Obituary’ or The one left behind: The Booth Gardner visit.

In many movies, I think of Mad Max, or Platoon, where you see a main character lef behind while everyone is leaving, pulling out. They have no choice. There is literally a visual sea of the ‘other’, that destructive force we fear as it seems to know only pain, fear and death, closing in. In Platoon, the character, shot in shoulder, is running with over a hundred enemy soldiers after him. The Huey helicopters, having risen could look down and see him running, running, shot, falling, up and running again for the landing zone.

In the same way in Mad Max films, having used himself as a human decoy, the Mel Gibson character is shown, exhausted waiting as those who have been chasing close in. He looks out, seeing the plane, or convey getting away, and the whole stance says what has been said in so many books and movies: “they aren’t coming back....are they?”

Regarding Booth Gardner. In the reverberations which will continue for some time to come in my life I stand on the edge looking out and know that ‘they’, modern medicine, the advances in science, the doctors and specialist, they aren’t coming back for me.

They have people they can save, and they are going to them.

I never really believed, not REALLY that there wasn’t some cure or specialist out there who could change my condition, they just had to want to. Yet it is always different when you hear from the white coats.

I am sorry.

In going to Booth Gardner I carried your compassion, your best wishes, your donations, your kindness and the best hope of both of us.But before going to Booth Gardner, we made one last attempt to get Vancouver's head neurologist letter which Booth Gardner did NOT have and which neither my previous Victoria neurologist nor my ex GP (Jimmy) could find. It had the nerve conduction tests and other data so we asked the ex-GP's admin worker and suddenly it WAS found, in his file no less (he was away on vacation). We got it the day we left Victoria to go to Booth Gardner.

The letter had in it not only extensive diagnostic information, but an order to begin the IVIG treatment which I had been trying to get for two years, as anecdotally it was one of the few things to stop autonomic failure progression. After the nerve condition the IVIG had been approved.

The letter was a year old.

Last year: last May, the Victoria Neurologist and the GP were instructed to created an autonomic failure baseline and then administer three to six months of IVIG. As this treatment was the best chance for both autoimmune an non-autoimmune diseases of autonomic failure. If autoimmune was discovered, or the baseline showed a slowing, stopping or improvement, then I could continue to another medication or stay with IVIG, depending on results.

This letter was never shown to me. Instead the Victoria Neurologist and my now ex-GP (Jimmy), in daily contact, told me that taking a baseline would NOT lead to treatment (the neurologist said this to my face, it a session we recorded without her knowledge). She had previously told me that the province would NEVER authorize IVIG as my problems were ‘in my head’ and worked to have me put into a locked ward instead. After I made a formal complaint she was removed from the case and the opening for the locked ward disappeared.

My GP, Jimmy, however for the next 11 months, not only had the letter but twice pulled it up on his computer to read sections to me (but never had a copy for us). He also during this period refused to refer or authorize all diagnostic care, all specialist referrals, including the many, many requests for a neurologist. Nor the requests for endrocrinologist and refused to treat the anemia or thyroid, or even test the hormone levels (as the medication required every 6 months for liver function tests).

I now have a GP I have met once, and I need a neurologist referral, a baseline test, and then IVIG treatment. In the Canadian system that amount of referrals will take between 11 and 14 months. Would I already have received IVIG treatment having a neurologist a year ago? Yes, I would have had at least six months of treatment by now.

Even if somehow the treatment could begin tomorrow, I will NEVER regain the nerves that are lost, never be able to leave the house without an oxygen converter as my lungs are failing, I will not have the extensive brain damage reversed, never again the same in reserves nor will I be able to take a normal dump for the rest of my life (oddly rather important: don’t take one for two weeks and see if you agree?). There is a year of permanent nerve damage. Last year, I was one month from my Japan trip, a trip which Linda said a few months ago, simply could NEVER happen again, in my condition.

My GP, the person entrusted for my care, told me I would only receive treatment if a specialist told him what to do. A specialist told him to give me IVIG. He did not. Instead he told me he would only give me treatment if I went to the US for diagnosis. The province felt that I had a serious enough condition to spend $18,000 and perhaps more to TRY and save me. My GP ensured, by not allowing a neurologist referral that no one else would ever see this letter (as if I had a neurologist, the letter would have to be forwarded or they could contact Vancouver themselves).

