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. 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.
1 hour ago