the job handler to set up a few. 10 for me to actually shadow people on several jobs. I tell the job handler very clearly that I had asked for this and that I want this. This was in December. Okay.
Now it is January. The job handler assumes the role of a nag. She calls me with a lead for a full-time job in the newspaper-- one that would require extensive multi-tasking but no matter. Note full-time. (My plan has been to start part-time to see if my fatigue level will allow me to work up to full-time. I can do this at the State with accommodations under the 55b/c program. (My aunt is the one who is actually helping me regain some stamina because the professionals do not understand how freaking tired I am from the brain injury. I am glad that my aunt is working with me on this because no one else is). I am a bit aggravated but that's okay. I decide to go to the Job Service place which is part of unemployment because they will re-vamp my resume for free. The job handler is nagging me to go there to look for work.
Now it is several days and a weekend later. I am leaving for my appointment with the shrink. I get a letter in the mail from the job handler. It is an advert for a "job fair" listing several full-time positions with an agency and a note advising me to attend said job fair if I am interested in any of these jobs. (The jobs happen to be in direct care with people living in group homes and I cannot lift due to my spinal injuries {car accident}. All of these things are documented in my records which both VESID and the job handler have. But no matter. The job fair ended shortly before the postman came with the letter.
This is January. There is no longer any talk of job trials. There is no acknowledgment by the job handler that I am endeavoring to get a State job at which time a job coach might be useful. I go see the shrink after the mail comes. I determine that I am going to call the 55b/c program people to find out if there is anything I can do to help them get me a State job. The shrink says they are just supposed to find me one and I don't really have to do anything except wait. An acquaintance who had gotten accepted for 55b/c last year in fact was offered a job some time later without having to do anything. Still, I think that sending them a new fancy resume and talking to them on the phone might be a good idea.
VESID's whole focus is to get me working ASAP and it doesn't matter about what is best for me. And VESID in the region where I live is the worst one in this state.
I would tell VESID and the job handler to bugger off except that if I quit VESID, the delayed review of my disability would then take place. I can't afford to lose disability right now unless I am working and able to maintain the full-time thing. My mate is totally obsessed with money and thinks I should have magically gone back to who I was before my car accident several years ago so there is that. My good friend keeps pushing me to get jobs at various places where I know I just can't do it. (For example-- a bilingual staff at a telephone hotline for tax help. Problem. I can write Spanish better than I can read it and read it far better than I can speak it. My voice is too soft to be effective on the phone, I can't multi-task, and people who speak Spanish tell me they cannot understand me and I am butchering their language). My primary care doctor thinks I should have gone back to work full-time two weeks after my car accident and the last two times I saw him, I got a bit angry when he asked me, "So, where are you working now?"
I have determined my course of action and I am taking steps toward my goal. I even have a plan B in case the 55b/c program can't come up with a state job for me in the three years allotted for this before I would have to apply again.
I feel like the people around me (except for my aunt and the shrink) are all nagging me to hurry up, go to work full-time and forget about what I want to do. Additionally, the people around me (except for my aunt and the shrink) are acting as if I am nuts and they are the sane ones. My fatigue is real. I am not a faker or a poser. The last several years have been really really taxing to say the least. I now have sleep apnea (I love my c-pap machine and before that, I felt like I was sleepwalking through life) and supposedly I now have "hypertensive heart disease, undifferentiated, without hypertension" (a gift from the pc doc and I may have to go on a cholesterol-lowering drug if the diet hasn't done enough. I've had untreated high cholesterol for seven years now because my good cholesterol is really really high. After awhile, the good cholesterol can stop being as effective and then a script has to be given). I have the fibro-related aches and pains which I treat with exercise. The brain fatigue which I treat with extra sleep. The cognitive difficulties which I keep doing the computer exercises for. And a bunch of people who are nagging me who I keep trying to ignore. Because trying to explain to them my Plan A and Plan B hasn't worked.
If there is anything that I am not perceiving here, please tell me.
Thanks,
spike
I got accepted into a 55b/c program which basically means that I may be able to get a (real) State job with accommodations. The shrink (who is well acquainted with more than drugging people to death and is actually keeping track of what is happening with my traumatic brain injury (from a car accident); and who is familiar with the program) tells me this is my best bet for getting employment after being out of work for four years due to my car accident. I don't just want any old job where the chances are high that the salary will be not enough for me to live on and that I will get fired. I can't multi-task at all anymore. I wasn't really good at it but now any ability I had to multi-task is totally dead. I want a job coach to assist me during the first couple of months or so at the State job which I haven't gotten yet. This has been my plan since I first heard about this 55b/c program.
(VESID is OVR in other places but in New York State it is called VESID).
I told the VESID "counselor" (third in less than three years) this. Apparently, the paperwork, my suppos-ed Individualized Employment Plan-- which took a couple years in the making because I had refused to go to their favored agency connected with the sheltered workshop for job coaching services-- requires a specific job goal. Fine. A couple of months ago, I rattled off several job choices so that way just maybe I could finally get to the agency of my choice to arrange for job coaching.
I finally got to meet with the job handler who then would assist me in helping me find a job. Again, I repeated myself by telling her that I want to get a job with the State via the 55b/c program. (She has never heard of said program). Again, the suppos-ed Individualized Employment Plan requires a specific job to fill in the blank. "Working for the State" is not adequate. The job handler changes the job goal from "animal care technician" to a state job title. This requires the VESID "counselor" to rewrite the I.E.P. but I don't care about that.
During the meeting with the job handler, I learn that VESID approved my request for job trials. A job trial means I would get to follow someone on a job for a couple of hours to see if I could possibly stand doing a job like that one. I am approved for 15 hours. 5 for the job handler to set up a few. 10 for me to actually shadow people on several jobs. I tell the job handler very clearly that I had asked for this and that I want this. This was in December. Okay.
Now it is January. The job handler assumes the role of a nag. She calls me with a lead for a full-time job in the newspaper-- one that would require extensive multi-tasking but no matter. Note full-time. (My plan has been to start part-time to see if my fatigue level will allow me to work up to full-time. I can do this at the State with accommodations under the 55b/c program. (My aunt is the one who is actually helping me regain some stamina because the professionals do not understand how freaking tired I am from the brain injury. I am glad that my aunt is working with me on this because no one else is). I am a bit aggravated but that's okay. I decide to go to the Job Service place which is part of unemployment because they will re-vamp my resume for free. The job handler is nagging me to go there to look for work.
Now it is several days and a weekend later. I am leaving for my appointment with the shrink. I get a letter in the mail from the job handler. It is an advert for a "job fair" listing several full-time positions with an agency and a note advising me to attend said job fair if I am interested in any of these jobs. (The jobs happen to be in direct care with people living in group homes and I
This is January. There is no longer any talk of job trials. There is no acknowledgment by the job handler that I am endeavoring to get a State job at which time a job coach might be useful. I go see the shrink after the mail comes. I determine that I am going to call the 55b/c program people to find out if there is anything I can do to help them get me a State job. The shrink says they are just supposed to find me one and I don't really have to do anything except wait. An acquaintance who had gotten accepted for 55b/c last year in fact was offered a job some time later without having to do anything. Still, I think that sending them a new fancy resume and talking to them on the phone might be a good idea.
VESID's whole focus is to get me working ASAP and it doesn't matter about what is best for me. And VESID in the region where I live is the worst one in this state.
I would tell VESID and the job handler to bugger off except that if I quit VESID, the delayed review of my disability would then take place. I can't afford to lose disability right now unless I am working and able to maintain the full-time thing. My mate is totally obsessed with money and thinks I should have magically gone back to who I was before my car accident several years ago so there is that. My good friend keeps pushing me to get jobs at various places where I know I just can't do it. (For example-- a bilingual staff at a telephone hotline for tax help. Problem. I can write Spanish better than I can read it and read it far better than I can speak it. My voice is too soft to be effective on the phone, I can't multi-task, and people who speak Spanish tell me they cannot understand me and I am butchering their language). My primary care doctor thinks I should have gone back to work full-time two weeks after my car accident and the last two times I saw him, I got a bit angry when he asked me, "So, where are you working now?"
