Tuesday, March 24, 2009

My shotgun wedding: no going back

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.


Stephanie said...

I am excited for you to be able to go places now. One of the things I hate most is being stuck inside. I hope you come to terms with Indy; the whole "life-enhancing" bit seems like a good thing to me. ;) (I understand what you mean about the arranged marriage though! Yuck!)

Dave Hingsburger said...

You are quite right, there is a transition process whenever there is a 'becoming' in life. I had a tough time transitioning from one job to another, from one size of pants to another, from walking to rolling. Each involved a new way of seeing myself, but also a new way of presenting myself to the world. You have a good memory about the 'walking at work' phase of my disability. We talked about it over Mexican if I recall properly. It was partly easier than hauling the chair out of the car, it was partly because the walk in I could do even if the walk around was out of the question and ... I am now embarassed to say ... there was also an element of passing. Like you, I now have Henry, my power chair, and I love the guy. He's strong enough to carry me, he's willing enough to go where i want to go, he's cool enough to keep secret some of the things that I do. All round, I'm glad I've got him. Transitions can be fun ... fly.

Lickspittle La Folle said...

This is a topic near to my heart. Actually, to be technical, it's near my stomach. After my cancer I had to have a P.E.G. tube installed. It goes in at the top of my stomach, and is the only wasy I can get sustenence. To feed, I have to hook it up to a pump that pumps liquid nutrient into me for several hours a night.
I hate the danged thing. I will find any excuse to not use it. Never mind taht fact that I've gone from 180+ lbs to 143. The MD says that I should be at 165. If I drop below 130, I have to be hospitalized. But quite often, it feels better to be starving myself than spend the night hooked up to the thing. And Its a constant reminder of how very isolated I am from 'regular' folks. It's diheartening just how many basic human interactions involve food. And whn you -cannot- eat, how very alone you can feel. Now, Ive got some terrific friends. Ive got folks who have been so supportive and loving, and generous to me. Elizabeth's cards and notes to me have given me a real push to keep going out there, even when I want to give up. But I can realy empathise on just how damnedly -hard- that can be, esp with a big-old-hunk-of-reminder sitting out there in peoples faces....
And my little tube can be tucked away......

FridaWrites said...

Great post--here I was imagining a secret past we didn't know about yet, but this is the recent past and present. :) Though it's good to be able to get out more, it is easy to want to cling to our old modes that don't work so well (your manual, my smaller more compact scooter, or walking).

I admit I still sometimes have an uneasy relationship with my scooter. I think that's because of what blogger brokenclay refers to as intermittent disability, though lately mine's been less intermittent and more constant. I usually don't use the scooter extensively in the house but right now I am since I could not do the physical tasks I need to do otherwise. So I am taking care of myself that way, doing what I need to sitting down. My pain level is actually less--maybe because of another short remission, but maybe because I am being more active, but without doing what inflames my spine so much (standing and walking).

The marriage "mismatch" and age difference is quite striking in our cases--one usually doesn't see someone that young moving via wheels.

Neil said...

Well, the wheelchair does give you the opportunity to create motorized costumes; someone made a Dalek to go over a wheelchair (see http://www.youtube.com/watch?v=lxfplCnsDcs&feature=rfw-rec-HM-fresh+div ).

While the eyepatch may not come with minions (and why doesn't it??), surely the squirrels must be your minions; that's why they come to you so quickly.

A more sober comment: once again, dear Beth, your blog is strewn with particularly appropriate images - I am in awe, especially since I have an idea of how much work it is for you. It can't be easy to train squirrel minions to take such good photos. :)

Love and hugs,

Kate J said...

Well, I think Indy looks pretty fine, and at least she'll give you some independence of mobility and will I suppose give Linda some peace of mind. I say "she" because motors, ships, locomotives and the like are always "she". Hmmm... why, I wonder? Is it perhaps so guys can feel good about all the care and attention they lavish on these machines?
Are you allowed to customise the chair? I mean, can you hang little spiders, skulls and Hello Kitty stuff on it? Add silver trim or pink flowers? How about an official launching ceremony, complete with bottle of bubbly, and you putting on a Queen voice and saying "may God bless her and all who sail in her"...

