Wednesday, April 29, 2009

Nostalgia

I haven’t been able to rest for the last week because earth movers came in with jack hammers and trucks and heavy machinery and took down the house across the street. The next two are slated to go as part of a development scheme that passed through before I got sick. This shady side of the building apartment; now fitted for my survival will soon go.

I don’t know where I will live, but I know that without the sleep, I am only awake a few hours a day, and not healthy during those. Each afternoon, waiting for sleep, I fall semi-conscious. An hour I only breath 20-25 times is not a good sign, it is not a good daily sign. We have talked to the developer for whom I am sure there is always ‘discomfort’ or as one manager said, “You don’t HAVE to leave, you are choosing to leave.”
I pulled off one of my winterized gloves (I had severe frostbite in the 60 degree weather the day before, and before that), and one hand one was green. “Do you see that, that is a body desperately trying to shed heat, only it can’t. The next stage is heat exhaustion, the next is coma.” I pulled off the other glove. I held up my hand, which was purple next to theirs, they tried to recoil. “This is a sign that I do not have enough oxygen in my body. If I do not sleep every few hours, my autonomic system fails.”

“Well there’s no place for you here.” They said and shut the door. I am tired of people viewing the never ending work of staying alive as a choice or an eccentric attitude. There are three consistencies which make up my day: 1) Any and all autonomic systems can and will fail at any time; 2) I will have no memory and 3) Every day is variable and I begin to weaken the moment I wake up (if I get only a few hours sleep due to earth movers, I wake already weak; if I have to stay awake 13 hours day after day, because of earth movers, I start to fail in dramatic fashion). The hospital can’t save me. No one can save me but having stability and consistency. I should put a 4) Every single thing is a variable of stress, from sound to movement. Each variable adds and accelerates the daily degeneration. If I have noise all the time, my muscles tense, I tire, I get headaches, what failure might occur in 5 hours now occurs in four.

Number 2 is critical as I do not know. If there is someone on the phone and they want to know something that is more than a few minutes to hours old, I do not know. The more fatigued I am (which happens twice a day, right?), the more difficult it is to remember even the last few minutes. I spend time reading, and repeating and trying to remember. If you ask a question, the answer is, “I don’t know.” But I can’t say that. I am asked questions all the time. How’d things go with the doctor? What do you want for lunch? What do you need? What time did you get up? Did you file those disability forms? Did you get that letter from…. – I don’t know, I don’t know, I don’t know. I don’t have control over it, I just don’t KNOW. I wish I did. I don’t know when the trucks first arrived. I don’t know how long they have been using chainsaws every morning (7:30 am) and working until past 6:00. I don’t know.

All I know is that I cannot remember what I need to remember to keep myself alive, I have some things on my ‘brain board’ and I know some times, and there are some lists but that is why I have care. They can tell what I cannot feel (As I cannot feel much of my body at all), if I am too hot, if I am cold and clammy, if I am going into shock and take action. It is 11-14 degrees (54-63 degrees) and there are two air conditioners full time and a fan going to try and keep me alive. I don’t know how much oxygen I need, I don’t know what to do sometimes. I feel very bad, and fall to the floor, and I know this means something but I don’t know what. I don’t remember. I don’t remember what to do. Time continues and I still cannot sleep, I am sleeping in the hallway using the rooms as another sound buffer but it is not enough. The heat is making me pass out, the sound is keeping me awake, my heart is faltering, my lungs faltering. I overheat, I can't feel it and don’t notice.

My home care has fallen through and right now I have lost all night shifts and am down to two workers who come some days. I forget to drink, I don’t eat, sometimes for days as Linda is working again now. She finds me, and puts me to bed where I sleep and sleep and wakes me before she sleeps. I do not remember how I came to be on the floor. I try to write down what calls I received and what they wanted. Remembering, crying in frustration, talking are all stressors, I get worse; my memory gets worse.

