We woke up tonight at 1:00 am and snuck out to see the meteor shower. This week for the Northern Hemisphere is the week where the meteor shower is best (only the moon is shedding light on the stars). The best viewing time where we were was between 1:00 am and 2:00 am and so with a few blankets we got into the van. 
We drove past beacon hill park, which has no lights and then out to the cliff side park behind it so the hill blocked the city lights. There, with as much dampening as we could get, we got out and wheeled to a bench and watched the meteors. With the moon and in the city, us sharing lap and shoulder blankets,
we could not/did not see many. Most were between the big dipper, the horizon, and the little dipper.
We each stared into the sky, with a quick, ‘ohhh, did you see that one.’ And after a bit of staring up our necks were hurting, and so I chanted slowly, ‘Star light, star bright….show us our meteor tonight.’ It didn’t work the first time but the second time
there was a vivid flash across the night sky of a second of a meteor hitting our atmosphere and burning up, a large one making vivid fireworks. We called it a night.
It was not the best of days before that, since I managed to smash a door....the door leading into the apartment....with my toe.
Okay, yes, I was going outside for the first time in a LONG while and I had INDY on the SLOWEST speed. Our outer door requires turning and pushing a lever down to open the door, you can’t just push it forward with an auto lock (oh no, too many thieves!). And then, through it is on the far side I am suppose to push it forward by leaning all the way forward and even then it would not be enough to avoid INDY hitting the door. So we will have to deal with that issue another time. But what happened is, I have been having a rapid degeneration of peripheral neuropathy in my hands and arms in the last week or two and I reached out to grab and turn the lever down to allow me to push the door open……..and I missed. Yes, I missed a three inch lever completely, and my left foot, particularly my large toe, hit the door. I tried to stop but with the problems of the peripheral neuropathy, that was probably a half second delay, which was enough time to, it seems, crack the door. No, I can’t feel the feet but I will have it checked out (you know, once I get a GP). This depressed me terribly because I was going out due to enormous pain.
I don’t know if you have had bad pain, like I have described where it just comes and comes and never lets up, but it is hell. And recently my spine and my hands, which I use every day to ‘lock’ nerve paths in place have been giving me constant pain. Total pain. So last night I tried to watch a DVD series that I had bought. Only I had bought season two of a series I watched from when I was AB. And now, right now, it was just too slow. Can you imagine being in really bad pain and then watching a TV show like Murder She Wrote or another slow show where you are like, “Oh come on! Stop interviewing them it is X and just finish the DAMN show!” – basically I need the equivalent of riveting or fast shows: the cocaine of TV. I had just finished Dollhouse by Joss Wheaton which did that for me, and resold it but this one was not. So here I had wasted what little money I had getting a TV show new release which did not distract me from the pain. And my goodness, the pain. It just washes over you, and washes over you. This picture is the only one I can find now.
One day I will find the right picture to show the way I can not describe it because even if you scream or you cry or you smash you head against the wall the pain just keeps coming down and will keep coming down as long and as hard as it can. Linda found me, crying, my hand claws curls in my lap, sobbing and she helped me to bed and I cried the whole way. And she told me that she would give me the extra opium pill to go with the night pill (the strongest pill we have), and I cried harder. I told her I had taken that pill, the fast acting opium pill which is exceeding my limit and damaging my liver 30 minutes ago and couldn’t take another for 4 hours. She said, if I couldn’t sleep, then we would damage my liver some more. It was a brutal, ugly, heart wrenching time, when even to pull me upright to not aspirate my pills while swallowing, Linda had to hold me and hear me scream, and moan as she pulled me up. She had to wipe away the tears as could not move and then we tried to sleep.
So today I was trying to make sure that didn't happen again. I was going out to watch Psych Season 3 from the DVD rental store. It has been out a while now. I wanted to make sure Linda didn't see the previous night again, that's all.
Instead I broke the front door’s glass, and likely my toe.
And I called Linda and she was, “It is okay we have renter’s agreement. But maybe they won’t cover this.” And I was near hysterical because I know we were trying to save money and had really no savings and then I do this. I do this. I hated being disabled, I hated not being able to even get a job serving donuts much less a research or government job. I hated it. So I hated myself. I went down to the DVD rental store. They didn’t have Psych season 3.