I have determined my course of action and I am taking steps toward my goal. I even have a plan B in case the 55b/c program can't come up with a state job for me in the three years allotted for this before I would have to apply again.
I feel like the people around me (except for my aunt and the shrink) are all nagging me to hurry up, go to work full-time and forget about what I want to do. Additionally, the people around me (except for my aunt and the shrink) are acting as if I am nuts and they are the sane ones. My fatigue is real. I am not a faker or a poser. The last several years have been really really taxing to say the least. I now have sleep apnea (I love my c-pap machine and before that, I felt like I was sleepwalking through life) and supposedly I now have "hypertensive heart disease, undifferentiated, without hypertension" (a gift from the pc doc and I may have to go on a cholesterol-lowering drug if the diet hasn't done enough. I've had untreated high cholesterol for seven years now because my good cholesterol is really really high. After awhile, the good cholesterol can stop being as effective and then a script has to be given). I have the fibro-related aches and pains which I treat with exercise. The brain fatigue which I treat with extra sleep. The cognitive difficulties which I keep doing the computer exercises for. And a bunch of people who are nagging me who I keep trying to ignore. Because trying to explain to them my Plan A and Plan B hasn't worked.
If there is anything that I am not perceiving here, please tell me.
Thanks,
spike
Labels: employment, t.b.i., tbi, traumatic+brain+injury, VESID
¶ 2:30 AM 0 comments links to this post
Saturday, January 12, 2008
Drunken Principal Principles 1/12/07
An Indiana school principal, Scott Syverson, was stopped on December 22, 2007 by an officer. Dr. Syverson was drunk. The police officer was told to use his discretion, so he elected to have the principal driven home rather than arresting him. A prosecutor later fixed that by filing charges. The principal is currently on administrative leave until sometime in February when the school board will meet.
Of note particularly is this letter written by Lorrie Bjornstad about what could have happened:
http://www.indystar.com/apps/pbcs.dll/article?AID=/20080112/OPINION01/801120386/-1/LOCAL17
but didn't. Well, it did happen to her daughter. Although Principal Scott Syverson was not the cause of her daughter's traumatic brain injury, he could have been. The driver who did was also intoxicated and also drove that way after a party celebrating the beginning of Christmas/Winter vacation.
(The school board member who had hosted the party that Dr. Syverson attended has said that he did not appear to be impaired upon leaving her home-- self-serving interest? perhaps. The official trouble was that he and two other buddies had gone on to a pub and stayed there for two more hours. Regardless of where he was when his blood alcohol level rose above what is allowed by the State of Indiana, the point remains. Dude was drunk. Dude could have gifted Lorrie Bjorstad's daughter with her t.b.i.)
Dr. Scott Syverson should suffer the consequences of his actions legally; and professionally depending upon the policies of the school board. Additionally, he should be required to get treatment before resuming any duties at any school in the state in any capacity. There should be no extra punishment or no lesser punishment than that afforded to anyone else caught driving drunk.
Having the "disease" of alcoholism or any other addiction-- sorry disease concept fans. I am an old diehard who maintains that it is a condition-- should not be used to excuse bad behavior, period. I fully support Drug Court because there are specific stringent requirements which must be met there and participants have a real chance of turning their lives around. I hope that the principal winds up in a drug court program after serving some jail time and I hope that his being a prominent public figure in his town will not interfere with any consequences of his actions.
Active addiction sucks. Having to live with a traumatic brain injury also sucks.
It's "nice" I suppose that some students are circulating a petition in support of their principal. My sympathies are not with the principal. My sympathies lie with every victim of every driver who has gotten behind the wheel of any transport vehicle while drunk or high or both. Some of us live. Some of us die. Some of us live and our lives and brains are forever changed.
sapphoq healing t.b.i.
Of note particularly is this letter written by Lorrie Bjornstad about what could have happened:
http://www.indystar.com/apps/pbcs.dll/article?AID=/20080112/OPINION01/801120386/-1/LOCAL17
but didn't. Well, it did happen to her daughter. Although Principal Scott Syverson was not the cause of her daughter's traumatic brain injury, he could have been. The driver who did was also intoxicated and also drove that way after a party celebrating the beginning of Christmas/Winter vacation.
(The school board member who had hosted the party that Dr. Syverson attended has said that he did not appear to be impaired upon leaving her home-- self-serving interest? perhaps. The official trouble was that he and two other buddies had gone on to a pub and stayed there for two more hours. Regardless of where he was when his blood alcohol level rose above what is allowed by the State of Indiana, the point remains. Dude was drunk. Dude could have gifted Lorrie Bjorstad's daughter with her t.b.i.)
Dr. Scott Syverson should suffer the consequences of his actions legally; and professionally depending upon the policies of the school board. Additionally, he should be required to get treatment before resuming any duties at any school in the state in any capacity. There should be no extra punishment or no lesser punishment than that afforded to anyone else caught driving drunk.
Having the "disease" of alcoholism or any other addiction-- sorry disease concept fans. I am an old diehard who maintains that it is a condition-- should not be used to excuse bad behavior, period. I fully support Drug Court because there are specific stringent requirements which must be met there and participants have a real chance of turning their lives around. I hope that the principal winds up in a drug court program after serving some jail time and I hope that his being a prominent public figure in his town will not interfere with any consequences of his actions.
Active addiction sucks. Having to live with a traumatic brain injury also sucks.
It's "nice" I suppose that some students are circulating a petition in support of their principal. My sympathies are not with the principal. My sympathies lie with every victim of every driver who has gotten behind the wheel of any transport vehicle while drunk or high or both. Some of us live. Some of us die. Some of us live and our lives and brains are forever changed.
sapphoq healing t.b.i.
Labels: addiction, alcoholism, consequences, drunk, high, t.b.i., tbi, traumatic+brain+injury, treatment
¶ 11:48 PM 0 comments links to this post
Wednesday, December 26, 2007
Brain Injuries and P.T.S.D. 12/25/07
Several articles have cropped up declaring that brain injuries "cure" Post Traumatic Stress Disorder. In reading through them, I found that what they meant to say is that brain injuries demonstrated in either of two specific areas of the brains of research subjects lessen the incidence of P.T.S.D. The two areas are the amygdala and the vmPFC or the ventromedial prefrontal cortex. The research results reported are actually fairly impressive. Folks with insults to the amygdala had zero incidence of P.T.S.D. And only 18% of folks with insults to the vmPFC developed P.T.S.D.
No one is planning to go out and deliberately inflict brain injuries upon those with P.T.S.D. The idea of surgery to insert clips to dull activity in one or both areas is rather uninviting. Use of magnetic stuff is more palatable but also more suspect as junk science.
Nothing reported over on Medscape yet so it is too early for me to get excited.
sapphoq healing t.b.i.
http://www.washingtonpost.com/wp-dyn/content/article/2007/12/23/AR2007122300601.html
http://www.sciencedaily.com/releases/2007/12/071224124639.htm
http://timesofindia.indiatimes.com/Brain_injury_may_be_a_cure_for_PTSD/
articleshow/2647593.cms
http://www.guardian.co.uk/science/2007/dec/24/medicalresearch.neuroscience
No one is planning to go out and deliberately inflict brain injuries upon those with P.T.S.D. The idea of surgery to insert clips to dull activity in one or both areas is rather uninviting. Use of magnetic stuff is more palatable but also more suspect as junk science.