I wish, for the days when I was an equal human, and I could with others take a chosen break, to rest and relax. I want to go on a date. I want to spend time with Cheryl and Linda that isn't like an ambulance ride. To enjoy the things like a hummingbird I saw today. Where? I don’t know. When? I don’t know. Every ten minutes I have to check my health, every ten minutes someone has to check my health. I don’t have a place to live, I don’t have the finances to move even within my own city or a few blocks. I wheeled this afternoon, in desperation trying to find a block WITHOUT future construction and with the rarity in this town (level entry – or no two stairs after the entry!). I don’t want to leave this neighborhood. I need a top floor two bedroom apartment on the non-sunny side with quiet. I need a place for the hospital bed, the two oxygen regulators, the grab bars, the wheelchairs, and then of course a place for Linda and a place for the over night worker to sleep. I need it to be the same price. And yet, I don’t know how I am going to find it. I will call city hall when I get up and am most rational, and don’t slur and don’t say odd things, or forget my name and find out if I can put an injunction on the building until they find me a place. Since the disabled and the dying have no rights in this city but a developer has many, many right, I doubt that will come to much.

This apartment is where I have lived in Canada, this is the place I know. When I get confused, I will keep trying to come back here as this is home. Even if I find another apartment, they will probably find me out here, waiting by the door. That is, if I manage to survive the summer. I am trying to get well enough to see a doctor, as going in with severe autonomic failure doesn’t help; they have the paperwork, and they can’t fix that. I want them to focus on what they can fix. I need to get well and I have to move. I need stability and consistency and I have no home, no home care. Hypersomnia isn’t a choice, it is a medical condition. Leaving isn’t a choice, having all of this isn’t a choice. I suppose it would be easier to just be a bit less planned, a bit less smart, a bit less proactive, and wait on the medical profession and thus die. Wait on the kindness of the landlord, wait on the kindness of the builder, wait on others and die. Every day, the moment I wake, I get weaker. Every day, if I don’t work and fight could be my last day, it is my responsibility not because I want it, but because no one else will help. And when I am too fatigued and thus mentally incompetent, if care is not there, then there is the potential to die, or I wait, or I sit, because I don’t know what to do…..because I don’t REMEMBER, until Linda or someone comes.

I know that the people having vacations or ‘personal days’ or forgetting to get back to me are not heartless, it is just no one can really believe that someone can go into complete heat stroke coma in an hour and die a few hours later. And that they do it in their bathroom, or while sleeping. No one wants to believe that as the lack of oxygen spreads through the body and cells themselves have it ripped from them to feed the pain, it makes pain and weakness, which put the body in a balance which is not externally sustained, will terminate. And when someone calming, or not with a certain intensity shows them, in front of their eyes that it is already happening, that I AM already weakening, already dying TODAY, and that I am out trying to find a way to stop that from happening…..they close the door. This is not what they want to know. They are not evil or heartless, they are scared, and it just cannot register or believe. It is in the same way something like the spread of meningitis in Wales, where headache in the afternoon, fever and dead in the evening doesn’t register. “But I just saw that student yesterday…..they looked a bit flushed but……”

I don’t know if I will be pushing myself ragged trying to find SOME stability, SOME place to live where I feel safe, where it is quiet, or if I will try to rest up enough to begin treatment to prolong life. “For what?” Is what I silently ask some days. We have to move because of me; if I could find a job, I could, like Linda be away during the noise. It would be a mild annoyance. But no, in order that I live, we have to find a way to scrape the barrel bottom for moving funds. So more garage sales, more calling around to managers, who call legally refuse to rent to me because I am in a wheelchair (Linda will do the looking, I will wait until AFTER the lease is signed to appear – that is the role of lepers in society). Either way, I want to be smiling, regardless of pain, I want to be the person who writes happy notes, but…..13 hours of multiple chainsaws 30 feet away? For as long as I can remember. Is it not easier to simply stop checking every ten minutes for something I might not remember how to fix anyway.

I miss going outside. I miss picnics or looking at flowers. I miss knowing that I would live here and that this was home. I miss knowing that I could focus on joy, instead of having to play at adult, a game I tend to fail at more and more often. I like watching films now, as even the most minor character gives me a feeling of nostalgia. Of knowing something beyond, “I have woken up, is that AM or PM? Am I half way perked up in my daily weakening or has it begun again. What do I have to remember? What happens if someone calls? What happens if someone knocks? How many hours have a slept, do I know? No. What DO I know? I know this isn’t my home.

Tuesday, April 28, 2009

Times Colonist 10K 2009: The first pictures! (and short notes)

Here I am before the race, I have my MP3 on my arm (one ear bud in very low, just to give me a back beat, but not enough so I can’t hear everything) and you can see my timing chip is UNDER the footplate for my foot (Footplates are thanks to an unnamed Victoria sponsor who refitted the chair which was not only unusable but had chips of paint fly off at every wheel turn, very dramatic, not great for racing – they refitted the chair including footplates, cushions to stop my legs from breaking/bruising and my sling for oxygen, while leaving room for the Gatorade!).

