When the Wheelchair PT Janet was trying to explain a point about my disease and caregiving today while tuning the new wheelchair, she said, ‘I bet some days you wish you could walk away from it all.’
I look at her with a quizzical look.
“Not you honey,” she said, “Though I bet you wish you could just up and walk away from it all.”
She was talking about having to make the tough decisions every time my autonomic system fails in a new way, to call 911 and spend 30 minutes trying to get them NOT to accidentally kill me or just wait 30 minutes and see if I get worse.
I thought what life would be like if I wasn’t in a VIHA clinic, getting tuning done on my wheelchair, if this wasn’t part of my day. What if I didn’t have home care later? I could just walk across the lawn to the sea, could walk up the stream leading down to it. But the truth is that I haven’t the slightest idea what I would do, except that I would have more time to figure out how to do it. Should I just go back to writing books or try to take over the world, or just play cards with catgirls (watch out they cheat). So, so, many choices.
I have tried to avoid that game of staying two steps in the past, playing ‘if only I wasn’t….” and instead figure out what to do NOW. When I became disabled, I let loose the voice inside that said, ‘…..if only you weren’t too scared.” And I dressed how I wanted to dress, which ranged from goth, to sex goddess waiting...and back again.
Linda said on this picture, “She isn’t a goth! She’s smiling.” I said, “Exactly, she a true goth, she knows who she is and what she wants.” I remembered, “Do you remember when I started wearing goth armwarmers, gloves, corsets and suddenly they went from something ‘ohhh’ and forbidden and maybe kinky and ‘what type of people wore them’ to ‘what type of corset today, the lace and velvet or the spider web?’” She did remember and smiled. “And then I convinced you to get a corset and we all got dressed in boots and arm warmers and went to the cemetery. And suddenly the corsets were what everyone wore.” It was a good memory.
Now days, I wear the corsets less, because I go out less, but I still try to get one out once a week, but the stockings and mary janes, the kinky books and the 4 inch heels are languishing, waiting. I talked to Linda about sex fantasies today (mine) because I want to know what turns me on. And we talked about stories we had read in the Manga Object of Desire and the stories in it and found that this one story about a woman who works as a maid in a maid cafe was the one which turned me on. Was it because I wanted to dress as a maid? No, but I did want to have a nice matching set of ‘sex undies’: the tap pants and bra or the panty and bra set, the negligee and ribbons in my hair the same colour. So, that is in my shopping future, something else to look forward to I think!
Okay, back to my sexual fantasy and arousal. We figured that this girl worked in a maid café and then at a party she asked if she could be a maid as that would be fun, to be a ‘professional’ maid. Other people looked down on her, and her partner came to her rescue. And I think that is what I admired, that she knew what she was, she knew that the clothes were just that, clothes and didn’t define her, but were a part of her expressing herself, and that she did what no one else did at that party, lived out one of her dreams. And the part that makes it fuzzy and glow inside is that she had a partner who watched out for her: who made sure that others did not make her feel bad about her dreams; who was aware of all the things she did and was there when she needed him/her (him in this case). That’s erotic to me.
I think with the coming of spring, this is very much the time to cultivate dreams. Some people like to garden, and so this is a favorite season coming up. They say that ‘love’ is what makes plants grow. Since I live in a building opposite to the sun, I will say that I tried love, but I think that having the sun and some water probably helps too! But I can see the attraction; planning out the garden then enjoying it, or like we did, growing a window box of parsley and other herbs and then going to cut some fresh green onions, parsley and other herbs to add to the Mexican Chicken. Spring is a time when every bulb and every flower is making plans (usually simple plans like, “Open and get sun, and spread seeds” – but plans all the same). And we enjoy seeing the beauty of their plans in action.
