Victoria B.C.’s lost suburb: Fernwood & ‘What do you Do?’

The first question Bill, who was 77 with Cerebral Palsy, asked was ‘What do you DO?’
I had not been asked that question in over a year and a half, and here a disabled person was assuming I DID. His view was the opposite of Health Authorities workers, the medical suppliers, the YMCA/YWCA supervisors and directors, the doctors, specialist and everyone else I had met who assumed disabled meant ‘life without focus and purpose’.

Of the five people I talked to at this indoor market for those who knew all about scraping by, two asked what I DID. Perhaps the reason 79% of Canadian wheelchair users are unemployed is because, in this city where the 10K’s goal is to have 15% of the entire population RUN regardless of age, those who do the hiring, who are part of those who ‘have’ equate ‘crippled’ as ‘hopeless and helpless’

Those who are just getting by know that in the underground and sideline economy, where spending a day to make $10-$30 is okay, disability from mental illness to physical issues don’t stop someone’s gig. And that gig is ‘follow your dream’ which often, when kicked to the curb, frees a person to take the risks of following what they love, and hoping some money comes.

I used the world ‘crippled’ because in a film watched last night the protagonist kept saying, “I don’t fear death when I fight; when I meet the next challenge, but I fear being crippled.” Dying was synonymous with being able to ‘Do’, to keep going after your dream, or as he said, ‘The next mountain to climb”, but being disabled was worse that death: it was a unimaginable living dead-end.

I said to Linda on leaving, “My problem is that I’ve been talking to the wrong Canadians. I had given up, thinking Canadians were apathetic assholes. But I've just be talking to those who don't know what life is like on the edge, and the wrong ones." I laughed, "Thank goodness." I went back to interact to those who have lived in the Tower, and it was a relief. It was a cool swap meet. For the whole time I was at the market, the heat of the room turned my body red, and my speech and movement was impaired. But not a single person finished a sentence or interrupted me. And they didn't do tasks FOR me, like when I struggled to grasp coins in payment. I wanted to know what they did, and they wanted to know what I did. We were equals.

The woman who sold me the Margaret Atwood Handmaid’s Tale and Jeanette Winterson’s Written on the Bodywas heading off to India.

The 14 year old who sold me the goth black top, skulls and cats showed me her favorite hoodie, with a music note and skull, music goth. We bartered. “How about 50 cents?” she asked.

“Will you take a dollar?” I countered. I am either very bad or very good at bargaining. That was a good deal.

I talked with some starting Native art carvers. I had met them at the Xmas fair. They were hanging and had the instruments out, carving while we chatted, doing the dream, even if the money wasn’t there yet.

Bill, who told me he had been told by doctors that he would be dead by the time he was 30 proudly proclaimed he would be 77 years old soon. We both belonged to the Quadriplegic Society and he had the same power chair controls as me, I have the beta version and he has the alpha version. Bill’s CP makes it harder to understand, but he waited for me, and I waited for him. We traded info about hospitals, and rehab, wheelchair fitting, and hobbies. He gave me a sleep shirt with native art on it. I picked up that Bill, like me, liking having a talk. I also noticed that he liked a) talking to women, flirting a little, and 2) looking at their breasts.

Was Bill the 'normal' Jerry Lewis on his telethon fought for? Jerry always talked about the ‘wretched lives’ of those with MDA and Cerebral Palsy, and telling everyone that like Bill was told, and Harriet Johnson: they would die young, young, young. Or rather, they would die UNLESS they live for Jerry (seriously, he states that one boy is 'still alive' because he, Jerry Lewis, took time to go bowling with him: and that like the Babe Ruth story, he is the Babe Ruth, for whom children stay alive because of his promises: "Hero worship, okay? That child stayed alive because of Hero Worship, and that's what I'm doing"). Yet he calls those who are disabled 'half a human' and Bill and I live in a 'Steel Cage' (his term for a wheelchair). When asked , 'Is that how you REALLY feel about them (those with disabilities)?' (an interesting 2 minutes)

His reply, "They can't run with me down the hall can they?", and in the stunned silence of the interviewer he continued, "In TRUTH..aren't they left with half (of being a human)? If there is a degree of measurement, are they whole (humans)?" This is where Jerry Lewis seems to talk about Eugenics. Are those with migraines 9/10th human?

Was Bill at 77, happily enjoying his harem of women to converse with weekly, and yes, maybe loving the breasts too, but happy, and kind, and generous. A success story? Or half a human? To me, Bill was living a good life, and the life he wanted. What was my life? Bill wanted to know. Writing, I told him, but thought later how I didn’t send postcards until I got disabled, indeed, I didn’t reach out much once I got out of the social edges.

Jerry's has a harsh response to criticism from a group who USED to be poster children for his telethon: those shown as dying, as to be pitied. Now these 'Jerry's Children have grown up and say, stop making us out to be things to be pitied, we don't NEED a great white able bodied hope who put himself forward as the only one who cares (even to being nominated for a Nobel Prize). Jerry's response was to threaten to take away their wheelchairs for complaining.
Or as he said in the linked clip, 'what do I care about them (ex-Jerry Lewis Poster chidren)'. He explained to the interviewer, "When 100 million people are watching me and thinking what I do is okay I can't worry or dignify (them)": the now adults, children who were used as poster children for MDA. His stance is that if able body people agree with him that the disabled are 'half a human' and wouldn't survive without Jerry, then he doesn't want to hear from those he is fundraising for, or even used TO fundraise. And if they complain, take away that 'steel imprisonment' in which they live (gee, INDY gets me places, but isn't my prison or my guard). As to being disabled, Jerry told Vanity that if he was, he would 'kill myself'.

In choosing that point of view, or Bill's, I think I'll go with Bill. After all, nice breasts to stare out, and good company isn’t a bad life to live. I guess they would be hunky boytoys for all the hetero gals out there. Basically, to Jerry, I 'Don't' do life, while to Bill and those at the swap meet, I 'Do'.

At the swap meet, still thinking myself as human, I bought gifts; books to send, a goth top for a teen known only by email and laminated posters for other onoline friends.

But I also got gifts: a sleepshirt from Bill, some extra posters, a cloth woven carry bag and a new outlook, a view to look at until I can look out my windows again. Yes, a woman let me look in her old viewmaster which had 3-D mix of superheroes and Canadian ‘wonders’ from spiderman swinging in, to a bucking bronco in the Calgary Stampede. You can see that it totally gave me the ‘WOW!’ factor (and that I am completely overheating, my face and arms bright red).

The woman said she got it, and was going to give it to someone but after seeing my natural reaction (“I did NOT have my mouth open!” I told Linda. She insisted I did, and was like a little kid), she knew that I was the ‘right’ person. And finding that I would keep it by the computer to have something too look ‘outside’, that made her certain. Bought a gift waiting for the right person to come, she sounded like me. We traded names of Blogs, and what we ‘Did’.

It took me three weeks, with my poor health to get there, but it was pretty cool, interesting people, interesting stuff.

The location, in Fernwood was surrounded with what Linda and I call, Ukrainian colors. This is because she come from the prairies where after World War II, groups of people from various countries were given land along the train line, so while she grew up in a town which spoke German (is dry, no alcohol, thus no prom, and had a typical 1938 German school day), there are within 10 miles, a French speaking town, two more French speaking towns twenty minutes away, Old Mennonites (Prussian and Paraguay), Russian, and Ukrainian towns.

From her married in relations and community, Ukrainians like bright colors, BRIGHT colors, so when we saw a house like this, it felt we were right back in the Prairies.

When Linda moved away, her ‘setting up home’ presents fell into two catagories, those that could be used, and those that glowed in the dark, which were put in a separate box. Even now, Linda will say, ‘oh don’t worry, that’s a Ukrainain towel/blanket’. This means, it is wild and not to her taste and not something she is too worried about getting damage as it is functional, vivid colours but functional. Fernwood, is reported to be an area of artists now, and still has lots of old houses, and the kind of old group housing houses, complete with the VW bus in front (one guy turned his car into a hot tub for reasons still unclear) which I remember from the time I lived there after arriving from Gettysburg, PA to go to university.

Our house was a lot like this Edwardian multilevel, which had 12 boarding rooms. I went there because I could afford it (just under 100 for a month) and though not as well painted as this, I was next to the kitchen and the bathroom. In fact, what I was paying for wasn't a room but the pantry off the kitchen, shelves removed. My room was 8 feet by four feet. I had a bed, and a door out. While it was small and unusual, it didn’t seem that odd during daylight when my grandfather inspected it and said, “Are you SURE?” as grandmother said I couldn’t stay with them and this was mixed gender and I could afford it.

