Friday, December 04, 2009

Palliative uncovered: wheelchair boxing, being in the now, and what's left.

Palliative comes from the Latin meaning to cover, or cloaked. That isn’t me, hiding, cloaking things. Dying is like childbirth, it is hard to hide if people are really looking. But we have been taught not to.

We are born, thus we die, and there will suffering somewhere in between those two parts. But what details do I talk about, the two weeks of fevers alternated by going into cold shock day after day, having to be wrapped in blankets, the stopping of breathing during each day, and shallow and stopped breathing each night, and waking up with purple fingers. My systems are shutting down, and I sleep a lot. I am less HERE, where-ever here is. Breathing is more difficult as the diaphragm fails, no eating, little drinking, failure or irregular workings of internal organs, spontaneous bruising and hemorrhages, the general withdrawal. That is where I have been this week.

After getting back from boxing Linda said, seeing her caregivers guide to end-of-life in my hands, that I shouldn’t look at that.

“Why, how do you see me?”

She swallows and says, “Palliative. If asked a day or two ago I would have said you have a couple days.”

Yeah, that is kind of how I felt too.

She continued, “But now, with the exercise, longer.”

“Longer?”

She hesitated, and I waited to hear ‘months’ or ‘till fall’ or ‘summer’, Linda is the person who breathes for me, and helps me in everything from getting out of bed when too weak to do anything but wait for her to come home (as has been recently). She checks my breathing, she starts me up again if I stop, and this week cames home at lunch to make sure I haven’t died while she was at work. I was breathing so shallow she couldn’t hear me at all until she was right over my head.

Still, she is the optimist, she is the one who wants me to hang around no matter how bad it gets. She continued, “With the exercise....weeks.”

Well that sucks.

I have enough consciousness now with endorphins to remember that being okay with dying is not supposed to be fine, particularly when not that depressed. But that is where I am, and have been When I just sit and stare out trying to breath (yes, oxygen can be very demanding of attention), or cleaning up with help and putting post it notes with people’s name on things. This are the chores of dying.

I had an annoying worker. So I told her to leave. Dying takes all my energy, doing anything or being with Linda is more important. I don't have the time for her. I miscalculated and had a phone call and talked 45 minutes. I immediately passed out after that and stopped breathing. It took three hours for my body to recover from that 45 minutes, strong enough to speak (slurred) and eat a little.

No, this isn’t how it supposed to go, I’m the heroine of this film and how can the film go on if I am not onstage.
Oh PLEASE don’t tell me now that I was just an ‘extra’ – a walk-on?

Today I fought hard against the desire to sleep or just lower my head and stop breathing (the irony is that my body, due to the nature of my disease will continue to look okay, and have ‘good skin’, right up to being dead), in order to get ready for boxing. No energy to put on foundation…ah, this stuff is a feminist plot against the fatigued!

Once more at spinning the revolver and pulling the trigger. Sweat or die, or die trying to sweat. Boxing is two-fold, to get back in shape as quickly as possible and to sweat as much as possible by exercising to and beyond the limits. If a phone call can make me unconscious, and I am living off endorphin fumes now, I wonder what I will like tomorrow? But I really gave it everything, starting off with sit ups (about 130 in total) and push ups (somewhere over 100).
I went until I had nothing and I went on, one arm wouldn’t straighten, I tried to make one more push-up again, and again, and again, and screaming I got one arm straightened, and slowly straightened the other one. A collapse.
I didn’t care about tomorrow or tonight, only now and that I believe this was a way to extend my life. So I boxed the heavy bag as if my life depended on it.
I used the swinging of the bag to throw a lot of fast punches, averaging three punches a second, to hit but not give full power and rip muscles. Sometimes it swung back and I let it hit me, building up my strength and resistance to attacks.
Linda said I boxed with a face that she had only seen on characters in movies before they are to run down a hill into battle and certain death, “AHHHHHHHHH!” I didn’t scream but I was, very, intense.
I think I might have scared the other people there.

