Saturday, February 27, 2010

Wheelchair Boxing Round 3: is this tenacious?

Free from the ‘51’ (the 51 days of fever), and the fever and chills from Tuesday, I went to Boxing on Friday. I am places. I have ribs showing, am sitting on pure pelvic bones but have a pot and little tire and not quite sure how that happens (lying there for 51 days might have something to do with it).

It annoys me.

Things that annoy me get removed. Turn on the vacuum cleaners, and hand me the scissors: time for my home liposuction!

I have pushing myself hard since the fever, trying to get reserves, but working every hour. I have had some problems with high blood pressure and seizures, and the fever make things explode literally. Due to my camera being a ‘smart camera’ which tries to match skin tones, this bruise is about half as dark and just plain disturbing as the picture shows. There is another rupture showing up in the pinky, it starts in the crease and goes up half of the pinky. As you can see with this picture, I bleed every day, expanding territory of this particular bruise, and that is only the part you can see on the skin. When I overheat and blood comes to the surface, it gets gigantic. It seems like my body is playing a game of Risk, and slowly winning territory. This is called subcutaneous bleeding, I think. I did not hit anything, this bruise along with about 30 more visible ones, are just ruptures of my arteries from high, high blood pressure.

This is what dying looks like. I wasn’t going to take pictures of the things we now see, except that people who read the blog are so used to me ‘dying’ that the idea the ride is about over, and going to come to a complete stop, is alien. No, I am not an alien, or a sub-human that just keeps going regardless. I could die today, I already came close. My arms twitch constantly so it is hard to type. There is no ‘after Xmas’, or ‘Next year’ or ‘This Fall’ in the thoughts of Linda and I. Yeah, it might be wonderful, you think, to look worse than an infected junkie, and have the pain of having nails driven into your bones, and just go on like this. But human bodies don’t. They tend to generate what are known as ‘loopbacks’ which is the body saying “Help” but, for someone who can’t feel, only generates TIA inducing spontaneous high blood pressure.

I would love a long term gig but right now, no treatment, no doctor, and a hospital would likely kill me in short order (when they make ASSUMPTIONS, and my body works the opposite, that is a BAD thing), that isn’t happening. Sure, I have to live as if I keep on living, because I am not sitting here waiting to fall over. But I am fighting to get back each freedom in the same way I went to the fencing tournament AFTER I knew it might kill me: I want one more spin on the merry-go-round. I want one more 10K, one more Sakura-con (see Linda on how that is going), and with about 600 more postcards I get 5,000. That’s a good number, right? Yeah, the shop is shutting down, whether I want it to or not.

I am not a Goth, I AM GOTH. And no one is riding shotgun with me.

So, after seeing Sherlock Holmes and a few hours of sleep I went up to boxing. I went up because a) I need to lose that pot before Sakura-con (vanity, vanity!) b) I want to be as elite an athlete as I can be for my condition because I believe that will extend my life – even if that is 1/10 of what my condition was in August or Oct. last year. And c) I really want to go out of this life hitting and fighting DAMMIT! I want to be a wheelchair boxer again.

I managed to show up on ‘do sit ups, push ups and heavy bag until you vomit’ night. All right! We did 12 series of combo’s on the heavy bag before doing tight hitting as fast as you could and then strong blows are hard as you could. I couldn’t type afterward – I just needed to lie down and have body twitching.

When I started I felt FAT, but when I finished I felt better, not just because with eating only one meal a day, but I am on bone in my pelvis. But my arms still seem to work, and I was able to sweat, enough to maybe stop my hair from falling out. Enough to stop the skin peeling off of my face.

Linda said, of those there, I was putting the most into it, but then, I do. Ian held my heavy bag and surveyed the room while I worked on uppercuts, shovel hooks, overhead hooks, and power rights. I knew I would be in pain, since last time I was unable to sleep due to the pain from boxing. This time I managed to get four hours sleep (only to find out that due to working SLOWLY every day, the construction will now continue into Saturday – six days a week, starting TODAY until Xmas). I know that I will never be able to look out my window again. That is what is. I have wall scrolls to watch and DVD’s I play to cover up the construction noise.