Nothing reported over on Medscape yet so it is too early for me to get excited.
sapphoq healing t.b.i.
http://www.washingtonpost.com/wp-dyn/content/article/2007/12/23/AR2007122300601.html
http://www.sciencedaily.com/releases/2007/12/071224124639.htm
http://timesofindia.indiatimes.com/Brain_injury_may_be_a_cure_for_PTSD/
articleshow/2647593.cms
http://www.guardian.co.uk/science/2007/dec/24/medicalresearch.neuroscience
Labels: a.b.i., acquired brain injury, p.t.s.d., t.b.i., tbi, traumatic+brain+injury, treatment
¶ 12:22 AM 0 comments links to this post
Friday, November 30, 2007
Circle Work with Insects
I have been thinking about stealing spiritual practices from other cultures, particularly [in the Untied States] the indigenous tribes of the Americas. There are new agers, white lighters, wiccans, and some folks who don't know what else to do with their money who are all souped up on shamanism, medicine circles, and other practices which they believe to be the real thing. And because there is an average of a sucker born every minute, there are lots of grown up suckers willing to part with their hard-earned cash to go on vision quests. And there is a market for those glossy slick-backed "Medicine Cards" with the nice drawings of Bear and Shells and stuff on them.
Awhile back, I posted to an e-group which I no longer belong to asking about how come no one ever claims the cockroach as their special animal. Everyone wants wolves, lions, tigers, bears, eagles, buffaloes, deer, frog. But absolutely no one wants to have any sort of spiritual relationship with a cockroach. The cockroach is the most successful evolutionary experiment, able to adapt under a myriad of conditions, and quite the traveler too. The spiritually bent should be fasting and begging for Cockroach to be their power insect or totem animal. But alas, not.
Now and again, there are folks who assign mythical beasties to the four cardinal directions or elements in a working circle. Dragons and unicorns abound, right along with the more traditional undines and salamanders. Phoenix and sirens, gargoyles and mermaids yet nary a real insect is noted.
For those who are so inclined, I present the Circle of Insects!
earth: deer tick, cockroach, wood bee, head louse, termite, house fly, ground killer wasp
air: flea, white-faced hornet, pubic crab, fruit fly, horse fly, jumping spider, hover fly
fire: firefly, honey bee, wasp, sweat bee, fire ant, red ant, scorpion
water: skate, diving beetle, mosquito, springtail, noctuid moth, leech, stone fly
sapphoq healing t.b.i.
I have been thinking about stealing spiritual practices from other cultures, particularly [in the Untied States] the indigenous tribes of the Americas. There are new agers, white lighters, wiccans, and some folks who don't know what else to do with their money who are all souped up on shamanism, medicine circles, and other practices which they believe to be the real thing. And because there is an average of a sucker born every minute, there are lots of grown up suckers willing to part with their hard-earned cash to go on vision quests. And there is a market for those glossy slick-backed "Medicine Cards" with the nice drawings of Bear and Shells and stuff on them.
Awhile back, I posted to an e-group which I no longer belong to asking about how come no one ever claims the cockroach as their special animal. Everyone wants wolves, lions, tigers, bears, eagles, buffaloes, deer, frog. But absolutely no one wants to have any sort of spiritual relationship with a cockroach. The cockroach is the most successful evolutionary experiment, able to adapt under a myriad of conditions, and quite the traveler too. The spiritually bent should be fasting and begging for Cockroach to be their power insect or totem animal. But alas, not.
Now and again, there are folks who assign mythical beasties to the four cardinal directions or elements in a working circle. Dragons and unicorns abound, right along with the more traditional undines and salamanders. Phoenix and sirens, gargoyles and mermaids yet nary a real insect is noted.
For those who are so inclined, I present the Circle of Insects!
earth: deer tick, cockroach, wood bee, head louse, termite, house fly, ground killer wasp
air: flea, white-faced hornet, pubic crab, fruit fly, horse fly, jumping spider, hover fly
fire: firefly, honey bee, wasp, sweat bee, fire ant, red ant, scorpion
water: skate, diving beetle, mosquito, springtail, noctuid moth, leech, stone fly
sapphoq healing t.b.i.
Labels: cognition, pagan, t.b.i., tbi, traumatic+brain+injury
¶ 12:28 AM 2 comments links to this post
Thursday, November 22, 2007
Job Ideas for spike q. poet
*Disclaimer: not necessarily approved of by the local unimaginative VESID/O.V.R. office*
1. Grow hissing cockroaches, crickets, and earthworms-- may distress lover.
2. Photograph frogs.
3. Breed frogs-- too technical. Apparently frogs in captivity can't figure out how to do it without
human intervention.
4. Rescue unwanted or hurt amphibians-- lover thinks fifteen frogs are enough.
5. Raise llamas--- may really distress lover.
6. Trail guide and llama trekking-- requires llamas.
7. Breed snakes-- lover will move out.
8. Receptionist at very quiet office with no telephone lines.
9. Starving artist-writer.
10. Inspirational speaker.
11. Career coaching.
12. Have year round yard sales.
13. Sell things on the web-- requires things that people will want to buy.
14. Drive a truck-- spinal problems will rebel.
15. Teacher's aide-- hate kids in groups of more than one.
16. Landlord-- been there, done that, ain't doing that to myself again.
17. Event planner-- poor organizational skills.
18. Be a clown or stand-up comic.
19. Start a new religion-- bad karma.
20. Grow flowers in a greenhouse-- requires greenhouse.
21. Professional poker player.
22. Raise corn, hay, and other stuff-- requires farm.
23. Own a human services agency-- would rather manually shovel cow shit.
24. Restaurant hostess at a very slow restaurant.
25. Cook at a small diner-- people will die.
sapphoq healing t.b.i.
1. Grow hissing cockroaches, crickets, and earthworms-- may distress lover.
2. Photograph frogs.
3. Breed frogs-- too technical. Apparently frogs in captivity can't figure out how to do it without
human intervention.
4. Rescue unwanted or hurt amphibians-- lover thinks fifteen frogs are enough.
5. Raise llamas--- may really distress lover.
6. Trail guide and llama trekking-- requires llamas.
7. Breed snakes-- lover will move out.
8. Receptionist at very quiet office with no telephone lines.
9. Starving artist-writer.
10. Inspirational speaker.
11. Career coaching.
12. Have year round yard sales.
13. Sell things on the web-- requires things that people will want to buy.
14. Drive a truck-- spinal problems will rebel.
15. Teacher's aide-- hate kids in groups of more than one.
16. Landlord-- been there, done that, ain't doing that to myself again.
17. Event planner-- poor organizational skills.
18. Be a clown or stand-up comic.
19. Start a new religion-- bad karma.
20. Grow flowers in a greenhouse-- requires greenhouse.
21. Professional poker player.
22. Raise corn, hay, and other stuff-- requires farm.
23. Own a human services agency-- would rather manually shovel cow shit.
24. Restaurant hostess at a very slow restaurant.
25. Cook at a small diner-- people will die.
sapphoq healing t.b.i.
Labels: employment, t.b.i., tbi, traumatic+brain+injury
¶ 2:01 AM 0 comments links to this post
Monday, November 12, 2007
Four Years
Last week I passed my four year anniversary since my car accident and my traumatic brain injury. I thought somehow I would be working by now. Although I am closer to working now than I've been. Yeah, I am writing a novel and that is cool. To me though, that doesn't really "count" until the contract has been signed and an advance check is in my sweaty hands. I have one potential job substituting for a dishwasher should they get sick and another possibility to work for a friend who is manager at a restaurant. I don't think I will mind washing dishes once in awhile. Working at the friend's restaurant-- well, I gotta start over again somewhere. I haven't even been able to get an interview to deliver newspapers. So I will take what I can get and remember it is just for now, just until I can find something else.
I still have my vision problems, the mild expressive aphasia, and the occasional vertigo. As far as medical experts say, traumatic brain injury is permanent. We improve over time at some stuff, especially if we keep working at it but the basic brain injury itself is there and will be there. Folks say that "the brain can regenerate isn't that amazing?" sort of thing until I am sick of hearing it. Again, I will tell yas that yes, some neurons can regenerate however they do not always reconnect to the correct halves [causing cognitive slowdowns] or at all to anything [causing a central nervous system tremor which yes I do have].