It turned out the rumors of drug use was true in Fernwood as the next room over, the guy was growing pot plants, and on shaggy guy who had a live in girl when I arrived, earned his rent by selling magic mushrooms. Perhaps this was the when I had the path split: I COULD have enjoyed free love, candles and drugs (though I don’t remember lesbians or bisexual around, mostly just horny stoned guys). But since I was trying to go to uni, and work a full time job AND get home before the sun set (since that was not the place to wander after dark). Getting food was hard as our communal kitchen was often being used to prepared drugs, including preparing the pot buds, which took over the sink for three days, so no spaghetti! I was oft invited and started running out of excuses to avoid going in the 'vehicle hot tub' which I think didn't know the word 'bleach' and had hosts of STD's (maybe this was one of those places you COULD get herpes from a hot tub?). So it was time to move.

While there are lot of great houses, with lovely colours, and rightly should be heritage houses. But I am not sure if they are registered as Fernwood is one of the ‘lost’ areas of Victoria, not an area anyone thought of 'preserving' despite age. With a town hall, theatre, pub, and center, all within walking distance of town, and on the way to both the jobs at Hillside and the University, Fernwood is fortunate it hasn’t been discovered, bought up and turned into condo developments.

The place is full of character homes as well as parks, little pathways and green spaces, but also, and this keeps the price down, DRUGS, lots of them. I heard from a tenant, after I left the panty ‘room’, a month or two later the house was raided, perhaps due to one tenant there going from house to house looking for drugs when his supply ran out. There are, spaced between the restored and painted Edwardian houses, squats and shooting galleries. Unlike the UK, squatters are not legal nor can then get rights to the house (in the UK, you can even get on a list, or get a list of places that are open for squatting, and if you stay for 10 years, you OWN the building). Here, it is criminal vandalism, not that I haven’t had to squat (live) myself in unheated, no bathroom bits of roof and floors. Thank goodness for university bathrooms and showers and McDonalds, eh?

But one thing that Fernwood does is expand your mind, one way or another. This trip it was trying to navigate the streets, as the one ways, dead ends, and tiny streets is another reason adding lot of cars and condo’s is a bad idea. As Bill put it, “We are in the Center of a Maze!” True enough and often we would be blinded, while lost trying to find the entrance and street by yet another building blowing our limited color scheme and brightness ideas wide open. This is only a fraction of the buildings I took pictures of, or asked Linda to, all within a two square block radius.

Suddenly, I have the urge to get some glow in the dark forest green, eggplant purple and banana yellow and get decorating.

Falling: the opportunity, the choice

Falling isn’t the opportunity, nor the choice, falling often isn’t something you only know you are involved in until you are already there. For me there is falling down physically, falling out of bed, falling while trying to transfer, falling while rolling in my wheelchair outside, falling while doing sports in the wheelchair and falling during and after seizures. Plus I get down, depressed, in a funk. Often falling can be psychological, mental and physical. In many cases, when I have diminished capacity, I sleep better, because I only understand the most limited aspects of what is going around me. People say I am safe, so I believe them. People tell me when to eat, or drink. It is not that bad a life, honestly, when one merely needs to meow if you can’t speak and someone brings something nice to eat. And if they bring something not nice, just turn your face away and keep meowing (No, I’m not joking, I’ve done this. It isn’t a conscious thing, it is just a form of diminished mental capacity).

Then there are the seizures, and the mini strokes. Of which lately there have been many every day. Indeed, so many that it if continues, Cheryl and I are concerned that I will die; my concern from simply hemorrhaging in the brain. Cheryl is more pragmatic: I have a tendency in some seizures to eat my tongue and/or lip and if that is followed by a Grand Mal then the blood will choke me to death. I had three Grand Mal’s during almost an continuous hour of seizures on Saturday night. I don’t know what they look like but the descriptions aren’t comforting.

What I know is this; how would you like if someone picked you up out of your chair, spun around and then released you so you sailed through the air, smashing through things and into the wall. Then they picked you up and THREW you full force at the ground, and did it again, and again, and again, and again, and again. Know how much time that is? About 90 seconds or so: about half of a typical Grand Mal. Or they could slam your head against something for say, three or four minutes, while kicking your ribs. That’s getting to ONE Grand Mal. You are terrified, you are in pain. Now, you can’t breathe, in fact your saliva and maybe some blood is going into your lungs and all you know is that you are choking. There is a froth around your mouth and someone picks you and sits you up and you half vomit/half gag out all the liquid you can. Then you have another seizure. Someone checks to see if you have blowm a pupil, if there is blood spreading in your brain (blood is like acid to brain cells, it eats them and kills them FOREVER). But then high amounts of electricity known as a seizure are BURNING a scar into your brain. It is a scar so strong that they often have to CUT OUT the section of brain where it is to stop the seizures. But you don’t care about that because someone is slamming you against the ground and your neck is spained, and your ribs are sprained, and your wrist is sprained, and your muscles against your spine are ripped, and the back of your head is bruised. And blood is coming out of your nose, or dripping down the back of your throat so you keep spitting it out. And you still have 25 more minutes to go. That’s is what an hour of seizures are like (it kinda sucks!).

So lying there, helpless, I (or anyone) has limited choices but the people around have choices too. First off is the choice to make you feel safe. You don’t need to have a seizure to want or need this (close your eyes, a bit of heterosexuality coming up!). You can have a hard day, or just feel the need to be loved, to be in a space where someone is watching over you. And that is a choice for both people, an opportunity, to trust, to care, to be there so someone you know has a place where they can feel secure. I am lucky to have people who do this for me, otherwise I would just like there, alone. Well not exactly like this, because if THIS was me I would be lying there and thinking, “Hot damn! And hour of thrashing, and loss of memory, fine, I HAVE C-CUPS, NO MAKE THAT D-CUP! Woo Hoo, when I can move I am going to go flaunt this all over town! Haha, no one will be looking at my face for WEEKS! Dude, I’m up here, hehe! Oh, OW!!!!” Um, sorry, took a little fantasy jaunt.

But the truth is that all around us, in society people are falling. People fall. They are falling emotionally, they are falling in confidence, they are falling literally. Yes, sometimes when I fall, people come to help, sometimes, after watching me struggle for over a minute, someone is shamed into helping and sometimes I fallen and people have walked away (“Oh wheelchair, that might be complicated”), certainly when a seizure is involved. Then it is 'Run away, it is someone else’s problem.' No, actually, it is YOUR opportunity. When I was harassed in my workplace, no one stood up for me; when Linda goes in to be demeaned, in her workplace, do her coworkers stand up and knock on the door and say, “I think this is inappropriate.” Or do they look down, like people who are uncomfortable hearing a lesbian joke but just say nothing. Will they watch the person who is falling walk by, their shoulders slumped, trying not to cry, and worry about their own job, or be thankful it isn’t them, or pretend they saw nothing. There are ALWAYS going to be people in the crowd, indeed a majority of people in the crowd who will do nothing.

And SO WHAT? I am not talking to a “crowd” I am talking to individuals. Crowds down read blogs, people do. Individuals who today, or tomorrow, or sometime soon will have a loved one, a friend, a partner, an associate, a stranger who is or has fallen.

So.....what will you do?

This is an opportunity, because if you were a kid like most kids (including me!); I wanted to be a hero. I wanted to save people like on TV. I wanted to rescue people from burning buildings, or find people lost in the forest. And here I meet Cheryl who has done just that and who IS DOING THAT....with me. And yet, in so many ways, I would almost weekly come across someone who was falling or had fallen. A older woman obviously on a limited income struggling to carry the bulk food back, going a few yards at a time. “Please, can I help you.” I don’t know how many times I have carried groceries even now in a wheelchair, helped out. I remember this one woman because she was so grateful (we lived in the UK), “I know you aren’t from around here.”

I said, “Is it my Canadian accent.”

She said, “It is because you stopped and helped.”

What will you do?

I hope that when the time comes, you are a person who can be leaned on. I hope that you are the hero who steps up, regardless of age, ethnicity, orientation or gender. I hope you are MY hero, the woman who cradled my head after I had been thrown from my chair. A few minutes of her life, yet a memory in me that stays when others disappear.