The trick of making combination is to totally relax between the combinations, like letting your mind go into strategic mode, so you breath, relax. Then you take the power from the relaxed muscles and accelerate them to culminate into a point in time and space – WHAM, wham, WHAM, and relax with your guard up. It takes a half second to make three hits.

Ian is the right type of temperament for me. I told him, “You are doing 40lb jabs” while I was holding the heavy bag (throwing around boxes of books, the 80 pounds of books versus the 40 becomes memorized). He told me he could barely use his shoulders: jab, jab, jab, jab, jab, jab, jab, cross, power hook. “I did two killer workouts yesterday.” He said, “Why do I hit so hard when I am so tired?” jab, jab, cross, jab, back step, step into hook, triple jab and a rocking cross. He laughs, “Because I like it.”

Afterward I apologized for not coming due to the fever. For Ian, who knows me, it is not a big deal, two of his students, new ones overheard me and one said, “Oh my God! Did you go to the hospital?” Ian and I looked at each other like, “Newbies!” He knows this rocket is pointed toward the sun.

He had parasites from a trip overseas, as is working them out. I told him I will be back regularly I hope as I get ready for Sakura-con and the 10K. “You are the most tenacious human being I have ever met.” He suddenly said to me. I wasn’t sure what to say.

Ian has had about 75 bouts with I think 5 defeats. He came out of retirement in his mid-30’s to do a boxing tournament that required FOUR back to back full on bouts, which means you had to win all four in a row. He was at the final bout when a ref called a holding, and a stop, he lowered his glove, while the other boxer put all his weight behind a hit to his cheek, crushing his cheekbone and pressing his eyeball out. Ian went on to knock out that man and win the tournament. But, he said, it taught him that he was too trusting, and it was time to retire. And he calls ME the most tenacious human being he has ever met? Of all the boxers? Of looking himself in the mirror?

I want to live up to that.
Someone recently sent me an email saying they wrote so that I won’t be lonely. I write because I am lonely.

I want so much for this blog to go back to jaunty and saucy and research and observation of BEFORE, and I hope it will. Because all of that is a part of who I am. But so are the things which no one talks about, that shadow which falls over everything I look at, over everything good in my life. I live because I need to live each day as if I were to keep on living. But I also need to have a part of each day in preparation for dying. Except there isn’t any way to teach me how to do that. Linda has 3 support meetings in the next 10 days. I will meet a therapist for the first time, a meet and greet – they are accessible, so they are only available every three weeks. And what do the living, who observe and writing ‘stages’ know of this. What do they know of having what limited support group die, one after the other.

One told me, “Just because they say you are going to die, doesn’t mean you will.” Dead.

“Morbid wit, I like it.” Dead.

Another taught me how to keep blogging. He was the most obvious, slurred, even on the blog, so we brushed by, as I was full of symptoms and possible conditions, and that he could be me soon, it terrified, and he died soon after.

So boxing and being in pain and watching blood pool from parts of me is easy. Wham, wham WHAM! THAT is nothing. Letting someone in, knowing I won’t be there for them, and seeing them watch me with terrified eyes, how do I do that?


deadrose said...

I consider it a great pleasure to get to know you, regardless of how short the friendship may be. It isn't the length of a friendship that matters to me, it's the depth (mind out of the gutter please, it's getting crowded down here).

wendryn said...

I didn't realize the construction was going to go on so long. That really sucks.

Screw Bronze is still true. You are still EFM. You're still fighting. It really is who you are, and, despite the 51 days of fever, you still fight.

You are the most tenacious human being I have ever "met". Always will be. I wish it didn't have to be so hard, though.

I'm still here and not terrified. *hugs* Sad, but not terrified.

Dawn Allenbach said...

But you HAVE let people in. Lots of people. We're not professionals, but we are here for you. Talking about your life on your blog, I believe, is a way to deal with everything -- the anger, the hurt, the sense of loss, your impending death. I know people who were with chronically ill people who said upon their friend's/partner's demise, "I thought I was prepared for this." I don't think, Beth, that you or anyone can fully prepare for death ahead of time. I think the people who say "I'm ready to go" are simply tired of fighting. I think the people who say "I'm ready" seconds before their demise realize they've passed the point of no return, that they're going whether they're ready or not.

