Thursday, August 27, 2009

Desperation. Sacrifice. Fighting.

Before the very interesting posts about an original 1933 Model T 1.5 ton truck, of which there are only 20 left, as well as yarn, spindles, and other joys, before that...

Last week I started going out in my Ti-lite wheelchair daily, going out to ‘make memories’, and I rejoined the Y because if it were not for sheer will power every single day I would already be unable to leave my bed. It seems I have a small time before that choice/chance is no longer a choice, and I will not go out without fighting.
My scalp is no longer getting blood and hair and scalp are falling out. I do what I can to hide that, at least in pictures. The same is true for my arms and legs. But unless I can get my blood to flow the way it did over a year ago….this is going to be it. My neuropathy has progressed and now with a majority of pain nerves gone and sensation nerves gone, the larger nerves are being destroyed. The right side is progressing faster so on that side my hand, arm is slower. Both sides are slow, and fatigued.

I was to go to badminton tonight but I simply could not. Just going up to the Y and rolling back interrupts my nerves so much that I cannot with both arms hit the button to bring the elevator. I went twice to the Y, then to the arcade the next day, to two farmers’ markets and the next day the RSPCA and did 48 postcards and a few gifts. Those actions almost immediately started depressing my respiration to the point that any relaxation of my general muscles would either result in passing out, or a ceasing of breathing, sometimes for a dangerously extended time.

I would love to know how I can have broken toes or have my hand crushed by a door and not feel it and yetstill be yanked awake daily by the pain. My doctor (steady walk-in clinic) saw me and doubled my medication. Um…that’s lethal levels I think, but I get the point doc. Believe me, every minute I am not focused on trying to write, or watching something the pain is not just there, it is pervasive. It hurts to breathe, it hurts to move, it hurts to sit still, and to sit or lay and do nothing, nothing to distract, well that is just a bit too unpleasant. By unpleasant I mean remember that time you had your hand slammed in the car door, or when you fell or thought your ribs were broken or cracked? Remember that and how you were kind of amazed that it is possible to think semi-sane thoughts with that level of pain. Or think and speak at all? Unpleasant.

Okay, in pain, fatigued, yes, but so what?

Well, I want to live. I do. And if smashing against the wall of my body to find a way into extending the time before I can’t leave the bed, then so be it. I have been working and monitoring almost everything I do at 15 minutes intervals for months to stave this off. Talk about burnt-out! I need to get to Hawaii and I need to do that in my Titanium Chair. To go to the Big Island and Cremate myself if that is what it takes. I have Cheryl and Linda to restrain me from acting on those types of thoughts. I still plan on going to see the lava and the stars.

I would do so much, would have done so much more, if I had known how much energy it takes to simply be held upright and breath in a $24,500 wheelchair just made to support me...could I have gone on? The fatigue is a cruelty. So to do that for 10 or 12 hours a day takes a lot of energy, makes me so, so tired.

And to do that, shower, dress, go wheeling uphill, go out if not every day then several times a week, to prepare to externally retake my life of last year. Why? So I can get back into boxing. Because that is where I sweat before and if I don’t sweat soon I never will. I will risk the daily seizures, the daily mini-strokes, the stopping of breathing, the pain, God why did you make the body have this many ways to hurt, to achieve that. And I am only a couple steps away.

Yes, the last few months have been me faking it, pretending that I was in better condition than I was. Sorry. I didn’t want to disappoint you. I didn't want the disability community to move on because I wasn't any type of disabled they could identify with anymore. Plus I didn’t want to be stopped (the PLAN!). Do I pretend so I can continue to make a difference or because I am selfish in the extreme: both.

In the west, I am trying to track down a saying that ‘We don’t do suicide missions’ but all other countries built suicide subs or human guided torpedoes, even the UK and Italy. There is a culture which does not lay it all on the line – isn’t that the service to the British Empire, Gordon holding off the hordes, to lay one’s life to the better land? So what will I sacrifice to stay disabled instead of dying?

Sanity.

Fuction of limbs. The limbs themselves.

I never ask people to do what I ask of myself. Why not? We are all human. If they feel agony, then can I. If they can feel pain and loss then so must I. If they grieve over what is lost, then so do I, so do I. Except I can’t grieve for the losses which occur in a week, a month much less a year so I don’t talk about them, don’t write about those losses much. Who would understand anyway?