That was what we read in the Van driving to Booth Gardner the day before. The pictures of me smiling at different races, races I don’t know if I am able to finish THIS year flashed on my screen saver. A year sometimes makes a great deal of difference.

At Booth Gardner, a complete history was taken as well as review of the tests and this ‘new’ letter. Booth Gardner is NOT a center for simply autonomic failure but rather a Parkinson’s center for MSA. What they could tell me is this: I did not have MSA (or a variant they were familiar with). I have central autonomic failure. I also have peripheral autonomic failure. It is not known how that is possible but it the facts. I also do NOT have POTS which is the non-lethal form of central autonomic failure. I also have peripheral neuropathy (progressive) of which there is no understandable connected cause. When asked what could cause such destruction the head Neurologist of the center said, “Heavy Metal poisoning?” (Could you PLEASE stop sending me liquid Mercury cookies!) which is like saying ‘Radiation poisoning’ as both don’t damage only the Axon, they simply warp the DNA, eat the nerves and wreck damage on a level beyond predicting. I have not, to my knowledge, been wearing my Cherynoble earrings.

The Neurologist in BC who saw thousands of people with neurological condition and a few with autonomic failure said it was not DNA related, and unknown if auto-immune related. It could be just ‘one of those diseases’ like Lou Gehrig disease/ALS was until it had a name. Why do I get it? Why me? Who knows? The head of the center which dealt with thousands of people coming with autonomic failure each year could tell me what it was: something which should be impossible – both central and peripheral autonomic failure, much less the peripheral neuropathy. I had the lethal kind of central autonomic failure. Indeed outside of anecdotal evidence that IVIG works on some people (best with those with AAN) the ONLY hope for autonomic failure are those with MSA-P, who have a 5% chance of extending life expectancy. She felt I needed a referral to a specialist to only rare autonomic failure cases and is giving one. I pointed out that at the progression and the types of autonomic failure left, that I was not only terminal, but rapidly terminal. She agreed that ‘those with autonomic failure (of my type) had a shortened life expectancy.” But again emphasized that I did NOT have MSA (or a variant she had seen before in her thousands of cases) and I needed to see an expert in autonomic failure (AAN, is often called MSA because no one has ever heard of it; this is what I have believed I have, however I often use MSA as it is easier to understand. She does NOT know if I have AAN). She also wrote that the anemia and thyroid needed to be dealt with. And this was my diagnosis. My Obituary.

All those words but what does it mean? It means I thought for a day and then cried a lot. It means I spent about $800+ to get the answer. The answer is no. I am terminal. I do not have a form of autonomic failure that has any way to survive or even extend life; except for the faint hope of IVIG, not currently studied in trial as not enough people can be collected or live to the end of trail period (usually 6 months to a year) to have a clinic trial. I am progressing at what appears to be 4-7 times the speed of other people with central autonomic failure. By pure stats, I should be dead. Plus I have peripherial autonomic failure, which is unheard of, but I still have both AND the neuropathy.

What can an autonomic specialist tell me? Maybe that someone else has what I have, or that it IS AAN or something new and they call it MSA-Q or they haven’t and they will want to autopsy me. Or maybe like this visit, they will end up with a list of what they know which still ends with “I just don’t know!”

Medicine isn’t coming back for me.

The question I need to answer is how much more time and energy will I spend, how much more money will I borrow, beg, put Linda into debt in order to find out a bit more about these diseases. I think Linda, Cheryl and others would like to at least a consult with an autonomic specialist. I would like what I fought for, and won, it turns out, a year ago: Treatment.

Was the IVIG withheld by the neurologist out of spite? The same neurologist who ordered another MRI because she said nothing would show up on an MRI but something did, so she ordered that section done AGAIN, and a year later it was determined to be ‘unknown.’? Why, why did my GP do it? Out of dislike? It is hard to believe that he would complain about needing guidance when he had it, that he would force us to spend money we didn’t have, money I had to beg publically for in order to get an opinion in the USA only from …confusion?

A year without treatment when I could have gotten better. It rings around in my head like pealing of the bells.

