People say sex and death make a good pair; for me, it is only when I am getting the first and someone else is getting the second. Or rather, yesterday morning I woke to find the right half of my body paralyzed. I was surprised and irritated because how exactly was I going to get to the bathroom to take a pee? But also not so surprised at all. Like remembering a car accident, over the last few days, I had been replaying over in my mind that moment a few days before when I realized my right eye had become partially blind. The paralysis? After several hours of sleep, except for some residual numbness in my arm and hand, the nerves on the right side of my body came back…this time. I have to talk about the word now that no one except my doctor has ever used around me the last few months: Dying. Yes, there is a decent chance that whatever I have will kill me, and not in the nice going-to-sleep with a drug overdose I used to fantasize about but rather a horrific and painful death. Or as my doctor said to me three days ago, “Everyone dies.” I replied, “Yes, but some of us prefer it not to be so quickly!”
My present and future are this: Either I am dying or I could get better or things could remain the same. Next week they are going to do a map of my eye so that in a few months they can see what vascular and/or neurological degeneration has occurred. For some reason, I don’t think things will magically go back to being as they were (email me if you need me to break that down for you in a blow by blow). No one more than I would love to find out it has all been a horrid mistake or a peanut allergy issue, but I think that is very unlikely. Two nights ago we talked to the son of a man who is “classified” as having MS, simply because after nine years, with a creeping paralysis moving up from his feet which has now reached his abdomen, the doctor’s still don’t know what it is. We told the son how we were still in the first six months and some of the funny, “ha-ha”, things doctors had diagnosed me with like heavy metal toxic poisoning. It turns out that his father’s doctors had thought that one up too and so removed all of the fillings in his teeth. A year later they admitted it wasn’t heavy metal poisoning. “Ha ha.” And medicine is a “science.”
So yesterday post-paralysis I wore a lot of Victoria Secret. I am not sure why Victoria Secret is my armor. Maybe because I need to reaffirm how I want to see myself when I DO have control over my body. Maybe because Victoria Secret is an expensive wanton feminine luxury and sometimes you do want feel sexy all for yourself. Maybe we just do what we need to do to go on without knowing why we do it.
A couple days ago my holter heart tests came back, ten weeks since the previous one. The short story is that my heart is getting more out of control: 6-9% worse. I can still stand, but a few minutes of light footwork in the evening caused 25 minutes of tachycardia. My doctor who used to be a cardiologist specialist said, "It seems evenings are bad for you." Yeah, good thing they only come every day.
Even with a slightly numb right hand I went for a 5.5K wheel along the coast, racing Linda as she jogged (she won....and hills suck!). No, I’m not just randomly self destructive (okay, I am, but not in this case). I raced because my body can't deal with heat. The reason it can’t deal with heat is because my body and heart are no longer pumping blood to the micro-capillary system. Simply: I don’t sweat anymore. My body is sacrificing what it thinks it needs to survive...for the short term. However, the longer it does this, the more and more easily I go into shock, have heart SVT’s and fever. So I have to force/shock my body backing into using the micro-capillary system a couple times a week if I want my system to last long enough for more tests to be run on it and if I want to stay out of the hospital. I have to push myself hard enough to sweat, even when doing so will lay me up a few days a week.
I am suffering. Nothing can stop that though industrial pain killers help. But that is how things are and no magic pill can make things “as it was”: I cannot be an athlete; I cannot determine how many hours I will be awake on any given day or how much pain or medical problems I will have. Simply getting my assisted breathing every day costs Linda money (my bottled oxygen consumption has doubled, so much they deliver lots of bottles to my door weekly), to enable me to move independently costs Linda money, there is money for pain and other medication, money for home aids, money for taxi’s to go to doctor’s appointments, hospital visits, tests, time and money to help me eat and drink and help me put on clothes. Money so I can stay in the apartment instead of going to the hospital. And money to finance whatever scheme I come up with to motivate me another day, another week. These are costs unlikely that I will be able to pay back. Linda accepts that, so I must try to, and go on.