But what if you aren't the hero, but the one falling. Well, for me, lying there, fallen, there are options. Sometimes I do need to rest. In fact this is a bit of a problem with me (the resting) since that night I tried with my single moving digit, a pinky finger, which I had wrapped around a chair leg, to try and pull my entire body to the study, when actually resting might have been better. I could have choosen to let others help me, and sometimes that is a choice a gift that NEEDS to be given. Sometimes trying so hard just starts another seizure.

Accept it, McClung, you are not superwoman, you are not wonder woman! I did not manage to get to the study dragging myself with one pinky finger. I did however manage to move my body a bit so I could then curl my pinky around Linda’s shoelaces to untie them in hopes she would take her shoes off. Because then I could curl my finger around HER foot and SHE could drag me to the study (see, there WAS a plan!). What I am saying is that there is a balance; I could easily say, “Hey, I’ve had seizures, I’m really sick, that’s it.” And spend the rest of the time lying watching TV or having a rub down or whatever would happen if I actually rested (I'm guessing, I don't know what would happen if I rested because so far, I've never taken that option).

But resting is one way, or I could get myself put back in the chair, finish my long blog, which I spent all day doing and then continue for a few hours matching and helping stamp postcards. I didn’t get a lot of postcards finished this weekend, and what I did was entirely due to the help of Cheryl. I did however accomplish another project. And that was due to the help of Cheryl and Linda (who said, “I never believed, even though I was helping that we could do it.”).

Of course, that had costs! Being there for Linda had costs, and I don’t regret those. I have had seizures today and times I cannot speak (including now, and I started this blog with my eyepatch on), and today I have been in bed more than usual. I have not been outside in a very long time. I might look a bit like this. Bandaged, exhausted, on oxygen from an hour after waking up until bed (okay, Linda doesn’t actually let me take the knife to bed anymore!). But I did that so that I could be here for Linda when Linda needs me. Today, she didn’t, or not so much, I needed her more today.

But I wrote that post, one about my fears; I actually have nightmares and altered states where I believe I have been put in a home. I exposed myself and my concerns on the costs both financial and physical of me being a burden.

SharonMV in her comment tody pointed out that my being there, or rather if I was NOT there, if my presence was not there trying to drag myself to the study with one finger while Cheryl watched, then THAT would be a burden. That not blogging, that not making jokes, that not being ME, would burden a lot of people. I had not thought about that until now.

Because of that post, which was just for me about my fears about the last remembered while and the time before that was seen as an opportunity for many people. I don't know, but from Linda it seems that she was contacted and I was contacted by people saying, "Eat!" That they said, "Lean on us, for a bit." That they were heroes. They were determined not to let someone fall; be it Linda OR me. While for me, SharonMV reminded me that greatness is not only in doing great deeds but sometimes in hanging on, in being there, in not withdrawing, in articulating fears so that others can understand the disability experience. That greatness is in reaching out to others, in forms of cards, or postcards, or stickers or emails or in some cases a medical kit of Hello Kitty Goth band-aids.

In life, fathers and mothers strive and struggle to continue to be there financial, phsyically and emotionally for their children. Partners offer safe moments and havens for their loved one; supporting each other through life. It is not the act of jumping from a burning building that is the act of a hero, but the act of putting out a hand. Of saying, come, be with us, we want to be with you, we’ll share our food with you. Of making choices out of the opportunities that come our way. Of staying when things get tough.

One thing that being disabled and being in a wheelchair has taught me is that falling is inevitable. Hitting hard is inevitable. Being down, being depressed, being angry, being frustrated, having to be in bed ANOTHER day is inevitable. But how I choose to view those falls, and myself is NOT inevitable. And how the people around me react is not inevitable. And thank you for that. Thank you for each person who has over the last (insert time period longer than a few days - month/s?) has stepped up to stop ANYONE, not just me, indeed ANYONE from falling...on that day (we can't always control everything, we can stop someone falling...that day. Or we can be there to comfort them after the fall...that day.)

While it looks like I will NOT be doing the 8K this month, unless it is this weekend and I can convince Linda to let me do “just one more stupid thing!” But you know what, I will take up boxing again. In these moments where the pain killers (actually doubling them is helping me a bit!) make breathing only slightly ongoingly painful I know who I am and what I do.

I will box again. I will play badminton. I will go rock climbing (even though I haven’t for over a year and a half). I will find a NEW sport that no one thought anyone in a wheelchair could do. I will focus my will and I will return, no not to the health I had before, but the belief that what Elizabeth F. McClung wishes to do, will be done, no matter HOW many times I fall, or cry before I succeed. I am a living conscious choice. Yes, I have diminished brain capacity (we can talk about that another day) and diminished strength, the inability to heal, and some other minor/major issues. But I do not fear falling, I fear the time I stop making that choice to push BEYOND the fall.

An apology for an ill timed death

Linda is leaving me to go on a tour of one of her ministries. Which is top secret. So I can’t say anymore. Cheryl is coming over so I don’t have to go into respite. By the way, we thought that since you COULD take off for parents having medical appointments, and not for spouses that the BC government was a government of heartless bastards who were minions of Satan. But last week we found out how MUCH a full time BC government manager could take off to take care of elderly parents who might have Alzheimer’s: 30 minutes a year. Yup, one half hour is included to take care of your parents in their sickness or disability, it is your choice how you use the half hour. Wow, see, now I KNOW they are heartless bastards in the employ of Satan. They even hate their own parents, and I don’t hate my parents, I have spent more time helping them in hospitals and such. Wow. Go BC government! Remember the slogan (again not a joke!): the best place to Live on EARTH. Which I assume is preparation for when the rest of the world is in nuclear war? Are there countries that allow LESS time off than ZERO for ill spouses (she does get a WHOLE DAY off when I die!), and 30 minutes a year for parents? Thinking….thinking…..nope! BC: The fucking worst place to live on earth! Don’t petition China for human rights abuses; petition US! Boycott BC!

Anyway, enough natter and why I am writing which is sort of an apology for not being dead.

Being truthful is very important to me and when I explain my condition, I explain what I can see. No one seems to have seen this condition in this presentation, but are pretty sure it is terminal but maybe prolonged terminal. Except no one has done a damn thing about it. And quite honestly, when they stop even testing for a couple months because your anemia is below 100 Hemoglobin and same with RBC. All because no one is willing to treat it, and that is the “minor” condition (the “Secondary to the secondary condition”), well, it is kind of disheartening. And when I am told I am here in October and it seems, as one day follows the next that I will see the next month and maybe the month after. I am not sure what to say because in April and the Summer the month of October was our far marker: “Will I be alive in October?” Probably not.

We even asked the neurological expert, who after hedging with the whole “I don’t see why you shouldn’t live for three years” and which isn’t the same as saying you will live, it is saying she doesn’t SEE a cause that would immediately cause your death. So I asked her, “Will I BE ALIVE in November?” And the Vancouver expert said…..nothing. Just looked at me and left the room. So what does that make you think in the Summer? And when someone summarized that I was having systems failing and was in tremendous pain and was not expected to last long, I did not correct them because that was how I understood things in the last summer.

Except I am not dead.

I mean, I am not having a lot of fun, in case you are worried about that. Sure, I wish that I could be perpetually in a sort of “reading week” bliss of just being a student and having a week to stay indoors and lay about and read. That’s what I wish life was like. Only I have a harder and harder time seeing out of both eyes (and not having odd or double vision). And I’m still having seizures, and still in pain, and still have the “do now....don’t pay for 30 whole minutes!” payment scheme. I am on oxygen, I can’t use my walker. I’m not in remission but the removal of heat and constant noise, and returning to 11 to 12 hours sleep a day is actually making me a) feel like I am ALWAYS having to go to sleep which is boring but also b) having some stability. I can talk 20 minutes sometimes before I slur or lose the ability to talk completely or pass out. I only having a couple absent (absance) seizures a day on some days. I am losing memory. I am losing nerve function.

Today I felt horny. I tried again, with intent and vigor, and made it JUST, just to the lip of orgasm, that place between “ready to go” and “going to pee” and back to ready to go” and back and forth until whatever scenario I desperately was creating in my mind involving a Feeldoe just isn’t making it.

Does going months without a successful orgasmic never mind multi-orgasmic masturbation count as “slowly dying” or just “a really, really irritating loss of nerve function?”

I am sorry, I am not getting better, though I am still trying. I am not getting out four days a week in my wheelchair, though I did get a wheeling project in today. And I went out yesterday to vote. But I am getting weaker. But I have good mental days. But I seem to lose time.