I asked Linda the point of chasing this specialist, then the Chicago program, then the Vanderbilt? She said, maybe for another woman, another generation. I said, with tears on my face, “It’s been over 100 years and they haven’t found anything YET.”

Yesterday was somewhat dodgy, hands black from lack of oxygen, arms and legs deep purple, much like this afternoon: TIA’s, stopped breathing, the usual. I have decided that if there is a visit to an autonomic specialist I will go, but that I want to try and set up the IVIG treatment as soon as possible, within six months if that is possible, even if I have to go to the newspapers. I want to gather reserves as much as I can and enjoy life while I have it. I know that every day, and every breath is borrowed time, that there isn’t any magic cure, or hope. And yet, I do have hope; hope that my life will be better. That I will be able to say “no” to the medicos, because they either accommodate me, or they just wait. Because either I live this life my way, or lose that chance forever.

Like the last 24 hours, there will be more depression, crying, and Linda and I holding each other. (3) But I am going on Friday to Sakura-con, if I am strong enough: I want to buy some art books for the blog. I want to buy some cat ears to send as presents. I bought some presents today in town to send out and when the total came up went there was a, “Wha?” moment. But it is okay, because this might not be what I originally sold my books for but this is who I am.

“Why,” asked the salesperson, “would you send presents to people you don’t even know, or have never met?”

I asked her if she remembered what it was like getting a surprise present as a child. She did. I said that many of the presents were FOR children and some were to help people remember that feeling of getting a present; the child-like wonder and anticipation.

This has been the worst couple of days as I can remember. And there is a lot more staring into space ahead. It is one thing to sort of know that you have a rather horrid death ahead and another thing to KNOW. To know that, no, they aren’t coming back to help or save you and from now on it will likely be more difficult, more painful, and yes, the road that leads to one end.
I AM trying to notice the flowers and the sunshine, and not just that ROAD, that destination. I got a bustier and thong underwear for $17 today! I have an outfit for sakura-con, and I want, I really, really want this to just be a fun time. To be a time I DO remember, one of the good memories of this summer. Since I am Not Dead Yet, and plan to stay that way (your not sending me heavy metal or radioactive cookies would HELP in that!). As long as I breath, I want to LIVE. Okay, I know what I have lost, I know what I am losing; now it is up to me to figure out how to make a life where I gain something, anything: from joy, from enjoyment, from just a smile.

My fucking ex-GP!!! Now there is a man who needs a postcard (and his license pulled, and a cell in the Hague for ‘Crimes Against Humanity’). Sorry, not quite all adjusted yet.

An update and a paradox

I’m blogging so I must be better? Um, no, not exactly. I am actually worse generally than when I blogged last time. The fever which comes and goes is a result of MSA out of control.Here is the paradox: if I am going to live, I need to stay in bed and make sure I get as much rest as possible. But if I am going to die, I need to make sure I get all my work done, my goodbye’s taken care of. Monday all my legal paperwork will be in legal form, no longer draft, just signing.

I am not in a hospital as I will explain later and I am seeking a palliative hospice. Yeah, due to a change, or info, we can applying for a palliative care program and hospice. I want this. If I could go into palliative care hospice, I wouldn’t be a patient, because there is no cure, so I get a name back. In a hospice the people who are used to the needs and limitations of palliative patients would assist me. And Linda would have a real break, she could recover. As it is now, I have surpassed the abilities of regular care workers. I need people who understand that I might not have strength to lift a drink, or transfer on my own. I might have many TIA’s (small strokes) a day, have memory regression or just want to lie there, might have demensia or keep trying, like this, to narrate. And the staff is used to that. Plus they will have counseling for both of us and REAL pain control (for me! No opium for Linda!). No one is worried about addiction anymore. People in the care-taker groups talk about the hospices as great places, places I could be safe AND have dignity.

Where am I medically today? My left eardrum has a significant rupture from a blood pressure spike from my aorta. The left side has a different blood pressure, much like each arm on me (not you!) has a different blood pressure. In this case, the high blood pressure (most likely diastolic) found a weak spot and exploded out. When I used a Q-tip on the tip on the side of my ear, it changed the shape of the eardrum, opening the rupture and letting the blood flow out. There is still blood behind the eardrum, and tomorrow I will need to see if it needs draining. Thus the dizziness. More problematically, if one side of the arteries going to my brain has a very high blood pressure, my chances for a massive stroke are dramatically increased. I also have intermittent fevers, dementia, blindness, and got food poisoning, and the seizures and pain are back. And I pass out a lot, and stop breathing a lot, and am unable to convert enough oxygen which increases my pain dramatically. BUT the heart murmur wasn't permanant damage, though I have increased erratics. Beyond that, things are stable.