My entire plan for the start was, “Wait until THEY go,” because a) I didn’t want to have to stay in a fixed line and try to compete with people who had chairs that could go straight (mine can’t, it needs constant adjustment) and b) I knew that road was bumpy and I wanted to get into my Rhythm, plus it was uphill for the first 1.5 km. The rest of them flew off (including the guy who ended up only 10 minutes ahead of me….?), the para’s as you see are using some sort of Billo Pad device (?), while I have to think the flat wheels are going to be a grip advantage to the para gloves that the three of us in the back are wearing (I don't have them, they cost like $1000, I have plain old spokes! - in fact my chair radiated 'poor relation').

We get a 5 minutes head start. The paralympian who kicked ass finished in 29 minutes. The fastest runner in 30. There was NO question I was going to be passed, just by how many hundred, thousands before the BIG downhill. As this is a course that goes down a big hill then just reverses itself you get to see the people coming back. 15,000 registered, over 10,000 ran, and THESE are the ‘elites’ meaning under 35-37 minutes. I am got passed about the time of the petting zoo!

Okay, in the brilliant thinking of the race planners, the most important thing is marking the 10K, so the turn around point is HALF WAY up a steep hill, a simple cone and no race people. You go down a hill, you pass the cemetery (nice view!) and you go UP a steep hill where there is a cone. You may notice big long 6 foot arrow doesn’t turn well. People would not give me space, I got it half way by leaning back so the front wheel was above the ground then pushing one wheel, however other runners, to gain that extra .01 of a second, I had runners were HITTING me to avoid going around me (thus a bit more time), literally bouncing off me to go INSIDE the cone. No place to stop to put on oxygen here.

Thanks to Laura who came up with the “Girl’s gotta Fly” bright t-shirts (later pics), as it was the only way I could see through a mass of humanity, pick Linda out easily and shout for her (or hoarsely shout as going, “CLEAR! CLEAR! For the love of God and your hamstring, CLEAR!” about 100 times tends to rip up the old voice. Plus darting into the oncoming lane, I saw James (the coach) taking on and trying to pass two of the elite runners going UPHILL. Dang that guy must train. For me, uphill was so bad, I ended up jamming my entire fists into the wheels and scratched up my arms but I wasn’t giving up an inch, just “One, two, one, two” sometimes a ‘one’ every second to get up that HILL. Here I am drinking from the gatorade that is in the camelpack under my chair. It uses clips all the way up to keep it stable (Cheryl’s idea), so I can drink when I want. Also you can see a note which give the cell phone and blackberry number of Cheryl and Linda in case I am slumped over. There are two ‘break packs’ which turn instantly freezing taped with medical paper tape to my chair on the long front part in order to deal with the heat. So yeah, with the oxygen I am hauling another 10-12 lbs or so.

Here I am crossing the finish line after the “seven hills” – there is a long downhill, where I almost ran a guy over who was totally into his I-pod and two people picked him up and moved him after about 10+ of us were yelling at him in unison, “Wheelchair, CLEAR!” And he was humming and grooving away. Another guy said, not realizing I was directly beside him, when told a wheelchair was coming through, that he couldn’t see the da*n things. I said, “Yeah, me either!” and then let off the brake and accelerated away, found a long stretch where cars are normally parked and went up to about 15-17 mph on that last bit. Do ya see me NOW? Sorry. Then back into the pack. They say, “It is all down hill from here” – LIE – there are seven major turns, each with a hill and some are very, very steep, like stop you dead and just do it by inches steep. Never the less, I made the turns, I got to the flat bit at the end and I made the course. I almost ran over the official photographer, sorry, bad steering.

(if you click on this picture you can see my earrings: running shoes - given to me by a reader - seemed ironic!) Here is the Team medic at the end of the race, she tried to educate the First Aid tent, the head guy was like, “I know all about her from last year.” - yeah, but since I now have seizure disorders and Cheryl was trying to tell them WHY it might be important to get someone who has grand mals out of a chair that you have to get into a hip at a time and were your legs are jammed against steel, golly I guess we will go with last year’s, “Lets pour lawn killer over her to cool her down.” So when offered the first aid tent I opted for Cheryl and Linda’s wonder pack of cooling devices and a spray bottle instead.

