I had a shock today. In the mirror I could see these two huge smudges on my face, right on my cheeks. I couldn’t figure it out because it wasn’t like I had been reading a newspaper (and then putting my hands on my face). And after rubbing a bit I realized that my face had lost so much weight that with the light above, the hollows under my cheek bones were creating a fist sized pocket of shade. Actually not just under the bathroom light but in the hallway, in most lights, all lights. And my collarbones which seemed to GROW (it was explained that they didn't grow, they stuck out more becuase the skin under them has shrunk) are sticking out in sharp relief. And to add insult to injury, my little titties are heading toward itty bitty titties! I had lost weight, rather dramatically, in just over one week, eating the same as Linda.
It was another one of those moments, along with all the hair that I am losing that brings home that I am not just ill, I LOOK ill.
I asked Linda what she would think she she saw someone at work with my hair loss. She said, “I would assume they had cancer or some other serious disease, maybe if I was rude I would ask them about it, ask if they were on Chemo.”
So I guess one of the things giving me a youthful look is that I have lost 10-15 years of the little fat layers which fill out a woman’s face and cause the rounded cheeks and dimples.
And yet, looking in the mirror, talking to Linda about contacting the case manage to get the dietician to return, and what is next, how do I go about getting a tube put in if that is what I need, I said, “Because, dammit, I want to LIVE.”
I looked at her and said, “Honestly, I have put up with TOO MUCH SHIT to just go ahead and die.”
She said with a little laugh from being at ALL those tests and meetings from the last 16 months, “Yeah you really have.”
“So yeah, screw the dying.” I told her (can you tell my pain levels are less?).
I had several partial seizures during the night. My super painfull, super long day didn’t magically turn off when I slept, I guess but the seizures started. I actually woke up during one when my right leg and arm were going crazy, and then just sort of thought, “Oh well, that side never did cooperate” and tried to go back to sleep.
So today I cleaned out the blood from my nasal cavity (After a seizure there is always a pool of blood in my right nasal cavity, we assume it is from a spike in the blood pressure during the seizure). And I tried to come up with some reasons on why I am NOT going 'gentle into that good night' (seriously, that Lyrica is the BOMB, I can actually think positive thoughts which don’t include burning doctor’s cars). So here it is:
1) No one has ever done it! No one has ever survived my condition, which means that the longer I stay alive, the more “I win!” Admittedly there isn’t really any competition because I assume most people who have this want to live, but since no one else HAS managed beyond a couple years, then living is doing something considered impossible. And doing something considered impossible is what I specializing in attempting.
2) Once I decide to live, then I will have all my willpower to put toward breathing (which is troublesome), particularly if my pain is controlled, as I don’t have to keep trying to escape that (not breathing is a GREAT escape of pain).
For example yesterday, I actually slowed down and controlled some seizures. We were in the doctors office and I was on the brink. I could feel myself tottering, as I had lost control of my eyes, which were starting to twitch and my right hand was spasming and Linda says in this intense voice, “You CAN’T, if you go into seizure, we won’t get the Lyrica.” And somehow, I think through the pain or talking or whatever, I literally HELD ON and was on the brink, in what is called the “aura” for about 10 minutes (couldn’t control my hand so I sort of just held it with the left hand in a clamp).
Does this mean I can control seizures? No. It means that somehow, I was able to stay on the lip of a partial; most of them are like hitting a concrete wall at high speed. A grand mal is a "wham bam and 'no thank you' ma'am" which leaves me fingerspelling upon waking, "Where is that truck which hit me?"
This particular seizure was a combo of pain and fatigue and lack of oxygen and somehow it was one that builds (I have those, they start in a limb and spread, and spread, and spread).
Just in case you think I am some Will to Power dominatrix, I had a seizure this week and had use of two fingers and my thumb and DETERMINED that I was going to drag my body to where I wanted to go….with my two fingers and a thumb. Linda just watched with mild amusement as I pathetically am busy scratching on the carpet willing my body to be dragged. See, just because I can move the fingers, that doesn’t mean I have strength in them, nor does two fingers move an entire body, at least not mine.
3) I want to see Season three of TV series Bones. I promised Linda I would watch season three of Bones with her, and if I don’t live, then I won’t get to see the episodes of Season three with her when it come out on DVD (no TV remember!).
Admittedly, trying to live until the final season of Lost does make me want to STOP breathing (Does it EVER end? Does it ever answer any questions, like why is the Pirate ship there?), so I will focus on programs like Bones, Supernatural, and NCIS for motivation(I LOVE the women in NCIS, Abby the tech goth girl because when I watch with Linda I get to play the “I have that, it is from Demonia! And that is from Morbid Threads! I have that corset, I wore it last week!”; plus the most deadly person on the NSIC team is a woman! The female Mossad Agent David (really a female!) who they keep screaming at, “No, no, we want to keep this one ALIVE!”). Plus there is all the British TV murder series and Dexter, our cute sociopath who is sort of misunderstood (season 2 out soon!). Plus the fifth season of The Wire is coming out and looks to have the grit and reality of the first season. Yum! So yes, I am ready to be intellectually engaged, to be entertained above the normal (which now seems to be reality shows and beautiful people being constantly neurotic and talking about it…..so does that make LOST a reality show?).
4) Writing. I want to go back to what this blog was about, promoting me as an interesting person to read, but also a person who is a writer and a researcher. I want to write that Part II post about gender, social pressure and the results on children who chose gender variant activities. I want to write that book, get it published and go to a fucking book signing and see someone show up and say, “Hey, I really like your blog.” So I can say, “I’m really, really sorry, I honestly don’t swear that much in real life.