And you can even still be an intellectual and an academic... just practise a Stephen Hawking-style "computer" voice, that'd surely impress people.

Sorry, I'm being flippant. I know,really, that it can't feel good to be in your "final" chair... but let's hope she lasts you a good long time. A very long time indeed.

JaneB said...

Tank mode does sound fun...

I had a small, small lesson in that necessary humility today - I had to give a lecture whilst sitting down, because my back/hip is playing up (too much computer chair and stress making my back tense, too much standing and teaching last week, general annoyingness of body messing me around) and it was too painful to stand for more than a few minutes. But saying 'I'm going to sit down' feels like saying 'I'm weak, useless, incompetent, unprofessional...'. As did hobbling out of the room afterwards (I chose to sit on the desk so that I was higher than the students and they could see me, and it was too hard and made everything worse... and guess who left her stick in her office?). I know in my head that that's not true - giving in to it and not coming to work to teach the class, stick and all, would have been more unprofessional - but at gut level, emotionally, it feels like a failure. And don't even get me started on how carefully I hide my morning anxiety pills and evening depression pills in case anyone sees them and guesses... I have been known to turn the box inside out before I put it in the bin, just in case someone judges me on it.

Much much empathy for these new adjustments... and hoping you come to be good, companionable friends with DT (unless one of the add-ons is a 'special intimate toy function', in which case you might fall in lust with it briefly?)

Rachael said...

Ahhh, the electric tank! My daughter (thanks for her postcard by the way, it's awesome and she loved it!) has just got a new one and she thinks it's fab - mostly because it's twice as fast as the old one. And she's grown, so it fits her better. So she doesn't have much to get over.
On the other hand, I'm rather ashamed to have a whole lot of negative emotions about the new van that required - it's huge, unwieldy - the hoist and seatbelt systems for the chair don't work nearly as well as I thought, blah, blah, blah....But she's so happy with her new chair! I guess it's about expectations, hopes and dreams as much as anything. I'm glad your chair means you can be MORE of yourself - even to planning on running people over....!
Rachael from NZ

yanub said...

Mwahahahahaha! I picture you now, devastating the streets of Victoria in your armored tank mode. Henshin for disability justice!

To be serious, I am glad you write about the difficulty of accepting new levels of assistive devices. Stephen Deal wrote about this recently, too, and I think it is a very common issue.

Dawn Allenbach said...

Hey -- I am in a power wheelchair (we typically refer to it as a POWER w.c. to distinguish it from the device used to take the lives of death row prisoners -- which you are NOT!), and you better believe that people see me as an academic because I don't give them a bloody choice. Sure, people make assumptions when they first meet me, but I force them to get rid of their ridiculous assumptions. You did it in the manual, you'll do it in the power. You are gonna be f---ing AMAZED at the avenues open to you now.

My arranged marriage came at 13 -- to a set of rods attached to my spine to help straighten some of my scoliosis. I was afraid, but my parents forced me into it, claiming it was "for [my] own good." During the weeks of recovery, the pain was horrible. I lost some of the function I had from being in bed so much. I hated my parents for making me endure all that.

BUT . . .

I firmly believe I would not be alive and 37 if they hadn't forced that surgery on me. I was losing so much lung capacity and function that I would've been lucky to graduate high school.

Remind me to tell you sometime about my adjustment to wearing oxygen at night.

There's a transition. Allow yourself to explore all your feelings. Just because you have a power w.c. doesn't mean you can't still walk that small distance in the apartment when you have support and the energy. But for Pete's sake, don't block out the positive aspects of it -- the gained freedom, the energy conservation, the comfy-ness of a $1000 cushion. Mine is only $500, so yours should be twice as cushy.