You've accepted that you will die, but you have decided to go out with a bang. I hope I can do that as well. I don't want to be wimpering and defeated in a hospital, but instead, I want to be like my hero Beth, saying, "You want my life? Well, you're going to have to fight me for it!"

Lene Andersen said...

I don't know about letting people in, but you're right - it's the most terrifying thing. And also a necessity. Dunno how to balance the two.

Your blog is a reflection of you and I've always loved the honesty here. Don't write what you think people want to hear, write your reality. We are here for the whole journey, not just the pretty parts.

I love the boxing pics and am very glad you got to sweat. The idea of 3 hits in half a second is inconceivable to me. That'a human being can be that fast. Wow.

SharonMV said...

Well, Elizabeth, you do let people in. You don't give in to that terror, you just live with it.And part of you will always be with me. You have your own room in my head & in my heart. Our friendship will continue.


Baba Yaga said...

Ah, Beth.

We don't talk about the shadow. We don't really understand life or death, and ... who wants to undercut the life you bring to everything you do? I know there's a gigantic fallacy in there, but it catches me every time.

Also, I'm aware, when we talk, that what I write now, you may lead in a different state of understanding. Aware when I pick a card for you, that it may be received by a regressed Beth. What I love for the adult you, I occasionally think I don't love for a child-like you.

I never expect you to be alive tomorrow. I'm always pleased when you are. I don't expect you to be dead tomorrow, either: if I did, I'd never post another card, for as long as it takes to cross the Atlantic. I always know, when I'm putting something in the box, that it might not reach you.

I treat death and life as possibilities, and you as what matters until one possibility resolves into the other. If there's a better approach, I hope to learn it.

If your tenacity keeps you on for another year (it's as long as that since I've known you), I'll still be here. .... Although what your body would be doing to you by then, I don't know! You teach me weekly of new things which are compatible with not being dead yet. It cannot be comfortable to be the teacher.

I agree that you are the most tenacious person I've known. & I have known a few!

Your last sentence makes me grieve for you. I realise that this is not *perfectly* what you mean, because I am not a member of your club, but for what it is worth: you are here for us now. We know that the price of that is that one day you won't, and are prepared to pay it. It's a high price, but it's a worthwhile one.

And by the by? Great that you went boxing. Insane, but good.

Elizabeth McClung said...

I will not die today (I could, but I won't, and if I do, well, that would highly annoy me), I will not die tomorrow. But I do have a terminal disease which has as the specialist said emphatically, 'NO Treatment!' Yes doctor. I am at the date when the neurologists refused to answer, "Will I be alive in three years?"

Things are changing for me, and if I can keep ahead of those, and have reserves, I hope I can live a LONG time, like many animals of months. How I am now is BETTER than having a fever, it means I have more reserves. Okay, I also have some odd spikes of BP, which are causing bleeding. I need to deal with that before things go bad.

I try, in the good minutes, or hour, to think that this is a mistake, or that, hey, I could hang on like this for some time, for years. And I want to. Even though people out there do the job, work, home, exercise, TV, and sleep cycle which is so different than me, in my slow motion fishbowl. I have plans for the summer. Realistic? Some would say 'NO!', some would say, "possible" - What IS possible until I try? But what I don't talk about are the changes that happen rapidly, the bleeding, and how that brings it all back to me that no, I am not a stable body. That my disease has control of this body, and how ever much I resist, and try to outwit, it spreads. And when it spreads enough, I die.

But not today. Today I do postcards.

Elizabeth McClung said...

Deadrose: I hope I am here for a long while so that we can get to know each other, that I can have you a part of the remembering. I am glad to meet you as well.

Wendryn: You think I am the most tenacious? That is high praise indeed, because you are pretty tenacious yourself!

Yeah, this has to be the slowest construction in history, how they are making a profit I don't know. But no, the noise never stops being painful and I never get used to it.

