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.

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:
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.

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:

or at the potentially less threatening:

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.