I am a disease survivor. I had always rejected the word “survivor” because it seemed to me that people were trying to pretend that something was over when the effects lingered on, had changed them. Or they were trying to tell themselves or me that we had won a fight that wasn’t even about us. How can you win a fight against a cell which doesn’t die when it is supposed to and replicates? How can I fight against my own autoimmune system which protects me (and is now killing me).
When therapists and others would say that I was a sexual abuse survivor it would make me angry, “They went away!” I would almost shout in anger. I know what surviving IS, what doing what is necessary to pay the rent that month IS, or what living homeless in the woods is like because you don’t HAVE the money. That is survival. A guy or guys leaving your body because they are bored isn’t an indication of MY survival, at least to me. They could have kept torturing and fucking me OR they could have cut my throat OR they could have walked away to find someone else.
So I didn’t get it. I wasn’t saying other people weren’t survivors, I was just saying I wasn’t. Though I did have a problem when we label things with fight words when they are a part of us; you won the war by cutting off part of yourself, and that makes you a survivor, a victor against….your own body?
I am sorry if that offends anyone, which is not my intention, but I need to show how I think to show the change in thinking. I will still probably start laughing if someone starts referring to themselves as a “flu survivor.”
I did the Terry Fox 10K because Terry Fox has always been my hero ever since childhood. It was a beautiful day, perfect cool sunshine by the ocean. At the race they played a clip which would make you think Terry Fox started his run in Ontario instead of 1500 miles to the east. The days of sleeping in the van, eating out of the van, sleeping in the van. How they only got a hotel room was because the owner of the hotel’s son had cancer. How he was splashed, honked at, yelled at and almost hit by cars. Terry Fox was a nut. And every country at some time has their lovable nut. He happens to be Canada’s. And he was a lovable nut who had the official support of the Cancer Society of Canada. And he wanted to raise $1 from each person in Canada for Cancer by doing his thing, which was running across Canada. As I sat there in my chair and they played the tape it said, “When Terry asked to be taken to the hospital, the Run of Hope was over.” And I vehemently said, “It was NOT over.” Which got a few people looking at me. But it is a very important point, one which the people who do all the fundraising didn’t get. Terry was asked by many famous people if they could continue his run and he always replied, “I WILL go back and run.” Or “My run is not over.” Even in the hospital he maintained that he would go back and run again.
I couldn’t put it in words at the time but doing the Terry Fox run/wheel/walk with my friend who has crushed ankle and vertebrae enlightened me. I started the race beside a teenage girl and her team, she had what I believed was childhood Leukemia, and during the race gave the nod to a guy in his wheelchair. Racing I passed a man with a plain grip/hook hand prosthetic, and another with crutches, who had an amputation so high up the leg it was to the hip, who took over an hour on plain hospital crutches to do the 5K. He told me as I went by “ya got to use the momentum.”
There was in the eyes of people there some sort of understanding. We knew each other. We gave each other the nod. Yet what was it that we understood? It was the connection of someone who had been in the same war. The nod of people with the same attitude; which like Terry Fox, that they probably shouldn’t be here, like the woman holding on to her wheeled walker. They probably would, if they asked, be advised against ‘stressing themselves unnecessarily, particularly after what they had been through.’ They know the voices of the people who will never get it, who only see a 5K or a 10K as stress against a weakened system or strain on a healing amputation. Like running 22 miles a day and sleeping in the same stinking van.
See, I was putting the wrong emphasis. I thought people were (and some are) saying, I am a SURVIVOR. Well that day, the people mixed among those who were raising money were people whose life and attitude or who knew people who chose to state with their choices and actions, I AM a survivor. What is the difference? The first is the statement of someone who feels that what they feared or which attacked them is long gone, never to rise again. They are the victors, and the enemy is vanquished, they are SURVIVORS.
Me? I’ve been broken too many times to ever say it like that. And over the last few years I learned that it isn’t the disease you have, it is the way you live it. Neither I nor any of the other people whose recent or remembered experiences with cancer or other diseases who were there that day believed they had won, or that cancer would never return. They were not there to be plucky, or inspirational or courageous. And neither was Terry Fox. One of my favorite quotes from his is when he asked publicly for able bodied people to NOT run with him because while they were jogging, “I am running as FAST as I CAN.” That is what the man on crutches and I both recognized in each other, that neither of us deserved pity, or sympathy nor were we courageous, we recognized that the other was simply going as FAST as they COULD.
