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*sapphoq healing tbi

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Saturday, July 04, 2009
  VESID and teamwork
As I had suspected, the fellow who was a co-worker years ago and is now a big-wig at VESID was not interested in making a phone call to Running Sores. At least he bothered to answer my e-mail. It was civil enough. No problem.

The job handler had forwarded to me part of an e-mail from the VESID counselor noting that since "we" [VESID counselor and job handler] are the ones "working with her" [her would be me] ergo any contacts should be made by them.
I wrote back to them a reminder that this is my life, my limitations with which I am intimately familiar with because after all I do live with them daily, and that I hope that this thing does not degenerate into non-cooperation with other agencies and individuals. This caused a response from the VESID counselor in terms of a phone call on Wednesday.

The VESID counselor wanted to know what accomodations I will need if I get a carved out part-time job as a per diem investigator of serious incidents with Running Sores. This conversation became immediately difficult for me as it was obvious to me that the VESID counselor does not have a clear handle on what investigating using O.M.R.D.D. regs entails. It was also difficult because I cannot decide what accomodations I will need for a job that I do not have yet and most likely will not get. The fact that the job is carved out, part-time, and per diem is in itself an accomodation. From there we got on to other things. One of the things that I endeavored to explain is that I am not an advocate and not a team player. I am a maverick, an independent worker, a researcher, an investigator. Different set of subskills from advocacy. My past advocacy skills did not survive my brain injury. My investigative skills did. Her immediate response was, "Oh, I believe in teamwork." I said to her that teamwork is fine in terms of me seeking help, however in terms of my work environment I am more of a maverick. I realized that the VESID counselor was not responding to what I was telling her about myself. So I terminated the conversation.

I do not do well with being micro-managed. I am far too independent for that. I don't need help doing job searches. I am accustomed to doing my own. That is not why I require VESID services. The orginal plan proposed by the neuropsych who did my cognitive testing was that Running Sores would re-assign me and that VESID would provide a job coach. VESID (several years ago) was supposed to call Running Sores to advocate for my return. To the best of my knowledge, in spite of my requests, this never happened. I called twice on my own and did not get anywhere with it. I got blown off. If it is not possible to return to Running Sores, then I deserve to know that.

If VESID is unwilling or unable to advocate for me with my former employer, then individuals should stop promising that and say that to me up front.

I went down to the Advocacy and Life Growth workshops again today (we meet every Saturday) and was very glad I went. Peter Kahrmann is a wonderful human being. The group itself is based upon the premise of providing a safe, respectful, honest, and non-judgmental space for us. I like the people in the group. I am also learning how to be less critical in my dealings with others. I value the folks in the group there. Peter has a blog at http://thekahrmannblog.blogspot.com and information about the Life Growth program is located at http://www.lifegrowth.net/index2.html

sapphoq healing t.b.i.

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Tuesday, June 30, 2009
  VESID, Kahrmann Workshops, and Hope
Last Thursday I was supposed to have a meeting with the job developer re: my resume. She called that morning several hours before the meeting was to take place having to cancel. These things happen. We re-scheduled for this past Monday. My husband has a co-worker (also an acquaintance of mine who I have known for a number of years) who helps people who have been out of the workforce for awhile with their resumes. Having seen my resume, he offered his help to me. I accepted. That visit was also slated for this past Monday.

First the job developer's meeting with me. She called for me at 1:23 rather than 1:15, citing a telephone call and forgetting that we had an appointment. [But I'm the Unforgettable One, how could she???]. These things happen. She hadn't rearranged my resume [I had sent her a better one, using a book that husband's co-worker had lent me and one other specifically written to help folks like me who have been out of work for awhile]. Last Thursday she found out that the R.C.I.L. fiscal year ends on June 30 and "all these reports" had to be filed by then. These things happen. Unfortunately, her not being able to re-format my resume deemed this particular meeting a waste of my time. She could have sent me the job leads she had given me. But no matter. I told her that I was also having an appointment later that day with husband's co-worker.
Job developer asked me if I want to meet after July 4th as in next week. I looked at her. I told her, "No." I told her she could send me the job postings via e-mail. (Last week, I set up a box specifically for her and VESID. Sigh. 70+ e-mail addys aren't enough I guess.). I told her I was used to doing my own job searches. Job searching is not where I need help. I told her that VESID was supposed to have followed up with my previous employer Running Sores several years ago but never did. I had called myself twice but did not get anywhere. She agreed to advocate for me. Cool.

