Monday, May 21, 2007
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 understood the world and its' inner workings. I forgot random parts of my life. Those parts are slowing coming back as I continue to heal. Reluctant to lose them again, I write them down over at http://life.sapphoq.com for electronic prosperity. I had a sweater once that I hated. It was ugly. Pumpkin orange tweed, with green scotties. I packed it when I moved cross-country and then packed it again when I moved back. 3000 miles and I never wore it.
The neuropsych testing which all t.b.i. survivors should have revealed that my memory is even better than those without a brain injury. 99th percentile, the laid-back guy told me. I could remember 9 numbers [almost 10] and repeat them forwards and backwards. In real life that meant I could remember phone numbers. I didn't remember who called on any morning. I knew what I had for breakfast because most days I eat the same thing-- a nutrition bar that is supposed to give me energy. I'm still waiting for that one.
As I began to remember more and more of what I forgot, I began to respect the power of my memory. I am one of the two percent that cannot forget. Two percent of folks with a traumatic brain injury survive with intact short-term memory. My memory, in spite of those things that were inaccessible to me for a time, was in the category of brilliance. Block design too. I finished all of them, though for the last two I got a bit distracted by the p.a. outside the door announcing phone calls and all of that.
Before the accident, I didn't realize how powerful my memory for events and phone numbers was [and is still]. If I had been asked, I would have told you that my memory was a mess. It wasn't. I had too much to do is all. It took an accident for me to realize how intelligent I am. My brain is broken, yes. But not to be discarded. To be cherished. I have names for various medical ailments and body parts. My period is Matilda. My recurrent ulcer responds to Medusa. Medusa for the snake-like vise she grips my gut with. My "piles" [how's that for an old-fashioned word?] are Frick and Frack. My post-injury brain is Briella. Briella, like a beach in New Jersey in the summertime. Twisted a bit. Briella is brilliant sideways.
I have written some of these things before in other places. I will probably write them again. I have to keep writing it. And writing it. And writing it. Get it down. Track my healing with words. In my writing I force my words to sing. When I set out across country, I hoped to find some scattered pieces of my self in places I had never been. I did. Like me in my very first memory of learning how to walk, my haphazard soul retrieval picked up momentum across the miles. I am back now, more myself than I have been in years.
sapphoq healing t.b.i.
Thursday, May 17, 2007
In the state that is dieing to pay for almost everyone's health problems, it was interesting to note that some folks with brain injuries are crying "foul." The dirty little secret of nursing homes everywhere is that in the bid for dwindling funds, they have become repositories for folks with brain injuries [both acquired and traumatic], folks found to be mentally ill, folks unable to go home immediately after hospitalization but not sick enough to take up hospital beds and so forth. Anyone who has had direct experience with a loved one in a coma being shipped off to a nursing home [uh, thanks managed care and health mediphorical discintegrarganizations] is familiar with exactly what kind of "rehabilitation" such places offer. It is about time that folks with brain injuries stuck in nursing homes raise their voices in protest. Apparently, Massachusetts provides some services for some folks with t.b.i. but has ignored those folks with strokes and other acquired brain injuries by shutting them away in nursing homes.
Community living with natural supports is much preferred for any civil [civil= human being who is not a law-breaker, able to live in society without being a threat to that society] over institutionalization. Group homes are far down on the list of preferences, yet congregate living is still better than existence in a nursing home. The ideal is for folks with any disability to be able to choose where they will live and then given the means to utilize the [hopefully natural] supports needed to be successful. No doubt, most folks want to be in their own home surrounded by their loved ones. Some may wish to live in an apartment with or without a roommate or two. [N.B. Keeping one of us in a nursing home is far more expensive than allowing us to have a true say in our lives].
