Badminton, illness, and change

Change happens. I know this, we all know this. And yet it bothers us all the same. When we are young it is sort of exciting, while as we age, every little spot or ache is a new limitation. These are the small changes. But across a life there will be dramatic changes, ones which change not just the outside, but the way who we are. Whether we want them to happen or not, they do.

A person is hit by a car, a girl walking home is raped, a man is attacked and beaten with a baseball bat, a person falls down a flight a stairs. Change. Maybe everything eventually looks the same, but it isn’t, is it?

Being disabled and being ill, or impaired is like that. One day, a doctor says something and then it echoes inside you, bouncing back and forth and you have to make a choice: chemo, radiation, amputation. And then, if you are lucky, after a period of horrid days which consist of a hell that cannot be described, the night before chemo, the vomiting just seeing them bring in the bag of it in special anti-toxin gloves. But one day it seems as if life goes on, and while you are not the same, you have a new normal, just a check up every three months, then a year. A week of worry, before the test, before the results and then you are given back a life you realize had been temporarily held by another.

The whole diagnosis process for disease: sometimes it is quick and sometimes it isn’t. Meanwhile, it is a mix of excitement, dread and the horrific. When they come back and tell you that they need to inject you with more radioactive material without sedation because your blood doesn’t seem to circulate correctly, that’s pretty horrific. When they tell you that you are going to give 21 vials of blood, then you need to pee in a jug before coming back in two hours to give a few more vials of blood, that is pretty horrific. But then there is the new people you meet and finding out that you aren’t the only one who had Raynauds, or the only one who lives with the love/hate/burn down their house relationship with specialists. And there are new sports to try, new things to do, and for someone like me, lots of challenges. And while I know that some people need to stay in bed for most of the day I don’t get it, don't understand how. It is just pain right? (well no!) I wheel myself out every day, wheeling up myself hill crying. I visited places, I traveled. And then things changed.

I lost a year, maybe 16 months in tests, and somewhere I fell off the grid and now I am sort of in a constant status of bouncing in and out of dissociation or insanity. Because I am dying, and not in a plucky, still have strength and go do races dying way anymore but in a being at home and wanting to vomit. Falling unconscious several times a day, bleeding out of my nose, my anus, checking my eyes for blood, for the starbust of the brain deprived of oxygen. Having to be checked 20 to 30 minutes of my day, every day, because I stop breathing several times a day.

Since last week was a total bust, THIS was going to be the week where I did not work, where I sat still, very still, and where I rested. This week was when I gave my body a chance at living into the future. I was to REST.
I went to badminton tonight after many, many attempts to go to badminton. My first time in I don’t know how many week, and neither does Linda. It wasn’t particularly pretty to start with, the birdie would fly towards me, the birdie would fly past me, my arm would shoot up and swing at empty air a quarter second later. Not quite getting those connections. But I improved. It wasn’t like it was before but it was enough. I could serve and I could hit the slower ones. And I could hold my arm ready for the rest. I won the first game and it seems that for a second or so, I smiled, and this one, while it isn’t real, it looks real.
My final game was with Linda who had come with me, in case my volunteer didn’t show (she didn’t). Linda was moving, she was hanging tough and going for the birdies. She came to me to see if I had an extra hairband. I didn’t. Then I suggested she use her “Girl’s gotta fly” blue wrist band – which not only helps my health fund but can be used to hold your hair back in a pinch!

The game was tied until my partner and I tried this thing called “strategy”; I try to get the birdie over the net and cover the mid range and he cover the back and we soon had Linda and her partner running. Not that they didn’t fight back, but in the end we were triumphant.

I took the victory with the good grace and the elegant nature for which I am known for in the sporting community. Well, I am known for a PARTICULAR attitude. Hey, I didn’t lose this one so you don’t have to see my pouting face.

Everyone will want to think that yes, I am back. I am sick but I am fighting back. Well maybe I am going out and I am going to badminton but life has changed since I last showed badminton pictures. I am writing this in a race against the oxygen in case I need to go to the hospital. I have been using a EMT mask to keep the high flow oxygen contained longer and yet my hands are turning purple, and I am on two painkillers and have a blood pressure which explains why I fell unconscious twice since coming home. Is it my damaged heart, my wonky vascodilation, my lungs not converting or all three? So much for ‘light exercise’, eh?

On Monday evening, after my nap, I was too fatigued to keep my body upright and was leaned against the wall. Still there 30 minutes later when Linda checked on me. Fatigued to the point that I felt, I knew that this was it, so with my arm supports I wrote some goodbye’s and for the rest of it I just sat there listening to my breathing, stop and start. I did not exactly have peace, but I felt, that everything that I could want and accomplish within the limits of this illness was done. The postcards sent, the packages sent, the blogs posted. It wasn’t everything I wanted but when I couldn’t move my head, and sat on the edge of consciousness, this was it then. I would be dead next time Linda checked.