I came home and that was it, I was broken and I wasn’t going to be going out in INDY again. I was and still feel a child, unable to do the most basic things,
and emotionally scared, as I am only able to remember my failures, like this. Because I CANNOT LEAVE HERE with my current inability to open the door or stop even on the turtle indoor speed, without the ability to react, and with a door I was no longer strong enough to throw open and ‘race’ through before it smashed down on me (because a slow closing door lets THEIVES in – can you tell the manager is paranoid about thieves). The Manager called the owner. Owner says the cost is on me. So much for the freedom INDY was going to give me. I can’t have freedom if I can’t enter or leave the building, or if I live somewhere that my non-AB body limitations is going to cost me hundreds I DON’T HAVE every time I try to leave the apartment. And what about the stores I try to visit. So I am house-bound now, not just choosing to stay inside.
Linda came home and gave me a present that Cheryl had left before going on her trip. It is a Skull bowl, and here I am with my easy grip spoon mixing a broth (where is the dry ice to bubble over?). 
Actually I had ice cream in it tonight! BWAHAHAHA! It helped, but I still feel like a total screw up particularly with tape across the door and a big sign. And I did it with my toe. Property really is more important than humans in this town.
But in the end, like the elusive fireflies, I got to see some meteors, about three or four bigs ones and as many little ones. I hope, when Hawaii is possible and we go, that we go to the big Island where the telescopes for many countries are (including the largest in the US) as there is no light on the island in the middle of the sea and they say the stars leap at you (or you at them). That is something I want to see. A blanket, a scarf of stars covering me. Everyone I love is here on earth, but maybe I would geek a while and like to explore, just a little, up there, to places where none has gone before.
So how and when did I get into a shotgun wedding? Well, it sort of just crept up on me, and before I knew it there were official people standing there going: Elizabeth, here she is. And they get us together and I am told to not feel nervous and then that is it – we are wed, or in some sort of common law marriage, and people are telling me that since we will living together every waking hour, I should get intimate with her.
Wha? No, I don’t want to lie down on her, I prefer to do that in the intimacy of my personal room, thanks!
While this may seem a bit odd but it is an experience that most people with limitations and disabilities have. There is no vow, but there are official people (your OT, a PT, a Doctor) who say, “Jane, this is your (insert assistive device here)” And thus you are wed.
You name it. You take it everywhere; you curse it, you baby it, you have mixed feelings and sometimes, after a while you love it (or you hate it, end up getting divorced and are seen about town with a new, younger model with people going, “Talk about a midlife crisis”). Cheryl says that it is more of an ‘arranged marriage’ as sometimes if you are lucky you get to see a picture or are shown several pictures and they never really show everything and then weeks/months later you are just left alone to find out all the little things they didn’t TELL you about (and the photo doesn’t tell you about either).
So I have a new Electric Wheelchair which I have so far name DT (that Damned Thing). While my manual titanium wheelchair if it had a name would be more like “Let’s fly!”
And with the curbs around here, means me flying OUT of the wheelchair but still, we fly.
But this new wheelchair was a total shotgun marriage: I didn’t ask for her, I didn’t really want her, I tried to suggest to several others that they might like her instead; please “take her!” But the officials like the OT, PT, and Doctor ganged up on me and told me I need it.
Yeah, need it. I haven’t quite integrated it into my identity yet.
But you know a lot of people have the same feeling the first time their doctor gives them a cane. They don’t want to admit that this is who they are, or where their body is at this moment in time (the classic is that they ‘forgot to bring it” which we all go, “yeah, yeah!”). So whether it is braces for EDS, or a wheelchair for M.E./CFS, or investing in a good bed and a portable chair for fibro, M.E./CFS, or yes, a cane for everything from arthritis to back pain, or a scooter instead of two canes, a seated walker, even an eyepatch: see, those kind of things are for OTHER people, not YOU! (please note, eyepatch does not come with thong, tattoo, opium den or minions!)
See, YOU can do life without (insert assistive device name), because THOSE people, those who use them, just don’t want it bad enough, they are wimps. So whatever the device is, you go through the “Not me” crisis, and that is where I am. Maybe it is that I don’t want to come out of the closet (is there a rainbow badge for “I use my assistive device with pride”)? Whatever IT is, I seem to be going through what Dave Hindsburger went through when he snuck into work, not wanting them to know he had a wheelchair. He actually pulled this off for over two years, having to remain at his desk, until he had a reputation for being a bit of a non-participator (because he never went to the lunch room, his leg wouldn’t let him). Now he rides his electric wheelchair with nonchalant pride.