Boxing and Epee are sort of similar in that you need to be in a relaxed state with your arms, in the beta zone, but with instant focus and then action. I was rusty, and dropped my right hand a lot. The coach for the night said he would spar with me. He put in his mouth guard saying to Linda, “I know her.”

What?

Most of these moves occur in less than a second, the trick is to move your arms with enough strength to block a hit but to move your other arm with precision and force to the target. I tend to focus on gut/heart hits and head hits. So here you can see that he threw a hook to the side of my head, which I block.
Meanwhile my left fist is already accelerating at the space it sees. He has pulled his arm back but my arm is extending and accelerating, and there is a gap of strength as he is just pulling his arm back and not quickly enough. Though I drop my right fist my lefts gets through to make a full face hit (minimal force). It all take less than a second.

Here you can see the coach planting a jab on my defense,
it doesn’t break through but I follow his arm back and as his hand goes to cover his face, I lower my arm and extend into the abdomen (he retreats to lessen the power).

In this last exchange I have seen a chance at a hook, and extend, with my right,
the left is covering the face. As I get to him, because I can’t step forward or twist for force, I lean forward to give it more OMPH! He blocks with his glove and shoulder.

But all of this happens very quickly (micro seconds to a second). Here is a video of a few seconds to show you how the better you get, the less you AND your opponent get hit, since you are always practicing defense, the relax and focus and looking for opportunities. There is practice but little violence here. video

I continued on, for 90+ minutes and when they called break I shadow boxed, or worked on. What if I was too weak to come again? This was it.

I got back home and the workout had made me sweat and restarted my intestines, which along with my colon had stopped the start of the week. So I am back, EFM lite.

The thing is I don’t know what I want, what I am fighting for, I wish I did. I wish I had a vision, a giant vision and that I could take everyone along for the ride, for the joy of it.
But I don’t. Maybe I can get to a place where I can. Right now, it is just trying to survive. We are going to hook up the large oxygen concentrator as a makeshift overnight oxygen provider while I sleep.

It seems I am supposed to relax, rest, and remember the good times, the seeing of fireflies, to try to recapture those memories.
Yeah. Why don't you take that idea and file it where the sun don’t shine. I MAKE memories, I don't live off what used to be. I make miracles, and if there was one needed, it would be now, I wouldn’t mind a bit of outside help, if Miracle Inc. is reading blogs now.

See, I played double bass, which has exactly the same stringing as the bass, and yeah, I’m her, the girl in the picture,
I’m sitting here with a body and a life where two of my four strings have broken. And that SHOULD be the end of it. Except that by doing all this math in your head when you play, you can actually play all the rest of the notes and avoid using a whole string while doing it. But TWO? Well that just makes it really hard, right? It means that it won’t work perfectly, no low bass, no super high, limited, but I can keep trying, can’t I? Till that miracle comes.

Linda’s co-worker mentioned something about how she should tell me not to ‘go to the light’ and Linda told her casually how it was green really. What!? Linda told her that sometimes there is a party I have to go to or I say, “Let me go, let me go, they are calling for me.” And how one time there was an ice skating party (I don’t remember this at all). This freaked out the worker. Guess Linda is beyond the veil what is typical too.

Maybe I will die, and yes, I am more withdrawn now,
but I am going to try everything I can to figure out other ways to deal with that, and other ways to keep going, and processing nutrients. Linda put two of the new problems on the wish list. One is that her beater died (food beater?), and she found a half price one which has the speed and such she needs. The second is that my feet are back in pain, due to my body going cold, even with two blankets on my lap my feet hurt all the time from the cold (with two wool socks on as well!). We will try to deal with these as we can, if you want to help, I am grateful. But it is a choice. I don’t promise life, wish I could. I do promise that I am trying really hard to FIND a way to look forward, to fight. Because I need to fight to find a place where I can enjoy being in the HERE (many people think about what comes next, and they aren’t actually HERE), but still challenge myself and work hard to keep myself alive (Which takes about 50-60% of my time each day, now). And yeah, the pain all the time thing sucks.