I went to my semi (unofficial) appointment with husband's co-worker who is also my long-time acquaintance. He looked at the revised resume and said it scans well, that he wouldn't change a thing. Cool. I lent him my book on resumes. We got into the circumstances behind my leaving the last job-- the car accident during lunch hour, the other driver who was high on marijuana allegedly, the immediate effects of my traumatic brain injury (which included a total inability to do paperwork that someone from personnel kept calling me up about during the period of time when I was sleeping 22 hours a day albeit she didn't know how seriously hurt I was and neither did I), the necessity of hiring a lawyer to protect my rights since the "no-fault" automobile insurance company and the workers comp insurance company both thought the other should pay my medical bills, things I think I may be able to do at my old company on a part-time basis with the assistance of a job coach... Acquaintance suggested several areas of job searching that I had not thought about.

Acquaintance also suggested that the VESID supervisor (who used to be my co-worker years ago) call Running Sores rather than the job developer. Acquaintance said it would be harder to brush off the VESID supervisor, especially under the adverse circumstances of my leaving. I went home and fired off an e-mail. Quite frankly, I do not believe that the VESID supervisor will make any such phone call, not even one to give a heads up that the job developer will be calling. I do not believe he will because: (1). it's not his job, and (2). my unfortunate impression is that the higher up the chain of VESID that one goes, the less actual work gets done. I may be wrong about the second, even if not about the first. It would be nice to believe that I am wrong about the second. It doesn't hurt to ask, even if it results in getting me labeled as "having poor boundaries" or "balls of steel" or whatever the current psychobabble is for directness and bluntness.

At first I thought that polishing my resume was an exercise in futility. Much to my surprise, it wasn't. I've got more than fifty publication credits-- and some of those more than once-- plus an appearance in three anthologies. And a ton of a variety of experience in human services. Surely I should be able to find a part-time job-- maybe 10 hours a week to start-- that I can do even with my current difficulties related to brain damage. My visual processing is messed up, double vision in one eye is no fun, I can't multi-task anymore except for driving, my mild expressive aphasia continues to annoy me even though I have learned to work around it really well, 24-hour vertigo sucks balls, and my back is a wreck. I've got some skills still intact along with the stuff that has been wiped. I've got the computer art that I do, internet skills, research skills, computer troubleshooting skills, and a deep desire to physically take computers apart and rebuild them. I've still got my total attention to detail. Oh, and my memory tested out at the 99th percentile, much to my total and utter amazement.

I have renewed my attendance at Peter Kahrmann's Life Growth/traumatic brain injury support group workshops on Saturdays. The first hour is devoted to working around obstacles that prevent us from being who we wish to be. The second is devoted to talking about brain function and how the damage shows up in our lives. I am now also going to the advocacy instructional workshop before the Life Growth ones. Although I am not counting on any ability to do advocacy work, that workshop has been a refresher in some of the regs I used to know like the back of my hand. And my being there with Peter and other folks gives me hope for my future. It may not be what I was aiming for perhaps. Still, I believe now that I can dream new dreams.

sapphoq healing t.b.i.

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Friday, May 15, 2009
  The B1tch is Back
Yeah, I've been gone for far too long. I've been seduced by Second Life (Fuel Burner referred you, if you ever do decide to sign up). I've spent a ton of time learning how to build in 3D. Considering that I've got double vision in one eye from the brain injury as well as perception problems, being able to build something that actually holds together is a feat within itself. Oh yeah, and one of my relatives got married.

Attendance at that wedding was mandatory. Just before leaving for the very expensive hotel (almost 200 bucks for one night), I had my hair cut. Gave my first braid to the Locks of Love. In case you haven't heard about Locks of Love, basically it is an organization that collects lengths of hair to turn into wigs for kids who have lost their hair due to medical baldness. I decided to grow out my hair once in memory of Marie-- my friend Philly David's sister. She had cancer and she died. She was a Quaker. At the meeting hall, there was a little boy there she admired because he was growing his hair out for Locks of Love. He was confident enough not to care about the other kids teasing him for it. So I grew my hair out in honor of Marie.

I felt really good about it when I saw the braid of hair in the bag destined for a kid who really needs it. I've decided to do it again.