I wasn’t, but I still don’t know why.

We all come into life different. The way we experience life, the personality, the sensitivity, even how we are physically is different, to the point of being disabled from an early age. But people adjust and get on with it. I had my own interaction with that, a friend with two heart transplants by age 16. But sitting by and living that life is different; I have learned.

Then there are those for whom they bring their own particularly innocence or flair to this society; and while I’m no Qwen, (where DOES he get those clothes...and matching arm warmers?) I like to think I’m fairly memorable. Maybe because I am often threatening high governments bullies, or talking to the police one day to give me a job wheeling down bad guys, the next day trying to talk them into giving me a police record (and to hand me a big rock I want to throw through the Ministry of Health building). Then when they come to check if I am murderer, I volunteer to be a human shield on their next armed assault since I can’t feel anything!

The thing is that I knew who I was and the one thing I knew was that I might slip, I might fall for a time but I don’t fall down; I don’t fall where I can’t get back up. That just isn’t who I am. I am Elizabeth McClung and be it a bully or an army, I stand opposed; whether joined or alone. But see, the little micro-organisms which are eating me as food, which are literally destroying my brain, eating it. Destroying my nerves, they don’t care that I am “Elizabeth McClung” – and so I fall. I fall and I don’t get up. Welcome to disability world, the theme park which has a slide for an entrance and no exit.

They don’t give you a book when you start noticing bits not quite working right. You sit there, and soon you know you are unwell. You are sent for tests and you are terrified. And then they come back negative, and you are relieved, and then they keep coming back negative, and after several hundred negative tests you are terrified again. If people look close they can see that you aren’t well, but hey, that could be anything. And strangely, at least for me, and for others, what other people think makes a difference. I spent a long time lying. Tonight when people asked where I had been, I told them I had a bleeding problem, but “internal mostly, I like to keep my problems to myself” (no one laughs at my jokes). They asked and I told them the name of my disease, they wanted to know what it did and I told them. “My God, my God!” one guy kept saying as I wheeled onto court, my turn having come up, I called backed and apologized if I had bummed him out.

I want to be the person who is able to break the rules but diseases don’t have rules, at least mine doesn’t. It simply does, and I live or I don’t. Change happens, and this time it is going to be ugly, it is already ugly. Am I the person who is drawing the curtains on the 'fight anything' aspect of my life? No. It is my disease. I often can’t breathe, then there are times I stop breathing, times where my heart stops beating, times, where I cough of phlem, and blood, times when I try to take a dump and blood comes out because I stopped digesting certain food, and they are ripping me up.

On Monday, my government manager of care acknowledged my impending death, and in doing so, withdrew care except the offer of “respites” where I would be kept in bed all day, in a hospital setting. I already have that. I have the same equipment and medicine they give me at the hospital here at “Station 2” – my desk, with recline chair, for passing out. I have my blood pressure charts, I have my medicine from vaco-dilators, to blood thinners, to seizure cycles medication, to heart rhythm medication. I have three levels of oxygen, of which I am now on the highest, the mask. And when it gets worst, I go to “Station 1” which is the hospital bed, which has the same things, but the advantage of raising my feet up to put more blood in my heart, and waterproof mattress so I can bleed, shit and pee over it.

The manager was going to be withdrawing certain services. I was to allowed to not be moved from bed if too weak to raise my head. There was some concern that workers might have vacuumed for me! But other than that, nothing was to be done, at least not until a doctor promised the government manager that I would die within six months. A few months ago it was 1 year, they required. That I have a note saying I would die in one year and I could get hospice and palliative care and pain medications and nurses. But I guess there are budget cuts and when I called the palliative care aspect of VIHA (the government) they told me that if I could not call upon them until I KNEW there was only a month left, that was best. The manager knew I was dying but until someone promised I would die SOON, and put it in writing, no help.

So we are going to Seattle to get, beyond a diagnosis and maybe something to prolong my life, also a note to promise that I AM terminal and that I will die. Because the medical evidence shows I should die, that maybe I should be dead already. That I do have a very rapid form of MSA. But it looks like it will cost us $1,000 for a visit, a consult, and the moving of me, very slowly and carefully from place to place down to Seattle and back to have a note saying, “Yes, she will die in six months.” I know several people who died without the note; and they got no help. I can get pain medication if I am terminal, no one will worry about addiction then (woo hoo Morphine here I come!). Maybe I can get that ‘last wish’ program to give me my last wish; the VIHA building in flames with the notice, “If you can get a fire marshal to verify that this fire will be put out in an hour or less; then fire fighting techniques will be applied.” Or should I just ask for the trip to Disneyland like everyone else?