P.S. - the reason I look so completely rested is because I am not sweating....because I don't...at all. So it is me looking like this, me green or me exploded with bits all over the course.

I will try to come back when I can use both arms and give a full account, along with the rest of the pictures…including the AFTER pictures!

Oh, none of us saw a single wheelchair toilet: not the start, not during, not after. Nor was there a map we could find which located them. But then, with hundreds of people over 75 and 80 running (I kid you not), having a bathroom with pull bars would be of no interest, right?

Still, 10K and still alive..pretty cool!

Saturday, April 25, 2009

Times Colonist 10K 2009: why I should race

I will be doing the Times Colonist 10K in less than 13 hours. I have the official number and everything.I was going to say in less than 30 hours but I couldn’t finish this blog yesterday because I got too ill to continue.

I will be at that starting line tomorrow. I am also terrified. I am terrified because I don’t know even in my heart if this is just going to be a slow and somewhat prolonged way to die, starting in the race and finishing several hours after the end of the race. That idea was suggested to me by one who observes my health closely. Linda thinks it is a bad decision. That it is a decision which could kill me. Many have written that it is a bad decision, or a crazy one. And I don’t know some nights when I am grey and shaking in pain if I can do it, if I can bear the pain that long, or survive it. I say to Linda, "I don't know if I should do that race." I have been too ill to do any of the planned preparation or training.

Last year, I didn’t know if I could do a 10K either. I had never done a 10K in a wheelchair. I had just returned from Japan with a health condition which didn't allow me to sweat and seemed to give me energy at times but other times not so much. But I had wheeled a lot for 18 days and though I have never gone more than the 5K race I did in the Autumn before I thought, “Why not?”

Why not see what is possible? Yes, there was some concern about dying, or more probable, going to the hospital. But a year ago I wasn’t being revived to breath every night or too weak to move my own body several times a day, as I am now. I remember the feeling I had then and while I was ill and sick, now a year later, I am now trying to do THAT level of ‘sick’ which is between 5 times and 10 times the level of energy I have. I am trying every day and waking moement to work as hard as I can to keep up to that level. I am driven to do it. And it is KILLING ME, shortening what time I have to live. So I have to learn to lie very still. Doing a 10K is not lying very still.
During last year, each 10K race I did became slower and harder. I dropped boxing exercise entirely and did badminton until I had to drop badminton, shortly after Linda conspired to make sure I did NOT attempt a half marathon in the late autumn/Winter. So I haven’t exercised in 2009, beyond going to Sakura-con, and going to the framing shop last week which caused a great deal of pain for several days and that was 2 km in total.
The other thing in that unlike last year when I know I had a terminal disease, now I know that I, Elizabeth McClung will die. It is only that my condition is so rare that no one knows what can keep me alive or for how long. I am on a train which has no stops, no other passengers. I will never get to show people how great I am as a teacher at university, I will not have a row of my published books, I will not be able to ‘grow’ in any ways that people in society see as important (money, stature, position, self-assurance). I will not be able to right all the mistakes I made in life. No. The only question is “How long?” And listening to the description my grandmother death and her last week, it is so similar to what I live every day that it haunts my mind. Is that how close it is now? That because I did not wait for death, it is waiting for me?

So is this rebellion. Am I doing this 10K because for most of the rest of my life, if I WANT to have a life longer than a week or two, I will have a life sort of like this: a lonely party for the plushies, since Linda is at work and there are no visitors. I sleep every few hours, and I try to keep calm. But if I do this 10K, I can be, for about an hour, this instead: the old ‘I’ll do it my way’, Elizabeth, who shows up and confounds expectations? I sure WANT to be the kick-ass Elizabeth but no, that’s not why.

I am doing this because a girl’s gotta fly.And even if that girl is damaged, or hooked up to lung and other life sustaining devices. Even if that girl is scary for people to look at.
I am doing this because even I fail, I will have succeeded.

When I race, I race alone; each push, each pull, each inch will cost me in pain, and I want to show every human that one person, one woman, did not lie down when society expected her to disappear (‘oh so sad’). That for every twit along the course saying, “You’re so inspirational” there will be at least one tear of pain as I try to go up the hills (they are bitching steep hills). And they will say I am inspirational but inspired to do WHAT? Because what I do, I do alone. And if that means I flip the chair and am too weak to continue, then that is what it means.