I will never be who I was. I won't lie for the sake of the comfort of others and claim that who I am is a new improved model because it isn't. I don't believe that "all things happen for a reason" or that "I'm right where some god wants me to be" or that "there are no true coincidences." What I think is that life is sacred-- neither fair nor unfair-- and that it is the finite part of our selves that requires and maybe even demands meaning, thus we create it. I don't particularly feel bound by any compulsion to have reasons and lessons for learning. I think that life is far beyond our petty little explanations. Most other folks I know find comfort in believing that there is some sort of grand plan. That stuff doesn't help me though so I dumped it.
Some things have improved. My hearing-- which was supersonic before my accident and right on the borderline of needing a hearing aid or two afterwards-- has re-established itself into the supersonic category as per the last audiology test this summer. The addition of a c-pap machine after two sleep studies and a diagnosis of sleep apnea has really helped me to have a life [although it takes me much longer than average to get into REM sleep, at least I am dreaming again at night]. I keep working on my aphasia and now most folks don't notice it. I got involved with an incredimail creators' group [thanks Jeremy Crow] and that has been of immense help to me in restoring motivation.
If the accident didn't happen, we would have been better off financially and I would not have had my career viciously kicked out from under me. If suffering builds character and strength, I certainly could have done with a bit less of both of those things. In a perfect world, folks who smoke pot would be picked up by the magic yellow submarine bus and driven anywheres they had to go. [The driver who ran my car into a house was high on marijuana]. In a perfect world, we wouldn't need lawyers to protect us from our places of employment after we get hurt, little kids wouldn't be abused or die of starvation and diseases and all stuff like that. But it is not a perfect world. So I just have to do the best I can [most days] with what I got. As Nathaniel Branden would say, "It is what it is."
By this time next year, I hope that my novel will be written and submitted. I also hope to be working at least part-time at a job that I can tolerate. Still be married and in love with my husband and he with me. Saving money for my next cross-country trip. [I want to go every year or every two years for the rest of my life]. And still enjoying my animals, the woods, and life.
spike
I am writing a novel, as I've said before and thus am behind once again in visiting all of your blogs and commenting. Sorry for that. I will get to visiting all of yas to leave comments over the next few weeks or so.
And anyone who has a dog, if you haven't watched The Dog Whisperer, you ought to give it a whirl. He has most excellent ideas about dog psychology and communication. My current dog who is really angelic has become even more perfect since I started doing some of the things he suggests.
I still have my vision problems, the mild expressive aphasia, and the occasional vertigo. As far as medical experts say, traumatic brain injury is permanent. We improve over time at some stuff, especially if we keep working at it but the basic brain injury itself is there and will be there. Folks say that "the brain can regenerate isn't that amazing?" sort of thing until I am sick of hearing it. Again, I will tell yas that yes, some neurons can regenerate however they do not always reconnect to the correct halves [causing cognitive slowdowns] or at all to anything [causing a central nervous system tremor which yes I do have].
I will never be who I was. I won't lie for the sake of the comfort of others and claim that who I am is a new improved model because it isn't. I don't believe that "all things happen for a reason" or that "I'm right where some god wants me to be" or that "there are no true coincidences." What I think is that life is sacred-- neither fair nor unfair-- and that it is the finite part of our selves that requires and maybe even demands meaning, thus we create it. I don't particularly feel bound by any compulsion to have reasons and lessons for learning. I think that life is far beyond our petty little explanations. Most other folks I know find comfort in believing that there is some sort of grand plan. That stuff doesn't help me though so I dumped it.
Some things have improved. My hearing-- which was supersonic before my accident and right on the borderline of needing a hearing aid or two afterwards-- has re-established itself into the supersonic category as per the last audiology test this summer. The addition of a c-pap machine after two sleep studies and a diagnosis of sleep apnea has really helped me to have a life [although it takes me much longer than average to get into REM sleep, at least I am dreaming again at night]. I keep working on my aphasia and now most folks don't notice it. I got involved with an incredimail creators' group [thanks Jeremy Crow] and that has been of immense help to me in restoring motivation.
If the accident didn't happen, we would have been better off financially and I would not have had my career viciously kicked out from under me. If suffering builds character and strength, I certainly could have done with a bit less of both of those things. In a perfect world, folks who smoke pot would be picked up by the magic yellow submarine bus and driven anywheres they had to go. [The driver who ran my car into a house was high on marijuana]. In a perfect world, we wouldn't need lawyers to protect us from our places of employment after we get hurt, little kids wouldn't be abused or die of starvation and diseases and all stuff like that. But it is not a perfect world. So I just have to do the best I can [most days] with what I got. As Nathaniel Branden would say, "It is what it is."
By this time next year, I hope that my novel will be written and submitted. I also hope to be working at least part-time at a job that I can tolerate. Still be married and in love with my husband and he with me. Saving money for my next cross-country trip. [I want to go every year or every two years for the rest of my life]. And still enjoying my animals, the woods, and life.
spike
I am writing a novel, as I've said before and thus am behind once again in visiting all of your blogs and commenting. Sorry for that. I will get to visiting all of yas to leave comments over the next few weeks or so.
And anyone who has a dog, if you haven't watched The Dog Whisperer, you ought to give it a whirl. He has most excellent ideas about dog psychology and communication. My current dog who is really angelic has become even more perfect since I started doing some of the things he suggests.
Labels: t.b.i., tbi, thinking, traumatic+brain+injury
¶ 12:09 AM 0 comments links to this post
Tuesday, October 09, 2007
A QUESTIONNAIRE
The wonderful folks at Medscape bring an article detailing a questionnaire which NCNeuropsychiatry P.A. has made available on-line to medical personnel which their patients and/or family members can take. It has 207 questions which are correlated to groups of symptoms and specific conditions indicated by them.
The questionnaire is notable for traumatic brain injury patients because it includes a short test for problems related to concussion. Results below for a fictitious patient who presents with moderate disability from a traumatic brain injury have been directed pasted from the test site:
*****************************************************************************
SYMPTOM SCALE
CONDITIONAL SCALE
[end of cut and paste from site]
********************************************************************
It is noted that report of symptoms does not indicate that the patient has or doesn't have any of the conditions associated with them. Some patients may over-report symptoms and some others may under-report. The test results of the fictitious patient above may indicate perception of mild problems with attention, mood stability, fatigue, and sleep. The symptom clusters aggregate into a possible clinical picture of the presence of post-concussion difficulties as well as mild autism and Asperger's. An experienced qualified clinician can utilize the testing results in fact gathering and diagnostic interviewing. Because the patient can re-take the test throughout treatment as well as at termination, there is a direct way to measure any progress in reduction of symptomology.
NC Neuropsychiatry P.A. offers evaluation, treatment, and medication management for those people who have symptoms of a variety of disorders including but not limited to serious psychiatric conditions, learning disabilities, cognitive impairments, A.D.D. ad A.D.H.D., and broad autism spectrum disorders as well as traumatic brain injuries. Clinicians are researchers as well as qualified specialists and the practice also offers clinical trials.
The website itself is easy to read and easy to navigate. From the well-written section on traumatic brain injury, I found that traumatic brain injury is one subset of acquired brain injuries. The practice also offers for purchase a series of tests which measure things like working memory, ability to shift tasks, and flexibility in cognitive tasks. The tests may also be accessed from a computer [the clinician can download a complete battery] and norms are included. The series of tests together is referred to as the CNS Vital Signs Assessment Battery. The things that the tests propose to measure have implications for traumatic brain injury patients and for those with mild cognitive impairments, A.D.H.D., and stroke.
The subject of words, definitions, and labels has recently come up in two e-lists I belong to which deal with brain injuries. One of the ideas that was expressed was that researchers are only in it to "make a name" for themselves thus they have a vested interest in the nomenclature associated with brain injury.