I guess it seems that I have left the ideas of loneliness, isolation behind. But life isn’t simple so why should I be? I have spent the hours staring into the darkness, aching. Desires. Yes, I have the aching to find others like me, to stop feeling so alone. To spend days not treated like a thing. There is the dark side of me, and the light side and they exist together. I was giving the tech sass and he couldn't get why I needed such a high end low mobility chair. Then not long later, after I had a grand mal, he worked around me, shocked, silent, uncomfortable, as I tried to watch and talk with him using my good eye. I was still the same person, the same mind, sort of, in the same body.
Tonight, going for my nap, I had another seizure and started crying, because the pain and exhaustion of it all. Yeah, it was just one of those long, long days. And now I had just ‘one more’ seizure, like each one wasn’t a special hell. Linda gave me Miko to hold and touched me. The touching me made me cry more than before, because it was what I ached for so long, within the seizure. I know Linda or others hold me, or speak to me while I am seizing: but they are locked outside and I am in.
Many people (not the readers here I think) see me that way, a ‘poor thing’ locked, chained to a body that is dying on her. And what point is there in explaining that I am who I am, that I have this FABULOUS dress sense due to disability. That my disability has shaped my humor, my viewpoint, my caring and my actions. I am not the prisoner, because I act, it is them.
Before, I lived my dreams, I got a Ph.D. so I could spend my time with my great love: books. Books were my morning, my evening, my rising, and my fall of the day. One time, running out of air, dying, I dreamed I was about to be taken to the LIBRARY where I would meet Borges, and Calvino and all the great authors, who worked daily on new works in the library, and the books were sold in the bookshop.
That changed, those dreams. Well books haven’t, they are still the great mirror of the soul. They are our entertainment, our challenge, and the way we change ourselves without leaving the chair. Books are still touches of greatness. But they are currently closed to me.
In the same way people believe that EFM is now gone, or is here only in shadows or that is who they want. I have a vocation, and I serve that vocation. And as long as there are those who need me, I serve. Or to put it in another way, I will never have the physical ability that I once had, but on the other hand, I now have other ways to ensure that those who need help, are heard, are seen, are remembered. Sometimes, my words, sometimes my presence but understand, who I am has not changed. It is one of the reasons I am going for my BC wheelchair racing rating. It is one of the reasons that I say, “Okay, you’ve told me it is impossible four time, now are you going to take my money so I can go do it, or not?” Every time I send postcards, I am EFM. Every time, I face another specialist who tells me I better hurry up as they are busy after making me wait 50 minutes to see them, I am about to go EFM.
The thing about me, is that while I change, I grow, I like to think that becoming disabled has helped me to grow, in many ways, I do not change. I have a code, I live by that code. And part of that is that when there are those in need, I stay, until every last one is taken care of. If there are five spots and six people, I stay. And just being that way drives some people wild. They try to bully you, they try to belittle you, they attack; I wish I knew why, but the law remains, and I remain, and if they are a bully to others, they shall not pass. Linda says she has seen this look on my face more than few times (and since becoming disabled).
So…..spring is coming, and there is a future ahead of all of us. ALL OF US. I have a future, I have choices. I almost stopped the postcard project after several bad weeks. But I didn’t, because I know from my own life the joy or anticipate that post can bring. I know that anticipation itself is a gift. That someone sending post that isn’t just formulas is a gift. That someone thinking about YOU, and sending gifts, however small, is something special and something to treasure. I do.
We all have this future and we have to decide what we are going to do with it. Or who we are going to live it for. For you? For others? For both, I hope. That this, not new years is when I make my plans, my dreams, my desires of what will be done, because I can hear the wind, the sound of grass, see the buds of plants. I look out and know that I better get something going and catch up to nature, because change is coming whether we want it or not…just as it does every year.
Linda and Cheryl made me a present. I could tell because when I woke up, they were always running off chortling into the other room, all over a few weeks. Very pleased with themselves. They gave it to me this weekend, and I wanted to show it to you. I am not sure where they go SO MANY bad pictures of me but if I hear you using any as screen savers (the bad ones, the good ones help yourself), I will be heading towards your city and your computer baseball bat in hand.
