Wednesday, May 18, 2011

Hurt and Love: a Birthday, Cancer and Lance Armstrong

With lots of systems to fail, my body seems often like an old clunker car: I spend more time in the shop (unconscious) than on the road. But, it is what I have and let’s go with that.

I am celebrating my birthday as and when I can, since right now, I follow the disease and it tells me when to sleep and wake and stuff like that, not the other way around. But I hope to get to a system of waking and sleeping that is stable. In short, I hope for a remission. It is kind of hard to tell if I am going 'downhill' when I have an emergency every other day. And while pain is never boring, constant random emergencies get 'tiresome' and then I end up playing the 'what if' game later (You know, 'what if I could have prevented that?', 'What if I hadn't gotten up a hour early to do postcards', etc).

Being ill: the past several years of my life are not what I would have chosen but are years, experiences and interactions which have given me gifts of understanding. I understand things that I was too dense to perceive other ways. Experience is a hard teacher, even when you WANT to learn. And against popular belief, there are still many for whom experience teaches little (this would be the time for personal introspection on actions and habits repeated when a) knowing the outcome and b) promising self it would not happen again).

Until lately, I never understood all the sacrifices that caregivers make, or those who help and support those who are chronically ill. Now I do. Seeing how hard it is, and how much of a full time wake till sleep job it is, but also learning how Chronic illness can be that way too. Sure, I visited more than most, or did ‘acts of kindness’ but I wasn’t THERE, I didn’t step up and commit the way Linda, Cheryl and others have for me. And while I had Chronic illnesses, since I hid them, and 'passed', I figured that most did the same and that is what Chronic illness was like. Learning the dozens of different impairments, chronic illnesses and how something like IBS can threaten work, social life, personal comfort, mental health and so much more taught me that while I can't walk/wheel in someone else's shoes, I can try and understand and appreciate what it is like to have to do that.

I'm supposed to say I've lived a life without regrets. Which always seemed to me to be an admission that I am too dumb to figure out that I always have more to learn. And becoming Impaired, Chronically and then Degeneratively ill has show me that when it comes to knowing that I don't know, there are grand canyons of personal ignorance I am now aware of. I do have regrets in my life, things I would do over. One of these is that I should have done more. I have tried to change that, as was possible, to be a person who was there and aware, as much as I could, over the last few years. But having a degenerating illness is very distracting to the best of intentions. And I think that is why I sacrificed so much physically for the sending postcards and gifts: because love needed to be tangible, as long as that was humanly possible. Hoping that someone out there thinks about you, and KNOWING because you have the evidence in your hand are very different things. Still, I was not and have not been there all the times I wanted to be. I apologize.

This reminds me, if you have sent a gift (for my birthday), please make sure to let me know who you are (you anon’s too!) and when your birthday comes around. Even if you have done it a previous year, can you try again and remind me, so I can try to get a fresh start on that. Because with a name and birthday, I can at the very least get to writing some thank you notes, and hopefully through scrape and slide, send out gifts till the autumn (I have a calendar already prepared for names and dates).

While my life is solitary, and my memory a bit like having every day put in the blender on 'frappe' (I might have bits of it, but often not the parts I want).
I still think, and watching good films helps that, good series too. I get some from the UK, from, and one advantage of frontal lobe damage is everything isn't just surround sound, it is as if I live it, and I dream of it that night too. So getting good films (like The City of Life and Death, the Chinese film on the rape of Nanking I watched yesterday, then went and read for an hour or two on details I noticed) they help me open up mental pathways, and connect language centers, which slows dementia, and aids thinking. And I think we can all agree that the world needs more thinking in it, because that is part of what makes the world and all the points of view in it so very interesting. Did you know that a book read I can remember longer than a conversation, and a good mentally stimulating movie I remember longer than a bad and cliche' one (though those are good for the days I am 'half there').