Yeah, didn't wish it was so hard, but I am lucky, in that I have so many friends. And friends who have died, they all viewed it different, though most just were exhausted by the end, and watched a little TV when they could. This is something I have been thinking of, trying to know what to say to the person with the big C - how do I tell them how to survive the days when vomiting is monotony. How do I tell them to survive and thrive?

You are a good friend, I am glad you are not terrified.

Dawn: You are one of those in my support group who is still alive. I take strength from that and you. You are strong, and fierce, in not being shuffled off to the side, or just waiting. I learn that from you.

I agree about the 'being ready' - I am dubious of lists which are written by those without the shadow over them about how I am supposed to feel. Even this makes people think I am about to die this week, but no, it is just I could die this week, but I live on - we live on, but the knowledge of our probable lifespan is always there, always a whisper. No, not ready, not signing a DNR, except for limited specific things.

Hospitals only know how to treat the body, they don't deal with YOU, Dawn or me Elizabeth - the body is all they care about, and the dignity or the aspects of us, that we fought for, and keep fighting for, and living and enjoying - that they will take away without thought. Besides, we should say, "No, no one has survive longer than X years.....yet." ha.

You articulate so well - thank you.

Elizabeth McClung said...

Lene: I always turn to face the fire, and I suppose as long as I can take the pain and the change, I can let people in as well - just sometimes, too much fear, or looks of 'get me out of here!' is overwhelming. "I am a human being!" I mutter sometimes.

Okay, the funny parts, but also the dark parts.

I am very slow, Ian could do probably 8 hits in a second. I used to be able to do more, but then the little impulse slow down. But I did sweat on 80%, next time I will try for 100%.

Sharon: I have to give into the terror sometimes to come out the other side. When it is all I can see, I have to enter it, to see blue sky again. But thank you, I will continue to try to be open.

Baba: Exactly, we love the nine months the lead to the 'miracle of birth' but look away from the shadow and shush those who talk about it.

Thank you for your awareness and sensitivity for all Beths, I hope that knowing the different parts of me is interesting instead of a burden.

When I send postcards too, I think, "Geez, I hope this isn't perky mail from a dead woman" but I have to live, like you as if living is all that I am. We all play this game to some degree or another, that there are no accidents, nothing that could delay or hinder or bring sorrow behind the doors of time.

YEs, I know, another year is beyond imaging for me, and yet, why not. But I did not know people or anyone could have certain conditions (heart stops beathing when they breath, they stop breathing when they talk too much, etc) and yet still be not only alive but rather functional for parts of a day (sure I have TIA's and seizures but then, other people sneeze and go on - this is just a BIG sneeze). What would be going on in a year? I really, really hope it wouldn't be CO2 enema's - but if that is what it takes to live, lets hear the foghorn blow!

I am glad you stay, knowing the price, and more, that you talk to me. That we talk together and have a friendship. I am glad you are not part of the circle of friends and those who die, yes, having a shadow gives a different point of view, but at what a cost. No need to rush that!

I have always thought that insanity is the label of those who don't socially conform amoung other conditions(I can't help it that my disease has an agenda, I am busy doing dangerous things!). I take my pills that stop the OCD and depression at morn and night. I missed a few and went into OCD which takes up a LOT of time. Thanks my friend.

cheryl g said...

I have to agree with your coach… you are the most tenacious person I have ever known as well. I thank God for that regularly.

When I was in med school Kubler-Ross’ on Death and Dying was required reading. Now that I have shared so much of your journey I realize it is also a book by the living, for the living with no true understanding of what the journey is for the dying. I have come to realize that that book and all the others I have read about dying and care giving for palliative patients still skirt around the hard parts, the shadow no one wants to talk about. I have witnessed death a number of times and it has never been the same twice.
I do not believe it is possible to truly be ready for it. I think it is more a case of not getting a choice any longer.

You have taught me so much about truly living and helped me grow into a better person. One day you will no longer be physically here for me but you will ALWAYS be in my heart and in a sense here for me. I will remember the lessons I have learned and they and you through them will continue being there for me. I am not terrified of you. I am in awe. Thank you for letting me in.