More info can be found at: http://www.locksoflove.org/


Bout a month or so ago, I had a "meeting" with the VESID counselor (my fourth in four years) and the job developer. They decided that I want to be an advocate. Getting into any sort of investigative work does not fit in with their limited ability to see beyond my brain injury. During the meeting, I was asked if I would consider full-time advocacy work if I were to make "twenty-five dollars an hour." I recognized this number as being pulled out of a hat (i.e. not based on reality) immediately. I told both of my professional "helpers" that my health and well-being has to come first. Quite frankly, the fatigue is the real killer for me. Lack of imagination is theirs.

Thanks to the friend who came with me who also has a brain injury, I was able to remain calm. That is to say, I was able to refrain from telling these two to feck off. I am the first to admit that I am somewhat obsessed with the "VESID problem."

I was supposed to send off my resume to the job developer. I haven't. I am currrently suffering from lack of belief that this agency which had put "my case" on hold for a year without informing me of that fact (?cuz I refused to get a "return to work" order from my doctor after a routine vertigo attack?) is able to help me. I waited a year for them. They can wait for me. The truth is less glamorous. It took me awhile to remember that my resume is in the computer files.

The job handler to her credit did call me once, leaving a message. Usually she calls from a blocked number and refuses to leave a message, but she counts it as an attempted contact anyways. When I called her back, she asked if I "still want to do advocacy work." Well, no actually, I thought, that is what yous want me to settle for. No matter, I couldn't talk right then anyways. She asked if I want to meet with her. I said, after I send out the resume I will call you. That is how I left it.

Now that I know where the resume is, I can quit tearing the house apart looking for it. I can print the resume out and send it off. I understand there is something there about allowing the professional helpers to help me. I have not been very co-operative. I acknowledge this fully and completely. Yet I also understand that I have to find my own way. As I am able to let go of the problems I've had with VESID, perhaps hope will then be able to return. Yeah, I do feel hopeless.

I feel hopeless because I want to write and I want to write badly. I've had lots of stuff published. Yet there is no current book in my brain. Just a chapter and a vague idea about where to go with it. And a real sense of loss. As in, "I was finally 'making it' career-wise and everything blew apart in a matter of seconds."

So I will send the job developer a resume. I will even meet with her and make nice. I will even listen to the things she suggests, even if they are not things I can do. The last suggestion involved being a home health aide at the agency that is run out of her agency. The biggest problem with that is my back. I can't lift more than ten pounds, period. One of my friends got pushed into doing that, along with being a nursing assistant substitute on call-- and her back is worse than mine. And quite frankly, there are other problems with that line of work. Like I can't do housework for more than ten minutes at a time. I've forgotten how to cook. And I am beyond disorganization. There is that inability to multi-task too that I've been stuck with. The neuropsych told me that my "ability to multi-task has shit the bed and it's not coming back." The shrink explained that I am highly distractible. Uh wow.

The thing is, I am not an advocate. I am an investigator. I've got total attention to detail (in spite of my disorganization and inability to multi-task). I know how to investigate. It's in my blood. I know how to ask questions. And I know how to write up my findings. I know this about myself. If the job market will not bear with an investigator who functions a bit oddly socially and can only work part-time, then I have to come up with some other way to use my investigative skills.

sapphoq healing tbi

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Friday, January 02, 2009
  MEET THE NEW YEAR 1/2/09
same as the old year? I hope not.
This is the year that I will get unstuck.

2008 already seems far away, a distant memory. Like a receding shoreline pounded by the waves or a receding hairline.

2008 was the year that the brilliant VESID personnel demanded a return-to-work order after a routine vertigo "attack." Again, I ask, WHAT WORK? Since I don't wish to beat that particular dead horse anymore, I shall leave that one dangling.


2008 was also the year that my dad moved three times. He moved from his home with his almost ex-wife #3 to a pullman apartment to our home in the middle of nowhere and then back to his home with his almost ex-wife #3.

I learned a lot of things when my dad was living here for a couple months. Some of those
things I didn't wish to learn and some I did.

My dad succeeded where no one else had since my accident-- I learned how to maintain a
simple house-cleaning schedule. Now I wish I could have had him visit after my accident.
Earlier after my accident rather. At any rate, the house is slowly rising from the plague of
the dust bunnies.

The other things I learned are more of a private nature and thus I will not record them here.