While I would love to say I stayed in bed with some books and the victorian silver mirror sent to me by a reader, and Miko, I would say that happened, um...ONE day...um..part of one day? The problem is oxygen. I can’t convert. I have a few minutes without oxygen, and any exertion, particularly talking, like, normal morning greetings will put me in oxygen deficit. Which is why yesterday I seemed to pass out every 20 minutes so 30 times or so. I go from portable pulse oxygen, to continuous, to mask. And I stop breathing a few times a day. So I have to have care-taking full time. If I want to live (I do!). So if I want to leave the apartment, I need to do it within a hour or two of waking while I can use the portable concentrator for my oxygen needs as soon I will need full time oxygen.

So why am I not in a hospital? Because hospitals are great about stabilizing conditions but pretty terrible about getting sleep. Anyone who has been with eight people in ICU or critical care know that a lot of machines make a lot of noise. My medications make me extremely noise sensitive. They are obsessed with getting 'better' in the way the majority of people do. So, if I needed fluids, and IV would be great, and I am waiting to go and get an IV port put into my arm if they have one for blood transfers too. Hospitals are a great place to ‘recover’ meaning to have the body heal by using the body’s automatic systems aided with medicines. Except, if you have hyper-somnia and need 11-13 hours of sleep and every minute you stay awake, your body’s automatic systems stop working, and medicines do the opposite of what they should do. It is not a good place. After I was awake for 10 hours from the food poisoning Raynaud’s covered the FRONT of my arms, my torso, my hands were black and I was on an oxygen mask re-breather (the oxygen to EVERY organ was being threatened). I couldn’t move, I was having TIA’s.

See, a particularly spice made it past my pro-biotics. Well since I have no flora or fauna anything not stopped by the pro-biotics means irritation and well, let’s say lots of time in the bathroom. And no absorbtion of food (so no energy). And the shutting down of systems like: sight, hearing, touch, oxygen conversion, blood pressure, and an increase of seizures. Like the one which seperated my shoulder today (tore a bunch of muscles). Plus it gave me partial paralysis; in my writing hand too! So I lie there with Miko guarding the world for me. I can’t see out of one eye. But I’m not dead yet.

And that is what is hitting me, as I lie there, reading when I can, books which are gifts from kind other people (and thank you SO much for that - big quality of life jump), thankful for the gifts from other people. All I want is a chance to be an other person, to be let loose on the street with a day to find a job, to support Linda during her disability, to get two jobs, to have hopes, to find every person seperated by disability and send them some books to read, some joy in their life. I would have plans that go on into the fall and following spring. And we plan the trip to the in-laws realizing we could go to Cuba for the cost of seeing my in-laws (maybe we should ALL meet in Cuba!). And I could work and realize now how fortunate I have it. Realize how much I need to give back. That’s what I dream about.

Does that mean there is a cure, a slowing, a stopping in my variation of Multiple System Atrophy? No, but damn if I’m not going to keep trying. We just got a whole six pack of news and Linda is trying to process it. She will be making a blog post soon (tomorrow, I think) and I recommend you read it because it will likely change our lives, hers and mine; one way or another. Right now, I need to lie as still as possible but I also need to have an electric wheelchair delivered and fitted, a full brain MRI done, the final legal signing of will, medical intent, living will, etc as well as other medical appointments. How that news will blow my life apart, I don't know yet.

But as I lie in pain waking in the night, what I think of, and what lashes me, if I can move is that there are people out there who I can still help. Even a postcard can be a help. And I seem out of time. Can I still send an email, a card, a letter? Sometimes it is a way to say goodbye, sometimes it is a way to say thank you. Because if it turns out there is a possibility of treatment, there will be a LOT of visits to Seattle; and help needed. There may be a lot of medical tests that would take months over here and I don’t have those months if they need that test to tell the Canadian medical system to give me different treatments. Do I want to live 3 years, or 5 years? Do you know anyone who doesn’t? Electric wheelchair, manual, in bed, I’ll take whatever life you’ve got! I’m not picky right now (Well, I’ll turn down zombie but that’s about it!). So there is a lot of pressure on me to get things DONE, while there is time.