See, I have nothing against electric wheelchairs (oh God, is there where I start going on about how, “I have friends who are electric wheelchairs!”), but this wasn’t described to me as the ‘Speedmobile’ that I needed because I just wasn’t going fast enough. But as my ‘Final Chair’. Good, nothing depressing about that. It has added features like cheek and head controls as well as puff and sip all ready to be added on as well as a feeding tray and they said, ‘other devices already paid for.’ I don’t know about you, but I have a hard time getting exciting about a feeding tray for when I am too weak or confused to eat by myself (the dietician does NOT recommend a diet solely of ice cream).
So no, I didn’t really want to admit that this was the wheelchair for me. I mean sure I didn’t actually leave the apartment anymore because I wasn’t sure I could get down the carpeting in the hall and back, or up the hill from the village, but that doesn’t mean I was ready for this, my ‘Final Chair.’ So some psychological adjustments are still being made. I’d rather they figure out a way to give me leg braces. I still walk a little, holding on to things, often it is more like a contained fall, in the morning when I have the energy. So being told, this is the wheelchair you will be spending 12+ hours a day in; this is the tilt and recline so you can keep the pressure sores from the parts of your body you can’t feel. Here you recline so you have your seizures in the chair and then can lie paralyzed for a time,
This way I don’t break an arm or endanger my life while Linda is at work. Here is the webbing, like they use on parachutes to keep you from sliding out or arcing out of the wheelchair like I did during the fitting. It is a bundled package of everything that I know I shouldn’t be ashamed of but I am.
Yes, that’s right, the whole stupid ‘Will to power’ and ‘If you eat the right food and exercise’ from our society got to me. So I AM ashamed that I am so weak, I AM ashamed that I have seizures and drool, that I pass out. I am ashamed that by mid-afternoon, and by evening I need a head rest to support my head, that I need a upper body support to support my torso. That this is the wheelchair for someone who is helpless, in not just one, but many areas. It is hard to accept that being helpless, that being weak, that being unable to talk or use part of my face isn’t somehow my fault.
That there isn’t some exercise or by trying harder I can’t stop this from happening. This is a wheelchair created for a degenerative condition and approved by Blue Cross in 2 years (normally five year) after my last wheelchair. They, nor does my Physical Therapist or Occupational Therapist believe that I am coming back.
They believe, strongly; strong enough to get this wheelchair against my wishes, that this is what I need, and will need more as time goes by.
When someone tells you that and then rolls out a wheelchair that is pre-approved, it is hard for me to come up with a great name, and feel good about it. I think it is like recognizing that you need a cane, or braces; you may be 60 you may be 20 but you need a cane or braces. And eventually you recognize that this is PART of who you are; yes you are more than just the cane or the braces and buckles
, but also that you will never go back to before. That there is no way back to ‘before.’
I’ve always tried to look my disability in the face and get ahead of it and yet this one, I didn’t want to look at. 
I imagine as time goes by I will love the chair for X, and Y and Z and hate it for B and C and D. It is an adaptive device, it is not me; but it is what I use now. This wheelchair is more than a mobility device; it is a safety and lifestyle enhancing device.
This wheelchair has a flip up drink holder and wireless mouse tray. It is meant to give me a better quality of life than I could have without it. I am fortunate to have a Physical Therapist like Janet who fought for me when I wouldn’t fight for myself, who is making sure when she is in her new job, I will still be able to be Elizabeth F. McClung. I will be able to go, “What?” and wheel out from behind my desk, with my oxygen strapped on the chair and motor down to Monday Magazine and talk to them about the latest Victoria atrocity. As I can, on the whim of a spring day, wheel down to the store, or to the park, by myself, not needing any assistance and make it back without worry, even if I have a seizure along the way. A wheelchair and $1,000 cushion so that I will still be able to blog and use the computer to enhance my quality of life.
But, like any marriage, there are bumps and I haven’t quite reached the honeymoon part where I am in love with it.
And then the part where I see all the flaws, and then the part where I know how to use it best, and try to live with and avoid the flaws. All of us who use assistive devices know about this. And while for me it is the Electric Wheelchair (still unnamed – maybe IT should be named INDY!), for you it may be an elbow or finger braces, learning to rest and sit down, learning to use the wheelchairs at malls due to your fatigue. Or it could be accepting that sometimes a little pill taken in the morning does make my mood better and more stable and isn’t something to be ashamed about (it does and I’m not!).