2008 was the year that I discovered Second Life (tm to Linden Labs). Second Life is total eye candy to someone like me who loves visual effects and animations. Over there I've been learning a bit of simple scripting and some 3D building. That is the part that makes Second Life different from blogging.


My goals for 2009:
to remain abstinent as defined in the program of Narcotics Anonymous.
to complete my book and submit it.
to remain married and faithful.
to increase our financial stability as a couple and mine as me.
to continue to monitor my health proactively.
to blog on any of the blogger blogs twice a week and on the journal blogs once a week.
to address the things that I allow to keep me stuck.

I hope for everyone a well new year. And if not a well one, then at least a weller one.

sapphoq healing tbi

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Wednesday, November 12, 2008
  VESID sucks
It has been several months since I've heard from the last VESID counselor. She called me up on the telephone to remind me that I need, in her words, "a return to work" note from my doctor. I am brain damaged. I am not brain dead.

Let's see. Three years before I got to meet with a job handler. Three months for her to decide that I need such a note because I had told her in the middle of a vertigo attack that "this is getting worse."

What work???

sapphoq healing t.b.i.

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Thursday, June 19, 2008
  VESID sucks
A couple of days ago, I actually heard from the VESID rehab counselor instead of from the job developer. The VESID lady wanted to know about my doc's appointment at the end of May. Well no, you see that is yet one more thing that the job developer had gotten wrong. I had told her that the appointment was in June or July, NOT May. May had not been mentioned in the context of a doc's appointment at all. No surprises there. I detest incompetence.

The VESID lady still wants her stupid fruckin' doc "return to work" note. That in itself is a joke. What work? It took several years for me to even meet with a job developer. I finally did and said job developer panicked over a routine (for me) vertigo attack, resulting in the latest stalemate. I been to the CAP agency before. Quite frankly, I don't have the energy for all of this burrsit. And furthermore, VESID sucks.

I cannot point to one "professional" who bothered to find out who I am, or even who bothered to read through all of the medical records. Not one. The percentage of folks who get off of disability is extremely low. Participation in VESID (O.V.R. or B.V.R. in other places) knocks that percentage up a bit. Problem: the professionals' definition of meaningful employment is way different from our definition. VESID is noted as per anecdotal stories available on the web (google "VESID problems," "VESID horror stories," or "VESID sucks" if you wish to read any of them, for an "any job" sort of attitude. That "any job" attitude translates into low-paying down to minimum wage regardless of experience and abilities. Just get us all employed.

The problem is that if we have to go back out on disability at some future date, the S.S.D. folks get to add in the effects of the shit jobs to our benefit checks at that future date. It is no wonder that many of us choose part-time work, especially at first to try to gauge our ability to return to the workforce full-time. And for those of us who are no longer able to do what we used to do (or who are not hire-able into a field which we had years and years of experience due to whatever the hell the last ex-employer is telling folks about us: le sigh), it does not make sense to practically kill ourselves working in a minimum wage job. Sorry, that is the way it is. So if I take a job for subsistent wages and lose the disability after nine months, I screw myself for when I need to be on disability again later on.

Putting up with VESID's shit has been rather taxing for me. Doing more of what doesn't work doesn't work, as Nathaniel Branden says. Trouble is, I can't seem to find what does work. Mate brings home job postings that I am not qualified for and/or not able to perform due to limitations donated to me courtesy of my traumatic brain injury. There are times when having a traumatic brain injury sucks big-time.

*discouraged sapphoq still healing traumatic brain injury giving up on VESID but never on herself.

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Tuesday, May 13, 2008
  Job Handler, Employment Consultant, Job Developer-- oh my
Laura Hersey's words echoed in my brain this morning as I was dealing with one tiny segment of the bureaucracy-- "You Get Proud by Practicing"
(to read it, goto:
http://www.cripcommentary.com/poetry.html#PROUD).
I was a bit fatigued and consequently not able to play the good grateful consumer role. That is what happens when I am called too early in the morning. I suck at that particular role anyways. My irritable brain makes that role damned near impossible to pull off on a good day.