Change has happened. I can’t reply to every email (1/10th would be nice, since I tried to reply to all emails from one morning and did 32 emails – then I couldn’t sit up anymore). I simply can’t blog every day. I would like to blog four times a week. I notice that my numbers are dropping but I can’t do anything about that. I would rather live than have another 400 people a day reading. Last week I rested and watched TV for 5 hours (yeah, that was the whole week, not a day). This week, I have just sat and rested 2 hours. Change in habits, in who I am takes time, and I AM trying. I am checking out this new future, and trying to see how and where I fit in it.
I can’t remember things, I can’t remember more than 48 hours ago, I mix up words, I have a hard time answering questions, I forget the morning if I have a stressful day, I have forgotten most of my last several years. Linda talks about trips and sometimes I remember and sometimes I don’t. I used to have as close to a photographic memory as a person could get. I knew hundreds of thousands of books and thousands of movies and now, maybe I might remember the title of my favorite book, and I might not. My world is very small, it is the computer, it is this desk (I can’t reach most of the room), a bed, and that’s about it. It is a row of DVD’s, a row of manga, a gargole, an anime girl in a wheelchair, and origami of squirrel along with a row of pills. That is the life I have choice over, that is the part of my life I control.

No, I haven’t given up, no, though I know the feeling of being on the edge, I am not ready to die. Never the less, between the disease and the society they have literally put me in a little room. That is where I sit, looking out at the stars and the tree, across from me. And the little things, like the food I have within reach, like the books or entertainment within reach become very important. This is what disease looks like. People send flowers. The flowers wilt. They get thrown away. I get tired, so tired. And it seems at times that people keep waiting for the old “you” to come back. When I want to scream that ‘me’ is right in front of them. They are the ones who can’t accept this final 'me' and so they, the last of those who held on through hope drift away, like family members, to ‘process’. And the pain, the hurting all over and the way it rains against the window makes it easy to get upset over nothing. And I cry at odd times, while most of the time I don’t cry at all. I talk about what your life is, plainly, and other people cry. And other people sit in horror. Someone else leaving. Because when it comes to life, I don’t know if I am entertaining anymore, but I am fighting to stay conscious to tell you what living at the edge of life is like. And quite honestly, if you want to be entertained, please go masturbate. This is life, much like babies, who are very cute but also shit with unbelievable frequency, and vomit, and drool, and vomit again, and get sick…..a lot!

If you have a certain type of disability or disease, you already know what I am talking about, and maybe you can add or adjust me. Or just put "you" intead of "I". I still live, I still have emotions, I still care, I still guard the few things that are within reach, I still look out the window and wonder what people are doing. I wonder what job I would have? Would I be in a restaurant with Linda now, and would we be talking equity instead of seizure padding, or how January and having to pay the annual insurance deductible again is hitting us? And would I always know my name and Linda’s?

Change happens.

I'm ill. I keep on as I have and I die. So what now?

Okay, let me try again. I am sick. See, I’ve never had a problem with accepting that I have limitations. I have had limitations all my life and my first thought in both Wheelchair Boxing and Badminton was “Okay, this is a BIT more to overcome, but think Beth, how are you going to wipe the floor with them?”

I wanted a PLAN, ideas on how to train MY way, do things MY way. And so I had some conditions, fine, I would research and then figure it out MY way. So I have never said I didn’t have conditions, like Raynaud’s. In Seattle at REI, after this woman went on about her life is “DIFFERENT” because she has this CONDITION called, and I finished the sentence, “Raynauds.” And I pulled off my gloves which got a “OH MY GOD!” Hey, what, they don’t make purple jellyfish looking hands where you come from?

She then told me, in all seriousness that I have to be ‘CAREFUL’ because I could get frostbite. I pointed to my finger which has the worst circulation and said, “You mean like this here.” And she just sort of stared at the finger and me. “It’s frostbite, that white bit, turning grey, that’s frostbite.”

She was doing the “But, but,” and I was like, I know and that is why I wear thick gloves INSIDE your store. I went out today for an errand and had frostbite for an hour, ow. She was also the one who after another “OMG!” when I asked if her feet or hands turned black, leaned over and asked, “Are you….wheelchair bound?” Um, no lady, this is my titanium leisure chair.