From my own perspective, it is vitally important to recognize the medical terminology associated with brain injuries. Common civilian words that are used to describe brain injuries and the effects of are not adequate when reading peer-review research studies. The N.C. Neuropsychiatry P.A. website illustrates the commitment of the researchers associated with that practice. Doctor Johnson has a long list of publication credits and Doctor Gaultieri's is even longer.
Researchers do not work in ivory towers. With the increasing religiosity inherent in the U.S.A. government decisions of who gets what funding as well as competition for research dollars, researchers by and large do have to possess a commitment to the subject of their research as well as to displaying verifiable results.
I encourage anyone reading this who is a medical consumer with a specific chronic condition or disorder to familiarize yourselve with medical terms and research protocols. Medicine continues to advance at a rapid pace. We can become our own best advocates if we are willing and able to gather information in order to communicate intelligently with the professional helpers on our medical teams.
Financial Disclosure: sapphoq has never been a patient at N.C. Neuropsychiatry P.A. located somewhere or other in North Carolina. Neither they nor Medscape paid sapphoq for the nice things she said about them. Thank-you.
sapphoq healing traumatic brain injury
traumatic brain injury
symptom scale
N.C. Neuropsychiatry P.A.
cognitive testing
The questionnaire is notable for traumatic brain injury patients because it includes a short test for problems related to concussion. Results below for a fictitious patient who presents with moderate disability from a traumatic brain injury have been directed pasted from the test site:
*****************************************************************************
********************************************************************
It is noted that report of symptoms does not indicate that the patient has or doesn't have any of the conditions associated with them. Some patients may over-report symptoms and some others may under-report. The test results of the fictitious patient above may indicate perception of mild problems with attention, mood stability, fatigue, and sleep. The symptom clusters aggregate into a possible clinical picture of the presence of post-concussion difficulties as well as mild autism and Asperger's. An experienced qualified clinician can utilize the testing results in fact gathering and diagnostic interviewing. Because the patient can re-take the test throughout treatment as well as at termination, there is a direct way to measure any progress in reduction of symptomology.
NC Neuropsychiatry P.A. offers evaluation, treatment, and medication management for those people who have symptoms of a variety of disorders including but not limited to serious psychiatric conditions, learning disabilities, cognitive impairments, A.D.D. ad A.D.H.D., and broad autism spectrum disorders as well as traumatic brain injuries. Clinicians are researchers as well as qualified specialists and the practice also offers clinical trials.
The website itself is easy to read and easy to navigate. From the well-written section on traumatic brain injury, I found that traumatic brain injury is one subset of acquired brain injuries. The practice also offers for purchase a series of tests which measure things like working memory, ability to shift tasks, and flexibility in cognitive tasks. The tests may also be accessed from a computer [the clinician can download a complete battery] and norms are included. The series of tests together is referred to as the CNS Vital Signs Assessment Battery. The things that the tests propose to measure have implications for traumatic brain injury patients and for those with mild cognitive impairments, A.D.H.D., and stroke.
The subject of words, definitions, and labels has recently come up in two e-lists I belong to which deal with brain injuries. One of the ideas that was expressed was that researchers are only in it to "make a name" for themselves thus they have a vested interest in the nomenclature associated with brain injury.
From my own perspective, it is vitally important to recognize the medical terminology associated with brain injuries. Common civilian words that are used to describe brain injuries and the effects of are not adequate when reading peer-review research studies. The N.C. Neuropsychiatry P.A. website illustrates the commitment of the researchers associated with that practice. Doctor Johnson has a long list of publication credits and Doctor Gaultieri's is even longer.
Researchers do not work in ivory towers. With the increasing religiosity inherent in the U.S.A. government decisions of who gets what funding as well as competition for research dollars, researchers by and large do have to possess a commitment to the subject of their research as well as to displaying verifiable results.
I encourage anyone reading this who is a medical consumer with a specific chronic condition or disorder to familiarize yourselve with medical terms and research protocols. Medicine continues to advance at a rapid pace. We can become our own best advocates if we are willing and able to gather information in order to communicate intelligently with the professional helpers on our medical teams.
Financial Disclosure: sapphoq has never been a patient at N.C. Neuropsychiatry P.A. located somewhere or other in North Carolina. Neither they nor Medscape paid sapphoq for the nice things she said about them. Thank-you.
sapphoq healing traumatic brain injurytraumatic brain injurysymptom scaleN.C. Neuropsychiatry P.A.cognitive testingLabels: A.D.D./A.D.H.D., acquired brain injury, acquired+brain+injury, Medscape, N.C. Neuropsychiatry P.A., N.P.Q., nomeclature, peer-review, questionnaire, research, t.b.i., tbi, traumatic+brain+injury
¶ 8:04 PM 0 comments links to this post
Saturday, October 06, 2007
Places
That excitement of finding new places or re-finding old ones.
Pieces of me scattered in places I had never been.
I set off in April alone to find those pieces and indeed
they have been found. I knew. Never any doubt or question.
In my brain, I have snapshots of the many places I've been.
Places I have loved and places of tragedy or apathy.
Sacred places and places that have lost their holiness to me.
I have lived and loved and died many times over.
I have always been able to navigate through fairly well even those cities which I've visited after lapses of decades.
I remember how to get around neighborhoods and I can still see houses, apartments, stores, trees.
There are very few maps in my world; and very little need to ask strangers for directions.
An acute sense of direction combined with almost no sense of distance and a marked indifference to time.
Time leaks onto the fabric of the pages of my life,
muddying the words therein. I can still sing the words and I do.
I can read upsidedown with no problem.
I can write with two hands in various combinations of left, right, forward, backwards, rightsideup, upsidedown.
These things I have always taken for granted.
A long list of "Can't everyone?"
Just like the phone numbers from childhood and the addresses I can still recall.
First memory-- learning how to walk. And the revelation of a secret tryst inherent.
I was on the second floor of a house being encouraged by an old Italian man with missing fingers
to walk around the coffee table with no hands to steady me.
That old Italian man turned out to be the father of my step-father.
That is how old the affair of my mother and step-father was.
She was still married to my dad at the time.
From that memory, I understood how the two of them had met.
My mother had happened to hire an old Italian woman as a babysitter.
Odd. Almost everyone with a traumatic brain injury winds up with deficits in memory.
I am not one of those. I tested in the 99th percentile in both working and long-term.
My t.b.i.-er friends all tell me that they can't remember. I can't forget.
I did forget for a time who I was before my brain injury.
I could not describe my self pre-bonk.
And then random memories of my life began to return at random times.
Not anything I'd been counting on or even expected to happen.
More memories to add to an already bulging mental scrapbook.
Oh, I did forget how to cook.
The burnt pot of wilted herbs in a smoky kitchen told me so.
Cooking, like so many other things now, not automatic pilot.
I cannot take much for granted.
No. Having walked with death, I've been catapulted into life.
Vision like a permanent acid trip took some getting used to.
The world was too fast. I got used to my own pace, my own music.
I've "adjusted." Those who say otherwise know not of what they speak.
Yes, today I can describe my character traits before the accident.
Today, that doesn't feel important.
My mother told me when I was moving out, "You can never go home again."
I thought that meant she would not take me back in. I was too traumatized to care.
She had lost me through her abuse years before I was able to leave her house.
I understood a different meaning to not going home again many years later.
That people and places change, that my memories of those people and places
were expected to dull to inaccuracy, that returning does not render magical healing of heartbreak.
She was wrong.
So fundamentally wrong
in ways that I cannot explain and don't want to.
I have gone home again.
To places where I had never been before.
spike
That excitement of finding new places or re-finding old ones.
Pieces of me scattered in places I had never been.
I set off in April alone to find those pieces and indeed
they have been found. I knew. Never any doubt or question.
In my brain, I have snapshots of the many places I've been.
Places I have loved and places of tragedy or apathy.
Sacred places and places that have lost their holiness to me.