So in this thinking, I've had two thoughts. 1) I think 'being there' changes a person, for the better, if they let it. While it isn't always pleasant, and often comes with grief and introspection, when you are THERE, as a friend, or relative, seeing someone daily, nightly, weekly, regularly who has a disease, chronic illness or terminal illness it makes you what we used to call, 'centered' or 'world wise'. To see and be with someone you care about during good times, bad times, and the very, very bad times, all those experiences rushing at you and having to reach past yourself to be there for them, to 'think like (fill in the name' in order to comfort them, it makes you deeper, more able to handle the little annoyances (or less, if you have been up all night getting pills and comfort and just holding a hand with someone).

People don't like change, and often fear it. But I think it will make you stronger, and more sure, because you realize how little you know, how panicked you became in this or that situation during care giving, and yet, you came out the other side. And like how a bad patch in a relationship you fight for takes away that fear that the connection might disappear, so this gives you the knowledge that you are stronger than you thought you might be.

Also, surviving those hard times as a person with a chronic illness or life shortening illness also lets you know how great it feels to have days where you don't worry about being too weak to breathe if you fall asleep. As for me, I've accept as normal life a level far below what I thought was humanly possible, or requiring so much assistance, I used to pity those like me now. Shame on me. Don't pity me, but get to know me first, then you can feel what you want, because you will actually 'see' me, and I you (not just some tragic story told for various reasons).

I'm looking forward for the paperwork and visits for the palliative program to be done. The program sounds just what Linda and I really need right now. It is here because of cancer. That is where the volunteers and staff learned about pain, and how disease looks different with each person, and so the needs are different too. I will owe the thousands of people before me. They were the ones who shaped the palliative program by using it and trained the staff by showing what did and didn't work.

2) We all have a past. People focus so much on the future, and I do too that I forget and assume that the present is all there is. But reading and watching and thinking, something I realize as a writer and a person during this disease process. We may not know our future but we all have a past. I met someone this week who did the 60 km challenge for cancer in Vancouver (because I don’t think Victoria has one). She had cancer, and because of that, she knew what her friend needed when her friend had cancer. Because of her past, she did the 60 km challenge. Her past gave her insight, and motivation and made her a better friend.

Cancer is a disease which make a person feel helpless. The lump they find, or the cyst, or whatever it is they test, just them saying it makes me feel helpless. The waiting to find out makes me feel helpless. Much less finding out your own body cells are changing, and destroying you, that is frustrating and helpless. Cancer gives bad choices, where the 'best' choice is to cut parts of you off, or to be willing take what we are warned our whole life to avoid. Those radiation signs, those toxic signs which are put up as a warning we now have as part of our schedule. They put on a tattoo so they can hit the body with radiation, enough to kill right down to the very cells. Or, they come out with special gloves, carrying a bag of liquid so toxic, they measure it out in drops: Chemo. People use the word like it is just a word, but the smell of it causes many to start vomiting, just in the body memory of what is to come, for many others, the night before is sleepless. You learn to cry and scream in the parking lot, to cry and tell them to do it anyway, becuase while you know these chemicals can kill you, and might, they also might kill those cancer cells first. But it weakens you, and changes you, leaving you fatigued (fatigue, I was told, was when a fire alarm goes off and you are too tired to move - I know that feeling) at best. It gives you tremors, and neuropathy, makes the bones soft, or eats through them, you get thin, and your hair falls out, and eyebrows, and arm hair and sometimes fingernails too, or they stop growing. It is like you are dead, but not dead. We do all this, because living is better than dying, but it sure leaves people feeling helpless, because in the end, the cancer may STILL not die, not enough, and you will die instead.

Lance Armstrong, is perhaps the greatest cyclist who ever lived, certainly the most determined. He is the Winner of the Triple Crown twice, a ride in the Olympics and two arms full of trophies before winning the Tour de France seven times in a row, a record which will likely stand for decades. He is also a man with a past. In 1996 he was diagnosed with testicular cancer which had spread to his brain and lungs.