I have a multitude of possibilities in front of me, but the one absolute way to failure, is to not even try. To never go down to that starting gate. The BC wheelchair sports doesn’t want me in this race, as they keep putting odd obstacles in front of me. See, I am not a spinal cord injuries and is a RACE. Races are about people who have trained or able bodied people or people in racing wheelchairs who have trained with an condition that is consistent and stable.

Bull!

There is a classification for those who have degenerative conditions called ‘the Others’ but no one ever shows up. I have not been able to get a classification in over two years of asking. So I go with the partial quad classification I have, when the one classifier told me, “Don’t tell them you aren’t an SCI, or they will come up with a reason not to classify you.” I was going to wear a t-shirt stating, “Lack of nerve signals IS a spinal cord injury!” But I am not doing this for them, I am doing this for me, for Sharon, for Jane, for Collette, for Victor, for Dawn, for Yanub, for Tammy, for Fridawrites, for Lene, for Wendryn and for anyone who comes here, able bodied, impaired, degenerative, terminal or otherwise. For every person who has been chained in the mind or body and challenged it. Racing, challenges and goals are personal. BC wheelchair sports & the organizers & society forgot that.

I don’t really want my name recorded in the list of who races. I just want them to know that there was a woman who had autonomic failure, dramatic nerve function damage, who couldn’t sweat and who was ill in bed the day before and came out to RACE anyway. Because that is what participation is about right?

PARTICIPATION.

Participation isn’t supposed to be about the most elite, or those who try to be the most elite, it is supposed to be about including people. I have believed in inclusive sports and I have believe in inclusive goals and trying. I have learned that painting, that gardening, that getting out of bed so many times a week can all be ways to challenge ourselves just as much as rock climbing, dance or yes, doing a 10K. Last year Collette did FAR, FAR longer for Cancer, raising $2,000. That makes me smile. And later this year (if alive) I will be out, in my racing wheelchair or if I am too weak in my POWER wheelchair doing the Terry Fox 5K/10K. Because I am NOT a survivor.

I WILL die, and it may be tomorrow, and if it is not tomorrow, it will likely be soon. Yet, I have no intention, no matter how terrified I am to die tomorrow, to give up even one hour of one day. Because every day I live is MY day, no matter the pain I suffer.

And if someone out there who has accepted themselves into a bed and a room hears or reads that a woman sort of like them, went out and did something, something they would NEVER consider doing. And by reading that they are NOT suicidal but they might decide to go out 25 feet from their room and look at the flowers, then I did it right. Because that person is now part of society, they are included, they are participating.

I am scared. Before medical operations, even though they say that very few people die I still get terror while waiting, and before they put me out. And when my partner and my own mind are saying that I have a decent chance, maybe greater than 50% chance of dying a few hours after the race....yeah, that is vomit level of terrifying.

I am racing tomorrow not for me. Because if I finish….I won’t know how I did it except for that like in the grand tradition of Canadian military I am too stupid to know the word “retreat.” If I do 1 km, I have done one kilometer and I have tried. I did the race, I just didn’t finish. If I do five km, the same thing. What I am trying to do is demonstrate that the greatest limitation we face is ourselves and the box that we and society build in our minds, in my mind. This is going to be, I believe, my last chance to do this race: The Times Colonist 10K 2009. I have no envisioned future beyond tomorrow midday. I simply don’t know if I will be in such condition I will be taken to hospital, or if I will go home and have a fever spike and die there, or if I will just suffer in pain. I can't imagine a future.

Oh GOD will I suffer. I hope that the people won’t be able to see the muscles as they rip, and curl up under the skin. I will suffer as I race, and I will suffer later, as my body goes into shock or when my body loses control and I go into a fever while my body is overwhelmed with so many injuries. But it is my suffering.

I have always believed that choices should be made regardless of the consequences. That if something is right, then it is right and good. I believe that simply by showing up, by going through the start line, I am telling the organizers of the Times Colonist and every single person who watches the early start of the wheelchairs that I and thousands like me exist in this city alone. That I am going to participate, because I, like every person with an impairment is part of society. I am saying that if you are overweight or undertrained or smoke or whatever it is that keeps you back mentally, you CAN, with some training still do a 5K walk for cancer if you want because participation is about representing ALL people, all those at risk, all those who are affected (but you will PAY for it!). I am part of society, you are part of society, all of us.

Whatever it is you have said to yourself that you would do if only……. I will sacrifice my body to prove to you once and for all that if you believe, if you try, there is no ‘if only…’. There is only whether you show up to start. What happens after that, happens.