Doctors have no problem with the fact that I am very, very ill with many diseases. I think there is a file with about 8 to 12 diseases listed on there. They don’t think I am making things up. The problem is that I am a ‘complicated’ case which means they would have to take this thing called ‘responsibility’ and so, “Nope, not my inch!” No, they don’t deny I am terminal, not even the top neurologist would commit to saying I would be alive in a couple years. I have an unknown autoimmune disease doing things which are sort of strange and ideopathic, but which produces autonomic failure. There are only four known direct causes of autonomic failure (there are indirect causes like, when your entire lungs fill with cancer, it causes autonomic failure of your heart due to overloading the system). Of the four, I don’t have one called POTS, so that eliminated leaves the fast terminal one, the SUPER fast terminal disease or the delayed terminal disease. I also have other autoimmune disease and other idiopathic (doctor speak for “What the FUCK? I have no idea!”) conditions/disease presentations which could cause my death.

So I am dying. But to me, being told that was like playing able bodied people tennis in a wheelchair and winning; if I pull off living (winning!) then I am kick ASS! So while I do have a problem being terminal, at least I can be busy: plotting my decline, coming up with plans, trying different ideas. Only now, I am tested, there are blood tests ordered but no plan for treatment, just making sure different doctors don’t get sued. I can’t get a specialist or a GP to prescribe me seizure medication so they give it to me at a walk in clinic, pain meds over the phone. Between my life and “cover thy ass” we know what comes first. Or as one medical person said, “Exactly how HIGH does the stack of dead bodies outside of Victoria Island Health Authority (VIHA) have to get before they DO something?” Currently, I can’t hire my own care workers because the grant, CISL, hasn’t been raised for inflation or anything else in over a decade. 19 year olds can earn the same per hour sitting in the six week course at Beacon which will let them catheterize me, decide the use of life and death medication and use my feeding tube; once they START, I can only pay 55% of what they earn at Beacon, whether they are good or bad. VIHA, after a promise to raise CISL and nine months of negotiation now says they haven’t had enough ‘complaints’ to make them believe the pay was too low. Let’s see, trained medical personnel on CISL get $11, people serving donuts in this town get $14.55, heath AND dental. I guess that disabled woman who smuggled an illegal alien to SLEEP in her closet to try and get home care under the CISL grand budget wasn’t enough PROOF (real case!).

Except now I am ill, so ill, I can't be busy anymore with planning on beating dying. Linda over on her blog, A Girl's Gotta Fly, has just posted about the oxygen I am on, thanks to you. And other things (I can't read her blog till she gives me permission in case it is medical and stuff, but YOU can!) about our life. Please read and comment (after reading ME of course!), as it is hard for her to write these things, hard for her to have to open up, and she needs encouragement too.

So here we are, take two: I am sick. I may say I feel bad today, or that I have this disease or that I am dying but I don’t admit that I am sick. I will always be sick. I have worked the last three hours in extreme pain with triple my pain and heart medication. That’s because I went out today after my ‘fun with electricity’ yesterday. I have crashed to earth. "Mission Control: This is Elizabeth McClung and I am going down." There is no plan, I almost died just over a week ago, I couldn’t sit up unassisted yesterday and I don’t know if I am going to the hospital tonight. I am sick. And tomorrow I will be sick, and the next day, and the next. There is no beating this. I am living in overtime. And I don’t have a game plan.

Now on to part II: I need help. I am fragile: I had two breakdowns yesterday. I can’t just throw myself into something because….I am sick. It is snowing or raining outside, I get frostbite in a few minutes and I am sick. Currently I am back to believing that I am non-human.

I want to be a great friend, I want to visit every blog, I want to know about every life, and I want to empathize with you, listen to you, solve your problems, but I CAN’T. And I don’t know how to do that and not be so BAD, that it makes me want to claw my face. I need help, and I need caring, and I need to get better IN the head, so that I can regulate my body and live longer. Because I am going to Hawaii in April/May, I am going to start trying to sell stuff to do that and anyone who wants to come is invited (see, that is my ‘As long as I have a plan, and never sit still, the pain is just ‘training pain’ coming back to try and take over’).

The problem about asking for help, is that it is a lot like having a high school crush, you like this girl, you moon about forever, thinking you are sort of subtle while really everyone knows (or all the girls know, the guys are too busy hitting each over the head to figure out why girl X just burst into tears). The problem is that there is that moment where you have to say it, “I like you!” And then see what happens. And my problem is that I am saying, “I need help” at a time when people are depressed because they are post-Xmas blues, they are depressed because of recession or reality TV. I don’t know why. And I am not asking to be SAVED, to have someone rescue me. I am saying, I am out here in the wilderness, and I don’t know what to do. Normally, I would take some time off and over the next nine months or year come back to full strength. I don’t have that. So instead of keeping between me and my therapist, because I don't have the TIME, I AM dying, so I posted about it, spewed it all over the net and now I am saying, “Yeah, I am kind of screwed up, can you help?” Please, PLEASE, don’t do what certain parental figures often do and tell me what I should do, or should have done, or if I had done I wouldn’t be in this mess. AHHHH!