I found a pleasant use for my purse from Demonia, which was too beautiful with its velvet interior to simply dump my junk in. So a bear was volunteered to be “vampire bear.” Now, when I go out, I put my money in his paws so when I pick up a Mocha at Starbucks, I prop up the coffin on the counter, lift the latch to let the lid swing open (creak!) and take the money from his paws. It helps me convince people I am friendly and well adjusted. “What’s in the coffin?” I was asked as I rolled in one store.
“A friend,” I told them.
Once I could see again last week and the fever was gone Linda and I went clubbing; it was 90’s night at a club called Lucky’s (a girl who does go-go dancing atop a speaker for the club recommended it). This was my first Canadian club experience. I couldn’t wear my special “club” outfit I ordered for my birthday, because my new chair with the clothing guards is being held in Canadian Customs (due to the pornographic nature of wheelchairs, I am sure, though the box from Slash N Burn and the one with skulls on it from ARSENIC came through fine). It is this PVC gloss full length skirt and body cincher with PVC gloss bikini bra as well. I, being the modest PVC cincher type wear my Lip Service hoodie with it. So that being out I had to go with this “make do” Tripp corset and armwarmer set with thigh high tights with bows and my blue knee high stomper boots from Demonia. Wheeling down to the club a woman came out of a restaurant, looked at me and said, “Wow, Hot!” which seemed what I was going for. As for clubbing, once we took the floor, everyone else left, which is fine, as we practiced things like the wheelchair yo-yo (Linda pushes me off, I use the momentum to do a very fast spin using just body lean and then roll back to her), also we did a strange version of the Jive where I ended up whipping around the entire club floor holding onto Linda at the centre as my axis, while I used my free hand to pull wall bars, bar tops or anything I could get my hands on to go faster and faster before doing a spin out. It was pretty fun, particularly after a long island ice tea. Amazing how we could do stuff like that in front of 60 people and not have a single person watching; indeed studiously NOT watching us. Too bad because after being laid up, post-fever and facing my own mortality I was pretty horny and after a few of those long island ice teas was ready to make out with anyone including relatives. However, my only offer came from a guy when I was waiting in line for the loo, which is one of the few times a line falls dead with me (I guess hearing “You’re pretty sexy” from an EMT personnel loading me into the ambulance or from someone holding my hair while I vomit would be my two other “no go” times).
So you see, I am not exactly lying down with a lily on my chest. Though at times the pain, the hours under the oxygen mask, my entire consciousness reduced to Linda’s hold on my hand makes the days disappear quicker than I would like. Let’s face it; this isn’t the life I wanted or choose, this wasn't in the pamphlet: I never smoke, I never did drugs, I rarely drink, I exercised, I spent years (almost decades) in education and degrees. I don’t want to accept even the possibility that I won’t hold another job, or that I might look back on these months as “the good days.” I didn’t get my shit in order to go down like this. But that's the way it is. So I cried this week for the first time in months. I haven’t give up; I meet an specialist internist this week about my adrenal and thyroid, I have a 24 oxygen test. But I can’t fight for “survival” anymore; because that is out of my hands. I can fight to remain and claim an identity for myself outside of this disease. Some days that will be rock climbing only using my arms, an inch at a time; some times that will be corsets and kitty cat ears. And some times it will be morbid jokes told around a breathing mask. An experience like this strips and rips away your masks, your dreams, your futures, and your identities whether you want it to or not. Stripped down, I am still a fighter, even when no one understand that looking reality in the face can be just as much of a fight as spending two hours to shower, eat and dress so you can go outside for 40 minutes before going back to sleep. And sometimes fighting is looking at reality in the face and ignoring it anyway.
Yesterday Linda and I purchased our medical supplies. First an indoor portable air conditioner so that we can seal off a room and stop me going into heat stroke during the next three to four months. And second was a wacking big purchase at the Victoria Secret online sale, including a whole series of VS skull and crossbone bikini’s (in three different colours). Once those arrive, I can finally wear those mini skirts in the wheelchair; I'll be matching from my headband down (and ready for those EMT guys and girls!).
2 hours ago