That is my twisted version of hope. And that is how I fly. I am chained, but I fly. Yes, I am in pain, constantly, so much that one person has changed their mind: they believe I will not die, that I will rather simply be in more pain than most humans can contemplate. I hope she is right.

Whether it is 25 steps, whether it is getting out of bed, whether it is standing up for your rights; you can fly, you just need to try.

Thursday, April 23, 2009

How are you?

“Life shortening.” The phrase I live with. It means I could die tonight or it means I could live on for several years. When I am likely the third or fourth most expert person with my disease west of Chicago and I will say it plainly, “Haven’t got a clue.” It is impossible that I should still be here, and yet here I am.

How am I? A question I haven’t answered in a long while. I wake every day in pain, which usually means nightmares too (brain interpretes pain into the dreams, today I was run over by a train...but it was a very nice old steam train). I take sedation and pain killers to get my eight hours of sleep. Within two hours I will have passed out again, the slight increase of heat is draining a lot of my strength despite us having two air conditioners going along with fans. Today I woke with a full body scream as my leg muscles went into full spasm/Charlie horse. Luckily Linda was leaving and was able to calm to leg and give me a muscle relaxant. She saves me, so many save me.

I have been in pain in the muscles and the bones, as well as pain on an almost cellular structure. I cannot lie or sit still due to the pain and yet passing out is the only way to stop it. With three different pain killers I can sit enough to read sometimes or focus. Right now I am turned sideways and trying to type through the haze that the pain is bringing; I took these pictures earlier fighting against the nausea and pain before finally falling to the floor to writhe before curling up. That part of that day done.

It doesn’t seem much like living but I am working to keep at it. I have things to look forward to, like the 10K this weekend. They tell me I must not fly. I tell them I fly or throw myself off the railing enough to make it look like flying. I don’t care if it takes all day, I will have this.

Physically, um, lets see, I have much of my right ribs and inter-costal (sic) muscles ripped due to seizures, so that makes it hard to breath, I feel under a weight of stones, buried alive sometimes. As for how my muscles feel, do you know how in gym classes they shout at you that you can do “just one more” until your muscles collapse in quiver. It is always ‘just one more’ and I drop a lot of stuff. But I am not crying, well, not today, or yesterday. That’s just pain, and passing out, and stuff like that. And no one really knows what it is like to be me, or you, do they? They tell us that pain is relative but I never listened enough. Pain and situations are relative and what I have other people think they could not survive (well technically no one can) but I think of what they have endured for years and think, “How do they do it?”

Not just those with disabilities but the AB’s, those who risk themselves, their heart, their emotions in new ventures, in confessions of love, in confessions of limitations. “I cannot do it alone.” Is one of the hardest statements to say. Here I am, according to Linda, with Cheryl and Linda to watch over me. Not exactly the picture I have of myself.

Now this is how I tend to see myself: I am all three, I am the ‘serious’ one trying to get some reading done, I am the one calm and serene with the parasol (notice that one is small and far away) and I am the wild child who has gone crazy on the sunny day with a hose of water. Woo Hoo! Why is everyone such a party pooper!?

With 15 years behind me and new friends coming up and passing the one year mark I have to wonder how much can the lion and the lamb live together, the cat and the mouse. I think, that perhaps some things, like caring, like having desires and wanting someone who gets those desires is universal. Of course, I am the cat here because I have the rocking jewelry. And because Linda has something to eat (hazelnut cheese!).

I am coming to terms with myself, or rather making friends with isolation. I have always been one to jump into things and when I can’t, I instead plan what things I am to jump into. Now, I lie on a bed, propped up and listen to the rain, and try to breath, try to read a little. I try to dream but after a year of trying to remember, it is easier to look backward than forward.

And yet there are people, those with chronic illnesses, who have learned to make friends with themselves and their dreams. So there are dreams that are slower, are more meditative. Maybe they can teach me how to live out the ‘shortened life’ in a way that is different. People didn’t understand what it meant to love something and lose it of choice. Well, see, you need to love yourself enough, that while you caress yourself, you are also strangling the life out of yourself. Because THAT you has to die so the new you can live. How can I learn to shower with assistance, to need help on and off every wheelchair and toilet, need assistance in these things in order to spent my thirty or sixty minutes outside a couple times a week? I choose where I spend what little reserve I have, and I can’t do that by being Elizabeth Fucking McClung. I love her, but her vigor is killing me, her ‘my way, even if it kills me…” WILL kill me.