Why not rest? Because I have a progressive disease that never rests. And because I am only holding on that will power to get me out of bed and into my wheelchair by a thread, the one that lets me push that bit further. That 'thread' and routine get me out of bed, that and planning get me out the door. That and vanity to appear ‘okay’ to anyone passing by or that I met makes me expend a half days’ energy in a half hour. The fact that I can spend the energy that helps me breathe doesn’t make me bright when I do it, but I do.
Whenever there is a disaster, or when people start running, there is one person, me, who starts running toward the problem, and that’s the way it has always been. Even now, I still want what I recognize is the easy way: to die for another. A bullet to the head for me, to save someone, to save me...that is the easy way.

That’s why I like Terry Fox, because for him it was always hard. The training was hard. The days of cold were hard: minute by minute. The blisters on his stump end were hard. The pain, yes, the pain was hard and maybe if he had been offered regular check-ups they would have caught it early enough for him to live. But that would have meant someone, somewhere taking responsibility so while he shook the hand of the Prime Minister, he didn’t receive medical care while running 3,339 miles, more than the breadth of the USA in 143 days but only when he could not go on another day was he finally tested and the cancer found.

Tonight for the first time I read the letter, the first one he sent for fundraising, to the Canadian Cancer Society of those in the ward he left:

“There were the faces with the brave smiles, and the ones who had given up smiling. There were the feelings of hopeful denial, and the feelings of despair. My quest would not be a selfish one. I could not leave knowing these faces and feelings would still exist, even though I would be set free from mine. Somewhere the hurting must stop...and I was determined to take myself to the limit for this cause.”
I can think of no better summation. To continue to live, to keep going, to take the pain as I can't get out of bed. To go on even after speech and other functions have failed, as long as words can be recorded is my future. I will take risks to extend it, even though it is going to be hard. I don’t know what else I have to offer but my story, my day to day life, the truth of that, and the reasons why I put on the face, why we all do sometimes. And to explain why I keep going, and will keep going. I depend not on a miracle cure, or even the treatment I have been promised by the neurologists of British Columbia (still yet to appear – hello, IVIG? I’m over here!). I have had my home care reduced because my medical conditions are ‘too complicated’ and ‘there is no GP oversight.’ No one wants to take responsibility, not even those who would help me to pee, to shit, to eat, to sleep.

I take responsibility. Because someone has to start. Someone has to care. It isn't about just me but dozens to hundreds of people in this town alone dying THIS YEAR because of the poor care, the lack of equipment and tests which would be available in a first world country. I am just articulate and have access to a computer.

Medicine isn’t about ego’s, or a failure to take personal or larger responsibility but the opposite, with the opportunity to help or hurt others lives come the responsibility to do so proactively. When the staff has ‘birthdays’ for annual stays of seniors citizens (people, real people who are only a decade or two or three older than you) who are filling hospital beds because there is no place ‘to shift them’. Something is wrong.

Yes, your province may be great...today. Yes, your GP in British Columbia may be super...today. Because if you plan to live longer than a few years, you need to worry about it too. When 50% of the people GIVING me care who come in, including the temps (HALF!) have no GP of their own, then it is a story that needs to be told. And to tell that story I have to live it.That story is written on and in my body and within the DOCTOR’S charts and documents my last GP had the receptionist box up. That administrator then called Linda to tell her if she did not pick it up that day, over two years of extensive tests would be destroyed. That is how I found out I didn’t have a GP (again). Last time I went into see the walk-in clinic doctor there (for the third or fourth time) I heard her ask the front desk for my chart.

“She doesn’t get a chart here.”

Doctor, “Well, this IS a walk in clinic and she DOES keep coming here so why don’t you start one (so I don’t have to take her history every time she comes in…).”

Yeah, I could sue the owner, a doctor, for discrimination at the BC human rights court. The last trial lasted about five years. Do you think I have five years?

I am not ‘inspirational’, nor am I ‘courageous’, 'heroic' or ‘defiant against the odds.’ I know the odds, I know I will die; I am just willing to risk further impairment to extend the time before that death. I didn’t know what desperate was until now. And I will probably say that again a few months from now....if I have a few months.

No one has ever beaten death.

That isn’t going to stop me from trying.

If any doctors in BC want to get off your ass and try some of that ‘do no harm’ stuff, please join in ANY TIME.

17 comments:

Neil said...

You're stubborn. In a good way. Keep fighting, and someone will eventually listen; possibly not until it's too late for you, but hopefully before it's too late for others.

Love and many zen hugs,
Neil

yanub said...

I have no doubt that you will fight to the end. I have never doubted that. It is your very nature.

There is a terrible crisis in GP numbers. That both the US and Canada, with completely different systems, are having the same crisis is strange, don't you think? What is going on that both countries are facing such a shortage?

Lene Andersen said...

As ever, your eloquence and passion shines through and brings home the point that this isn't something happening to "someone else", that it's happening to us and needs fighting for.