Lance had operations, chemo, and more operations including on his brain which removed necrosis (dead tissue) and cancer. In 1998 he went into remission and went back to cycling. Two years, 600+ days where there was no end to the tunnel of pain, chemo, operations, specialist, tests, treatments and side effects. But he came out the other side. And then he started to rebuild his body. He spent two years, with a cycle machine and breathing regulator to increase his maximum heart-rate, something considered medically impossible. And from 1999 up to and including 2005 he won the Tour de France, the most grueling and famous of cycle races. Everyone has a past.

In 1997 he founded Lance Armstrong Foundation for Cancer, and in 2006 he ran his first marathon, the NYC marathon, He wanted to run under 3 hours, the qualifying time to run the Boston Marathon. With a pace team, he was still above an average needed to make the three hours for the 26.2 miles when he was at mile marker 21. He said later that compared to the Tour de France, the marathon was “without a doubt the hardest physical thing I have ever done.” Using the television camera that were always watching him in order to motivate him through, to never slow, he pushed the last five miles and finished at 2:59:36. He made it, qualified for the Boston Marathon by 24 seconds and went on to run that too. Lance's finish in NYC raised $600,000 for LiveStrong, the Nike assisted yellow braclet campaign for fundraising for cancer.

On July 23-24 this year Laura Anderson is going to make the 60km walk for women’s cancer. Her page which outlines why she is doing it here. 60km is no small distance. I remember hiking, every day for 8-12 hours, and how after a month, I was really, really happy. Why? Because though I had lost all my toenails, and 20-30 lbs of wieght, I had finally gone father than a car could drive in 12 hours. I think we forget how hard things are sometimes, until we try. 60km is a hard walk. Laura has a lot of training done and a lot of training ahead of her. And it will hurt. And the day after will hurt, and the day after that.

I think the distance, about a marathon and a half (remember, Lance went from his Tour De France training and then trained UP for his marathon – most people train months for a 10K) is supposed to be hard. It is supposed to hurt, because Cancer is big and disruptive and takes determination, dedication and loved ones to get through. The 60km reminds people of that, reminds us what our friends, our family, our loved ones went through during those months, or years with Cancer. Laura is working now to get ready to hurt so people are educated on Cancer, and money is raised for treatment, for early detection machines. I recommend helping her.

I used to run marathons, to run all the time, for several years, the entire time I was first seeing Linda it was running here, round and round the track, and running round my routes and home again. Eventually Linda ran too, and the 10K in Cardiff and the 5K for breast cancer. I know that there are people who want to push things are hard as it is possible, and the majority who do not. I think it is not typical to want to swim or run until you want to vomit, or just lay down, and do that every day. I applaud those who do the 60 km walk, because it is done out of love, a love that is willing to suffer.

I push myself because it is who I am, and when I was 8 or 9, I wanted to know how far a mile was in distance around our house, because my parents wouldn’t let me run around the barrio of LA. And so I would run around and around and around the house, hundreds of times, as a kid, so I could run two or three miles. That was just who I was.

I showed the clip below to my care-worker today, and told her, “I like when they show the parts which are real.” She liked it because of that too, but wondered why people did that. You push yourself hard because something drives you, compels to compete, even with your own expectations. And also because unless you are willing to feel like that, to risk hurting and losing, or hurting so bad, pushing so bad, just to try harder, then competitive sports isn’t for you. But also, none of us know what we are capable of, until we have to. Some illness' are like a race that can never be won, but always be run.

Pain isn’t failure, and losing isn't failure, and quiting isn't, because we can always get up, or decide today to start anew. Only if you don't ever try do you fail. Think about this, the guy who throws up, the threw up twice more that marathon....but he also won it.
Don't count me out of the race either.


Neil said...

Beth, my dear lady; of course you were "there" as much as Linda, Cheryl and others have been. True, they were there to look after you, but you ARE "there." You are the one experiencing the pain, the symptoms, the near-deaths.