So I choose to stay indoors most days,I choose to stay in bed some days, I move very little and get as much help as possible so that I do have a choice left. That is what it means. I CAN go out with Linda and Cheryl because I learned to love them enough to realize what real selfishness was: wanting it all without paying the price.

That said, as we took these pictures, Linda said, “Oh, I don’t think I would look that good in a tux.” My heart leapt! “Uh….well, I don’t look good in green.” I mumbled.
“You look great in green!” she said.

“I think you would look great in a tux.” I said. We looked at each other and Linda said, “You know, there is a bottle of champagne in the fridge!”

We were, alas woken by night care. I asked the night care worker, “You aren’t able to assist us with sex are you?” She sort of stared. “I mean moving me to different positions?” I amplified.
“We can’t do any lifting!” she said with a “WHEW!” little laugh. DARN.

Linda is talking about moving to an apartment where I can have a kitten. I am for this except for the packing part. I don’t know if Linda has thought this through since, she is likely to sort of end up with TWO kittens, as hey, if playing with string looks fun, why shouldn’t I do it! Of course, a kitten might mess up my elaborate preparations to meet Linda at the door as she is coming home!
How am I? I am achingly lonely, even when I am surrounded by people who need information whether it is workers or doctors. I think of too much. I think about how these are the same workers who were there when my grandmother’s oxygen wasn’t turned on, and she was suffocating. Are they the ones who might work for me? I think about how she isn’t coming back, not another story, not another question answered. It bounces around in the head. Just like how I went on the MSA and autonomic failure websites and forums and asked some questions and gave some comments and was roundly ignored because…I was a freak. Even for those with autonomic failure, my rate of decline is 3X to five times faster than them. I am younger (people are there to talk about taking care of grandparents...and parents sometimes), I have done everything they say to to: seen a neurologist, seen a specialist of autonomic failure who can say for sure that no, this isn’t the “nice” kind of autonomic failure. But She owns the clinic, has seen thousands if not tens of thousands of people with central autonomic failure and I have that and a bag of fun more and yet...she doesn’t know what this is. That bangs around in my brain, and I am the one outside when everyone else is indoors where it is warm.
You really want to know what I feel like? Once my parents left and I think my brother was supposed to be watching me, or somehow everyone thought everyone else was supposed to be watching me and I was playing with the other kids and then one by one they went home. They had homes. And it started to rain. Until eventually I was alone. And every time someone asked I said, in slightly more hysterical tones that THEY were coming for ME. They weren’t going to leave ME! They were COMING! I was going to go home and be warm and be fussed over, and I wasn’t going to be out here, on the saddest of all places; a playground with no one to play with and pelting with rain. But they didn’t come.

I guess that is part of the looking forward/looking back thing I need to work on; I am trying, and until then, Linda and Cheryl, who know what it is like to have a child, a teen, an adult and an person who can’t understand why they can’t be an equal (Right before they go into a seizure and forget the last two days) are taking care of me. They know what can keep m occupied (sometimes even happy), and sometimes it is rather simple and sometimes complex. But I always try to have cool and matching jewelry! I guess that is the honest answer to “How am I?”

Er....so..um...how are you?

Tuesday, April 21, 2009

Postcards, the dog meet and greet, a cat and uke.

Sunday we worked on the last of the postcards and I wrote the last of the postcards. It wasn’t the 40+ we were hoping for but rather 22, and Linda and Cheryl did much of the postcard matching as I was mentally incapacitated at the time. I did my share of the stamping and here we have some of the new rubber stamps as well as some of the new inks we are trying out. I think they are very pretty.Also if you look closely, some time ago, a reader gave us the gift from the post office of Photo Stamps (we still have credit left - stamps.com – hint hint!), where you upload photos and then they get turned into stamps by the post office. Then they are sent to you to use. You can see the two types of pictures we picked (I got to pick one – me racing! Linda picked the other – me the town slut!).

Then in the early afternoon we went to the dog meet. It isn’t an official event except during different festivals (like during pride for example) but it is a 1.5 to 2 km park where dogs can meet each other and run and play and have FUN. And the owners can meet each other as well while we get to play the ‘what breed is that?’ game. This week we saw a small dog which was a cross breed of a daschund and a black Labrador I think, we were all going, ‘and how did that work....physically?’ I did not take pictures of the dogs because I need consent of the owners (many are show dogs) and besides they were there to play. And some were doing stick catching and some had those ball catchers and would run and leap for the ball.