To those of you who talk about "special needs," we do not have "special needs." We have the same needs that you do. We have the same needs for self-determination, love, friendships, communications, mobility, sexual expression, productivity, societal roles, a space to call our own, and community participation that you have. Get a clue people. By calling our needs "special," you divorce yourselves from our humanity. Are you afraid that you will wind up like us? We are not contagious. [Wait. Maybe I am. Two of my friends came down with traumatic brain injury after I did]. I remember a woman boarding a bus in Phoenix. I was attempting to get my fare out to put it in the little fare grabbing machine which was new to me. She appeared to be afraid of my walking stick. Or maybe it was what the walking stick represented. Or maybe that somehow I was going to leap off of the bus and steal her bicycle on the rack outside in front of the bus. I dunno. Fear this. Fear a bunch of us united together in our anger and strength determined not to be locked away in nursing homes.
In this society, those of us who become disabled quickly find out what it is like to be a second-class citizen. Some surrender to despair, some ignore the situation, and the rest of us get angry and politically active through organizations like A.D.A.P.T. My sincere hope is that Massachusetts will choose to spend healthcare dollars on her disabled citizens stuck in nursing homes rather than continue to spend them on those pesky illegal aliens who are snapping up construction jobs [and cluttering up emergency rooms] all over the country.
sapphoq healing t.b.i.
Thursday, May 10, 2007
I am totally pissed off. I have been part of an email support group for three years. It is for folks who have survived traumatic brain injury. Now my posts to the group [not that there are very many lately] have been put on "moderated" status because of the e-mail address I use for the group ending in "resistant-witches.com." Resistant-witches.com is my ten dollar push button domain that I bought a few months ago in order to stand with a couple of friends who were being bullied on-line. [Consequently, I also became a target, but oh well].
The owner of the group had originally written to me about others in the t.b.i. group who were writing to her because of their concern/paranoia that I am a witch, and/or the e-mail addy itself. I didn't save that short letter because I never expected it to escalate into this foolishness.
Excerpts of our correspondence follow:
Hi ________ ,
...It was another part of your e-mail that concerned me...you mentioned something about "how many people have written [to you] regarding the witch thing."
Are you meaning the domain name where I get my e-mails now? [which was set up to help people who have been targeted by on-line bullies]. Or my personal beliefs? [which I am not asking for anyone's approval of]
Or something else?
I am not understanding why either should be a matter of concern.
I have been willing to set aside my differences in order to remain on the t.b.i. list by practicing
celebration of diversity to include those who are christian of varying political persuasions or
who are heterosexual or who have different views of medications and natural healing etc.
Please clarify this thing about witches so that way I may contribute to an orderly t.b.i. survivor list.
I have no need to hijack threats or to convert people [forbidden in my religion, actually]
and at the same time when an adult asks me on the list what is the "iq" part of "glbtiq"
I would like the freedom to answer the same without going into any sort of gross detail.
And I certainly am not willing to hide my spirituality just as I am not willing for anyone else to hide theirs.
At the same time, I understand what an undertaking running a list is-- especially of folks who do not necessarily have to be similar
to each other except for the circumstance that we happen to share the experience of living with a brain injury.
...After a B.I. so many are "paranoid" when something doesn't "look" or "sound" right
and they get antsy and unsubscribe...go through the subscribing thing all over again....
...Now the "witches" thing is what I've had a few people refer to and they are
wondering why anyone who would be a "witch" would be on this list, and it makes
them paranoid. So, I was hoping that you'd keep one of your old email addresses
that doesn't have anything about "witches" in any part of it....we're trying to keep
some sort of "family" and "normalcy" on the list...
...For those like me who aren't aware of why you got this email addy, the
"resistant-witches" sounds more like a "cult" than anything else and I really
don't want to give anyone on the list any reason to "doubt" or "wonder" about the
T.B.I. group. It just "looks" like something they should worry about, you know?
...You may give some thought as to "why" people are bugging you...
Thanks for explaining stuff to this brain, _______...
...There are a few folks on the list from time to time with alternative spirituality practices
and it is for those folks that I will not go back into the closet of assumption.
I am what I am. And yes, I am a witch, and not even of the wiccan variety.
Part of dealing with a traumatic brain injury involves learning or re-learning how to live
in the world among folks who do not believe or think the way we do now.