Linda says that my readers won’t mind that I am dying slower. I’m not sure, I mean, when you come to see the show, being told you are going to see a REALLY, REALLY slow train wreck isn’t quite as exciting. No, what I mean is that I am still degenerative it is just seemed to have stabilized in oxygen conversion instability (black fingers on weekend notwithstanding). And with the drugs, my seizures are down. And I am going to a clinic that specializes in my thing so there is a chance that I may be here to pester you for a while. Which means I may get my dreams, which I remembered were to go to Sakuracon. I had forgotten because I never believed that I would ever see the cherry blossoms bloom again.

The leaves are turning red and falling now. And yes, I am just as likely to stroke out or have heart flutters, as I did most of one day this week (hearts beating are important!) And I have had the start of congestive heart failure or something could start organ failure but right now, I really do think that I might be here to see the buds come out. That fall and autumn and red does mean the end of Elizabeth McClung. Yes, I might be in a bed most of the time and yes, I am still losing weight every week and bruising on my hip bones and pelvic bones from sitting in cushioned seats. And I don’t heal, not on my extremities, and not on my legs, not really anywhere. But I still race around and throw myself out of my chair for a hit, and I am thinking of taking up boxing again because I am tired of being scared in my own home.

Of course, when I can’t get my head off the pillow most afternoons and evening’s once I have had it lain down, boxing seems a mite of an overreach, but then, why UNDERREACH?

So with the rain and coming snow, there is a reflection, and that reflection is that winter is the time when people with disabilities and older people die. And I’ll be DAMNED if I am one of them.

I am sorry that I am not keeping to what I honestly thought was a sort of schedule, based on what was failing at what rate. It seems the heat dropping has significantly stopped stressing the various systems and that I am not in remission but at a slower state of decline. At least that is what it seems this week.

And I feel very bad, and very guilty and I am not sure what to say to my readers who have been really supportive and helpful in what is honestly a pretty horrid experience all around with also the “by the way you are dying…really quickly” thing. I still progress in couple months what other disease do in years; I still have so many diagnosed and untreated/untreatable condition I am a member of three societies and can be a member of several more. I somehow ended up a member of the Parkinson’s society without realizing it (I think Linda talked about me at a meeting and the next week my name on their newsletter through my door). I am still a partial quad. Still oxygen dependant and needing an oxygen concentrator to leave the house for more than an hour. I'm just not dying quite AS quickly. I hope that's okay?

But what is odd is that I don’t feel like this is sunset (endorpins? Pain meds overdosed?). Or rather it is sunset, and I am so far beyond what most people think is survivable (which I am, people don't even say to me, "If I was you, I'd kill myself anymore", they just sort of stare with, "Why didn't you kill yourself!" on their face) that I am determined to ride this toboggan to the end of the slope. And I see another curve of a hill ahead. Sunset still means the sun is going down, bad days, hospital visits but then maybe coming up for me again. No, maybe not on the same body and the same abilities, or even the same level or mind. But I am sure I can make myself annoying to the cogs of the machine. And send out postcards. And anything else I can scrounge money for to send off. Because people are special. And people who give a damn about me are demented but special, and people who care about Linda are smart; so are those who care about Cheryl.

So I am very sorry, but I will not be dying today. I may not even die before the end of the year. And while I honestly cannot see how it is possible to live through another summer, Sakuracon happens in the spring. And I will have an electric chair by then (the one that rolls around, not shoots you up with electricity!). And maybe I will sell some things at Sotheby’s and go to Hawaii. Fall has come and I am still alive.

I feel alone, I feel lonely, I don't talk much about the future or my future. And yet it is my apology that I am not quite yet death that I find myself setting goals, and talking about the future. And I might be alone during this winter, and lonely, but that is future, not the past, isn't it?

My counselor said that people with terminal disease find that living each day and simple gratitude are what give them peace. I told her that Lene said I’m not subservient enough and simpering to make a good disabled person to the AB’s in charge. She said that it was more taking each day as it comes. I told her, for me, it is taking the idea of what was possible and shredding it up. Linda says that if I lay down and just let each day happen, if I did not fight every day to make the best of my health, even if that is going to make me hurt for now, then I would already be dead. She has seen it and she believes it. I know this, I will not make it though this winter, which I expect to be rather frustrating, depression and not a few tears without a bit of fire and “fuck you!” and the sheer grit that I WILL go to Sakuracon…with Cheryl. And we will buy many books with scantily clad anime girls.

That’s the plan.

And after two to three bottles a day for two years, I have this wisdom to pass on: I hate the taste of Gatorade. But like many things that keep me optimally alive, I drink them.

Disabled 24/7

I will admit that having jackhammers at 8:00 a.m. tear into the sidewalk outside my apartment, and continue for eight hours has left me less than lucid. Having come from the Dentists office has left me fatigued and frustrated (a cleaning and check-up).

This is the problem I am having and have had for many months: I am disabled 24/7 but the agencies and individuals involved don’t seem to understand that. There is always this line of overlap or expectation that I could pop into a near-able bodied state to sort of tidy things up if I wanted to. Now the more that I become not only disabled in a variety of areas but also with greater inflexibility the more apparent it becomes.

Sure there is this computer, which has been sitting here for months, sent to help me, as a disabled person, maintain a home business. And yet, it took six months to get authorization to hire someone to take the computer out of the box (Because I am not sufficiently physically capable of lifting it around), and the same amount or more for someone to hook it up to all the cables. And now, we still wait on the software, which has the wrong ID code, and the person in charge of it has disappeared, and the new person in charge has not gotten back to me.

Today, Linda parked not in the parking spot closest to the mall entrance, which was reserved for pregnant mothers or mothers with small children (because they can’t walk very far), but in a regular spot near by because the blue badge disability spots were down hill two parking lots away (because people in wheelchairs can walk a lot further?).

In the dentist, the dental technician got upset because I did not recognize him, and though I explained that he should NOT lower my head equal or lower than my torso and was starting to tell him about speaking, he cut me off with a, “let’s get started shall we...” He lowered the table to do my dental cleaning, then more, then until my head was lower than my torso and my main job was a) keeping conscious and b) trying not to breath in my own combo of blood and spittle. He asked me a question, I tried to speak but couldn’t, he went, “I don’t understand you.” Asked another technician, they looked at me like the fish on the floor, as I was trying to say, “Suction the blood out of my mouth and bring me upright before I drown in it!” But decided that he would simply continue. Only now it was with the frenzied haste one gets after people have seen ‘the disability,’ he was hitting my gums so much in his haste and even managed to hit my lip and make that bleed. Linda came. She told him that I couldn’t speak in that position. Yes, would that be the same instructions I gave, but obviously in “Wheelchair English” which is some sub-dialect of able-bodied English.

Yesterday, I am green, I have told the oxygen woman I am heat intolerant and she is TRYING to keep me in the building to finish off convincing me that loud machine for COPD people is what I want. She is trying to tell me, as I am in danger of passing out that she cares about my health.

See, they don’t accept that unlike them, there is no switch I can flick to go into able bodied or ‘I am NOT ill and disabled and thus have lots of resistance” mode. That you keep me there, I pass out. Or as I said to the dental hygienist, “I CAN NOT FLOSS at the end of the day as I do not have digital control, if you WISH to come by and floss for me, please help yourself.” He was very, “Well, no need to get all excited.” And yet went and booked another cleaning in four months. Because since his last cleaning I aspirate, I have seizures, I am constantly on oxygen (and was during the cleaning) and I have a very low threshold for heat so much that Linda not only put a ice-cold break pack down in my bra but jammed one in my groin, during his cleaning. So no, “how about we call and see how you are and then book an appointment?” Just, hey, everyone ELSE gets four months.

We have two VIHA social workers upset at us because we had to cancel appointments. One because she had to leave a voice mail message. We tried to return her call today and got….a voice mail message. The worker who is most miffed is the dietician, who does not seem to care that I am below the minimum body weight that SHE set, but that we had to cancel the first appointment (even though I was in the hospital), as well as a second (because I was in a emergency specialist appointment). It seems she MAY not visit because, I don’t keep my appointments. Welcome to illness, welcome to disability. Do you think my seizures come on appointment? Do you think people’s Lupus flares or EDS dislocations come on appointment? Do you think I fly out of the chair on appointment? Do you think I can’t breath ON APPOINTMENT?

