Booth Gardner and how society is openly bigoted against....itself?

First off, as damp or as sunny as you may have it, April and thus Spring is here, I am not another winter statistic, I lived. I made it. And don’t I look ecstatic about it. Is this because I am ‘never happy’? Well it could be that I am just one of the human killjoys that always sees the dark sides to things. Or it could be that I have the mother of all dental visits coming up: Booth-Gardner (Please note, I am not going to BG for dental work, I just meant the same sort of joy you GET from going to get dental work).

I have started to notice recently how much people talk about how horrific and scary death is; how they are terrified by death, how they are terrified by the PAIN most of all, the dying. I find with interest that those who have helped someone go through the final stages of living into death are NOT as afraid. But in a society where saying, “Gays aren’t natural.” Or “Half breed children of a black and a white are not natural” it is virtually encouraged and put into articles in the newspaper that ‘dying is not natural.’ Nor do we condone conversations about how we are scared of this or that ethnic group (well until recently and now it okay to openly talk about fear of muslims/arab/middle eastern descent, an action which disgusts me). And yet, as Sara said, Halloween is when the able bodied openly celebrate against the dread horror of becoming…..US: the disabled, the amputated, those with hereditary diseases or acquired diseases. And all of that open despising and hatred hurts. Turns out we ARE human after all.
Certainly it appears that I am dying a pretty painful death (since Linda is going to BG for pain control). And that I live a daily life which has a great deal of pain and doing things I never thought I would do a year or two ago in order to live. But I do live, because then I get to annoy people. I live for grabbing boobies, for poking butts, and for doing other juvenile actions (with the defense of the puppy dog look and ‘you’re not going to attack a DYING person are you?’ – it appears Linda will!). but seriously, I know that others live a life that has more pain, that they are also dying and with more pain than I; but how do you measure it and WHO CARES? This isn’t pain and disease BINGO and you don’t get extra points if your pain is SOOO bad compared to person X. I generally think I couldn’t handle anyone else’s conditions from fibro to M.E./CFS to RA, to spinal cord injury, to amputation. But I also know that I would, that it would become my new reality. But where do the rest of society get off by not only shoving us behind a veil where only the ‘inspirational’ may briefly emerge but then openly talking about how there is NO way they would ever want to be US! 'OMG! Can you imagine it, being someone like ______ (insert name of reader here)? It would just be horrible, horrific, I mean I would kill myself or have someone kill me.' But as much as you try to hide us, we exist, like the poem, because you did not wait for death, I will wait for you!
What does this have to do with Booth Gardner? Well you see, there is no good option at Booth Gardner and I know that a lot of people are very emotionally and financial invested in BG, including me, but there IS no good news. I tell Linda every other day that ‘yes, I made this all up, I’m sorry, I stopped going to a national circuit tour and the western nationals and the eastern and the world cup, and get those jobs that were begging for 60K+ because I wanted attention. And so I fake all this in order to sit alone in a room for 2 weeks without going outside.” And she whacks me and says, “Stop saying that.” And on the other days I have meltdowns because I CANNOT plan a life beyond Booth Gardner. In answering the questions for Booth Gardner it has become apparent how useless the efforts, which were large, of the last few years were. “Why did you have the same test four times?” They ask.

Me: “Because the specialist believed I was lying.”

BG: “But it is a BLOOD test.”

Me: “Yes.”

BG: “So after they showed this problem what course of treatment did they start?”

Me: (in a small voice) “um…they gave me another blood test?”

I mean, why in the last 9 months have I been tested for AIDS 3 to 4 times, along with syphilis, and other STDS? Why over and over again? Dunno. Why were the nerve conduction tests done but then stopped, not repeated to see what progression there was nor treatment started? Dunno. Why did the side notes of the endocrinologist, which pointed out that I had, as you can see by the handy chart he made, autonomic failure and he suspects an autonomic failure disease like Shy-Dragers, take the neurologists, who said it wasn’t HIS place to say that. Why did it take them over a year to do the test to prove him wrong and that I was making it all up only to write up a report that sounds almost exactly like his. “And what then was the result of these tests?”

Me: “Um….they didn’t do anything.”

Sometimes it seems best NOT to try and think about it. As the Rhumatologist says the last Neurologist should act, the Neurologist says she just does the diagnosis, that the local neurologist should act (there is no local neurologist), nor is one referred. The seizure specialist says that he doesn’t take psuedo seizures and after my GP called him and told him ALL about me, he can say that I have pseudo seizures (with no tests as proof at all!), and that the MRI will come back showing no seizures. So he orders an MRI examination for a 60 year old male with long term high blood pressure instead of a marathon runner and athlete in her 30’s, looks at one section of one lobe for only signs of a massive stroke or bulging veins from high blood pressure (even though longer term strokes than a TIA are noted in the earlier neurologist’s notes). So now he has the proof that the MRI is ‘clean’. Which proves what? That he can drop me.