So, lets say that she takes the gift of chocolate, then what? I don’t know that part either (If no one does then I guess I pretty screwed!). Cheryl is pretty busy taking care of Linda and dealing with the medicos. And when I, the avenging angel of death, am having hissy fits and meltdowns every six hours, well, that’s not pretty, and that’s not something I want to last (and with my fragile condition, it won't, I'll be in the hospital by weeks' end). Now see, in my OLD mode of operating, I would take my life, put it on the line, call out death and have a duel, because that is the way I am. Someone said to me, about how impressed they were at what I did but to risk my LIFE? I was sort of puzzled, because isn’t that the point? Yes, if I go to Hawaii, I risk my life. Going to Seattle risked my life. We went to Tim Horton’s and had a little incident and Linda had to use her ‘command’ voice to stop people from getting an ambulance. If I want to LIVE, I need to risk my life.

So what does this new life look like? I think I am supposed to rest and then find out if that makes me feel better. I am out here, no net, no back up, but also no clue. See the problem is that here are a few things I don’t have: desire (I desire very little though I found a new manga and put it on my wish list – it won a REALLY big award), lust, anticipation, looking ahead, joy, innocence, peace, contentment, rest, relaxation. So how do I get those? I think Linda has this idea that I will return to my childhood when I had a dog and spend time in the flowers all full of joy and innocence. And while I would like that, when you have to sleep twice a day and have the nightmares I do, it is hard to wake up and have that innocence. Or with the chest pain, to have this idea of ‘rest’ that doesn’t include the fear of being in hospital with a LOT of tubes coming out of me. I proposed MY idea of what I should do, which is to train minions like crows (they follow me too!) to like go and attack people. While I look on from my tower. Linda says this is disturbed. I tell her that I AM disturbed so that makes it okay. She says no.

I was to have the exuberance I used to have, but I can’t because everything I do hurts, everything I do damages me. I want to be here, on a dog sled, fulfilling one of my life dreams, doing the Alaska 1000 mile dogsled race (won by a woman for YEARS! YAH!). That dream isn’t going to happen now but I want that look on my face again, the whole, “Oh yeah, I’m going to get them!” I don’t want to live off memories which are quickly disappearing (I remember none of the 10K’s or most activities of this year, even if I still have unhealed wounds from them), but some new thing to be excited about. But I can’t right now, because I am broken. It is just that which I am trying to fix. So I look like this instead, looking ahead, fearful, uncertain, sad, wondering if all good things are behind me.

I want to be the person who is out finding joy in falling stars, who has true innocence renewed. But I need help. I do need a plan, a program. Right now all I have is that I am going to try out doing some small shopping online, trying to find something on Amazon.com that isn’t for the Postcard Project, that isn’t a gift for this person or that person, but something just for ME. Can I even buy something or use a gift card just for me? I don’t know, but if I can find that feeling, that desire, that joy, even anticipation, then maybe I can come back, back to normal. Which isn’t perfect, it is about having things go wrong, I mean, I do have a lot of diseases, and there will be little home problems (I wish I had this one!), but to be stable mentally. Sure, I might be a bit off in the head or prone to OCD, or overly emotional due to the autoimmune attacking parts of my brain, and due to seizure activity, but I will think that I am part of the human race.

I went out today because I made a promise and I keep my promises (if I can only remember), to get a certain comic for a reader here, Yukataonastick. So I was in a comic book store and I talked. Linda said I am the greatest liar when I pretend, for 20 minutes that I am perfectly fine, then pay for it, for the next six hours or more. Well, I was doing fine and talking to a girl who I had an inkling might be on our ‘team’ as it were, when she talked about playing rugby in high school and how great that was as when you all fell down she got to touch lots of breasts and no one suspected a thing. Dudes, take note, that kind of statement is a sign you are with or are chatting up a lesbian or bisexual, NOT that you have similar interests (though you do!). Well, after some more talk and getting the comics, she says suddenly to me, “Your tit is showing!” Now, I was wearing a new top from Torrid or Hot Topic and I had put the jacket half down to give my breasts some ample chance to show off but wha? I looked down, no, the top is still covering my bra which is covering my breasts. This girl leans over, as I wonder if this is my discovery of a third nipple and will it lactate, and adjusts…..my necklace. Apparently the part where I attach it had come around to the front, so she adjusted the necklace for me. I asked her if that was a technical jeweler term and she said it was, which means it WASN’T the most blatant lesbian come-on line of all time. But then again, she did lean over and adjust the necklace. I have to admit, worrying where my clasp is on my necklace when I have chunks of hair missing on my head and look like I wheeled in from a nuclear disaster tends to be low on my list.