VESID is helping to wreck the R.C.I.L.s. I read something like that somewheres and I am believing it. The Independent Living Centers in their truest grassroots form are supposed to be teaching us to do it for ourselves, not providing services to do it for us. Ah, my t.b.i. verbosity again. That is a thought to be developed and explored and researched on some other day. Yup, I'm angry. Today is the day that I am in. And today I am angry enough to take a break from seeking out more lindens to play with on secondlife and write this inane little driveling essay. The word essay comes from the French. This essay is my attempt to sort through things.

I asked this morning. Which one are you? Job handler, Employment Consultant, job developer. I was introduced to her by the first title, the most recent communication was signed off with the second title, VESID literature available on-line refers to the third title. In all of this mess, I wanted one straight answer. Indeed, the third title is the official one. Sigh. That led to my observation of what I remember how job developers worked in two neighboring counties when I was running group homes. Which led to her hot defense that she had called the one hospital and gotten nowhere (so she had told me before) and that she had called two other hospitals (oh really?) because I had "seemed interested in working in that setting." She went on to use her hot two dollar words like job carving. Not in this county. If it doesn't apply, let it fly.

The other straight answer-- sort of-- is "right now your case is on Hold but it cannot be on Hold Forever." I don't recall asking for forever. The words she had zeroed in on during my most recent vertigo attack was "getting worse." She had documented this. Of course, she reported this to the VESID Counselor and of course on the recommendation of a puny job developer I am now required to get a note for a two week attack of vertigo. The last three docs I visited within the last three weeks did not seem overly impressed by this. Logically vertigo is worse during an attack. Duh. I wasn't clear enough in my despair immediately after my attack apparently. I think it would not have mattered if I had been.

Benign Positional Vertigo. I found myself explaining this unasked. I informed the job handler that the vertigo is in my records, that surely someone from VESID should not have been surprised by the attack which is standard operating procedure and akin to having the flu. My position remains the same. If VESID has concern about my vertigo interfering with my employability, then perhaps VESID should pay for a work-up. The idea of having to get a doctor's note for having "the flu" is a requirement manufactured out of the brain of someone who is not familiar with medical terminology. It is a ridiculous requirement. I spike declare it to be so. In my unprofessional unasked for opinion, this idea of having to get a doctor's note is stupid. Next time I have a vertigo attack or any other transient business-as-usual medical thing, they can find out by reading this blog. Because I sure as fuck am not going to tell them. Damn them all. I have an appointment with the E.N.T. doc who follows my sleep apnea in June or July. The E.N.T. doc can write the note. The job developer can write that down in her report for the VESID counselor. Screw it.

I have years of experience in human services. I have some really nifty computer skills. VESID's emphasis from the beginning has been to get me into a job as soon as possible. Hang my application for the 55b/c state program. The shrink who follows my t.b.i. as well as my t.b.i. exacerbated major depression said to wait for that to come through. Somehow my wish to have a job coach lined up specifically for a 55b/c position got lost in the VESID mandates. Fuck it all. Let my own individuality and self-determination hang on the clothesline that is the ghetto where the dreams of the disabled are murdered. I refuse to live in that ghetto.

Listening to Peter Kahrmann (on the B.I.A-N.Y.S. board) talk about the brain injury itself making things difficult and how we are not our brain injuries coalesced into my determination not to live in the ghetto. The job developer didn't tell me in so many words to apply for entry-level positions because nothing in human services was coming through for me. She didn't tell me to settle. She didn't say I had to just take any job for the sake of the VESID mission statement. I internalized that idea from somewhere. Quite frankly, traumatic brain injury is an insurance liability. So here I go all dressed up with my need for ankle braces and possibly a cane, hat, glasses, inability to multi-task, a bit of expressive aphasia, don't lift more than ten pounds, don't reach overhead, vertigo, fatigue, out of work for over four years due to a car accident which was not my fault, and who knows w.t.f. the last place is saying about me-- pen at the ready. Hire me. I can't even get a gig delivering newspapers. And I want out of the disability wasteland that I have been consigned to. Yeah right. Yes, that is correct. Up and out. Watch me.

This isn't working for me. As Nathaniel Branden declares, "Doing more of what doesn't work doesn't work." VESID jerked me around for several years before I even got to see a job handler. VESID jerking me around has been VESID's standard operating procedure. Me jerking VESID around gets me labeled hostile, uncooperative, and difficult. I am hostile. To that I will admit. I suspect that most people faced with the loss of a career would not want to be cooperative while being jerked around, even if some lack the gumption to fight it. Difficult? I am not difficult. My brain injury is difficult. Frontal lobe damage makes self-regulation of emotions difficult when fatigued, Peter Kahrmann explained. Coffee soothes the savaged ravaged irritated lobe beasties, my brain screams at me. Coffee now DAMMIT. Oh shut up. In a few minutes.