Tomorrow Cheryl will leave with postcards, because I broke down in tears tonight at the thought that I left others as I promised I never would. I promised that I would always try to create a world where never again will anyone have to experience what I have experienced. I thought that was sexual abuse, rape, incest. Except, I for one, have found after two years that medical people and systems can be abusive, bullies, dehumanizing and feed off humiliation, then leave a person feeling it is all their fault for permanently feeling crap (chronic condition) if not worse, having a degenerative disease. And to know that there were people out there, who were waiting for my postcards, our postcards for it is the three of us who work on them (Linda is the one who made the muffins, Cheryl is the one who stole one) was too much to ignore. I sobbed at the abuse of the system, at the last two years and the thought that someone was feeling as bad as I was and nothing, not even a postcard would come for them. So we did some postcards.

So it is 6:00 am, time for me to go to sleep, as I am on the mask with black fingertips and purple hands. Tomorrow, Cheryl takes with her what I can do, a few packages in what two weeks of planning and the energy of a week used in a few mornings could do. And some postcards, always the postcards. People have given: to me, to Linda, to help us survive, both the mental and physical battle. Thank you.

That is what I was doing before when I was pulled from the computer, frozen, unable to move. Saying good-byes. When I go, be it in five days or five years I will be found doing. YES, I need to rest, and if I keep going as I am, my life expectancy is dramatically decreased. So I am going to rest, going to say “No” and lie in bed. Going to sleep. But I am never giving up; I will never leave a person ravaged and abused by the medical system alone if I can help it. I can’t always be there, but I can try to be there when I can. Just as others have shown me, by their example: the people who write me daily, who write me weekly, who care and contribute. I want to say it is in FAR excess of what I deserve...but who am I to take away another's choice. Sometimes, we are far more fortunate in our friends than we would deserve. I have been.

Forgetting and regressing: tastes of my life

Important things first: The kitty will be called Miko so I can a personal shrine maiden
....or Indy so I can remember that I’m not dead yet. Sorry, still split on names but I am sure this will resolve itself soon. Second thing is that after seeing me in my fox eared hat Linda immediately demanded that she be able to wear it. She is very much like a sibling sometimes and I am surprised she even gave it back. But it suits her so maybe we will get a cat eared one for her.

Next important thing is that I am writing this while wearing a corset. A black corset with lace and black ribbons down the back. Will anyone see me wearing this? No. But I have decided that I, not my disease will start to dictate some things. I think I have to thank Abi for mentioning she had a corset, of which I want a picture (purple corset?) of her in it. And it helped me decide, “I will wear a corset today; in fact tomorrow when I go out to the pub I will wear a corset and a skirt or maybe I will wear something else but I am going to dress up!”

Instead of just transferring out of bed, I’m going to reclaim sexual playfulness, my whimsy - I want it all (take a note!). Yes it will take energy but with Linda to help, and Cheryl it is possible, and that is what I am about, right? The possible. I live with the sword above my head on thread. Maybe my foot will stop hurting or the other will go back to normal size if the letter sent gets read and I get a better doctor. But right now, I am living. Living. Not Dead. And I plan on doing that for some time. And I want to thank Frida, Cath, Tom, TJ, Raccoon, Wendryn, Abi, Lene, Robin, Anna, and so many other people because…..the plan is starting to work. I am looking forward to Manga. Indeed, I ordered some with gift certificates last night so that they would arrive in TWO Fridays from now. I want to look forward to every Saturday when the post comes.

I am READING. Do you know how long it has been since I have read? I am reading a manga series called Suzuka about track and a romance triangle on the track team because of my memory regression, I remember my track training for the hurdles, the hours spent in trying to get my lag leg to go lower, to just clear the hurdles. The running sprints until you vomit. The high jump, over and over. That is one HARD piece of metal to land on. So a romance around a female high jumper (which I did) and a male 100 yard sprinter (which I did not, I did 220, 440 and 110 hurdles) is right up my alley (plus the team manager who gets people towels and is after the guy). Reading is fun. I think I missed it. I will try to get a book or two of the series a week.