Pain sucks, so does, knowing that I will be alone for a international holiday of getting together with friends and family. So I have another holiday, December 6th is Canada’s National Remembrance and
day against violence against women. This year is the 20th anniversary. No more violence (odd code for someone just from boxing and who talks about fighting a lot). I want any meeting of people to be a meeting of equals, whether that is at a free clinic for street people or any medical or other meetings. I respect you, you respect me. Then maybe the emotional abuse that seems built into the medical system, the beating you down as an equal and competent in your field as the doctor is in theirs (or more competent) would be gone. No more women, no more people falling through the cracks. I believe in that. I guess that is what the gifting from me and the postcard project with Cheryl and Linda is about: that someone out there knows you and cares.

If I die now, or in the next days or week or two then let me found both doing and being: being with Linda, being where the joy is, being in the NOW.
But still doing what needs to survive. Because if I/You don’t survive, then the story ends. I want to care about what happens next (I don’t really, not inside, but I WANT to care), the only thing I know is that I have two doctor’s appointments and a blood draw. But I would like a hair cut. And Linda saw a raccoon last night. I would like to see that. Or an owl. “It is a start” a fictional friend said, enough to start having a life maybe.

20 comments:

JaneB said...

Thank you, again, for sharing your journey. But please, don't feel that there is pressure on you to make these lovely illustrated blog posts - if it gives you pleasure or purpose, then I am here to read. But I value you, alive, and being, more. Virtual hugs, my dear, my teacher.

David said...

I love boxing so much. I'm amazed at seeing the pictures and the speed with which you move; the training you've done.

Keep surviving every moment. I sent you something off your wishlist earlier this week but it's neither of the new things. I hope somebody comes through for you on that really, really soon.

Your postcard arrived. It is beautiful, and cheered me up yesterday when I saw it slipped in between the junk mail and coupons I will never use.

I am pulling hard for you.

Wheelchair Dancer said...

Fight! Fight!

We care.

WCD

Kathz said...

I may not like boxing but that boxing session looked like a triumph.

wendryn said...

*hugs*

I wish there were more time. I wish you had something to fight for, since you are so good at that. I am really glad you are telling annoying people to leave - there is no reason to put up with unimportant annoyances at the moment.

I'm here as long as you are, my dear, and we both think of you often.

It's really good to see you still boxing, still pushing so hard, still working to sweat. That's important. Linda wants you to stick around as long as you can; I have to say I agree. On a completely selfish note, you dying would leave a large hole in my life. I've never met you, but you have become very important over the years we have communicated.

I find myself without words to say what I mean, so I will let it be at this - you are a valued, important, and much-loved part of more lives than you know.

rachelcreative said...

EFM Lite is much more vibrant, strong and full of passion than a lot of people who have limitless opportunities.

I suppose we as individuals are the only ones who can decide or know what drives us (what to live for, what to believe in). But if I can help you unlock that I will try?

The boxing looks awesome. Wish there were ways to sweat and kickstart systems without the pain and problems with oxygen conversion and all the rest.

I'm thinking I maybe I should send you more than one thing to open when my next letter is due so you can open things over Christmas and New Year when the postal system might get bunged up. If I can manage it I will do that and I'll start thinking of ideas now in preperation.

I know that's not The Thing you're going to want to live for - another letter, another pop-up, but maybe it's something to look forward to. Which was the reason you asked for letters all those animals ago.

Aviatrix said...

I wonder what percentage of people deemed "able bodied" can do 100 push ups. I imagine Death is more afraid of you than you are of Death.

Emma said...

Glad you got to go boxing, I always think it looks like a lot of fun. I've enjoyed playing the boxing game on my brother's Wii Sports a few times but never done it for real. Love the pictures you always put in your entries too. Wish I had something more to say about everything else - sorry I've not been around lately, have been crazy busy writing a novel amongst other things. (((hugs))) to all.

cheryl g said...