So, let’s review okay? This is who I see myself as. Yeah, things get to the worst, and I will take you on. Yes, I am kick ass. I don't care about the odds, I am the one who is going to meet you and take you on because all you can do is give me pain and that heals, in fact, I’ve been hurt so often I heal abnormally quick. Or I did….. But the reality is that I am not a person who can take on life that way, or problems, and so I am this person, not sure which way to go, a little scared, in a place which seems a lot more confusing. I would like to find a way to figure out how to restart. Which pain is making difficult, so if you have like some MORPHINE and don’t mind breaking rules that might get you in jail, please send it to me (if it crosses state lines it is a FEDERAL CRIME – big time!). I want to look for a while like this, resting, calm, caring but also willing to be cared for(yes, I get the fox ears too, and the cute pet, why not!).

How does someone who is 6’4” and usually weighs 200 lbs or more (that’s muscle buddy!) and picks up 100 lbs easily go to being a person who is well, weak. I’m not girly, but I am weak, I am model thin, I am model light, I CAN be carried around, including my chair by a guy or two. I can be carried back into my chair once I fall out by one person. I am not used to that. That’s what I DO, not what happens to me. How do I ask for help and emotional support, and help in keeping myself believing I am human when I am the one who is used to helping others, BECAUSE I have ALWAYS known I am not human, that I live only to save those from ever becoming like me. I want to be there, because how can I ever want anyone to be me? And I have to let that go a little and find peace. How? Who will help me?

And then, as I find a new way, a new path, to surviving each day as someone who IS ill, who is never going to get better for the most part, who is always going to get a little bit worse. But that doesn’t mean I can’t find my own strength, or that I can learn to lean on the strength of others. I just need to let go of doing it all myself. I hope, I can find the peace, the anticipation, the excitement, the joy inside me, and use NOT my strength, to make myself ill proving I CAN do X or Y, but to accept the strength of those waiting to join me (like the picture). So is that it, is EFM dead? No. EFM has learned there is more than one strategy to fencing, you don’t ALWAYS have to charge! Sometimes, you wait until they come to you, let them do the heavy lifting before you act. Am I going to risk my life to LIVE? Hell yes! Am I going to risk my life just because it is possible? Yeah, I am probably going to do that too. And sometimes, I might go and do things that aren’t particularly smart. Just this time, I have to realize, if I don’t learn the R word (relax, rest, etc), then I will push myself right into a crematorium. Yes, do the thing and then rest as long as is needed to get up, with little advances and help from others, and start again. Because life IS the only game in town and no way I am getting sent off permanently because I am too thick to change. I just need some help.

Pain and dying: lay down your life.

Pain. Last night my pain was so severe that I used up the 24 hours of pain medication including my ‘breakthrough’ pain medication in the first 4 hours. The weight of my body, my limbs were crushing me in pain. I used my sedatives, a day’s supply, to try and get sleep. When I did it was of a guy hunting me down and hitting me with a baseball bat, or being thrown off the side of a building. In one unusual dream I was on board the Shuttle Challenger as it blew up. I used every opiate and painkiller I had and it didn’t stop the pain. I used all the nerve blockers and it didn’t stop the pain.

Nothing stopped the pain.

I groaned in my sleep, I groaned myself awake; and begged for more pain killers only there was nothing for me to take, not for another hour if I did not want to die of liver failure. How long does it take to die of liver failure? Three days? But I get my pain relief now? Great!

No, I was told.

But now, awake, as much as I feel like a cat who has been petted the wrong way for MANY hours, this is where I want to be. Alive. Alive and with my daily battle, how to make the greatest choice a human can have: to make a positive difference. I can, in my way, fight against apathy and the voice that says inside, “it is too big”, “you don’t matter”, “you can’t make a difference.” Last night, because someone fought for ME, I had extra padding on my bed: I was cradled as an egg. My pain was bad, but I was able to get some sleep. Hundreds of miles away, THEY had eased my pain, as they will ease it tonight. They fought for me when I lay helpless. They were there for me.

What or who do you fight for? If you are not struggling, whether it is to make yourself, your family, your friends, or your community, into something better, then perhaps you are already dead. Being a parent is a struggle, being a good partner is a struggle. Following your dreams is a struggle. Loving someone and being a good friend also means you will have bad times, you will do something stupid, you will cry. It HURTS. But it is worth fighting for. I know. I know.

I have almost died/died or been revived several times, but I’ve never been the one to fight, to be awake to pay ALL the cost. This time, coming back from Seattle and at Cheryls’ house I was the one fighthing, for hour upon hour. If I wanted life, I paid.

I was desperate. Not desperate people get when they are late for a ferry. Desperate like needing a miracle, and needing to make it happen now.