Let’s face it, if I WANTED to talk about doctors and a dysfunctional medical system endlessly, I would have gone to medical school or done my doctorate in THAT. As much as I appreciate the way everyone has hung on for the ride through the “Oh My GOD, and here I thought the Canadian medical system was BETTER?”, I want to spend more time being funny, having fun and writing about that.
Come on, hands up everyone who wants to see me go out and try to do a 7K race in my wheelchair and blog about it!
See, That’s interesting. I want to take a trip and photo whore every day another 200 pictures, pick the best to post and write about it. I want to do a book, EFM (Elizabeth Fucking McClung for those just joining): The first 18 months. Or the First year. Or From Epee to Catheter (yeah, I want a title that makes people uncomfortable, does that surprise anyone?).
Sure I am going to write about disability issues, and let ask, why exactly ARE people uncomfortable with, for example CATHETERS when we have public restroom signs everywhere? When you think about it, it is really the same thing (there should be a little portable/disposable catheter dispenser in the disabled toilets along with a tampon and condom machines – hey, disabled people or PWD’s have needs too, just like REAL humans).
5) I want to petition Rick Hansen’s Wheels in Motion to actually include the “all wheelchair users” which is the phrase they USE when they raise money, but they are only giving that money out to traumatic injury Spinal Cord Injuries. Dude (see Rick Hansen is still alive and here in BC!), if it takes 10 years for someone with MS to have loss of all leg function, that is a spinal cord injury, cause nothing from down there is going up the cord, is it? And yeah, as a person who is rated as a partial quad and is headed toward becoming a full quad, the whole simplification, of if you had a tramatic break you are spinal cord injury, if not, they you are just...ill...irks me more than a little.
See I can and have run over my own foot (it fell off the foot rest, and I was shoving the tops of my wheels hard going, “What the hell is this chair stuck on!” and Linda goes, “Stop! It’s your foot!” which was now upside down with the wheel atop it and the toes half sucked into the wheel guard. And I go, “Dammit, not again”, and back up, pull the foot free and tie it down.) But no, I’m not PART of Wheels in Motion (I called them) because Rick Hansen says I don’t have a spinal injury. Okay basic anatomy lesson, the reason it is called a spinal injury is because that is the most common way and really the only way messages reach the brain. If you break the nerve cord, or damage it, the messages don’t reach the brain. If, as in my case, you have some mystery thing going around and destroying each and every nerve, you STILL don’t have messages going up the nerve cord of the spine to the brain, and you aren’t ever going to. So get with the diversity program, Rick!
6) I want to see what happens to me next. I mean, seriously, isn’t this disease just totally bizaare and amazing! First that I am still alive after all this is odd. But also how brand new symptoms/body functions just show up or disappear.
So this week it is that I can’t tell if I am peeing (oh and you can put a burning pot on the top of my legs and I won't feel it). Oh yeah, now I have seizures. Now I can’t convert oxygen. Now I have to go out in a tank top because my torso is superhot and goes into heat stroke (and coma) but I need AT THE SAME TIME to wear winter gloves because room temperature gives my hands frostbite! I mean, this is amazing! I would say it is a hoot, except all of these are really painful or distracting.
But did I think a year ago I would have an eye-patch by my bed and by the computer for when one of my eyes starts to wander or feeds my brain garbage (By the way, a good gift idea! I need cool eye patches for going out or just wearing around). Just another part of the condition.
Look, this may all be Lyrica talking but it isn’t. I have been thinking about this ever since five to seven people in the last several days said to me, “Wow, if I was going through what you are…” or “If I had what you had…” or “If I was in that condition…” which all finish with, “I would rather be DEAD.”
Know what, I wouldn’t rather be dead.
I can make myself dead any time I want, and sometimes, yeah, I kinda want it. But most of the time I don’t. And just because I have a disease that is supposed to make me die (and has made everone ELSE die so far) and that I am progressing through the symptoms like I am trying to beat the rest of the class to the prize, doesn’t mean I want to die. NOR DOES IT MEAN I WILL!
Fuck em! I may be whining and mewling tomorrow in pain and tell you from my depression that I look forward to death and that will be completley TRUE. But today, and some days, what I hope are more and more day where I want to, am determined to and am going to LIVE.
FUCK DEATH! Fuck the crappy medical service. Fuck that I have to do everything though the back door or around the obstacles. I am still alive and I am Elizabeth Fucking McClung and just because I have a slightly/kinda damaged brain does not eliminate that I am still a force of nature. But now, instead of feeding all my energy into vampires like Beacon, my GP, and this medical system, I am going to try and use the energy to come up with and try out ways to live.
There is definitely going to be a part II to this post (becuase I only made it up to 6). And please feel free to add your reasons why I should fucking live a LONG time. Plus maybe suggestions on things I might want to do with my new found determination to LIVE
I will tell you two, which will seem rather odd:
1) I want to get out of this apartment at least four times a week on my own power. I was doing it six, the last few weeks I have done it once a week. I am not dead, and while I may be dead tired, I can still look at the flowers, even on a summer day for five minutes!
2) I am going to go for a ride in a glider (I hope the season isn't over!). I never got to learn how to fly, but if I can go for a ride in a glider, then that is what I am going to do.
Come on, I'm open to being inspired!
To be continued….
6 hours ago