The thing is, I don't want a job that will leave me starving in more ways than one. I want my career back. Or a new career. I have a traumatic brain injury, yes. I know I am impaired. I can even identify when my impairment sticks out in everyday life. I cannot pass for someone with typical neurology and I am not willing to. I have to do something. I have to do something else. What I've been doing isn't working. The "help" that I have gotten from VESID so far has been less than useless.

Maybe I need to start over and look at this whole thing again. I am sure that VESID works for traditional people [who are willing to be compliant and work for slave wages in sheltered workshops while their futures are canceled out.] Perhaps I do need to take a few courses [or get a Masters degree or more] to update my human services stuff or get some training for computers. It was then explained to me that I get to do one or the other, job hunting via her or some kind of schooling with the VESID counselor. Not both. It has to be one or the other. The job developer assures me she will report these concerns to the VESID counselor as well. Fine. She will write the VESID counselor an e-mail. Go for it. Do I have an e-mail address so she can send me a copy of said e-mail? Let's see. I could have given her fruckVESID at resistant dash witches dot com. Instead I gave her the short answer. No, I don't have an e-mail addy. Send me a copy in the snail mail. Will I be home today so the VESID counselor can call me? She stopped herself there. I heard the maybe. I will be in and out, I said. I am not sitting home in the disability ghetto watching television to wait on a call from the VESID counselor that may or may not arrive today. Damn these people.

Even if I was capable of being meek and mild, why the fuck should I want to be?

sapphoq healing t.b.i.

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Saturday, May 10, 2008
  T.B.I. on SecondLife and on-going VESID stupidity
I took a break from blogging for a bit in order to explore SecondLife(trademark owned by Linden Labs)-- a virtual world created by Linden Labs. If anyone is interested, well then you can go check it out at:
http://www.secondlife.com/join/?u=492430f4263844fdb2cb9ef952ebf4a1

or at the potentially less threatening:
http://www.secondlife.com/?u=492430f4263844fdb2cb9ef952ebf4a1

and for those of you who aren't interested, obviously you don't gotta. End of unpaid commercial.


Anyways, my avatar (a little figure in clothing used to represent me in Second Life, thus from here on in will be referred to as "my avie" or simply "I" -- past English teachers be dammed) got to pick a gender and some clothing, went through utter confusion of orientation, and then was deposited along with other newbies at a Welcome Center. From there, my avie went off exploring. SecondLife is total eye candy in 3D.

After flying around for a bit and collecting a bunch of free clothes, I found that I was lonely for human communication. I went to some 12-step meetings (we're everywhere!) and found a few folks there to talk to. I began studying the events notices, joined a few groups, bought a bit of land. I began my first brain-damaged experimentation with 3D building and started going to events and classes regularly.

My avie got a job as a stripper in a club, something for which I make no apologies. The Lindens (money in SecondLife) are good. Real life mate doesn't care what I do in SecondLife. Dancing is varied and automated. The mobility and vertigo problems which plague me in real life are absent there. Plus, like most other avies, my avie is younger in appearance, skinnier, hotter, and has better hair than I do!

Besides exotic dancing and other events, I also found that the Asperger's community is alive and well on S.L. That made me happy and I now have some friends to hang with who do not expect great social feats from me. Many of them have some of the same passions that I do and that is excellent!

And yes, there is a t.b.i. group on SecondLife. We meet usually on Saturday mornings S.L. time at a comfortable and extravagant 3D clubhouse on a beach. The house is situated on an island. There is the ocean right there, a pleasant deck, several dogs, the meeting room itself, and offices upstairs. The man who facilitates the t.b.i. group lives in the States. He is very welcoming. I immediately found myself at home there.

When I told him about the most recent VESID stupidity, he was appalled and asked me if I have a case manager, case worker, or service coordinator. I am not eligible for Medicaid and thus not eligible for the T.B.I. waiver in my state (a situation which pisses me off-- the financial hit we have taken from my car accident and subsequent loss of career has been astronomical) and so I could not navigate the system well enough to get a Service Coordinator. I had tried but nothing much happened there. The facilitator-- also a T.B.I. survivor-- offered to meet with his case manager in order to seek out information for me and will be checking back with me soon. He also suggested that I call the Office of the Aging and the United Way in my county. I hadn't thought of that. More on the hunt for service coordination as it evolves.