The worker at Recreation and Integration has been talking to me like a six year old. Calling weekly because “I” don’t have a good record for communication (would that be the same RAI that didn’t call me for the deadlines on the sailing program and the summer program and the glider program for two straight years). And that I don’t have a “good record of commitment.” This is because I was a) late because having no other transport I wheeled myself DOWN against traffic to the sailing program and arrived late once and because another time I left early (in an ambulance). Yes. And I am not communicating with my volunteer well. I asked, “Is this the volunteer who can only do activities with me two hours on a Saturday?” Yes. The same one who was gone for a month visiting after she was gone for a month doing exams. I was still doing my boxing then, I was still doing my activities. I was informed that the volunteer ‘might’ be able to do other times, but that if I did not give a firm commitment and keep to it to improve my communication, she would be taken away.” I told her that I exercise Mondays, Wednesday and sometimes Thursdays and if and when the volunteer can help, I will use her, but I had been doing that exercise and will continue without their help, if they are incapable of helping. This went down poorly. I was not appreciative. It seems I was supposed to sit and do nothing until the volunteer could tell me when THEY could be available and then go to the park or something. Lady, I don’t roll that way.

Linda is going to try and speak to her tomorrow about our “six month review” (again from Rec and Integration) and I asked Linda to include two things. One, to ask if I should put down my volunteers last name when I list them on MY CV as volunteering to assist college students in a course on breaking down ablist attitudes in sports (I know I am just a CV filler for these people, including the person at Rec and Integration). The second thing was to let them know that since they put their ad in the Victoria local Recreation and Sport flier saying, “Are you disabled? Do you want to do anything in this booklet? Rec and Integration will assist you in doing that!” that I will take them up on it. I am thinking Ballet and some martial art. My medical issues? THEIR problem, not mine. They are the ones who promised to assist me, they figure it out; since medical issues ARE part of my disability.

I am tired of GP’s, Specialist and specialized tech for hospital testing who KNOW what level your illness is but then get upset that you are in hospital and didn’t have the politeness to call them in the ambulance (despite being passed out). Or that, no, you couldn’t transfer yourself DOWN to the MRI/CT/insert test here, and oddly after the test is over, you are not able to fly back to your wheelchair, no matter how flummoxed they might be about what to do.

When I went for my Heart Monitor to be put on the doctor was, “Oh let me give you this gown.”

I pulled off my top. I was wearing my bra.

He was very agitated, no, I must put on the gown, and THEN he could lower it to put on the sticky tabs which the leads would be attached to. Well sorry doc (not!), but taking off my top I can do, getting into a damn gown I can’t unless he has two or three people significantly taller than the five foot aid he had with him. Weaker actually makes me HARDER to change, because I can’t help, but it doesn’t make me shorter.

I am trying very hard to do my job, which is a 24 hour job, of keeping myself OUT of hospital, OUT of seizures and if at all possible OUT of the majority of pain or other problems. They need to respect my job as much as I respect theirs and actually fit themselves into my schedule; and make accommodation. It is plainly embarrassing for them when I visit a health clinic or hospital, or my GP and yet again there is no room large enough for the wheelchair, no changing room for people in wheelchairs. I usually say loudly and often, “How lucky you are you don’t get SICK people in here!”

I hope, if I have time tomorrow to expand on this further with one of the more loathsome myths, that David Merrick aka The Elephant Man, died because “he wanted to be normal” and lay down crushing his windpipe. Think on this, there are many people with MD, people on Ventilators, on b-pap machines, on dialysis machines, people who live day in and out with their disability but also the vigilance to KEEP THEMSELVES ALIVE that such a disability requires. I am among probably tens of thousands of people who require that they sleep in an inclined position to stop from aspirating and choking to death. Does anyone really think that they need to call me and the other tens of thousands regularly to ask, “Oh, now you aren’t going to use your electric controls on the hospital bed tonight to put it flat so you can feel NORMAL and die are you?” Or “You aren’t going to just pull out your vent so you can feel NORMAL” Or, hey, why not throw my wheelchair into the ocean on my next Ferry crossing so I can drag myself off to feel NORMAL. Fuck, we have a full time job trying to STOP people killing us off and limiting our lives. The people who can’t accept that we have strong, inflexible and definite limitations, which are built into our disability, are the able bodied people who often run everything from health care to the disability organizations there to ‘help’ you.

BARF!

Non-human

I have dreams; fantasies about sticking my hand into a blender. Because I am not human.

I have little to no nerve feeling in my arm, in my face, my torso, and yet I can still move them. Yesterday, to illustrate my point to my night care worker I picked up a pen and stabbed it full force into the right arm, the same one typing this. I have the red round mark, and the indention where it entered. About 90 seconds to two minutes after the stab I felt a sort of throb, so I guess the pain found a route, somehow, somewhere. I feel nothing and yet I still can move my face and limbs, imprecisely. Something about how pain nerves are bigger than muscle movement nerves. I dunno more than that, since I don’t have a neurologist anymore.

To me it sort of seems like a zombie film. I have this skin and muscle that I can move, but I don’t feel anything. That’s a zombie right? I wonder if they shot me, would I feel it? Since I don’t have a neurologist and no one seems besides me to be recording how fast this is spreading, I don’t know if after breaking or eating all the axons of my nerves for pain, whatever it is will turn to other nerves? Then I won’t be able to feel the hand OR move it? Which is sort of like my life 10% of the time' between seizure and fatigue anyway.

One thing I have been keeping track of is the loss of my sexual feeling, my clit. The vibrators are not as effective and I estimate that all areas that have feeling are reduced by 60-70%. So I guess this WOULD be a good time to enter sex work, since I could be a living meat doll, able to smile and not feel it, able to hug and not feel it, to fuck and be fucked and not feel it. Meat doll.

I found out thanks to google that I am the number four response to “She raped me with her strap-on” (yeah, thanks sitemeter!) – which considering my memory (giant holes, nothing short term beyond five days consistently) I had to ask Linda, “Do we HAVE a strap on?” Nope. So not sure how I ended up the answer to that one.

By the way, beyond not being hungry, or thirsty, I don’t really have taste, and when I say that ALL areas are reduced by 60-70% that includes my tongue as well. My clit and my tongue. I wonder, will I be the first lesbian to “fake it?” Make the right noises at the right times though I can’t feel anything.

There is something I am supposed to grieve I think but I’ll be damned if I can’t figure out what it is precisely. I have dreams every night of being skinned, or covering my torso with knife cuts and carving ‘Morte’ on my stomach. I have dreams like that while awake. Yesterday at badminton, I took of my legs restraints so I could throw myself further out of the chair. I wondered if I would break anything. I wondered how long it would take to notice.

When our new overnight long term worker arrived last night we told her that she has to check my oxygen levels, that I can’t feel my temperature. That she has to do it for me. Told her the it was important to keep me conscious when I am trying to be conscious, and asleep when I am trying to be asleep. Told her about the problems feeling.

She wanted to know how I could be in such pain, so much pain if my nerves couldn’t feel. I told my guess, that if plucking just one nose hair is REALLY painful and plucking eyebrow hairs is painful and those are just ONE or two nerves and I have millions and hundreds of thousands are dying, that they might be screaming, all the time screaming. And if, it takes them five of ten minutes to get a path to my brain, it doesn’t matter because they don’t stop screaming. And that is just the pain nerve endings, the muscle pain, from constant oxygen deprivation, hurts too. And the pain from ripping of my muscles from a cellular level up, and never being repaired. Like me, they are sending out messages for help; but it never comes.

We told her that we try to keep the bits that can’t feel from being too damaged since I still have hand injuries are months old, and that I can’t survive an operation, because the heart is dodgy and that is not to mention the progressive anemia. So if something starts to rot or get gangrene we will just have to try to stop that from spreading.

She asked me then if I had tried ‘alternative’ medicine because she knew a ‘wonderful woman’ who had healed herself of cancer. And that she could tell what was wrong with you without even touching you and how my overnight worker, who was signing up for a long stint with us, for watching over me, she believed that NO ONE who truly WANTED to be healed or to be cured couldn’t be cured. Yes, if you WANTED to be healed, then in this day and age with all the different medicines we have, traditional and alternative if you really wanted it, you could be (and this woman had some training from 'a real chinese doctor').