I've now had to watch what chemotherapy can do to a loved one. My Beloved lost a breast, she lost her butt-length hair, and she endured the soles of her feet peeling three times. She had to endure being unable to walk, sit, stand, or lie down comfortably - but for only 10 days. And she was lucky that it was so easy for her. She had to do the healing and hurting, the physiotherapy to get her arm moving after losing lymph nodes. I only had to watch her, and pray, and be supportive.

Beth, my dear friend, we do what we have to do for our loved ones. Please don't say that you haven't done as much as Linda. She hasn't lost her short-term memory, or regressed to school-girl age after a stroke, or spent hours in pain with the heart monitor trying to break the pens on the sides of the chart. She hasn't endured the muscle crams for hours on end. Linda has the adrenalin rush (and terror?) of knowing she's about to have to breathe for you, but that CAN'T be as bad as knowing you're about to stop breathing.

In short, caregivers make sacrifices, they can say they should have done more. But those needing care ARE doing more: they - YOU - are sacrificing everything including limbs, breasts, organs, and your lives.

I'm not saying Linda and Cheryl haven't suffered too; it's pure hell watching your wife, or your friend, suffer, praying for recovery, and bargaining with the universe in hopes that the disease will magically disappear. But we do it because we love you and because we want to keep keep loving you in the present tense.

Sorry, got carried away. Please have a happy birthday, Beth. Celebrate three birthdays this week if you wish; after all, you missed a whole bunch as a kid, by your own description.

As for Lance, he's amazing, even if he was doping (not gonna even try to figure it out). I've tried to spin my bicycle pedals at a cadence of 132rpm. I could barely get to that speed, let alone sustain it for minutes at a time.

What my Beloved didn't lose is her sense of humour (a month after surgery, she attended a costume party as the queen of the Amazons), or her wonderful laugh. I do everything I can to make her laugh at least once a day.

What you haven't lost is your ability to make people think, your ability with words. Even with lost brain-power, you're still a far better writer than almost anyone I can think of.

Now, go forth and celebrate!

Love and zen hugs,

Vanessa said...

Hi Beth. :) I've been sick but wanted to tell you happy birthday and that we love you. I'm glad you ar still in the race. :)

Noisyworld said...

Happy Birthday for yesterday, today, tomorrow and for as long as you like, you definitely deserve to catch up on them :)

You were there for other people, sometimes it really helps to have people who only know the good days as they have high (but not too high) expectations and that's what makes us try to go out and be part of the real world.

Elizabeth McClung said...


Noisyworld: It is true that expectations push, self expectations, others expectations - I will think about what you say. Getting out in the the world, getting pushed out, I would like. I used to go out every day, regardless. I try to go out two times a week now. It is easier hopefully as finances change and there is somewhere to go: starbucks, pic a flic, library, etc (being unconscious combined with memory loss can rack up the library fines!). But to have someone who 'gets it' and accepts it - that helps. There are now two groups of people, those who are too impatient for my damaged tongue, jaw muscles and brain and finish sentences for me (some only let me get as far as 2 or 3 words) and those who let me talk the whole way. In being with others, I think the gift is giving a choice of meeting, even if it doesn't always happen. As anything from depression to chronic illness can make us a person people stop giving the choice of a meeting out with.

Wendryn said...

I've had several people I love fight cancer and, eventually, lose. There isn't much else to say about that, I guess, but I appreciate everyone who can fight and everyone who helps as much as they can in so many ways.

You're living through this and still living more than some people I know. You are there for a lot of people, and your effect is felt in a lot of ways, through postcards you inspired other people to send.

"love needed to be tangible, as long as that was humanly possible. Hoping that someone out there thinks about you, and KNOWING because you have the evidence in your hand are very different things."
You have been there. You have supported people who needed it. You have made life better for a lot of people. Please don't forget that.

