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 Amazon.co.uk, 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.
5 hours ago