I can’t express how angry I was listening to that. Here sat this person, younger than me, telling me that I just didn’t WANT to live with Linda enough, that I somehow WANTED to spend my time writing wills and living wills and taking pain pills and hurting rather than being outside running. I told her there aren’t any 800 year old people around and that in Buddhism one of the truism is that if you are born you are going to die. I asked if she had seen anyone die. She said she had “Taken the palliative course” and sat with people who were dying, old people (as in no, hadn't seen anyone die).

I told her that I did palliative work when I was teen and it was with people I knew. I said, this is going to be someone your age, and it isn’t going to be old age, or cancer; I said it is going to be brutal, it is going to be agonizing, and you will be here month to month to see if. I told her the autonomic system controls the heart, and the veins and blood pressure and heat and oxygen. She would see things that she might never ever see or hear of again, and would she be calm when the pain of a heart that stops beating and then starts again to a highly constricted vascular system causes me to scream, and scream? When my vascular system rises and starts bursting as it does, turning my limbs green before the blood just starts erupting everyone, in joints, in hands, in elbows, shoulders and in my brain, putting me in TIA’s or seizures. Just because. I needed to know because in a few months those will be the better nights, besides the ones I sleep and if she truly believed that I could be cured, then she had better leave.

“But you’re not going to die tonight.” She said with a nervous laugh.

Linda didn’t laugh. “Yes, maybe I will die tonight: I almost died, and had 40 minutes to turn it around, with an EMT here recently, I’ve stopped breathing for 25 minutes over a 45 period, I’ve had emergent pressure on my major organs, and that is all the last few weeks,” I told her. "So yes, I might die tonight, that's WHY you're here."

Little did I know that an argument with Linda would use of my reserves and at 1:00 am I would go into seizures separated only by seconds, each one more intense than the last. My resting blood pressure between seizures, 178/167. Linda said she could see and hear the heart just stop beating for a second or two before a frenzy of beating again. She managed to massage my jaw open enough to get an Ativan in and after the next seizure it was down to 136/125 but the heart was even more erratic, more delayed.

When all I have is an eye staring at you, like the cells and nerve endings being destroyed, screaming “help me!” Does it get heard?

I know that in my future, unless I choose to overdose these nights are what will be known as the good part. I will not be medicated with some definitive progression. This isn’t Cancer, this is the part of the brain that controls everything we depend on, we need it to do automatically and it is slowly dying. Many call the crucifixion the worst agony, as a person has to stand pain in order to breathe, and when the person grew tired, they relax, hang down and suffocate. They talk about it using the word horrific. I have had to manually breath, agonizingly trying to expand my ribs, suffocating by my body weight, waiting as everything goes black and sparkling for someone ro roll me so I can suck down each breathe. To pass out only to be pinched, called, shouted, be woken to breath again, because my body and brain isn’t doing it for me. for dozens of times for dozens of minutes. And that is a good day. That is a normal day. That was today, this afternoon.

So what kind of human am I, who has to have a timer to tell me when to breath, who puts themselves in pain so that the meat doll lasts a bit longer. No hunger, no thirst, no need to pee or shit, no taste, often no sight, only emotions. No one knows what my dying will look like: Linda and my friends hope it will be quick, that if I don’t have a massive heart attack or stroke it will be less over in than a month.

Because my presentation is unique, they can put a pacemaker on my heart to keep it beating, but nothing to stop my veins from constricting and bursting in my brain. Blood is like acid to brain cells, what you lose there, you don’t get back. Kind of why I want to keep mobile, because at worse it could be months even years of a withered body, a shitting/pissing sack of meat where each month my ability to understand what is happening to me, what the incessant pain means. But with a body I spent decades of a foundation of marathons and athletic training, how much can it be beaten down, what WILL it take to destroy me? How many months of strokes and seizures lying there until my IQ is knocked down enough so that I don’t realize the horror of what is happening. Becuase when that spark goes then they can, probably will have to put a muzzle on me to stop me from screaming constantly.

So how many months or years before that for Linda to see me in constant, agonizing and bewildering pain, with me looking to her, “How could you do this to me?”

But if I just WANT it enough, then I can be cured; because there was a woman who had cancer.

I am going in the Terry Fox 10K. If I succeed, I have a 5% chance of dying that day (heart attack, weakening of heat stroke, seizures, to heart attack or stroke). If I succeed I will be in agony so extreme that I won’t be able to sleep for three nights at least. I will be in pain so bad for a week I won’t be able to hold a pen, be able to do much but use all my energy to focus in order to just be able to speak. If I succeed, I will prolong this meat doll, inproving the respiration and circulation, in order to keep getting out of bed for an extra month. Maybe.

How do we know if we are human? If you prick up do we not bleed? Well, I don’t. Not at the blood center. I feel, but emotionally. I still have fear and terror; I have frustration and despair.

I was evicted from my home this morning so a group of people from Beacon could do oxygen training. For me, I think. I went to the library to see if the followed up on whether the Juvenile section had displayed Harriet McBryde Johnson book, Accidents of Nature as I asked of them after her death. They had culled the book instead (removed and sold the hardcover for 50 cents).

I asked the person putting out books who decided to cull the books? They sent me to the librarians desk. The librarian said that decision wasn’t really theirs, they might see it but it would be made in the children’s section. I asked them if they had culled a lot of Martin Luther King lately? They laughed the “Of course not, he’s important” laugh. I asked if they culled Henry Thoreau? Or Rosa Parks? Another laugh.

I went to the children’s section. On no, the person on the desk didn’t have that power, she was a clerk, but maybe it was damaged. I told them it wasn’t last month. And wouldn’t that be replaced. Yes. Was it being replaced? No. We did the same dance on how it could have been stolen. No, not stolen, not being replaced.

She thought there was a form for people who wanted to complain about books culled. She found it. It was a form for people to ask for books to be removed. The next person came, she was a children's librarian but not a senior librarian, she recognized me. I told her, “Over a year ago I asked you where the books for girls in sports were, and where books on teens with disabilities were?” She said she remembered and nodded her head. I said that it was a year later and the central library now had LESS books on females in sports in fiction and LESS books on disabilities. They stared at me. The one woman who recognized me at least nodded in agreement.

I tried to explain, I told them that if we, all whites were in Baltimore and we only had one or two books of black teens living city life, that we wouldn’t be a very representative library of Baltimore. I had asked for literary work of the the woman, Harriet Johnson, who changed the way people with disabilities and child exploitation of the disabled are viewed to be displayed, her work to be displayed at her death. Instead, they had removed a book, a hardback from Henry Hold, in perfect condition, that they owned less than two years. It had taken 12 years for that book to find a publisher.

I said that the recent TC 10K run of 10,000+ had more women than men, yet the library had more athletic teen male fiction than female. I said that a recent report showed that one in six Canadians had a disability and yet I not only doubted that 1 in 600 books in the teen/youth fiction section reflected that, I doubted that 1 in 6,000 books reflected that. They told me the Children’s librarian who did the culling was coming. And I could always submit book suggestions.

The Children's Librarian to me and explained that I should go home (in my wheelchair) and give my opinions and views on the webpage, where views and concerns could be written down and then forwarded by the click of a button. I said, since YOU are the person who pulls or approves the culled books, wouldn’t it be easier to explain it to you? No, she felt that if I left, that would be better.

I said that the problem was that the clerks who pulled the books and librarians who approved the books didn’t have all the information to make an informed decision. The gave me the dirty look. I asked them if they had culled, Peter Pan recently? They laughed that laugh. I pointed out it might not be taken out as often. No, but it was an IMPORTANT book.

And if Martin Luther King had written a book for youth, would that be an important book? Of course. I tried once more to explain to the three women standing and looking down at me in my wheelchair that Harriet McBryde Johnson, for the disabled population WAS that important, that it WAS an important book. That Accident of Nature was, as far as I could tell the ONLY book the library had to tell kids with disabilities from CP to OCD, wheelchair users to epilepsy that being disabled was okay, and better than okay. And now that book was gone. A book which told those kids that they should set their OWN dreams, not let 'good intending' abled bodied people set those for them: that these kids were equal to their able bodied peers and could set their own goals. A book written by a disabled kid who grew up, no not to die a horrid death as implied by Jerry Lewis but to become a lawyer and live life deliberately.

The librarian emphasized that it would be best if I left the library and explained all that in an anonymous statement over their webpage (which would then be forwarded to her). I think the emphasis was on LEAVE THE LIBRARY.