Because if I did not figure out how to put two systems back in line before I slept, it seemed, and after a few hours it became VERY clear, as the bright red blood was pouring over me, over my hands, that I would die. Not just pass out and let Cheryl and Linda deal with it. Dead. I was desperate to do things previously unthinkable, overcome phobias: if I needed to shove a needle into my heart, I would have done it. I was shaking, in shock and I couldn’t tell Cheryl or Linda how bad it was. I hadn’t told them in the 145 minute drive that my left leg was useless, my right leg becoming so. They were worse than useless, as muscle groups were locked, due to pressure on my spinal for hours. It was agony and I think the muscles were so tight in one calf section they ripped apart from the tension: one strand shredding, then another. But that agony was secondary to dying. “Just get me inside” I begged.

Agony was living. I had to figure out how to stay alive.

Somewhere after five or six hours of trying and agony and nothing working we took a break, and tried a short nap, though my breathing was cutting in and out. It was a gamble of a chance death over the growing probability I would soon fall over and bleed out. It was a prayer.

When I woke up, I was feverish, hallucinating and I still had to fix my body up. I had some horrific problems. I tried again, with desperation to do what needed doing, and this time it worked (EDS people, I now have some idea of what you might go through). I did not know if I had been internally bleeding for the last hour. If I had I was already statistically already dead. Because from my reading, at my level of anemia, any anesthetic and I wasn’t coming back out. So I was carried to the bathroom and waited to see if a liter or more of fresh blood poured out of me. If it did, I would have to go to the hospital because they were my only chance of living, to find what had ripped open inside and burn it closed, all without anesthetic. How much blood had I lost already? As once they put me out, would I ever wake up again. My research said no. It takes blood 21 days to replenish...if a delay in producing blood isn’t what is causing the anemia.

But there was no fountain of blood. It had healed somehow, some dark binding blood and that’s it. And only then did I let Cheryl check my abdomen for rigidity (sign of internal bleeding). My skin so thin she could feel the coils of my intestines. I was on oxygen the whole time but by this time my hands and fingers were purple/blue and I didn’t know if I was de-compensating (dying) or just if my body had pulled all reserves back to the core, abandoning my arms. So we slept. That was my second prayer.

I woke up. I couldn’t control my limbs but I woke up. I was alive and it was daylight. So I decided we were catching the ferry in 95 minutes. Nothing like exerting a little insane control to try and deny that sometimes we have no control at all. I had treated Cheryl badly, less as a colleague than an enemy, someone who might figure out how bad it was and call an ambulance and I would be dead and Linda would have a bill. Of course when you are delirious and hallucinating, it is unclear how clever at hiding things you really are. If I made the boat and lived for 60 minutes we would cross into Canadian waters, and the rescue copter and hospital would be paid for.

On the boat ride back, I entertained a 15 month old who played peek-a-boo. I showed her the pictures from the postcards I had with me. All still lying down. Still hooked up to oxygen. And I finally understood, what it was to lay down your life. To fight and spend your life with purpose.

I am alive. I should, with my memory problems; my health problems and my financial situation live a life in total fear. The only reason I don’t is because other people carry my burdens for me and fight for me. I was able to eat lunch because someone bought me utensils I can hold. I am alive tonight because Cheryl has watched over me, she knows when I am likely to stop breathing or when I have a fever (as I did off and on until this morning). I can sleep because Linda watches over me, literally carries me when I need it. Others watch over me, from helping me with the postcard project, to writing me weekly, to calling me to let me know that someone out there gives a damn. They haven’t given up on me. And if they won’t give up on me, I won’t either, however much my inner voices tell me I am not worth fighting for at all. For I am a thing, an animal, a sub-human. I don’t always look like a human, I scream and grunt and breathe in short choking breaths at times. I turn odd colors, and this planet doesn’t agree with me that much. I fight against my voices to give proper value to the gifts and sacrifices others make for me, on my behalf.

Spending our life is something we do everyday, sometimes in frustration (traffic!), and sometimes (more rarely) in deliberate action. But it is spent either way.

When someone spends part of their life for me: whether that is the money they have earned, the time they spend writing a card, or making or shopping something for me, deliberate acts people have done: this is a gift of greatness. Thank you.

I will try to list, another time, the long list of people who have done what I believe is the spark of the divine in humanity; to lay down their life for another.

No, not to die, to lay down LIFE, their life, the time they have to spend, they spent on me. They laid it down for another. And the other was I. I know of no way to give adequate thanks for that. But I can recognize it, honor it and emulate it.