You'll adjust, as you have all along, and be even more Elizabeth F---ing McClung.

thea said...

My suggestion is some cogs and bits and pieces added for a bit of a steampunk look. I know this would appeal to me... at least more. A Difference Engine... that would be different.

I don't use a wheelchair so I'm not having to think in the same way that you are. But there have been changes, all the same, and I'm still working on getting over those myself!

But I know how pleased I was to hear that you had something that would make mobility, and your life (and Linda's life, and Cheryl's life) easier. Because it's worth it, for all of you. You're all valuable enough to be able to go see squirrels and go out and take photos. SO I am really listening when you say this is hard to accept and process, particularly the bits about such a chair being approved with the add-ons for when you need them... but I'm also cheering whoever had such a sensible idea to tick the boxes and approve the paperwork so you could continue to get out and have some control over your life!

Lene Andersen said...

Yeah, you can tell yourself it's a tool that will make your life easier as much as you want, try to believe that you'll have more energy, be more independent, live more and... no sale. It takes a while to get over the resentment, takes a few experiences where you can see how it makes your life better instead of the "oh fer fuck's sake, what's it doing now??" that tends to permeate the early days. I hear you.

I think you should call it Indy instead of DT. Maybe that would be a first step? Remind you of the housebound no more?

It looks way cool, though.

Tammy said...

No one likes to be forced into something, or have something forced on them. Even though you intellectually know that it is what is needed, you want to be able to be the one to make that decision.
I think you will eventually love some of the independence and the convience it offers.
You are Dr. McClung...an electric chair can not take that from you.
I love the analogy of a shotgun wedding. It's so true. I felt that way with my cane, and recent wrist brace. I need them at times...but how I hate them at the same time.

cheryl g said...

Change is never easy and the arranged marriage to our assistive devices just makes that clearer.

When the marriage is to a device that is the tangible evidence that there is no going back to what once was it is even harder I imagine.

I am hoping you are able to reach the point where you find Indy or DT to be a positive change in your life.

You have used some great pictures to illustrate the post. If the eyepatch came with minions, tattoo, opium den and thong everyone would want it.

Elizabeth McClung said...

Stephanie: I am glad to be able to go places, but now, after having failed a few times, I need to build up my courage and venture out again. INDY (I'm Not Dead Yet) and I need to get to know each other better. And I guess people need to get used to me in her.

Dave: I am sure that I will be very grateful that I have INDY once this initial gifting passes; when you are given something and told it has a tray for feeding you, that's not a cheery gift! But once I can integrate her into my identity, then I hope to face forward once again and take on my disease, and the rest of the world, or at least Canadian disability rights!

Lickspittle: Yes, exactly, the push away controls already have the puff and sip control panel in place; I cannot avoid looking into this mirror. Is it a relief of sorts to have a head rest? Yes. Do I like that I have to go around straped in (it isn't a seat belt but a webbing system) because I have seizures, because people immediately know I am other - I am what they thank GOD they are not, you poor thing (if they assume I can talk at all!).

So yes, I can understand not wanting to use the tube, avoiding the tube, avoid the subject, avoid facing that you will always be 'other' - because our society in the west demands individuality....but in very narrow margins, and you like playing with the individuality they allow you (like lickspittle) which is why I also think you hate the tube so much. No joke, or drama every really takes it away - and the same will be true with me. I might figure out a way to get them to stop saying it to my face, but what happens when I roll away.

Thank you very much for commenting, I appreciate that.

Fridawrites: I worked so hard to get that titanium chair and I worked so hard to make it a chair that went boxing or did badminton, how can I leave it behind now? Because I have to accept that those parts of me are left behind as well? That just hurts!

Yes, I guess I will learn what questions people will ask now that I am in this chair - will they assume it was from a car accident or rather that I must have been in it since birth - that the wheels came out of my mother first, with me attached? I will find an equilibrium, but it will take a little while, and I think this is something that stikes us again and again - we don't WANT to let go of that part of us that was more mobile, that was not now.