We all have or will face our moment where we have to admit or it is simply thrust upon us, this marriage to an assistive device. There have been canes and staffs as long as recorded history, 
wheelchairs from the 15th century, and braces for at least 150 to 200 years, probably more like several hundred. While prosthetic legs and arms of some kind for hundreds of years. Glasses for a few hundred, and medication for depression and such for several decades (it REALLY is far better than Electro-convulsive Therapy!! Or being soaked with wet and cold water to ‘balance your humours’ as it was from several hundred to only a few decades ago – or if you are here in Victoria/Vancouver, still going on!).
Why don’t I love INDY? Well, like some arranged marriages, I am a little bit bitter at the whole ‘arranged’ part. And the idea that they know better than I do what I need or will need. Arg! Just keep saying it Elizabeth, “There is no going back” and “There is nothing to be ashamed of” It is just I have been stripped of so much that makes me what I thought I was: I am Dr. McClung to no one, 14 years of education stripped away
as soon as anyone sees the wheelchair; I am not an athlete, I am not an intellectual force to be reckoned with and I doubt they would believe I am an author and writer. Since apparently if this blog reduces to grunts, I become more “believable.” I learn that I am proud after all. But don’t worry, I will get over it, and then, who will stop ME? 
See, I will have a new force to run people over with, literally, in TANK mode.
We drove past beacon hill park, which has no lights and then out to the cliff side park behind it so the hill blocked the city lights. There, with as much dampening as we could get, we got out and wheeled to a bench and watched the meteors. With the moon and in the city, us sharing lap and shoulder blankets,
we could not/did not see many. Most were between the big dipper, the horizon, and the little dipper.
there was a vivid flash across the night sky of a second of a meteor hitting our atmosphere and burning up, a large one making vivid fireworks. We called it a night.
Okay, yes, I was going outside for the first time in a LONG while and I had INDY on the SLOWEST speed. Our outer door requires turning and pushing a lever down to open the door, you can’t just push it forward with an auto lock (oh no, too many thieves!). And then, through it is on the far side I am suppose to push it forward by leaning all the way forward and even then it would not be enough to avoid INDY hitting the door. So we will have to deal with that issue another time. But what happened is, I have been having a rapid degeneration of peripheral neuropathy in my hands and arms in the last week or two and I reached out to grab and turn the lever down to allow me to push the door open……..and I missed. Yes, I missed a three inch lever completely, and my left foot, particularly my large toe, hit the door. I tried to stop but with the problems of the peripheral neuropathy, that was probably a half second delay, which was enough time to, it seems, crack the door. No, I can’t feel the feet but I will have it checked out (you know, once I get a GP). This depressed me terribly because I was going out due to enormous pain.
One day I will find the right picture to show the way I can not describe it because even if you scream or you cry or you smash you head against the wall the pain just keeps coming down and will keep coming down as long and as hard as it can. Linda found me, crying, my hand claws curls in my lap, sobbing and she helped me to bed and I cried the whole way. And she told me that she would give me the extra opium pill to go with the night pill (the strongest pill we have), and I cried harder. I told her I had taken that pill, the fast acting opium pill which is exceeding my limit and damaging my liver 30 minutes ago and couldn’t take another for 4 hours. She said, if I couldn’t sleep, then we would damage my liver some more. It was a brutal, ugly, heart wrenching time, when even to pull me upright to not aspirate my pills while swallowing, Linda had to hold me and hear me scream, and moan as she pulled me up. She had to wipe away the tears as could not move and then we tried to sleep.
And I called Linda and she was, “It is okay we have renter’s agreement. But maybe they won’t cover this.” And I was near hysterical because I know we were trying to save money and had really no savings and then I do this. I do this. I hated being disabled, I hated not being able to even get a job serving donuts much less a research or government job. I hated it. So I hated myself. I went down to the DVD rental store. They didn’t have Psych season 3.
and emotionally scared, as I am only able to remember my failures, like this. Because I CANNOT LEAVE HERE with my current inability to open the door or stop even on the turtle indoor speed, without the ability to react, and with a door I was no longer strong enough to throw open and ‘race’ through before it smashed down on me (because a slow closing door lets THEIVES in – can you tell the manager is paranoid about thieves). The Manager called the owner. Owner says the cost is on me. So much for the freedom INDY was going to give me. I can’t have freedom if I can’t enter or leave the building, or if I live somewhere that my non-AB body limitations is going to cost me hundreds I DON’T HAVE every time I try to leave the apartment. And what about the stores I try to visit. So I am house-bound now, not just choosing to stay inside.
Actually I had ice cream in it tonight! BWAHAHAHA! It helped, but I still feel like a total screw up particularly with tape across the door and a big sign. And I did it with my toe. Property really is more important than humans in this town.