I like BIG dogs, the bigger the better, there is one dog in town that looks a bit like a small bear which comes, but it wasn’t there this week. And Linda like the LITTLE dogs, particularly if they are carrying a BIG stick. At one point there was a TINY dog and a large to medium dog fighting over a stick and I said, “You’re thinking, ‘if only the little one would win and carry it off!’ and she started grinning.” Seriously, she can see it over and over again and she loves it. She loves the small dogs (which ones do you like?).

It was a gorgous day with the straits being clear and smooth. There were only about 60 dogs or so when we went instead of the 200+ that show up. I know because it is also a ranked jogging site with markers and if you happen to TRY to go jogging on Sunday, well, good luck, not just in being chased but in getting around the groups of five to eight dogs having a chat. But the first thing we ran into was a CAT. Yes, someone, a goth girl had brought a cat down to the dog meet, on a leash. Well, I had never seen a cat on a leash being walked much less on the Sunday dog meet but it seemed okay, like to go and explore. But of course, a dog found it, there was barking and hissing and backs raised and then after the dog left, the cat started crying, and the owner picked it up and was going home. It sounded just like a human. I had never heard a cat cry before, and it was kind of sad and creepy, that it was so frightened as to cry. I did feel bad for the cat.

We walked and rolled the length of the course and Cheryl and I had a picture taken, so here is Cheryl, yes she does come and visit, she isn’t just a figment of my imagination. Of course we (Cheryl and I, the two lesbian teenagers) were enjoying the other joys of the days of spring; women in not much at all. Some jogging, some with annoying arms around males (ug!), but still, very nice. Back in non-ogling land, here is the no leash area, with baggies every 100 yards or so. A path follows the top of the cliff with many access points down, this is the best one for smaller dogs. It has several fair sized running areas with a beach to go down to and the sea to jump in and then shake your coat ALL over your owner to show how much you LOVE THEM, plus sticks to pick up. So a fun park for dogs.

We saw a tiny dog, I think it was a small corgi bark and drive off a medium sized dog. I was sort of impressed and sort of felt, that just because the dog is bigger doesn’t mean it is not gentle or doesn’t want to fight. I like watching dogs because they are very easy to read. There was one Dalmatian which was playing catch with a stick and then another dog ran by, they sniffed and it ran for a few seconds with the ‘new friend’ but then the owner threw the stick and the dog kept looking back at the friend and the stick and eventually the stick won. It raced back, picked up the stick and then ran about to see if it could show it off to the new friend, “Look! I have a stick!” Even the ones who wanted to run some more and being put in the car were like, “More, more, we want more!”

Afterward we dropped off Cheryl at the Ferry and I promised Cheryl that next time we would have Jiffy Pop Popcorn! (when did you last have some?) Which indicated I was about 18-19 as Linda had NEVER heard me talk about Jiffy Pop (we used to have it on group camp-outs) and then I went for ice cream with Linda and had butterscotch instead of strawberry (again, what I used to do at 18-19). While she was standing in line this grandmother and her grandchild of 9-10 with long blond hair and wide eyes and full lips was there, and we looked at each other and I looked over the jeans and top and really quite gorgeous blonde hair. In the car, Linda said the girl in front had a soft voice but was very determined in what she wanted. I said I believe it because the girl was a boy. Yup, it was a Uke. I think they really didn't want to cut the hair, even if people mistook them for a girl. I looked carefullly and there were no little bit of hair ribbon or even patches on jeans that a mom would have snuck in to satisfy herself that her daughter would be identified and a girl (moms obsess about these things). Linda agreed that yes, the grandmother never said she. People just saw the hair and eyes and lips and made an assumption. Have to say one of the best hair of any of the children, girls or boys that were there. I don’t know what the future holds but he KNOWS what he wants and just keeps repeating himself until he gets it.

So that was my day out, I then went back and crashed big time. But at least I got some postcards done and some time out. There were also many packages. I think this is part of the new life I need to learn how to deal with; compromise (I know, the level of swearing!). I may not get all that I want but I got some postcards done, and I got to go out and have fun (and see a uke!). This is just a bit of early week fluff because it seems not just me but a lot of people are having a bad week. So I hope there was a smile somewhere. Don’t worry if you are a cat person, cat girls are ahead!