It made me happy, it made me nostalgic, it made me darn confused (some of the pictures I am in, I don’t remember AT ALL), it made me wish they had let me vote for some of the pictures. But this is a picture of Elizabeth from two people who care about me, and have seen me in good times and bad. Some new readers haven’t seen many of the faces of Beth (the not so great ones), or how much weight I have lost, just in my face. Of course the dark faces, the faces of hell and pain, they are too busy doing things to take pictures. Sometime recently parts of my hands turned black in a matter of a couple minutes. My face was terror then, and calling for help. I don’t know what happened after (probably seizures or something), but there is nothing like watching your hands turn shades of black over 20 or thirty seconds. But it is in the end, I think an interesting mirror of me. An interesting mirror more of Linda and Cheryl who are there, caring for me, being there so I can be there, always watching over me: My companions.
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.
So, so, many choices.
and back again.
She did remember and smiled. “And then I convinced you to get a corset and we all got dressed in boots and arm warmers and went to the cemetery. And suddenly the corsets were what everyone wore.” It was a good memory.
the tap pants and bra or the panty and bra set, the negligee and ribbons in my hair the same colour. So, that is in my shopping future, something else to look forward to I think!
and that she did what no one else did at that party, lived out one of her dreams. And the part that makes it fuzzy and glow inside is that she had a partner who watched out for her: who made sure that others did not make her feel bad about her dreams; who was aware of all the things she did and was there when she needed him/her (him in this case). That’s erotic to me.
and so this is a favorite season coming up. They say that ‘love’ is what makes plants grow. Since I live in a building opposite to the sun, I will say that I tried love, but I think that having the sun and some water probably helps too! But I can see the attraction; planning out the garden then enjoying it, or like we did, growing a window box of parsley and other herbs and then going to cut some fresh green onions, parsley and other herbs to add to the Mexican Chicken. Spring is a time when every bulb and every flower is making plans
(usually simple plans like, “Open and get sun, and spread seeds” – but plans all the same). And we enjoy seeing the beauty of their plans in action.
Desires. Yes, I have the aching to find others like me, to stop feeling so alone. To spend days not treated like a thing. There is the dark side of me, and the light side and they exist together.
I was giving the tech sass and he couldn't get why I needed such a high end low mobility chair. Then not long later, after I had a grand mal, he worked around me, shocked, silent, uncomfortable, as I tried to watch and talk with him using my good eye. I was still the same person, the same mind, sort of, in the same body. 
The touching me made me cry more than before, because it was what I ached for so long, within the seizure. I know Linda or others hold me, or speak to me while I am seizing: but they are locked outside and I am in.
And what point is there in explaining that I am who I am, that I have this FABULOUS dress sense due to disability. That my disability has shaped my humor, my viewpoint, my caring and my actions. I am not the prisoner, because I act, it is them.
One time, running out of air, dying, I dreamed I was about to be taken to the LIBRARY where I would meet Borges, and Calvino and all the great authors, who worked daily on new works in the library, and the books were sold in the bookshop.
They are our entertainment, our challenge, and the way we change ourselves without leaving the chair. Books are still touches of greatness. But they are currently closed to me.
And as long as there are those who need me, I serve. Or to put it in another way, I will never have the physical ability that I once had, but on the other hand, I now have other ways to ensure that those who need help, are heard, are seen, are remembered. Sometimes, my words, sometimes my presence but understand, who I am has not changed. It is one of the reasons I am going for my BC wheelchair racing rating. It is one of the reasons that I say, “Okay, you’ve told me it is impossible four time, now are you going to take my money so I can go do it, or not?” Every time I send postcards, I am EFM. Every time, I face another specialist who tells me I better hurry up as they are busy after making me wait 50 minutes to see them, I am about to go EFM.
Linda says she has seen this look on my face more than few times (and since becoming disabled).
That someone sending post that isn’t just formulas is a gift. That someone thinking about YOU, and sending gifts, however small, is something special and something to treasure.
I do.
because change is coming whether we want it or not…just as it does every year.