I love the pictures of you boxing. You look so fierce! That is definitely the face of someone rushing the machine gun nest. I hope the boxing makes a difference. I have been very worried and scared this week because of how you were when I left last Sunday.

OK, short term things to aim for will include a haircut for you. As you say, “it’s a start” and I can keep thinking of other things like train trips, Sakura-Con, dvd’s to watch, and books to read. My goal is to help you find ways and reasons to stay here as long as possible.

Raccoon said...

"I wish I had a vision, a giant vision and that I could take everyone along for the ride, for the joy of it."

I don't know about a giant vision, but there are a lot of us along for the ride. Just... I hope you don't mind if we jump off before the last stop.

Situps and push-ups? Over 100 of each? Day-yam! I couldn't do that many even when I was in my AB prime! And the situps & push-ups & boxing got your lower digestive system working? Maybe I should try that, make my routine a little shorter maybe.

It's not that Linda is atypical, it's that the two of you have been dealing with this for so long that it's become routine, almost. I think that that becomes the case with a caregiver no matter what the situation is. The first few years of a child's life, mom comes running whenever she hears a sound. Later on, she ignores the sounds, and comes running when they are silent. Sound becomes routine. You see somebody, let's say, in a chair. After few times, you don't really notice it anymore. It's become routine. But the first time your coworker sees the chair...

I'm still here.

yanub said...

Get your hair cut. Why shouldn't you? Why wouldn't you?

I'm glad you were able to get out and go box. Please find something active to do everyday, even for days you can't get out. Do you shadow box at home, too? Or have some kind of bag you can punch at? You need something you can do at home for when you can't get out. Maybe that way, those weeks Linda sees will turn into months. (I just had a silly idea of you pretending to be a cat and Linda dangling a string in front of you to swat at. I know that's silly and not what anyone would call useful, but I do like the idea of you being a cat.)

There's a very good chance you will die soon. On the other hand, you've been expecting death for some time now, and like a tax auditor who keeps canceling his appointment with you only to reschedule later, he has regularly failed to show but at the same time has only made you more anxious. Screw him. Like Harriet McBryde Johnson showed, you may as well die doing something as waiting for him. So. Anyways. Ummm. Yes to haircut. And to Doing Something Vigorous Everyday Even at Home? Maybe that can be a goal, or part of one?

Diane J Standiford said...

Oh man, now you got me crazy to want to box! I used to live beneath a gum for 16yrs---WHY didn't I go for it!? Emarrassed, now I feel stupid. Gotta get some gloves.

Lene Andersen said...

I love the look on your face as your boxing the bag. Determination, the quintessential fight, sheer willpower. And I can see sweat! Yay!

I also loved this: "I MAKE memories, I don't live off what used to be". It almost seems as if rest and relaxation will kill you faster, so yeah... make memories. EFM is EFM. And being your friend is like being on a ride that is often one of pure joy. You live more in one day than most people I know do in a month.

janne rantanen said...

I JUST tried googlin wheelchair boxing, as i didnt even know is it a real sport.. among several pages i found urs, it was a blog post from -07, i was excited thinking i had just found a page where i could directly contact a person who does wheelchair boxing..

I dont know at all whats ur disease, i dont know anything about you but..

Im 16 years old, im from finland and im in a wheelchair, i have a genetic disorder in my dna, called Osteogenesis imperfecta which causes my bones to be weak, my disease doesnt evolve, so ive gone through my worst years already.

What kills me is that if i didnt have OI i'd be an athlete, im crazy about sports.. and thats why i went to the gym a few years back just to see if i could do it.. a year or two went by till i realized i can fkin do this shit, earier this year i studied, i learned and i became really strong - until i broke my arm 4 weeks ago...

During my absence from the gym ive rethought about my life, and my love towards martial arts and gym andd... the more shit happens to me the higher goals i have, so.. among weightlifting ive decided to try boxing/any martial art, which is obviously why i googled and ended up here.. I dont know why im commenting tbh, just felt like it, i dont know..