I have lived and loved and died many times over.
I have always been able to navigate through fairly well even those cities which I've visited after lapses of decades.
I remember how to get around neighborhoods and I can still see houses, apartments, stores, trees.
There are very few maps in my world; and very little need to ask strangers for directions.
An acute sense of direction combined with almost no sense of distance and a marked indifference to time.
Time leaks onto the fabric of the pages of my life,
muddying the words therein. I can still sing the words and I do.
I can read upsidedown with no problem.
I can write with two hands in various combinations of left, right, forward, backwards, rightsideup, upsidedown.
These things I have always taken for granted.
A long list of "Can't everyone?"
Just like the phone numbers from childhood and the addresses I can still recall.
First memory-- learning how to walk. And the revelation of a secret tryst inherent.
I was on the second floor of a house being encouraged by an old Italian man with missing fingers
to walk around the coffee table with no hands to steady me.
That old Italian man turned out to be the father of my step-father.
That is how old the affair of my mother and step-father was.
She was still married to my dad at the time.
From that memory, I understood how the two of them had met.
My mother had happened to hire an old Italian woman as a babysitter.
Odd. Almost everyone with a traumatic brain injury winds up with deficits in memory.
I am not one of those. I tested in the 99th percentile in both working and long-term.
My t.b.i.-er friends all tell me that they can't remember. I can't forget.
I did forget for a time who I was before my brain injury.
I could not describe my self pre-bonk.
And then random memories of my life began to return at random times.
Not anything I'd been counting on or even expected to happen.
More memories to add to an already bulging mental scrapbook.
Oh, I did forget how to cook.
The burnt pot of wilted herbs in a smoky kitchen told me so.
Cooking, like so many other things now, not automatic pilot.
I cannot take much for granted.
No. Having walked with death, I've been catapulted into life.
Vision like a permanent acid trip took some getting used to.
The world was too fast. I got used to my own pace, my own music.
I've "adjusted." Those who say otherwise know not of what they speak.
Yes, today I can describe my character traits before the accident.
Today, that doesn't feel important.
My mother told me when I was moving out, "You can never go home again."
I thought that meant she would not take me back in. I was too traumatized to care.
She had lost me through her abuse years before I was able to leave her house.
I understood a different meaning to not going home again many years later.
That people and places change, that my memories of those people and places
were expected to dull to inaccuracy, that returning does not render magical healing of heartbreak.
She was wrong.
So fundamentally wrong
in ways that I cannot explain and don't want to.
I have gone home again.
To places where I had never been before.
spike
Labels: t.b.i., tbi, traumatic+brain+injury, travel
¶ 12:01 PM 0 comments links to this post
Thursday, September 20, 2007
spike manifesto
I am spike. I cannot bend. My body doesn't allow it. When I am able to work on the garden or rip up carpeting, I have to do it my own way-- sitting. Do not criticize my lack of speed unless you are willing to offer your help. I am not emotionally invested in doing anything because you say I should or at your whim. This is the way of it. I am also not interested in hearing any wangst about "how difficult it is to live with [someone who has] a t.b.i." I don't complain loudly about how hard it is to live with a neuro-typical. Take your wangst to a support group for families and friends. I claim my right not to listen to it and not to get caught up in it. I have no time for bullshit.
I am spike. I am not interested in your pity or your displays of affection. I do not want to be swallowed in your vampiric bear hugs or have the life sucked out of me by your neediness. I have no energy to spare. I don't care for your crises or your drama. If you cannot relate to me friend to friend, I will reject your overtures. Anger is my truest friend. If you are afraid of my anger, chances are that any interconnection between us will be limited. If you are looking to get me "healed" of my anger or want to convert me to your religion or your way of being, save your breath. If you want to be my friend, you must remember that I am living on borrowed time. Those of us who have a nodding acquaintance with Death are forever changed. I offer no apologies for my attitude. I am not a t.b.i. I am spike. I can be a great friend. Or I can leave you in the dust as I and my dog go wandering off into the sunset happily.
I am spike. I am who I am and not who you want me to be. I was never good at being what you wanted me to be and now I am even worse at it. So I gave that up. I have my own way of being, my own dreams. I have my own timetable. What you think I should be able to do by now means nothing in my world. I am healing. I am experiencing a remarkable albeit slow recovery process. Nothing is automatic anymore. Being on manual overdrive is the way it is for me now. I march, skip, dance, and fly to the beat of my own steel drum band.
I am spike. I don't "look" disabled. Casual observers do not recognize my double vision in one eye or my physical pain or my expressive aphasia which I have learned to work around. Only doctors note the hyper-reflexia and the ocular-motor dysfunction, sleep apnea and sometimes the fatigue that plagues me. I take naps almost daily. When I don't, I fall more on uneven ground. I don't like falling. So I've learned to manage my energy and to take naps. I can be a citizen of the universe on those days when I am not screaming with fatigue. On days when I exist in a swirl of fatigue, I need solitude and rest. I am comfortable with my own company. This is my brain, my life. Not yours. I am spike. I do not care much for instructions on standards or how to behave properly or things like that. I compare myself to myself, not to some impossible standard of normalcy. I know that there is much to be said for blending in, for fitting in when and where I am able to. The world does not owe me a living. I intend to work at something just as soon as I can. Try hard to remember that a traumatic brain injury diagnosis means no open machinery, period. That test for factory work that you are dieing to give me is not going to happen. I cannot do it. I am not equipped to work in a factory. Nor am I able to stand on my feet cashiering. Any ability I had to multi-task is dead. I have not given up on myself. I am my own best advocate, not you. You are someone who is being paid to offer a service. I don't engage in false displays of admiration and gratitude when you the professional "helper" finally do something that is in your job description. You don't get to live vicariously off my back any longer.
I am spike. Do not tell me that "mind matters" or show me your stupid green rubber bracelet. I am not placated by meaningless empty platitudes. Do not tell me that you "know" what or how I feel unless you have had to have three sets of six very long needles stuck into the back of your skull in order to ease the severe constant t.b.i.-induced headache. We are all alone in our own skins. You better hope and pray with all the fervor that you possess that you never have to deal with the things I've had to face in the past almost three years. You may not be able to get through it as well as I have.
I am spike. Do not tell me that "mind matters" or show me your stupid green rubber bracelet. I am not placated by meaningless empty platitudes. Do not tell me that you "know" what or how I feel unless you have had to have three sets of six very long needles stuck into the back of your skull in order to ease the severe constant t.b.i.-induced headache. We are all alone in our own skins. You better hope and pray with all the fervor that you possess that you never have to deal with the things I've had to face in the past almost three years. You may not be able to get through it as well as I have.
I am spike. I cannot bend. My body doesn't allow it. When I am able to work on the garden or rip up carpeting, I have to do it my own way-- sitting. Do not criticize my lack of speed unless you are willing to offer your help. I am not emotionally invested in doing anything because you say I should or at your whim. This is the way of it. I am also not interested in hearing any wangst about "how difficult it is to live with [someone who has] a t.b.i." I don't complain loudly about how hard it is to live with a neuro-typical. Take your wangst to a support group for families and friends. I claim my right not to listen to it and not to get caught up in it. I have no time for bullshit.
I am spike. I am not interested in your pity or your displays of affection. I do not want to be swallowed in your vampiric bear hugs or have the life sucked out of me by your neediness. I have no energy to spare. I don't care for your crises or your drama. If you cannot relate to me friend to friend, I will reject your overtures. Anger is my truest friend. If you are afraid of my anger, chances are that any interconnection between us will be limited. If you are looking to get me "healed" of my anger or want to convert me to your religion or your way of being, save your breath. If you want to be my friend, you must remember that I am living on borrowed time. Those of us who have a nodding acquaintance with Death are forever changed. I offer no apologies for my attitude. I am not a t.b.i. I am spike. I can be a great friend. Or I can leave you in the dust as I and my dog go wandering off into the sunset happily.