I have run into people, recently, who are sick, not sick in the way I am, for all I have is pain and a body going to rot, but I LIVE. They don’t. They let others spend their life, they have decided not to fight for anything, including themselves. And they think of this as good, as normal. It makes me angry. No, it is not normal to ‘accept your bit’ and let it lie at that. Or to think politics and morals are the same. No law can contain the human body; lawmakers can only show their ignorance by deciding by law that one human is property of another, or one human is 3/5ths of a human being. Or that humans joined of different sexual orientations are not equal (Doesn’t God get a say….nope, the state constitution overrides God it seems). And that those who are disabled or elderly are to be weighed in economic terms.

When I first became severely disabled I asked, “What purpose do I serve in society that justifies the costs of my existence?” See how I had accepted the inequality of humans (of course, the same argument was made on the use of child labor 150 years ago). I am a human being. That society does not know how to incorporate me and others like me into the spectrum of what is human experience is not my fault. I hope Society can grow up, can learn, but the disabled, the elderly, the dying are still equally human.

In our culture, we DO treat the dying as sub-human. There is a circle of life (not a straight line into infinity, sorry to disappoint) and while we treasure and have protections for those who choose pregnancy and children, we have nothing really for those who are dying. Yet, it is the same circle. It is just there is no place for us. No societal aspect in which we are accommodated or even expectations we would be out in public at all! You know the one word I was too ashamed, too socially pressured not to EVER say for all the time I was away from home, the word I can only say on-line and in my own home. No, not ‘lesbian’, I can say that fine, I can shout it along with ‘Boobies!’. It was ‘terminal.’ Over and over people projected onto me that I was just like them, just sitting down and I let them. They acted as if I was stupid (“So you’ve….taken….a course at university?”), or if I was heroic (“That’s the way to show them”), or a stereotype, (“Are you wheelchair BOUND?”) but I never said the truth. I’m dying. I’m terminal. I have a degenerative condition. Because I knew they would have no way to deal with that. And socially neither did I. And yet, it is a shame because we are all dying. Only it is a few of us who know that, and the rest, well, they just stare in surprise.

I wasn’t doing anyone any favors by staying in the closet about death and dying. In fact, my denial, my need to feed their vision of me probably helped facilitate my OWN delusions and brought me to the closest I have been to dying while conscious.

On the ferry I thought of the Greek and other city states, who had a designated group who were those who helped decide the rights of the city against other cities. In one specific city, the women learned the sword, the men the spear and the armor to crush. These were people for whom all knew that someone would die every time they marched out. They fell in love, became friends and lovers, and then that group marched out and killed another’s lover or did not come back themselves. I am a pacifist, and an idealist but I can understand the appeal and ease in which one simply is, to represent your friends and family as you go to fight. It is harder to live, and to lay down your life, every day. People are broken. Children are broken and scarred. This is not fixed by marching out to kill someone: it is fixed by laying down a part of your life over and over and over again.

The things worth ‘fighting for’ are we, our lives and how they are spent. This is what I see in people. What I see reflected in those I know. They fight to remember that they are spending their life deliberately, laying down their life and that it matters. They fight while working long hours in a hospital; fight to save animals who are abandoned and in pain; fight to save humans who are abandoned; fight against yourself and your disease to BE there for those who fight for you. There are those who fight to have clean blood so that when, as I have been bleeding almost constantly since late Monday, as I may need to go to the hospital soon for a transfusion, that blood will be there. It matters. You have to remember that. Yes, it is a job, it is politics and jerks; it is dealing with a disease that never quits, that punishes you for nothing at all. We keep on because someone like me waits. I wait, for that blood, that letter, or for a smile of greeting from you. And when you have HAD it with the kids, when you have an argument with a friend, when you are hurt and instead of speaking what first comes to mind you think and remember the love you have for them. That is fighting within you for something that matters.

When I was able bodied I was a fool, believing that ‘once I get my job teaching’ or ‘once I get tenure’ or ‘once I get a deposit on an apartment for Linda and I, THEN I will make a difference.’ My disease has many gifts, the pain I love not so much. But I love the freedom, and the insight. For now, with all the power in my being I fight. Because there are so many things worth fighting for: things for which I am going to lay down my life.

Every postcard is my arrow, my act of resistance. Every package, every note, every email is my attempt to drive back this idea that somehow people don’t matter, or some people don’t matter or that people don’t matter equally. Like I said, it is a sickness. And it is my intention, entirely, for my next trick, to live a good many years, which I believe is possible, if only I were in charge of all the hospitals and could get things done (nice dream eh?). But if that doesn’t work, I will work my havoc here and there. I am taking GOOD care of this body, as I have another 1000 postcards to write. I will tell people over and over again that they matter, until they realize one day that they have been telling people the same thing because it IS true.

I do this not because I am in any way sanctified. But because I am one of those people who are broken, and maybe, because of the people who fight for me, that which is broken will heal a little.

Then one day, I will ascend to human. And I will matter.