Loved the image with the girl on the cliff. Went back and looked at that a long time.

Fight on. I'll be cheering for you every step of the way.

wendryn said...

I swear, you are the most stubborn person I know. Love you for it, too.

This post is very moving. I didn't know the blood flow was doing so poorly. I didn't realize everything was progressing so fast, I guess. The pictures are beautiful & evocative. I don't know how you find things that so perfectly express what you are talking about.

You are, whatever you may say, amazing. Your voice makes a difference to more people than you know.

You don't need to pretend to be better, to hide. Your reality is teaching people about how people can get missed in the health care system, about what needs to be done to seal up the cracks. You are opening peoples' eyes to the reality of not being able bodied, and to the reality that almost everyone will face someday, that able bodied is not something anyone can take for granted.

Thank you for writing your reality again. I wish I could ease the suffering.

*hugs*

SharonMV said...

Do no harm - if only doctors followed that most basic part of their oath. So much pain & suffering would be avoided.

I know that life has been very hard for you & on you these last few months. Yet you continue, you choose to go on, you choose life, you don't let go no matter how hard it is to keep holding on. You're fighting the battles, willing to take the losses, physical & emotional, in order to cling ever more fiercely to life. I love you for that. Thank you for sharing the truth with us.

So here is my answer to the challenge you put forth in an earlier blog - I will go out & do things. And not just for doctor appointments or tests. So maybe you're not an Inspiration, but you are a paradigm, a hero, a leader, a sister, a friend.

Yes, badminton! Bring on the boxing! (For you of course, not me!)Let angels fly along the course of the next 10K. For me - a trip to the nursery, or to a bookstore. A walk along the shore (albeit a short walk), a visit to the forest.

Love, Sharon

e said...

It bothers me beyond words that you don't have better care and worse, that you feel alone. You have been a friend to me through blog and e-mail and cards, and I appreciate that more than words can say, Beth. I take heart in your fighting spirit and sit in awe of your continued zest for life and activity. I think of you often and come here as I can. Let me know if there is anything else I can do.

Cereus Sphinx said...

I'm sorry you're not doing better.
Really.

Thank you for saying this. You don't have to hide anything. Also, You've been (and continue to be - I hope. Just that you continue to be.) a good friend. Is there anything I can do?

Thanks for the postcard as well! It just came :) :) :) I'll send you an e-mail with pictures. Any requests where you'd like it photographed?

Cereus Sphinx said...

Also, when you were "making memories" did you bring your camera? ;)

e said...

Thanks so much Beth for the information re: DVD's and related issues. I had no idea! I will get back to you ASAP...Best,
E

Elizabeth McClung said...

If you want to help me, help Linda: linda.mcclung at shaw.ca - she needs encouragement too - she needs postcards too. She works so that I am in less pain, we eat less so that I have a better quality of life (no, not a great one - but better than being curled in a ball). If you want to get a present - on my wishlist is a Nick Brandt photo book - she loves Nick Brandt and Africa and Elephants. But I also think she would love a postcard. Or $5 to go out and have a drink with people at work after work. Care for Linda, because she cares for me: she literally breathes for me when I can't.


Neil: I refuse to give up my right as a human being to be treated equally and that has probably cost me - in one meeting I asked the person in charge of night workers, "If I said X, would you want ME to stay that night." - trying to illustrate it is not abstract, it is something that could happen to her. She thought about it and actually became a bit of an advocate.

I think whenever we go, it feels to early, and so I do hope that people will listen and change. Medicine, with the baby boomer generation is only going to become more and more important. Thanks

Yanub: I hope I fight to the end, sometimes I get tired, you know that, "I've fought this before, not one more time, I'm so exhausted...." feeling.

I think actually 9/11 and the limitation of all foreign nationals being able to go to university in the sciences or get work green cards easily is now making not just the top heavy baby boomer to Generation Y a problem but the people who would learn at the medical schools here, and stay on, are now just as likely to go to the UK or elsewhere. And the days of importing lots of doctors from South Africa or India are over I think. Also, how close to a teacher hospital, a university hospital and such makes a huge difference, I have none where I am. The UK has some problems but GP clinics are not one of them - lets start stealing all the doctors from the UK! (they still do house calls!)

Lene: some have the marathon like you. I though I was a marathoner but it seems like I'm in the hurdles or the shorter race. People don't realize that when budget shortfalls occur, the one population it is easiest to cut without an outcry are those behind walls or in homes. It is all of our problem. The voted greatest Canadian was the man to bring in generalized health care, the second, was Terry Fox, a person who had the people using him in the later days for fundraiser insist on a scan every month, they could have caught it and treated the cancer, or at least given him more than the 5% chance of survival he had - marathons supress the immune system. I don't find it ironic, I find it sad that we don't still have Terry Fox alive today to keep reminding us - less martyrs and more living activists please!