The last time I had spoken with the job handler (a young woman who means well I suppose but who is young enough to have a MySpace account under her own legal name) she expressed grave "concern" over the latest two week bout of vertigo. This should not have been news to her or to anyone else related to VESID. It has been documented in my records that I have benign positional vertigo. The benign means it isn't a tumor or anything causing it. The positional means it is outside of myself, that is to say that the room/the world slides to the left. Vertigo means dizziness of a sort. Thus, I am not dizzy. The world is dizzy. I am used to it. I consider my 24 hour vertigo to me similar to allergies. And the occasional attack--where the world dips and spins madly-- to be akin to a common cold.

The attacks are annoying. The singular medication which the doctor demands I take during the worst of the attacks is annoying. The med leaves me able to navigate my home looking like someone who is slightly tipsy rather than totally plastered. There is not much that I can accomplish during an attack. Feeling miserable, I spend a bit more time sleeping than I usually do. Although I cannot do what I used to do, I certainly am not "home watching television." (That is what most voc-rehab counselors assume that folks with disabilities not slaving in sheltered workshops are doing with their days.) During the attacks, I am too miserable to even consider much teevee or much of anything else. So sleeping fills the bill. And serves to keep me from descending into total fatigue afterwards.

Consequently, when the job handler expressed her cloying concern over my latest two week attack I was not feeling a need for sympathy. I was feeling pissed off. And I knew that her concern was a smokescreen for another message. I may be brain damaged but I am NOT stupid. The job handler went on to inform me that until I got a doctor's note saying I am healthy enough to be nagged by her on a regular basis over where I had put in job applications and gotten interviews that the VESID counselor was putting my case on hold. I asked her, "Is the VESID counselor paying for my doctor's visit to obtain such a note?" Her answer was obviously no. "Well then, the VESID counselor will have to wait until I go to the doctor anyways for such a note. Do what you have to do." Shit. The primary care doc does not require me to see him before, during, or after these attacks. And as I've said already, vertigo to me is like allergies and colds.

I thought that would be the end of it until I delivered the note. But no. The job handler called my answering machine twice more. I didn't return the calls because: 1. a close friend who is also an addict was in the hospital and I was busy in a daily fight for her to get adequate pain relief, 2. I figured if my "case" was on hold then that meant that I didn't have to deal with the job handler, and 3. I just plain didn't feel like it. Angry? Oh hell yes. I was angry and I still am. I am not grateful for the crumbs. I can't get Walmart's to hire me, never mind any agency that offers jobs in my previous career. Hell. I can't even get the local newspaper to agree to give me a route. And I intensely dislike cloying concern and people nagging me for information about exactly where I've applied for work. To top it off, I am at the point where I am not sure that I am able to get back to work of any description. What part of, "I don't fucking feel well enough to do anything for four hours a day, never mind eight hours" is not clear English?

I am not a quitter by nature. I am tired of VESID, tired of incessant demands, tired of nagging whiny voices, tired tired tired. The shrink who understands t.b.i. has maintained from the start of all of this foolishness that the original plan is NOT to work even part-time until a 55b/c job comes through with the state. He tells me repeatedly that the 55b/c program expects me to be a fuck-up (not in so many words, he says it nicer) because I will be hired with the knowledge that I am disabled. With the 55b/c program, I will provided with a job I can do and a salary that I can live on. And the added benefit because I will be hired as a fuck-up, I would really have to be outrageous in order to get fired. The problem I am having in my interviews is that it is obvious that I have some serious impairments and no company wants to deal with a new employee who has vision problems, auditory processing problems, non-existent capacity for multi-tasking, can't navigate stairs well (the vertigo), and is at risk for falling in spite of the braces and cane. And let's not forget the fatigue.

So there is SecondLife. I have a sort of goal there to amass enough Lindens to go into virtual business for myself. And there is VESID and the professional and para-professional paid "helpers" associated with VESID. And there is my life and there are my crumpled dreams.

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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.

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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

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healing tbi from a pagan perspective

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Name: sapphoq
Location: hiserville, new jersey, United States

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