I am spike.
sapphoq healing t.b.i.
Labels: disability manifesto, manifesto, t.b.i., tbi, traumatic+brain+injury
¶ 6:17 PM 0 comments links to this post
Tuesday, July 17, 2007
The United State Army has released a teaching program which will aid soldiers and their families in recognizing the symptoms of both mTBI and post-traumatic stress disorder. 1.2 million soldiers in groups of 40 to a class will be put through the mandatory training. Both the Pentagon and the American Psychological Association claim that army mental health services are lacking in funding and staff. Teaching resources are available for download at the army site to soldiers and to Family Readiness Group Leaders, but not to [any other] civilians.
I am glad to see the Army [at last?] taking a pro-active approach to both head injury and p.t.s.d.
sapphoq healing t.b.i.
I am glad to see the Army [at last?] taking a pro-active approach to both head injury and p.t.s.d.
sapphoq healing t.b.i.
Labels: mTBI, t.b.i., tbi, traumatic+brain+injury, treatment
¶ 6:02 PM 0 comments links to this post
Monday, June 25, 2007
Excuses, excuses, excuses
Anthony O'Toole told the court that an old head injury [not several pints of alcohol] caused him to have seizure activity which necessitated the calling of an ambulance and himself being intubated in order to maintain airflow. The stupid judge bought that story. The cop who arrested him for public intoxication apparently knew better.
To those of us who have a traumatic brain injury or any other disability or belong to any minority group-- the way to acquire equal protection under the law is through taking equal responsibility [i.e. the same responsibility that everyone else takes] for our bad behavior. We have choices and we can choose to lie about what we do or to face the consequences just like everybody else. Until we learn to quit using our otherness as an excuse, we have virtually no recourse in the dialogue for equal rights, period. Get a clue. Anything worth having is worth working for. If we want equal rights, then let's start taking equal responsibility.
Dude was drunk in public. Dude claims his seizures were from a head injury. That is possible. However, folks with traumatic brain injuries [even those without an addiction problem] should not drink or use street drugs at all. For a doctor not to know enough to access someone with a brain injury is negligence in my book. For a doctor not to know enough to advise that we should not drink or use street drugs at all is criminal.
Here's the link.
sapphoq healing tbi
To those of us who have a traumatic brain injury or any other disability or belong to any minority group-- the way to acquire equal protection under the law is through taking equal responsibility [i.e. the same responsibility that everyone else takes] for our bad behavior. We have choices and we can choose to lie about what we do or to face the consequences just like everybody else. Until we learn to quit using our otherness as an excuse, we have virtually no recourse in the dialogue for equal rights, period. Get a clue. Anything worth having is worth working for. If we want equal rights, then let's start taking equal responsibility.
Dude was drunk in public. Dude claims his seizures were from a head injury. That is possible. However, folks with traumatic brain injuries [even those without an addiction problem] should not drink or use street drugs at all. For a doctor not to know enough to access someone with a brain injury is negligence in my book. For a doctor not to know enough to advise that we should not drink or use street drugs at all is criminal.
Here's the link.
sapphoq healing tbi
Labels: a.b.i., acquired brain injury, acquired+brain+injury, excuses, responsibility, t.b.i., tbi, traumatic+brain+injury
¶ 10:20 PM 0 comments links to this post
Monday, June 04, 2007
A.B.C. Memories Meme
A. "Does anyone here have an aardvark?..."
B. Batman bangs one summer, cut by my mother. I thought they rocked.
C. Celantano's, a store on Roosevelt Avenue.
D. I used to help Miss Davis in the school library. She had her left leg amputated cuz of cancer.
I was saddened by her death years later.
E. "Everything is beautiful in its' own way..."
F. I swam "like a fish" and I still do.
G. My friend Peggy H. took me to see the play "Grease" in New York City.
H. Life magazine did a spread on the play "Boys in the Band." It was my first exposure to
information on homosexual men and I was fascinated.
I. "i before e except after c."
J. Jesus-tripping. My friend Nancy T. and I drinking Moygan David wine and eating matzas
in a Bloomfield park.
K. I liked bat kites.
L. "L is for the way you look at me..."
M. The first time I saw a mouse in the kitchen, I stood on a chair.
N. The word 'nigger' was socially acceptable in the house I grew up with. I learned better in
seventh grade with the advent of two black classmates and I got to be close friends with
one of them. Thank-you Ann P!
O. I smoked oregano for a whole summer, thinking it was pot.
P. An aunt and uncle had a poodle named Pepe. He liked to do tricks.
Q. I was a founding member of the short-lived Queer Nation in Albany New York.
R. Rehabilitation assumes that I was habilitated in the first place. I wasn't.
S. "Wednesday is Prince Spaghetti Day." It was Ronzoni in our household though.
T. Another uncle was into model trains. He had a set-up in his basement with a miniature
village and everything.
U. From first through twelfth grade, I went to schools that required uniforms.
V. Nancy T. joined the Air Force and was stationed at Valdosta, Georgia.
W. My mother used to tell me, "The world doesn't revolve around you." Still, a modicum of
attention or interest from her directed my way would have been nice.
X. "X marks the spot." I was quite taken by the book "Treasure Island" and by all things pirate
when I was in grade school.
Y. I used to hate the color yellow.
Z. I remember watching zebras running in Africa on Mutual of Omaha's "Wild Kingdom."
spike: sapphoq healing t.b.i.
B. Batman bangs one summer, cut by my mother. I thought they rocked.
C. Celantano's, a store on Roosevelt Avenue.
D. I used to help Miss Davis in the school library. She had her left leg amputated cuz of cancer.
I was saddened by her death years later.
E. "Everything is beautiful in its' own way..."
F. I swam "like a fish" and I still do.
G. My friend Peggy H. took me to see the play "Grease" in New York City.
H. Life magazine did a spread on the play "Boys in the Band." It was my first exposure to
information on homosexual men and I was fascinated.
I. "i before e except after c."
J. Jesus-tripping. My friend Nancy T. and I drinking Moygan David wine and eating matzas
in a Bloomfield park.
K. I liked bat kites.
L. "L is for the way you look at me..."
M. The first time I saw a mouse in the kitchen, I stood on a chair.
N. The word 'nigger' was socially acceptable in the house I grew up with. I learned better in
seventh grade with the advent of two black classmates and I got to be close friends with
one of them. Thank-you Ann P!
O. I smoked oregano for a whole summer, thinking it was pot.
P. An aunt and uncle had a poodle named Pepe. He liked to do tricks.
Q. I was a founding member of the short-lived Queer Nation in Albany New York.
R. Rehabilitation assumes that I was habilitated in the first place. I wasn't.
S. "Wednesday is Prince Spaghetti Day." It was Ronzoni in our household though.
T. Another uncle was into model trains. He had a set-up in his basement with a miniature
village and everything.
U. From first through twelfth grade, I went to schools that required uniforms.
V. Nancy T. joined the Air Force and was stationed at Valdosta, Georgia.
W. My mother used to tell me, "The world doesn't revolve around you." Still, a modicum of
attention or interest from her directed my way would have been nice.
X. "X marks the spot." I was quite taken by the book "Treasure Island" and by all things pirate
when I was in grade school.
Y. I used to hate the color yellow.
Z. I remember watching zebras running in Africa on Mutual of Omaha's "Wild Kingdom."
spike: sapphoq healing t.b.i.
Labels: disconnected memories, meme, t.b.i., tbi, traumatic+brain+injury
¶ 2:16 PM 0 comments links to this post
Monday, May 21, 2007
Cleaning 5/21/07
There was an old newspaper clipping and several sheets of photocopy from another survivor of traumatic brain injury regarding the protocol he wanted to have put in place in New York State. While I admired his effort, I figured it has already been done. According to the protocol the docs are always right about what they decide to do. The cost-effectiveness of the un-treatment I had gotten from the emergency room could have had dire consequences for me.