Baba Yaga said...

You have such wonderful clarity:

I'm supposed to say I've lived a life without regrets. Which always seemed to me to be an admission that I am too dumb to figure out that I always have more to learn.

Thank you. ;-)

You are such a harsh judge of yourself: you've been there under hard conditions, and not flinched away. If you didn't do it sooner - well, the world would certainly be better if people did, but it's an understanding to be learned, and even, much as I usually grump at the idea, a skill to be learned, and leaning takes time. If one's lucky, one gets good teachers.

Your emphasis, your lessons, and mine differ. I think that just as much as, perhaps, we forget how hard things can be, sometimes we forget how easy things can be, because we're so busy trying harder instead of trying differently, or allowing things to be as they are. (Some things, clearly, one should *not* allow to be as they are, uncontested.) I think that just as much as we're lazy and don't bother, sometimes we persist in doing things the hard way because we think it should be hard, rather than finding the elegant way, where more effect is gained through more willingness to respect the limits of the organism.

I think both views are valid, and, put together, probably more so yet; I do wonder how much our differences in emphasis are temperamental and how much circumstantial - and how accurate it is to distinguish between temperament and circumstance anyway!

You're right, too, that it is not typical to want to swim or run until you want to vomit - and, I think, probably just as well!! I can be over-literal, you see. Being a little less literal, you are entirely corrrect: there must be things one values enough to sacrifice for them...

... I also see that much 'sacrifice' looks like doing it the hard way because of some notion that it isn't real if it isn't hard. It's something embedded deeply in my thinking, that what comes naturally doesn't count, and that suffering - not effectiveness - is the true measure of effort: my battle has more been to learn to find the gentler paths to the same destination, to achieve more by less exertion.

You haven't had gentle paths, my dear, and your battles have been hard ones. You battle valiantly, and there's no way I'd have the sheer cheek to count you out! I only hope that if time comes to learn that lesson too (life has a strange sense of humour in the lessons it sends - I dare not try to predict!), I do it half so well as you.

If your body fails to co-operate, we will celebrate your birthday when you can. And unbirthdays, too.

Please excuse if I do not fulfil your request, however: I don't have birthdays if I can possibly help it. However, the hawthorn's in blossom, the hedgerows are green and bridal white, and SAD is put away for a while. Care to celebrate that with me, instead?

cheryl g said...

Experience IS a hard teacher and often not a fair one but I think the life lessons I have learned are too valuable to wish my life had been different. Besides, that’s what life is… taking what you are given and doing the best you can with it including making mistakes but learning from those mistakes.

“I'm supposed to say I've lived a life without regrets. Which always seemed to me to be an admission that I am too dumb to figure out that I always have more to learn.”

Thank you! That statement sums up something I haven’t really been able to put into words since I had to read Elizabeth Kubler-Ross in med school. If you have lived at all rather than cloistering yourself into a sterile existence I don’t see how you can say you have lived with no regrets.

You have visited more than most, did ‘acts of kindness’, reached out to let others no you care and that is a gift you have given which is beyond price. I too feel like I should be doing more and I push to do that to the detriment of my own well-being. Perhaps, that’s why I so easily recognize that trait in you. I am slowly learning that pushing to do more often results in long periods where I do less because of my body’s need to rest and heal in spite of my will.

I also believe “being there” changes a person for the better. It isn’t always easy but it is ultimately very rewarding. Change is scary and sometimes moving into the change slowly helps and sometimes it’s like swim lessons as a kid. You know the pool is going to be cold so you just jump in and try until it feels OK.

“Pain isn’t failure, and losing isn't failure, and quitting isn't, because we can always get up, or decide today to start anew. Only if you don't ever try do you fail.”

That is so very true. I for one, will never count you out of the race!

Anonymous said...

Actually the Boston Qualifying time is 3:10:59, so Armstrong "easily" beat the qualifying time. :)