Linda had come looking for me, the oxygen training was done. She helped push me home. I had exhausted myself to try to get six able bodied libraries who had as librarians, just recently had their civil work liberties walked over by a lock-out from management, to understand that they worked to remove the only written voice of disability for youth, teens and young adults. The only voice that helped me. Then they worked together, these same representatives of the library to get me to go home, to go online, to stay out of sight.

Because I am not human.

I am not “bound”

Regardless of what newspapers constantly print about wheelies or people with illness or disability, I am not “Wheelchair bound”, nor am I “bound by my disease” or “bound by disability.” And I am NOT “House bound.” I say that because today, while I went down to the video store on the off chance they had released Supernatural Season 3 early (they do sometimes if it is a long weekend). The person denied that and wondered why I didn’t call and then said, “Oh….that’s right, you like to go outside.” Spoken to me as if I was some rare and unusual form of human or odd for a person with a disability.

Yes, I like going outside. On my high school question sheet: “What do you want to be/do when you grow up?” I did not answer either, “In a small prison cell” or “In a locked sanitarium.” Does anyone?

It vexes me (yes, use the lisp, “I am Vexed, and Very Vexed!”), that “person with severe disability” and “person who is ill and stays in home a lot” someone makes my going outside to be an oddity, instead of a natural human desire (since I have notice most people DO go OUTSIDE!).
I will admit, when you have a severe disability going out is a risk, how long will you be stable, what if something happens? While at home everything is set up for you, as you like it, and if needed you can always go to bed, your medicine from pain to anything else is right there. It is a safe space.

I have found that new things and risks follow the rules of three, whether that is just going outside to look at things, going to a new restaurant or a vaction or a new whatever (like a sport). 1/3 of the time it will be horrid. It will be the vacation from hell. It will be the restaurant trip of disaster. Or if you have just gone out to look at the flowers, you will be stung by bees, have a pollen attack and be in bed for two days. BUT 1/3 of the time it will be OKAY. It will be a little bland, nothing super but not that awful either. And then 1/3rd of the time, it will be GREAT! These are the time when you go out to do a little gardening and see humming birds, or go to a restaurant and there is a woman who starts singing opera. This is the time you go for a picnic and see foxes or squirrels or deer.

But if you don’t RISK and have the 1/3 BAD experience and then TRY AGAIN, you don’t get the chance “Great” experience.

So first I am going to tell you how I am doing. I am in bad shape. REALLY bad shape. And the last three days I keep TRYING to get better, but somehow I get worse. So now, I cannot really move, and I need support for my head and I am in a lot of pain, and I need oxygen and did I mention the pain because it is so THERE that I think I am going to mention it twice. So that is where I am at (plus I didn't sleep much last night - pain again).

But this is what I am going to do, and this is what I am going to challenge YOU to do. Because I’m your friend, and that is what friends do, challenge us to go skydiving with them (not LIKELY!), or invite us places or push our boundries: but also be there to support us.

So, this is what I will do. I will go out this long weekend (for North Americans it is a long weekend). I will go OUT. I don’t know if that is to the park, so I can see squirrels or just to go around the block and photograph flowers but I will go out and I will record what I did this weekend. So that is part I (that means there is a part II).

So my challenge whether you are disabled, or not disabled, as your friend is to ask you, to challenge you, to go OUT. Go do something. Get outta here! Stop reading (wait until the end) and think about what you are going to do! Okay.

Now if that means that you get your caregiver to help you to the porch, that’s fine, that is OUT, outside. And if you are in the UK or here and it is raining, maybe you will need to wait a day or find somewhere ELSE indoors. But the thing is, we as human beings take BIG risks and we take little risks, and every time we go out, we are risking ourselves emotionally (we have expectations!) and physically (for some of us that is a higher risk than others). So being able bodied or disabled we are all human beings, and we all have fear and we all NEED to take risks (hey taking a shower is one of the riskier things around!). So go outside, take a risk, and see what happens.

The second thing is that this week I was sort of accused again of being a liar because I guess when you see me on youtube and pictures and all that, well, that just can’t be true or something. Or I am one of those unemployed people with some ‘fake’ disability who just suck down money from hard working people and the system (Except I don’t receive a penny from any agency). So for me, I will GIVE something to someone this weekend. That is a very human act I think, the act of giving.

I have been blessed from readers and other people who have given me things: postcards, hello kitty stuff and last week an anonymous gift of a human heart (seriously! It was very sort of E. A. Poe. Also what about me says "Give human heart" - never mind, don't answer that, I actually know that answer.). I appreciate each postcard and act that goes behind the gift. And sometimes I am able to tell them that and sometimes I am not but it doesn’t negate the act, or the effect, does it?

So my second challenge on this long weekend is to GIVE something to someone, or prepare to, if it requires mailing. If you are looking for something small and manageable I recommend a postcard or a letter – you probably own it already and then there is just a cost of a stamp, or you can hand deliver it if that is possible. Or give a book. Or give a flower.

I would ask this actually NOT be an act of spontanous kindness, to NOT be paying the change of the person ahead of you in line or counting helping someone carry groceries. Not that I am anti-kindness and kittens. I am very MUCH for kindness (and kittens). I think helping people is super!

But here is the challange to GIVE, to choose, to think, to decide who and what and why it is right for them is not spontanous, but something altogether different. It is the tangible way we humans say, “You make a difference to me.” Or “I care about you.” Or “I though you might like this.” Or “I wanted you to know I was thinking about you” or whatever the message is in why you give what you give (please, NO LUMPS OF COAL!).

So that is it, 1) Get out of here, go outside (just once in three days is enough to please me).
And 2) GIVE – give something to someone, if that is possible at all.

Why, because we are not people BOUND, we are not BOUND to our house, BOUND to the ideas that people have of us, BOUND by fear, BOUND by the idea that risk of doing anything is too great.

And as humans, it is rather normal to think of us, of ME, quite honestly, and while ME is a word that is fine and good, I am asking as a friend, pushing a little if that is how it feels to you, to think of how to make someone else happy. And I know that there might be in your life the pain and the stress and the condition, the family problems, the work and relationships issues. But just a little time, a little something for someone. Surely there is a co-worker or a relative you don’t HATE (well maybe at least a co-worker!). Someone you know, someone you have heard about, some child (kids actually LIKE presents), some old classmate or friend whose address you have sitting around and you just happen to have a pen and paper…hint, hint!

I will report back how things go. You can too if you want, or keep it private if you want or say “Elizabeth is a freaking nutcase”, if you want.

Also if you have no postcard and WANT a BLANK postcard sent to you, so you can send a postcard to someone else, let me know okay? I did a post on my last little batch over at the Postcard Project if you want some ideas(I made a new post today - hint, hint; you can go look even if you don't want some ideas - hint hint. You could even whisper: leave a comment).

Go outside – take a risk and care about yourself
Give something – take a risk and care about someone else.

This isn't a challenge to you, this is a challenge for me; it is just I want a little company for my risk taking.

We are not bound, I am not bound. I am not a person who is ODD because I have my conditions and yet I still choose to go outside. Part of being human is the ability of choice. I choose to expand my life, I choose to try and expand another’s life. I am a human being, unbound.

We crips are "These people" according to USA NBC Olympic coverage, woo hoo!

Okay, I am officially having a crap day. I didn’t get enough sleep. You know those head ache commercials weere people jackhammers work on your head – I actually HAD people with hammers, a LOT of people with hammers over me hammering over my head, blowtorching high powered blowtorches over my head. The “why?” is because it is going to rain and I guess they used a double crew up there for the day to finish the roof. That meant I retreated to the bathroom with my MP3 player in my ears and could still hear them (for hours). Do you know how strange it is to be taking a dump while listening to ABBA on full blast and STILL hearing roofers? Actually I think ANYONNE who takes dumps to ABBA at full blast already has severe issues (like if they are a guy and live with their parents, time to tell them about your orientation).

Then I was delayed getting a nap which culminated with me having a couple major seizures. The purple hand that was oxygen deprived was a clue this wasn’t a great day. What I don’t understand is that I went to Badminton last night so should be good (lost, lost, oh I just couldn’t click with the people I was playing with including one guy who would immediately go to the opposite court of where I was – real subtle dude). So I ended up partnered with one person who didn’t think I should be there (seriously), and that maybe people in chairs shouldn’t be playing badminton. So DURING the game, if it was out of my reach the person would just stand there and stare at me and say, “Hey it is on your side.” I eventually broke down and said in my repressed rage voice that “No matter how much I might WANT it to happen, wheelchairs don’t travel sideways five feet to get the birdie.” Anyway, we lost and my partner walked off and then when I put my racket in the rack they came up after a bit and took theirs out so we wouldn’t end up on the same court again (the next four rackets go on to the next game). Double Subtle.