There is also, to get a bit biological, two different pro-biotics on the wishlist, as we have figured out that I have absolutely no natural fauna in my intestines. So the more pro-biotics we have, the more we can try to restart that and the more I can absorb different minerals and vitamins from my food, which I haven’t been. That means more energy. Am I going to beat this disease? Dunno, but I’m not waiting around for some doctor who won’t order an X-ray. With the help of many, many people I am starting to look ahead. And I am entering the Times Colonist 10K that is in six to seven weeks. I would like to find another race before that, as I am already in training. That 10K is part of the B.C. Race Series and will give me a ranking, provincially and nationally, if I want to go to other races in the series. Will I pass out? Yeah. Will I make the finish? Wait and see. What I will say is that the head coach of wheelchair racing will be there to race, and it will be 17 years of racing for him. He is faster than me by 8-9 minutes. I am going to try and pass him. I am going to try and finish before him. That’s right, I am not just participating, I am RACING.

Hard to believe it but yes, Elizabeth McClung has a race, like competition, and has an opponent and almost has a plan. Okay, yes he is a male and has been doing this well, almost decades longer than me. He has a better racing chair than me, he has better racing gloves than me, he has better form than me, and he won’t have to be on oxygen or carry oxygen canisters. That is the down side, but my advantages are…..um……I can work on my form AND I will be on oxygen, and I will only be on oxygen for the time it took him to finish the course last year, 48 minutes. Yeah, is someone who is terminal and stops breathing and has heart problems taking gambles with oxygen a good idea? No, but it is a very Elizabeth idea. I am serious. I race, I go, and have one good hour, that is all I need, one good hour to live my life. I am willing to work toward that.

Most people can’t understand the complexity and personal devastation of this disease. I am now advanced MS in the morning and progressed ALS at night. That’s just the physical. It is my mind, ripped slowly to pieces that bothers me the most. I say that I can’t remember beyond 24 hour or 48 hours with emotional exceptions and people say, “Oh, wow, that’s me on a good day.” Really? Do you know the name of your partner or do you say, “Lady, why am I in this bed?” Do you remember the names of your children, your last vacation, you appointment this week, your appointment last week, the last time you had sex, the last time you had a romantic evening, the person you fell in love with, and how that happened? Do you know what day it is, what month, what year? Okay, now take all that away, take everything away and you don’t know what country or city you are in and try to go get a coffee. First, you don’t know where money is kept, but say you have some in the wheelchair, you don’t know why you are in a wheelchair but you body seems to know. They ask your name, and you realize you don’t know what your middle name is. You stutter out your name and they start asking about loyalty cards and people are staring and you realize you don’t have a clue what they are on about, or what just happened to coffee? You have never heard of this chain, STAR buck – is it named after a horse or a spaceship? You just want to be home. But when you are there a total stranger comes in and says your name. You ask what they are doing? You want to dial the police. They say they come every week to get you lunch. They look toward the kitchen so you can tell they have been here before, so you let them stay. You ask them questions about what they are doing and how long they are staying and they laugh and say you ask the same questions every week. The agency won’t let you take pictures of the workers so that you have an idea who might come through that door. They scare you because they know so much about you that even you don’t know.

That is an iota of what is like, not forgotten keys but not knowing how to get to the bathroom in your own apartment because you don’t recognize the apartment as yours and you are too scared to open doors randomly. It is about having a conversation or sending an email you spent an hour on only to be told you did that three days ago. It is about buying things over and over and over.

So because you have an extraordinary IQ, you can process information quickly, and you take every single eye and body cue to play along. A person comes in and knows where your phone is, so they must be home care. They know your name and you apologize and ask theirs, and did that problem get resolved? (Everyone has a problem) So they start talking about their daughter, and suddenly you know something, and they think you remember. And that is how you get by, spending all your time either taking cues or reminding yourself EVERY day of what you have to remember the next day, leaving lists, saying things over and over, in order to remember.