So Booth Gardner might tell me they have never seen my variation. They might tell me what the doctor at ER who sees many autonomic failures a day (people dying have autonomic failure), that I have vascular autonomic failure (which will kill me). Or they might say it doesn’t add up. Or that they can’t find anything. Which helps me…how? But that is the paranoia of the abuse of the Canadian system, as EVERY page of each blood test has at least one problem on it: liver function, adrenal function, anemia, etc. Okay, so they will want more tests and then want to see me again probably, except how long will THOSE tests take? Nine months, a year? Two years? I am still waiting for my follow up from the heart specialist….

Or they could advise a treatment. Will the Canadian and BC government start the treatment? The top Neurologist said IVIG was a possible treatment but no one wants to be the one signing the line. So who will, the GP? BG could say that they thing I can live longer with treatment X; then BC could refuse to give treatment X. Or they could give it and I could get VERY sick, and BG could say, “oh, well, try treatment Y instead.” They could give a provisional diagnosis, they could say they haven’t seen this. I simply don’t know. I am paying them to look at the tests we have and go, “Wow, it kind of looks like you have…..” But I don’t have a GP. I leave in 40 minutes to interview one. Should my first question be, “Are you going to drop me if I question you? If I bring in a neurological journal article?” Or should I just shut up and be thankful (As it turned out, HIS first statement was a discussion about the paper from the College of Physicians for doctors NOT to drop cancer and dying patients, 'well, thats because there are too many FEMALE doctors, and what use are they (female doctors)? They only work part time anyway....oh they drop by to do a pap smear I suppose' with the unspoken statement that the 'real doctoring' was left for the men to handle made worse by female meddling. The meeting kind of went down hill from there. He has all the connections, he works in the hospital (he called it an 'ancient sty'), knew as I said that I had Lichen Sclorocis with an 'of course', but might listen to BG, not going to defer to them; he is after all a MALE GP - and when he finds out the top doctor in the hospital is female! But he HAS a patient with MSA-p).

See, besides BG saying, “Oh you could have been cured if they did XVZ in the first six months.” What hope is there? They cure me? Linda puts that at 5% or less, and that doesn’t include my ability to sweat, the nerves will always be destroyed, and what about the lungs? The heart?

Meanwhile I have most of society saying, “Oh God, don’t look, don’t look!” Except of course that I look mostly like everyone even though I lose vision every day (neurological problems) – here I am with eyepatch, going on anyway. Behind me, is the list of artbooks. I did two days of research long ago, which could mean several weeks or a couple months, and wrote down the names of all the art books I want to get – because I wouldn’t be able to remember them after 2 days.

The problem isn’t the medical model and I think the social model doesn’t go far enough, because it only includes stable conditions. We have a society where death is something that is horrid and far off, and where pain and living is considered impossible. Well here is some news, if you want to live, you will have pain. If you want to live you will eventually become helpless, dependant, and while you can SAY, “Oh, I hope someone shoots me.” Do you really want to give me a gun so that if you forget where you put the keys, I blow your head off? "No, no, I didn’t mean that, I meant…….." Well where IS the line? You can’t know until you are in the situation. And because no one LOOKS at the situation, or thinks about the situation, we have a whole society who wants to stay at a pain free 19-24. And who is also vapid, shallow and lacking in the insight that being those ages forever gives you. There is a reason there are wise OLD men and women; there is a reason there is the wisdom of living. That what your grandmother told you really was good advice.

Except that I, the woman in my 30’s am the nightmare of the generation of the baby boomers, the openly acknowledging shallow and selfish generation who doesn’t want to have to do anything hard, painful, or horrid. So no wonder they don’t want to listen or talk to me, though most of my VIHA helpers are 20 to 30 years older than me. I feel like shaking some sections of society and yelling, WAKE UP! I am not a living nightmare, I am a human being, equal and as valuable as you. And that so many people CAN NOT even conceive that makes me look at THEM rather funny. Because I scream a lot, because my body does things which aren’t talked about, thus they can’t exist. To sound like a waitress, “Oh honey, you just haven’t even started living yet.” Yes, so many hate themselves, that slightly different life which will soon show up in the mirror. And if a whole society hates itself that much, based on how they hate us; the disabled, the dying, those with diseases, birth or aquired; will they die failing to learn anything about living?