I guess what bothers me is all this discrimination is open. Open, public, in your face bigotry! Recent I went with Cheryl to the store that a sign saying they were hiring part time, full time, management, and used the RAMPS to get down into the store. The woman told me they were desperate, that they had SIX stores on the same road and all their staff was leaving in two to three weeks for school. So when I said I had 14 years retail experience, there was the usual hemming and hawing but at the end, she actually came out and said, “There is a lot of WALKING in this job.” And when I pointed out I had already gone everywhere in her store in my chair there was the the usual, “Well, maybe if you talked to X, the person in charge of hiring….” (meaning “You got no chance but MAYBE she might hire you.”) And so I asked, that “‘when I drop off my resume’ you want me to put that I use a wheelchair on it?” And she was like, “Yes, just so…..they know….you know.” (oh, I KNOW!)

See that is the minor difference between having a disability act (like every other western country) and Canada, where my only recourse is to “claim” I am losing my “human rights” on a federal level, but that means I spend a decade over a Federal Supreme court case (instead of simply calling the city commissioner).

It wasn’t about me. I mean this woman was DESPERATE, she would have hired Cheryl, who was using a cane, because she could WALK. But I couldn’t, and while the job did not actually require a “lot of walking” it did allow a person in charge who thinks that people in wheelchairs shouldn’t be there, and let them actually say that. So I can’t even get a $8 an hour job filling in for an hour while someone takes a lunch at one of the stores? Because someone in a wheelchair sitting there ringing up customers is just not what that person (or actually any person working at any of the stories we visited that day) could imagine. So like the person who I played with, they would rather LOSE, than even TRY to learn to play WITH a person in a wheelchair. At badminton that person stayed on their side and stayed far from me. I won the first game but the second one is what I remember.

There is something about being reminded so often that as far are most people are concerned it doesn’t matter that I exist. See I could be a fucking genius with an un-recordable IQ (actually it was just they said the tests weren’t sophisticated enough yet), and a shitload of degrees, or I could be a vacuous barbie girl who stares into space and ponders yet another few hours why it might be that having a wheelchair makes maintain long, painted, french nails REALLY hard! All that matters is the wheelchair. Actually I probably could get more jobs as the perky barbie girl hired out due to my hobby of doing wheelchair modeling, to put a perky smile on a companies who wanted to be “disability friendly” for a day. Because when the RCMP civilian sector actually says in a recruitment tent they won’t hire people with Fibro or Chronic Fatigue…..that means you need to have an ad to show you are complying with Federal Hiring Targets, so a picture with someone in a wheelchair with other smiling people with a “recruiting now” sign is going to be part of THAT plan.

What bothers me is that I didn’t even make it to the usual, “This is an area where we find women don’t usually excel!” or whatever other sexists bullshit there is, no, here I didn’t actually didn’t get to be a person at all because all they could see was the wheelchair. The human (or non-human) in it was irrelevant.

One of the few things I can say I am genuinely happy about is that I AM dying, because I don’t have to take this bullshit much long. I don’t have continue to be told, as I was by one employer, that no, they wouldn’t hire me because ‘we already have an arrangement to hire mentally challenged people.’ What? Well slap a “gimp” sticker and add a flavor because I actually thought that I, Elizabeth McClung was applying for work, not “Quota girl” or “Wheelchair” or “wrong disability for our token disabled person.”

I know a lot of people are against Quota systems because you get hired and people there KNOW you are the “token” or “quota gimp.” Which just illustrates that some people don’t know how to FUCK UP A SYSTEM FROM WITHIN. I DO! Hey, in a city where I could (and Cheryl or Linda will back me up) get a job by the end of the week if I simply WALKED IN THE DOOR, I will take ANY token or Quota job. And then…….what, you think I am going to do a great job quietly so that they decide to hire more people in wheelchairs? Get real, I live Victoria which has the mental equivalent of deep south some time ago, except that they don’t even consider us wheelie enough of a human or a threat to rob or lynch us.

Example: I went to Triumph and asked in a public meeting the Managerial Head if the official policy of an agency to assist people with disabilities was for people in Wheelchair to BURN TO DEATH during a fire (as the fire exit we were REQUIRED to use was not wheelchair accessible), and she hemmed a bit before saying, yes and could you please sign here verifying you have heard and will comply with the fire training you have received. Seriously. No shit! So you think that if people actually saw me as human, actually thought I was like them that I wouldn’t be pulled out of my chair by any yahoo wanting fast cash? Bet ya!

Hey, I feel more secure against rape and attack NOW because after asking a survey of hetero males, I found out that other than devos, girls in wheelchairs are considered by men in the “undressing all women” way of looking for a girlfriend or sex toy that they are “too fucking complicated…just move on.” See, a woman who can walk but might have emotional problems which includes chasing a guy with a knife is still okay if she wears high heels and has a nice ass. But ‘dem wheelchair gals, I mean, are they even okay down there? Will they moan at the right time? Just too complicated to think about……

Okay, I guess my rant is over for the day (not likely!). I am glad to be out of this fight because while I have the patience for my own pain, my own health problems, I don’t have the time or patience for the bigotry which makes “dyke haters” actually seem enlightened (they can at least identify and articulate their hatred and bigotry!). I do recommend for all those in wheelchair in Victoria to do as I am going to do, for when the bus drivers will pull up, take on all walking passengers and then tell you there is “no space.” I am going to be carrying a chain and padlock. So I don’t go, nobody goes. Or you can drag me out of the chair and beside the bus, and since I know transit drivers have to fill out forms if their mirrors get dented I am thinking that won’t be their choice, but if it is, so be it.

Do you want to know what even a country that has had a disability act for 25 years thinks of people with disabilities? There is Natalie du Toit, a South African female swimmer who also happens to have an amputation, but says that she expects no quarter nor gives one. She finished sixteenth in the 6.2 mile open swim at the Olympics. From Wheelie Catholic: Natalie, who told reporters she gets frustrated when people "look at her stump or prosthetic leg before they look at her face"

Now we have the online coverage by NBC, a major network, they have 10 pictures of her. How many until they actually show her HEAD much less her face? It takes FOUR pictures. Yes, stump she is and stump is all she will be. There are 10 pictures of her……but only ONE of her actually doing her sport.

I have to ask, is there any other competitor in the Olympics were we get endless shots of their ankle, or pecs before we are graced with a picture of a head and them doing their sport before going back to pictures of their ankle? I am just saying that I am pretty sure the 10 pictures of Michael Phelp’s swimming a race included more than 10 % of him swimming and 80% of them focused on a piece of anatomy, let’s say his ASS, his tight ass in a swimsuit. What would people say if picture after picture scrolled by of his ASS while commentary of Michel Phelp’s swim was being made, eventually one picture of him swimming, then back to ass shots.

I would think the general population would think the large network NBC was smoking the waccy tabaccy, or LOVED his ass, or were a little off, or bigots.

So that is what 25 years of a disability act gets you, 1 picture of the event, and eventually showing the person has a HEAD and a face. Here is the quote of an American swimmer she beat (from the article), "I was swimming next to her and she beat me -- and she has one leg," Sutton said. "It's incredible she was able to do that." Golly, when you get beaten by a competitor it is talk about training, when beaten by a GIMP, she is just "incredible."

"I'd even go so far as to award her a separate medal," the winner said through a translator. "I have enormous respect for her. It is exceedingly hard. Just looking at these people inspires you."

I assume by “these people” she must mean left handers, I mean, it isn’t often that Olympians see left handers. Or was it because she was white she should get a separate medal?

Du Toit did receive a special gift from officials at the rowing basin: a traditional Chinese drawing encased in a wooden box.

And see, this is why I shouldn’t be a spokeswoman because I don’t take that type of shit, as much as I might play the crip card, or milk the whole “poor crip” for my own evil ends, I don’t takem not a "special award", being called, ‘these people’ (just a note to able bodied people reading this, we are actually just known as People, females or “better off barefoot and pregnant!”, whatever works!). I would have stuffed the painting down my prosthetic and limped off on it thanking the officials. Yup, we’ve come so far. Oops, that’s you, here in Canada, we are still a few decades of education away until we work UP to our official Olympic coverage using the phrase, “these people.” And no one giving a damn.