I was alert after the accident, having extricated myself from the car. I knew that "Monday was Halloween so it must be November." I knew the year. I knew that a guy had smashed into my car but not that my car had been runned into a house. I knew that the ambulance took forty minutes to get to my accident. The two ambulances were engaged in the accident down the street. The guy had caused a head-on collision after my accident and everyone down that way had broken bones and were being flown to a nearby trauma center. I knew that my list of meds was in my wallet in my pocket. I knew I had one hell of a headache, which the nurse claimed was from the oxygen. And I was having trouble following directions as x-rays were being taken of everything but my head. I had hit my head repeatedly on the ceiling of my car. Also back-and-forth between airbag and headrest.
I wanted to sue the hospital but the lawyer was strangely uninterested in that.
Screw the protocol.
The aftercare instructions neglected to inform me that I might have a concussion, never mind an official mild traumatic brain injury [abbreviated as m.T.B.I.]. I was more than mildly pissed as I began to realize that life had been altered on some deep cellular level.
Getting back to the junk in my car: There were also bunches of candy wrapper. Mute testimony to part of my problem with not losing weight. Mostly chocolate bars.
Some receipts for vet bills for the oldest kitty, who two months later is still ailing. This is in spite of getting most of the polyps surgically removed from her left ear and several return trips. She is nine. I don't know how much longer she will last. She is not slated to die. But I can feel her slipping away from us. The operation was 400 bucks and then we got told that she also has stuff wrong with her spine. The visit after, the other vet said, "No, this is all from her ear problem and now she has an ear infection." I threw the receipts out. They were sticky from spilled soda.
A green cloth and some steering fluid got to stay up front. I should have put them in the emergency plastic bin in the trunk. Old cars and "be prepared for anything, anywhere, anytime" sort of thinking tend to go together like sandwiches and pickles. I was no boy scout but I have learned to keep extra stuff on hand. None of the extra stuff helped me this weekend. What helped this weekend was close proximity to my house.
Two blankets for the dog covering up the back seat. Bunches of stuffed animals for her-- mostly frogs-- and one bone. One of the frogs plays music. The dog has learned to activate that feature by mouthing or pawing the frog's tummy. Not necessarily something I welcome when driving but the dog likes to do it. A stuffed duck, a basket, a broken windshield scraper. The broom part for pushing snow away is gone but it is still useful. [I use a broom in the trunk for the snow and an old pickax for freeing the car from ice ruts]. An emergency cane and some old white sneakers "just in case." A vibrating back pillow stuffed under the driver's seat in case things begin hurting.
In the console are various pads for scribbling notes and things, a few maps, a pen. More maps in the glove box. Rocks in the ashtray, rocks on the floor. Rocks in the side panel. I like rocks. One of my obsessions. I have rocks all over the house. An extra pair of sun glasses for my rare but real photophobia. Irfan's syndrome I've heard it called, although the special eye doc has never called it that. Photophobia is a pain. That "sunlight dances in my eyes" of my journal references my strong intense painful experience with bright lights and glare these days.
The dog hair stays. The tracked in dirt stays. The fingerprints and muzzle prints stay. I am not cleaning the car out in order to sell it. Just pitching the garbage like so many broken things.
I like rooting through castoffs and unexpected finds in abandoned old partial foundations in the woods. Once I found a top to a blue tin coffee pot, a remnant. I use it to hold incense. It brings me pleasure. This treasure hunting, perusing antique shops and flea markets and thrift stores for "the find" that is going to change my life or at least my finances. Curbside raids during city-wide clean-up days have gifted me with a bureau, some cool old pictures in old frames. Other peoples' memories thrown out for me to find and cherish.
I am a reluctant pruner of my own memories and outgrown clothing. After my accident, I was immediately aware that I no longer unders
Today I removed the garbage from my car.
Just a bag's worth, besides the returnable soda cans and the triple A tourbooks from my recent cross-country extravaganza.There was an old newspaper clipping and several sheets of photocopy from another survivor of traumatic brain injury regarding the protocol he wanted to have put in place in New York State. While I admired his effort, I figured it has already been done. According to the protocol the docs are always right about what they decide to do. The cost-effectiveness of the un-treatment I had gotten from the emergency room could have had dire consequences for me.
I was alert after the accident, having extricated myself from the car. I knew that "Monday was Halloween so it must be November." I knew the year. I knew that a guy had smashed into my car but not that my car had been runned into a house. I knew that the ambulance took forty minutes to get to my accident. The two ambulances were engaged in the accident down the street. The guy had caused a head-on collision after my accident and everyone down that way had broken bones and were being flown to a nearby trauma center. I knew that my list of meds was in my wallet in my pocket. I knew I had one hell of a headache, which the nurse claimed was from the oxygen. And I was having trouble following directions as x-rays were being taken of everything but my head. I had hit my head repeatedly on the ceiling of my car. Also back-and-forth between airbag and headrest.
I wanted to sue the hospital but the lawyer was strangely uninterested in that.
Screw the protocol.
The aftercare instructions neglected to inform me that I might have a concussion, never mind an official mild traumatic brain injury [abbreviated as m.T.B.I.]. I was more than mildly pissed as I began to realize that life had been altered on some deep cellular level.
Getting back to the junk in my car: There were also bunches of candy wrapper. Mute testimony to part of my problem with not losing weight. Mostly chocolate bars.
Some receipts for vet bills for the oldest kitty, who two months later is still ailing. This is in spite of getting most of the polyps surgically removed from her left ear and several return trips. She is nine. I don't know how much longer she will last. She is not slated to die. But I can feel her slipping away from us. The operation was 400 bucks and then we got told that she also has stuff wrong with her spine. The visit after, the other vet said, "No, this is all from her ear problem and now she has an ear infection." I threw the receipts out. They were sticky from spilled soda.
A green cloth and some steering fluid got to stay up front. I should have put them in the emergency plastic bin in the trunk. Old cars and "be prepared for anything, anywhere, anytime" sort of thinking tend to go together like sandwiches and pickles. I was no boy scout but I have learned to keep extra stuff on hand. None of the extra stuff helped me this weekend. What helped this weekend was close proximity to my house.
Two blankets for the dog covering up the back seat. Bunches of stuffed animals for her-- mostly frogs-- and one bone. One of the frogs plays music. The dog has learned to activate that feature by mouthing or pawing the frog's tummy. Not necessarily something I welcome when driving but the dog likes to do it. A stuffed duck, a basket, a broken windshield scraper. The broom part for pushing snow away is gone but it is still useful. [I use a broom in the trunk for the snow and an old pickax for freeing the car from ice ruts]. An emergency cane and some old white sneakers "just in case." A vibrating back pillow stuffed under the driver's seat in case things begin hurting.
In the console are various pads for scribbling notes and things, a few maps, a pen. More maps in the glove box. Rocks in the ashtray, rocks on the floor. Rocks in the side panel. I like rocks. One of my obsessions. I have rocks all over the house. An extra pair of sun glasses for my rare but real photophobia. Irfan's syndrome I've heard it called, although the special eye doc has never called it that. Photophobia is a pain. That "sunlight dances in my eyes" of my journal references my strong intense painful experience with bright lights and glare these days.
The dog hair stays. The tracked in dirt stays. The fingerprints and muzzle prints stay. I am not cleaning the car out in order to sell it. Just pitching the garbage like so many broken things.
I like rooting through castoffs and unexpected finds in abandoned old partial foundations in the woods. Once I found a top to a blue tin coffee pot, a remnant. I use it to hold incense. It brings me pleasure. This treasure hunting, perusing antique shops and flea markets and thrift stores for "the find" that is going to change my life or at least my finances. Curbside raids during city-wide clean-up days have gifted me with a bureau, some cool old pictures in old frames. Other peoples' memories thrown out for me to find and cherish.
I am a reluctant pruner of my own memories and outgrown clothing. After my accident, I was immediately aware that I no longer unders