Yesterday after my limited boxing class my coach Ian and I had a conversation on why exactly I want to do an exhibition fight. He wanted to know how old I was (ohhhh, dude, you don’t date much do you?) and told me that doing this wouldn’t bring my youth back (‘bring my youth back’ – seriously, have you EVER dated?) and “prove” something about myself. I kind of wanted to wack him on the side with a “get over that male thinking.” Except Ian can easily avoid any wack on the head I try to give him (He has skary boxing skills; I don’t care how good you are, Ian can hit/tap you in any part of your body he wants in three seconds). I tried to explain to Ian that trainers and articles talk about people with disabilities and people in wheelchairs turning boxing into a joke. They say that women sully the sport and the disabled shouldn’t be allowed. If Boxing is a real sport, and I believe that it is, then it can be changed, it can be adapted so that almost anyone can participate and benefit from it. That’s why I want a two-minute exhibition bout: because boxing has made me an equally respected athlete in a training gym within a city where people don’t treat me as an equal outside that gym.
Ian said that he had a book that had 29 values to live by. So I asked him, “Does it have 'sacrifice'?” He paused a minute, “No it doesn’t. But what I was going to say is I have a 30th value; which I use sometimes called ‘fuck em!’” I told him I knew that value well.
I’ve been told by more than one person this week that if I have the energy to ‘keep a blog’ that I can turn my energy to “useful” things; things which might make a difference in the world, or things like advocacy work. These people are to use the vernacular, “knuckleheads.” For example, they don't bother to ask first how much advocacy I do on a daily basis; nor do they realize the amount of effort it requires to write and send a letter (Canada requires you to go and post it). They don’t realize that the tenet of advocacy; consistency is the very thing which is stolen away first by a chronic condition. Or as Linda puts it, "Why are the people who are disabled or SICK the people who should be doing the advocacy? Why not them?"
There is also some misunderstanding that because I write about doing stuff, I am full of energy and spend most of my time jaunting here and there. Or that because I go places or do things, it implies that I feel good or heathly; or feel good enough for a long enough period that I decide like able bodied people to "use up" some time. No. I go places BECAUSE I feel crap. My heart was erratic for hours yesterday, I was dizzy for several hours, I couldn’t sit up in the evening, and was having an emotional meltdown. So by 7:50 p.m., I felt like one of those animals in a Disney movie that drags itself off into the woods before they send the 12 year old to go and blow out it’s brains “for mercy.” (Or "To make a man of you son." WTF?)
I knew yesterday that if I did not get pushed up to the gym, and did not try at least to hit the heavy bags then I would get weaker the next day, the following day, and the following week. So I went, and I hit the bag, I tried to hit Ian. Then I came home and wrote a blog because I have determined, for me, that this keyboard is my beacon, my lighthouse, my telegraph wire. So every night I write out different subjects and essays to post which all have the same subtitle: “Here I am, I’m alive; I’m alive and I haven’t been silenced yet.”
This is a 'Hey!' for all you mothers, you dads, you people with Chronic conditions, you friends and family and lovers of those with health issues; you know that often there are not good choices. We don’t get to choose between ice cream and radiation treatment. There is only going on, and facing what has to be faced until it cannot be faced anymore and trying not let the inane and the medicos and the rest of the shit hanging overhead drive you insane. At least that is what I try to do and part of that is making what choices I can. So I may not have control over my heart or digestive system, the right side of body, but when my clock hits midnight, I will have posted. Yesterday, I was on codine AND tramadol and my fingers still hurt, but when midnight came, I won. I’m a lucky person; not many of us can go to bed at night secure in our knowledge of victory.
Tonight one of my care workers wanted to know why, “You have SO MANY skulls.” I told her they were cool. She told me that they weren’t, that they were “unhealthy.” I don’t know how to explain the irony to someone who lives a life on her side of the veil. That right now I have more in common with a particular 16 year old girl than with her. This is a girl who got childhood leukemia; wasn’t expected to live but did. Her body will likely never completely recover. She used/uses a wheelchair. She doesn’t get her classmates who read fashion mags and who seem just a bit shallow (a little?). Her parent is worried; she is friends with the ‘wild crowd.’ Really? Go figure. She lay in bed at night and realized that she would never have a boyfriend/girlfriend; wouldn’t have sex; wouldn’t ride on a motorcycle; all those night thoughts. And now she is back in alien territory where girls talk about mascara color and which purse is to ‘die for!’ And my home care worker can't see why I have skulls on everything I own? Like Jimmy Cricket said, “When you are afraid, get your friend to whistle.....and if he isn’t ripped apart accompanied by snarling noises, you will feel a LOT better!”
I am watching the documentary The Bridge, which was going to be about a year in the life of the San Francisco Golden Gate Bridge. Only the film captured SO many suicides they decided to interview the people who saw the suicides, the family, friends, in order to get a picture of these people who routinely kill themselves jumping off the Golden Gate Bridge. I can’t say it is a “cheery” film but fascinating. At one point I turned it off because there was a bit too much of “hi mom!” going on – and decided I didn’t want to spend too much time ruminating on which family members might be happier if I topped myself. Linda by the by, is NOT excited about me watching this ("Watch something cheery, like that crime show you like about rapes...." - That's Law and Order Special Victim's Unit - see, there are always sexual abuse, incset and rape (nothing unusual) but on the show the people are CAUGHT and PUT IN PRISON - every 45 minutes they catch another one and put them in prison - I LOVE that show). Only the fact that Victoria has no decent bridges I think lets her allow my viewing The Bridge. I'm glad, there just aren’t really a lot of good documentaries on suicide (a few good books about them though...email me!).
Well, I’m out of time, and that seems like just the right cheery Xmas note to end this post on. No, seriously, I understand wanting and needing to be anything than ‘here’ – but hey, just think the narcisstic thoughts I do to keep myself going: “Wait a minute, I’m the star of this film...I mean world, and if I go, then the film ends. And what will all these little minor characters do? It will all be over! No, no......for all the little people.....the show must go on.” (I'm ready for my close-up now, Mr. DeMille!)
16 hours ago