I AM a survivor. I AM because I choose to live my life in a way that gives me the best chance of survival but also because I am the one determining how to live, not my disease. At the Terry Fox run/walk/wheel they put a note on my back: "Pour water over and put in a cool place; do NOT heat and call....." With some help from my friends I will continue to determine how to live, and live as large as possible until I die: whether that is doing a little sexy dress up photo shoot until I have to be carried inside or trying for the last time possible this year to visit what I had set my mind to visit without even reading about it: the Hoh Rainforest. I wheel outside even though I cry from the pain; I exercise though I can’t sleep (from the pain) because I AM a survivor. And this society is not set up, not particularly ready for survivors. That is why the Terry Fox 1K/5K/10K is so important, because as people on bikes and children on tricycles go next to people walking with dogs, people in wheelchairs, on rollerblades, on horses, jogging, walking, with walking sticks, with frequent breaks, however they choose to reach their goal. We started at Mile Zero, the goal that Terry Fox never reached. But that’s what the Terry Fox run/walk/wheel was for me, an event to spread the word, once we accept that people have different impairments and different ways of reaching their goals, can interact together, can enjoy an event together.
And for me, I recognized a part of myself in seeing it in the mirrors of others faces. I AM a survivor because I choose how I will survive, how each day, week, month and goal will be spent, not the worriers and the non-sayers. I have been in the belly of the Beast and I have the beast inside of me. That is what every one of those faces said, they said, they KNOW that cancer or other disease will come back, that they live WITH that fact, and it is their living which marks them as a survivor.
Today, meeting with a “pain specialist” who told me both to “live within my pain” and didn’t GET IT, he didn’t understand my level of pain; not believing that I hallucinate from my intensity of pain. Indeed, he stated that he didn’t want to give me something like morphine (which would take my pain away) because it might give me constipation and I must have enough of that using the wheelchair. Fuck doc, removing all my pain for CONSTIPATION? I will take that trade any day. He said this exercise thing had to go, that I needed to sort of just sit at home and “learn to live within my pain.” I asked if he realized I had a degenerative terminal disease and he did. He said with a stern expression, “Those 10K’s definitely have to go!” and then talked about cutting badminton in half if not less, though I explained three times about how if I do NOT exercise, it will kill me faster. I just smiled at him while I determined to FIND a 10K this weekend and ENTER. He thought he was getting me ready for surviving what was coming. He wasn’t one of those who know that the quickest way to kill me was to kill my dreams. That what makes me go from seizures to badminton (or type, as I did yesterday with thick gloves on because four fingers had frostbite – and yes, I know that’s not logical, welcome to autonomic failure land).
I am not a person who puts themselves forward to represent a society or organization. I do wish people would fund things like depression which kills one person every seven minutes in the US, and I wish there WAS a 10K I could do to fund stopping sexual abuse (if you think the breast cancer numbers are huge, wait till the stigma of this race falls off and people show up). Yes, I want to raise money for stopping sexual abuse. I want those who are under care not to have the threat of receiving emotional or physical abuse and/or neglect and have no one care. But I believe these are things that anyone innately should be working toward, a world that makes only the best logical and emotional sense. So as odd and as selfish as it seems, I struggle to remain a survivor because then I can be there for people having a hard time, be someone who they can email or talk to, can be a person to send a card or gift.
For my races, I needed a shirt for people helping me to see each other easily. Laura sent these shirts, for those who help me at an event. This is the symbol on the back.
The shirts and seeing Linda and Cheryl and thinking of Laura I remember why I survive. Because I can reach out and do what so many seem to have forgotten, that it is not large organizations which make a difference to an individual, but rather another individual. Those t-shirts are living proof. I did the 10K becuase of three people, individual people who reached out. Linda and Cheryl have created a blog, if you want to look at it, called, A Girl's Gotta Fly.
Today, I had two specialists who could have made a difference. Both failed. I don’t want to fail, and though I have little income, little strength, and other significant obstacles, I want to be there for you. I want to care about you, because that is what was given as a gift to me, and is, almost every day. You want a post card, you know what to do, haven't got a postcard in a while, let me know (geez, I HAVE brain damage, so give me a hint now and then, okay, I'm not ignoring you).
If I had to make an event, I would make it like Terry Fox did, as inclusive as possible, with no winners, but equal participants. We were there with different mobility’s, different motivations and that was possible because one person inspired another person and where Terry Fox was not an organizer, the head of the Four Seasons was. He got the Marathon of Hope run/walk/wheels organized and keeps the dream alive. What dream? That if you want to do it, just because other people don’t understand that, or care, you still can. I was at that 10K not because I could get myself there by myself but becuase another couple people I knew could. And they wanted to keep my dream alive. So if I am here next year, I will do it again, whether it is in a hospital bed with a motor attached; because I AM a survivor, dying, yes, alone, no, a survivor.
15 hours ago