...There are non-christians who come down with this t.b.i. thing
and maybe "ask spike" might also serve [in some cases, for the less jittery]
just as well as explaining that resistant-witches is an e-mail provider
or even that not everyone on the list is a christian-- depending upon who
you are responding to...
...[I will continue to]...leave my personal spiritual practices
off-list unless there is a compelling reason to do otherwise
[and there never has been to date]....
...Peace to ya,
I did some thinking about how to answer you...and then
decided to do a search for "resistant witches" because you
"said" it was an I.S.P. server....[dots hers] it was not. What I found was your web site
http://www.resistant-witches.com and found the "definition" of what you
practice...I also noticed that there was nothing about
"email bullies" , but only about witches and that you were tired of being quiet
(so to speak).
I also noticed that this web page was very "negative" and showed lots of
"anger." This is NOT what we are trying to pass on to the T.B.I. list either...
your...Yahoo profile page which is also very "expressive."...gays and all sorts of other religions
and polotics are being forced upon me, offensive clothing and such...
...but when a sex offender molests a child and is allowed to live close to
my neighborhood I don't like it...collecting welfare...I still have to fight for
my own rights. Fairness has nothing to do with it. As long as I live in
this country, I must abide by their rules...
...If you'll read the rules of the list once more, you'll see that "politics,
religion and sex" are NOT allowed...By letting you publically use this email name on this list you
are pushing your religious beliefs onto the list, whether you are talking about
it in an email or not. This is NOT allowed...
If my email address ended in JesusIsLord.com, I would be in violation of the
same rules. You don't have to "talk" about your beliefs because you've already
made a "statement" that you are a witch and that statement is shown in your
...I think if you thought
about the possibilities, you would understand why this can be trouble for a list
like this one and if you cared about being on the list or those on it, you would
say "ok, no problem."..."Why" give them a chance to bring up this subject on the list?
...Your posts will be moderated
at this time until you get your email address changed...following the rules....
apparently i expressed myself wrongly.
resistant-witches is a domain which has e-mail addys attached to it.
i am to be judged because of an email addy.
i will not justify my beliefs or practices to you or to anyone.
nor will i justify the homepage that you found that is indeed
in response to internet bullies--
not "email bullies."
i have other avenues of support.
i am not defenseless.
furthermore, you know nothing of the situation at hand that
i have been dealing with.
choosing to exclude people whose email addys happen to end
or even in jesusislord.com is your perogative.
i am also tired of assumptions.
I unsubbed from the group. Fuck it.
Sunday, May 06, 2007
In Phoenix I had to admit that my impulsivity could lead to dangerous consequences. When I took one bus that turned before I needed it to and didn't allow the driver to complete an explanation [which she gave to another passenger a few stops later] that another bus was coming which would take me to my destination, I was left on a corner wondering if I should "walk" the remaining distance. Fortunately, I remembered something about calling and asking someone with sense about these things. So I called my friend with my [borrowed] cellphone and I learned that I should not walk through Papago Park on a hot day. So I waited for the bus. The first few days in the Sonoran Desert which was Phoenix Arizona, I noted that people carried water or Gatorade with them. It took me several days [and a very long walk to and from the zoo-- from and to a bus stop-- with no taxis in sight] for me to connect with the idea that I need to drink more fluids AND to also carry water or Gatorade with me.
In trying to keep up with the demands involved in re-learning how to utilize public transit, I put myself at risk for dehydration. I was "lucky" not to endure medical consequences for my poor decision-making combined with my impulsivity. By time I got to Sedona, I was carrying water with me almost everywhere I went. Sedona's weather was a tad cooler but hydration still a necessity. I also elected to take jeep tours rather than walk great distances to unfamiliar hiking trails.
This impulsivity is polar opposite to my pre-injury personality which involved cursing people out [not always under my breath] but did not involve risk-taking, especially with health concerns. I survived the Sonoran and learned a few things about my vulnerabilities and liabilities in the process. When the airplane taking me home was landing, I felt triumphant for managing to [mostly] take care of myself and [mostly] making good enough decisions over the past three weeks alone.
sapphoq healing t.b.i.