JaneB said...

Beth, my friend, it's a priviledge to know you. It's good to hear that you made it to boxing and managed to sleep afterwards.

Like others said, every time I come here and you posted again, knowing you're still alive is a gift. We are all mortal, you just happen to be closer to that mortality at the moment. But you could outlive any one of us - accidents happen. Life has to happen NOW, because there is no guarantee that any of us will be here tomorrow, and if there are only tiny gaps for humour and love and caring and pleasure in a day of pain and hardship, those tiny gaps must be seen and siezed with both hands. I've neve known anyone like you for chasing those tiny moments, and sharing them.

The shadow is always there - awareness of the shadow makes each sunny moment precious. It's a bittersweet reward for making the move from unaware of mortality to awareness. I find it odd how many people seem to totally blank out that reality, that life is fleeting. But how upset they get if you confront them with it - which you do by your very existence, I expect.

Sorry if I'm rambling, things are a bit foggy and grey in my head today, but I needed to talk to you anyway! it's a pleasure to know you, and I hope to know you for a long time yet

Raccoon said...

It's not about how ready you are. And it's not about fighting or giving up. Or about accepting the inevitable.

It's about deciding whether or not you've done everything you wanted to.

On a (possibly slightly) different topic: I think you would enjoy the British TV series "Hex."

Neil said...

Beth, dear, I'm always happy to know that you're alive. Sometimes, though, I am somewhat surprised that you are alive. Happy, but surprised.

Tenacious; that's an excellent word for you.

By the way, one of the Olympic athletes (Canadian, I think) said something like, "Screw bronze, I'm going for gold." I thought of you, and smiled.

Construction until Christmas? That truly sucks. What on earth are they building, other than the construction company's bank account?

Love and zen hugs, dear. Always zen hugs,

Elizabeth McClung said...

Raccoon: Have I done everything I wanted to? HELL NO! I have to get to Australia to visit people there, I AM going to see the Eisners, and I have a lot of books to read, conversations to have, things to improve in this corner of the world.

I saw Hex 1 (where the lesbian dies after like, 20 mintues!), have you seen the second season - I guess what comes after the 6th episode? Is it good? I hear the Being Human 2 is very good (Have you seen Being Human 1 - that was the big hit from last year along with Life on Mars - I am a total UK TV fangirl - I like The Fixer - it is a GREAT show, I heavily recommend season 1 and I will let you know about season 2).

Have you done everything you want to?

Rebel Child of Light said...

It is with a growing sense of wonder that I read your blog, dear Beth. I see before me a woman who, with a strength unknown to me, grabs Life and refuses to let go. I could only wish to be like you - there is no way I could even attempt to do those things that you do. That you DO.
And that's the thing, dear Beth. The difference. Whereas you go and Do, it is I that can only wish. I watch you and wish - how I wish! - I could be like you - strong, defiant even in the face of Death. I realise that it is only fear that stops me... fear of pain, fear of hurt, fear of whatifs.. I ride my horse for 20 minutes a week (if I am lucky!) and all the while I am thinking 'what if?' and the fear stops me.

One of these days Beth - one of these days I will rise above the whatifs and I will ride, chasing the sunset, all the while thinking of you. For you are my icon, my sister and my friend. And for that I thank you.

Aviatrix said...

We're all going to die. All of us. It's the only thing we all have in common. But so many people get to that event without having thought about it at all. Why not read your blog and learn from someone who is doing it well.

Vanessa said...

I've been sick with the flu so I've been out of it for a week or so. I'm glad to see that you are out and about beating on that bag though! :D

FridaWrites said...

I'm sorry I'm behind with commenting--have been caught in a red tape bind but think I've found the scissors.

You are one of the two most tenacious people I know--the other also terminally ill and on a vent for quite a while. I believe that's helped you retain as much function as you have. Both of you deal with administrative/medical difficulties, funding issues, challenges getting caregivers. But through it all, both of you give back to others extensively and do the darn hard work of maintaining function.