Then there is regression. Which now seems permanent. Whatever age I am biologically, that is not where I am getting my language, or my memory. Some days I am 20, some days I am 23, sometimes 18, I am fresh in the world. I have all sorts of dreams and hopes and plans I want to try out. Linda talks about a class and I tell her that I want to take pole dancing, and laugh about how my parents would freak, so let’s do it! I want to take a degree to be a lawyer. I want to plan a trip to go on a Safari, and then maybe I could go back to California and hike the San Gabriels, see all the white tailed deer up there. My life is ahead of me, my choices ahead of me. I want to get up tomorrow and go up to uni and see what clubs are interesting, maybe I will join the frisbee golf group, only there are WAY too many guys with beards in that group. I want to do something fun, I want to learn juggling from some guy and have him try to pick me up and then leave with my girlfriend. I need to get back on my jogging schedule, because there is a marathon coming up….what city are we in again? Oh, we can do the Seattle marathon then. And these are the memories I know, the running, the practice. I like reading manga, I want to work in a book store, that would be cool, wouldn’t it, then I could buy it at discount or maybe read it for free. I can do that, work part time in the book store while I go to uni for my law degree, I mean I aced my first degree and I was invited to join the debate team. These are my memories, these are my words, this happens not once but multiple times a day.

The answer is always the same. You can’t, I’m sorry sweetie but you can’t, you did your degrees and now you are very sick. “Like how sick, like something from university, a bad flu?”

Like dying.

What?

Like dying. And she tells me and I say, no, no, I’m going to go to law school, and I’m crying and I’m going to campus to find some friends and she says that no, I am too weak for that. And I cry and tell her it is the mono or something like that and she tells me, again, almost every day that I can’t, remember, I can’t. Because I’m not 21, because I’m not 19, because I’m not starting my life with all sorts of choices ahead of me, I am finishing, and just hanging on. And please calm down or it will trigger a seizure. “A seizure? I don’t have seizures?” You do now sweetie. And please, you don’t want one.

Virtually every day, sometimes several times a day. For Linda it must be hell, but for me? I had every dream, every future that I had ripped away. I was looking forward to the new semester, to pole dancing class to having FUN, come on, you are only 21 once! Only now I’m not? And all that is gone, and I can’t get a job so I can have fun? And I am dying? And I have seizures, and by this time my speech is going, and my eyes widen in horror as my speech becomes slurred to the point of mush. And Linda lifts me, Linda LIFTS ME? She lifts me into a wheelchair and pushes me to the bed. And I am not going to take a year off and travel the world, or go to Australia on a six month work visa, or head out and apply around town, because I am in a wheelchair and there in front of me is a hospital bed. And THIS is my life. THIS.I try not to cry but the pain and the difference between what my mind tells me is possible and what my body is saying, what is in front of me is too much.

NO, No, no, I AM 21! I am 19! I am 23! I have choices, I have to go on the skiing trip this month and do the jumps and scare myself and everyone else! Not at ALL like last year when I ended up at the bottom of the slope with the "Caution Hazard!" sign wrapped around me! I am not this person being lifted into a hospital bed. That’s not me, it’s not me. I can run.....why can’t they see? I can run. They say I run like a gazelle.

Everything I know is fracturing under me, like ice cracking, showing the icy water beneath.
That describes a pretty good day. This blog is the best four hours of 48 to 64 hours. There are all sorts of hell.

Right now, writing this, I think I am probably 25 to 27, I know I am not 21 but I have no idea what age I am. I know I am in Victoria but most things Linda talks about I don’t remember. I can tell they are important to her but I can’t remember, I can’t. I remember I used to try until my brain exploded. Now I just smile that sad smile which means, that she is talking to the empty shell. Sometimes I regress to 7 or 5 and that isn’t good, or 12. 12 means at least communication. Even if there is a lot of pouting. Sometimes it is 4 or 5 and I go around untying everything in sight, every shoelace is untied, and I giggle all the time. I don’t think I’ve gotten to the point where I flush toilet paper, but I am sure I will. That is just part of this disease. The chance to talk to ME, to even part of me, the me who can recognize from the bookshelves that this was a pretty damn smart person. Even if I can’t feel anything about these books, they are very interesting and odd, from 17th century chapbooks and Babylonian dictionaries to books of poisons. So talking to the me that can recognize that I am probably not 25 is fortunate, as I won’t be here for long. Hard to know how long. And 25 is a LOT less emotional than 19.
I don’t know if that helps you understand what is happening to me, or if you just find it amusing. It isn’t amusing when someone comes in and tells you everything you hope and dream and believe in, and are hoping for in the future is a LIE, because what you feel and think is a LIE. Because you are dying and now it is time to go to your hospital bed, and you try to protest and you can’t speak, and you are too weak to move. And you try to tell them, no, that isn’t true! How can all that I think be a lie, the vacation in spring break, the job at the university bookstore, the class paper coming up, how can that be a lie? And that is replaced with the knowledge which drips down like acid that you are dying, that will die, you will die soon. And that none of the things you had planned in your brain will happen. All of your hopes and choices are gone, that you are going to die, and this is just part of your brain dying.