My long term goes are to walk again, something i havent done in over 10 years, back then it was easier to learn it again everytime i broke my legs, i didnt know how to be afraid, nowadays its easier to sit than fall and break.

Anyway... i know i'll walk and i know i'll lift weights and i KNOW i'll accomplish everything i'll ever seek out to accomplish, aanndd.. its just funny how i look at other people, laughing and thinking they dont know what im going true, i have the right to complain they dont.

People like you always remind me that.. there are always people in worse situations and people who are much stronger than me, thats something i should remind myself about each and everyday, anyway i dont really know why im writing this, ive just thought about my life and put this into a new perspective during the last couple of days.

I really admire you, and this is a page i'll bookmark and check everyday. I dont know if it makes any difference to you but.. youve just made a pretty deep impression on a kid from finland, /hail

Elizabeth McClung said...

Thanks for all the comments, Jane from helping me keep writing as I can.

David: I was pleased to see that I still had the rusty basics left and the 4, 5, and 6 punch combos. Glad you got the postcard.

Janne Rantenan: Go for it, I think one of the posts has a basic guide on how to do boxing wheelchair style in training. We both got dealt our lives and we make the best of it, yeah? Sounds like you are making good progress - too bad you aren't here, we could take kick-boxing together (the instructor said she would take me in a wheelchair - even though it is KICK boxing).

WCD: fight! I need a goal, a purpose, and then I am there. I have never valued my life enough to have it inspire me to fight for long. Will work on that.

Kathz: Resting wasn't working so I was trying hard exercise, so I gave it everything I had. Now that I am healing, it is knocking me down again, and I may be silent for a bit, but I hope when healed, I will be back with more energy.

Wendryn: Well, I would rather have my obit read, "After a long illness, she died during a seizure during a bout of boxing" than "she died in bed." - I want to die with my boots on, as it were, if I have to die at all - but of course, as the protagonist, I have to figure out how to live forever, I need a sequel, a whole series.

FridaWrites said...

I was surprised that you're back to boxing, but I think this is very good for you and will keep you going longer. You go, girl. That's determination.

Not quite so meaningful, but I battled and won against the kitchen today--wanted to cry from pain from doing dishes. Just boiling pasta and adding plain tomato sauce and opening pineapple and black eyed peas just about did me in. Pasta was kind of weird because I couldn't use a big enough pot with enough water, couldn't lift it. But I conquered--I thought for a while I wouldn't be able to eat tonight--because I couldn't physically do it now.

A. J. Luxton said...

I am glad you got to box. I am glad you are fighting.

Maybe you can't see your grand vision now, but you've brought one into the world. It is the postcard project, and your book, and these words here, and all of us. You have made something that is large and magnificent and worthwhile... a word at a time, a page at a time, day by day, hour by hour, minute by minute. And even if you can't see it, you are still making it happen - and it will continue after you are gone.

But stay here as long as you can. For the raccoons. :-)

(Here is a cat boxing with one. And these ones would really like some ice cream.)

Neil said...

I always thoughts of boxing as more than a little stupid, but I learn from your description that it's more than I expected.

Stay as long as you can, dear; but please realize that you'll be remembered when it is your turn to go.

Love and zen hugs,
Neil

e said...

Hugs to you, Beth!

Your boxing looks fabulous---makes me want to give it a go even though I hate professional boxing...

You were right about my axels, but my adaptive seating person simply advised to leave the anti-tip bars on for good.

I hope you enjoy your hair cut, and a new book or more. I'm checking out the wishlist and sending a card with more stamps.

Sending you many hugs!

Stephanie said...

ONE HUNDRED PUSH-UPS? I can hardly do four. I have some catching up to do (now I have to figure out if I should take a PE class next semester. Geez, Elizabeth. Keep pushing me why don't you).

You know, I don't have degenerative diseases - just asthma and depression - and exercise works better for those than rest, too. It's odd because we all want to rest more, but it just doesn't work that way. It's a strange thing.