WEndryn: Takes one to know one! Nadana! No actually I think everyone thinks I am stubborn.

I thought because I didn't see a doctor that I was in a oasis, but now it is jumping to several different systems at once. circulation, respiration, nerves. I thought there was more time, I want more time.

We are all blessed with being human beings; equal as such - now we just have to figure out how to turn that into reality. I wish, I wish I could go back and work again and educate and take this drive and give it AB energy. But it doesn't work that way.

Please don't give up on me, that is how to ease the suffering, don't let me wall myself off because I can't stand any more pain, emotional or otherwise.

Elizabeth McClung said...

SharonMV: Yeah, if ego was placed a distant second and 'do no harm' was first, things would be different. Thanks for being there for me, and for not giving up on me, or on you. Life is different now because you chose for it to be. Don't forget that. Any change, any difference is something you chose, and you followed through. You are the stubborn one.

I would love to hear of you emerging, but not at the threat to your health. But yes, to share a day at a nursery (flower? Tree?), to see the forests, I would love to hear about that. The dreams we try cannot be taken away, even that we tried for them. Badminton next week for me! Then Boxing the week after I hope.

The pain is hard. To try and try and live in that shadow of trying and waiting for health is hard. But we try anyway, right?

E: thanks for letting me know I am not alone. I would hope if you would do something, could you help linda - at Linda.mcclung at shaw.ca - she has to be the caregiver, the everything, she has to hold in her losses too. And not only that, I learn from going to the Y to show I am high cost, the cost of pain killers, even on insurance is hundreds a month - And she works harder and harder and yet, how can she do it all. I don't know what that means. Visit her blog maybe, or email her.

Cereus: I'm with you - not so happy at not doing better! I want to be a good friend. You are a good friend with me, patient and commenting. Please be kind to Linda if you can. She needs some kindness, particularly the more I will become less mobile and she will have to use more strength to move me, to breathe for me, to be there when I moan for 30-40 minutes as the pain killers aren't enough.

Thanks - I would appreciate the postcard picture - I did take pictures, not just for me but to post it as I can read the blog or look at the pictures and see what I have done, even if I may not remember it.

But 'making memories' was as much for Linda and Cheryl (a postcard for her too?) than for me - for me, I will remember little in a short time, but they need to remember that it wasn't all pain and frustration, all anger at the medical system.

Diane J Standiford said...

I am inadequate to comment. But I wanted u to know I stopped by. Sometimes u just leave me speechless.

Raccoon said...

Why aren't you going to bring Indy to Hawai'i? Medical equipment (but not supplies) travels free on flights in the USA. And there are wheelchair accessible vans that you can rent while you are there. Talk to me about this.

Reminds me: I have stuff to send you. And the two of you haven't let me know on music!

cheryl g said...

I regularly give thanks for that stubborn and determined core you have. I believe it has a big part in keeping you here and fighting.

I am torn because I have many happy memories of time spent with you and want to make more. However, I also don't like seeing you push to the point where you don't breathe. Since going and doing seem to help you in the long run I will ignore that worried voice and keep helping you fly as much as possible.

I would LOVE the power to get you proper healthcare. I am thoroughly disgusted with a system that won't treat symptoms for improved quality of life because cost seems more important than providing aid and comfort to another human being.

JaneB said...

I don’t know what else I have to offer but my story, my day to day life, the truth of that, and the reasons why I put on the face, why we all do sometimes

That is SO MUCH MORE than many people offer. It is... enough, more than enough, for me and I'm sure for many of your friends and readers.

You don't have to pretend here, or with me, OK? ((Elizabeth)) (gentle, virtual hugs)

FridaWrites said...

You don't have to make yourself stronger for us--I know things are very hard and there's a lot of struggle to get daily tasks done.

Like you, I am pushing a lot latey too, trying to take on more, do more. I am not in the worst pain from it, but am in continual pain at a higher level, without as much relief. It does feel good to do more--(not physically!) but to be able to get out and take care of more myself. It's very difficult to concentrate much because of the pain though. I understand wanting to do things more--my husband is shocked how much I can push sometimes, even while I'm in pain. What he doesn't know is when the pain is at its worst I can't stop moving because of the agony from it. But heck, I'm getting a whole lot done.

Cereus Sphinx said...

Sorry, subtle reference fail.

When you said "making Memories" it reminded me of Ritsuka it Loveless 1, how he takes pictures of himself doing things with people.

So yeah, thank you, thank you for turning me on to those books.