I hope that helps. Parts of the brain haven't stopped dying, or haven't yet. I try with the parts I have when I am connected to keep challenging myself mentally. I am trying to create new brain connections with reading. I have even picked out some books with WORDS to read. And Linda is challenging herself too; she has chosen a book on care-giving highly recommended on the wishlist. Also after I pestered her to have some FUN time, she put on all the romances from Flipside she hasn’t read yet (flipside is a funny, 21st century romance with independent women and gay side characters – 1 cent plus postage). As for me, the first four books I want to try reading are on the wishlist: Gosick (Conan Doyle style mystery with goth girl detective), Be with You and Ballad of the Shinigami vol 1 & 2. The last three are about death, and Shinigami is about how Momo, a girl with a cat who helps people move on. While Be with You is about what death means for those who die and those left behind. The four are on the wishlist and all qualify for 4 books for the price of three for free shipping. If anyone wants to get me a gift, this is what I would like: These four books so I can learn to read, and to learn how other people deal with dying. If not, that is okay too, I will find a way. (oh, yes, Linda learned early on that when I regress to 10 and have no sense of money that using her Visa to buy a dozen plushies on Amazon is a good reason to hide the Visa!)

The problem is that not even Linda can accept the disease, and I can’t either. I force myself harder and harder to work; because I have less and less time when I have a workable mind. I WANT e-friends. But I am chasing a life, that isn’t mine anymore. Yes, I am going to race, but not if I can’t learn how to sit and read, or sit and watch TV or roll to the park and relax in the sun. I am not 21 or 23 and I don’t have that energy, no matter what my mind says. I need to learn how to have fun as ME, not chasing something I no longer can be.

My new wheelchair arrives next week. I will be embarrassed to take it outside. While I am too weak to push my manual myself, it seems like giving in. I already have to give in and give up dreams every day. But I will, because I have too. That is how I fight now, by forcing myself to take it, and to go on.
Like all medical stuff we got hit with a big bill, as the ramp to get it into our van isn’t covered, and geez are those things expensive (ouch!). Our medical fund has taken a hit between that, the non covered medicine, and the pro-biotics. It turns out that dying, or rather NOT dying is an expensive business. Almost daily expensive. Particularly the oxygen and the full EMT station we have here at home (once the heart paddles arrive we will have the same medicine and equipment as a hospital too, except IV’s and blood transfusions).

But I am going in the 10K, and other races, and go to Hawaii. So next week, I am selling my bike. My custom make extra large frame and extra spokes and triple bunted touring bike (the frame is 27 inches, you can’t ride it if you are under 6’2”). So if you are interested let me know. Same with my skis. While my brain tells me I CAN ride my bike, the other part tells me that no, I have limited time and if I want to have dreams, I need to do what I must to fulfill them, NOW.

There is no doubt about the dying, and I don’t determine that or the regressions, I have no control over that. I do have control over the race and the training and wearing a corset even though I am staying inside today because I am a still a sexy wild woman. And Linda will see it. If you get what I mean. This is what I am after four days of being sick and having a fever. Don’t like it? I’ll race you? Oh, you are able bodied, I’ll STILL race you! I may have the strength of a kitten but I got my attitude back, at least off and on. Thanks to everyone who worked with me to help me get that. I will wear a corset tomorrow, and I will go out. Because tomorrow may be the day I die, but if not, I am looking forward to the manga coming, and starting to read books with all words again. And that was a group effort.