Neil: I DO have an eyepatch for most nights, and it has blue lightning on it, so I guess all I need now are the tattoo and more opium.

I started this on um, Saturday I think, the photos took several hours.

Kate J: I can customize INDY, and the black on the low casters is a sparkling black. I can put all sort of decals on it and Cheryl and Linda are already salivating about how to trick it out for Luminaria.

I think I may pass on the pink flowers. It can get in the van, so I CAN travel with it but will be going to Booth Gardner with the Manual as it can be pushed and I will not be alone. But yes, looking there for ways to trick out INDY would be a good idea - I can FINALLY put the PURE GOLD hello Kitty decals I bought in Japan at the store in Kanazawa which does 95% of all the gold for Japan.

Jane B: It doesn't sound like a small lesson at all, it sounds like something very difficult that simply had to be endured and done. I am really proud and hope that I can face my 'what must be done' with as much calm and will power.

Yes, emotionally there is shame, not matter how much it is explained to me that is isn't my fault that is it a disease, etc. I worked myself too hard to accept that there is NOTHING I can do - or very little. As for the meds, since I am rather extreme off them, I am very glad to be on them. I hate however the way I am and have constantly be judged over the past several years regarding that - "Female, history of depression, been raped - must be PTSD or some mental issue" - I once went into a doctor with bronchitis - coughing up stuff and he wanted to give me prozac!!! I will not get started on how steroid rage is actually just testosterone and how if males were held to the same assumptions female were, they would all be given testosterone dampening agents instead of trying to find the REAL diseases until it is too late (sorry, if that didn't make sense, it is just, to find out AFTER some specialist has dismissed you that your GP or the specialist letter starts with 'female with a history of depression and side effects of sexual abuse...' - Actually, I don't HAVE depression, because I take the pills. But what was the only think on my file for workers to see in giving me home care at Beacon for a year: Depression - no wonder I wasn't get help in the shower!

Sorry that probably did not add to your anxiety about being judged. Darn it!

seahorse said...

This is a great post, and speaks to me as one who is similarly awaiting a power chair. I've been waiting so long I'm looking forward to mine, and yet you capture so honestly the bitter sweet quality of this arranged marriage. I'm sure I will feel many mixed emotions too. I'm hoping to get mine in time for BADD

Elizabeth McClung said...

Rachael: I am glad she likes the postcard and her new chair. Janet says that the chair is about making sure I LIVE, and I think A. has the right attitude, I have to throw myself back into life, even if that means I go "SPLAT" a few times.

We are also experiencing problems with our van, with the expense of new ones, I can imagine the disappointment of not getting what you thought you would to be pretty high. I'm sorry. But also thank you so much for commenting.

Yanub: Yes, I look forward to 'accidentally' losing motor control of my hand - which happens anyway - off I go! I wish it had tank treads, then I could do stairs!

I think for all people, at some point in thier life will have this experience, or avoid it as so many older people avoid wheelchairs or scooters and would rather use a walker for an hour to go 100 yards than use a scooter to go to the store.

DAwn: See, I knew you would be here to give me a good kick up the butt to help me see reality.

Power, thank you - apparently Linda noticed this too but did not inform me - THANKS A LOT LINDA! Power chair!

Yes, I will, because it is possible right? I will be able to go places and do things now because I want them to happen - which I couldn't before because I was held back by my body and now, once I get over the "boo hoo, I'm not the strong sportswoman anymore" I can do what I can imagine to do and go where I can imagine to go, right?

Yes, please tell me about your adjustment to oxygen all night since that is one of the referrals I am getting!

Your story, yeah, one of those things which make a difference but boy does it suck while you go through it.

Thanks Dawn, I will explore the feeling but I will use it and accept it and integrate it into me and then I will simply move on, and be me! And when I have to go to head controls, I will still be me.

Thea: I should have asked them for a skirting to make it steam punk, and some sort of device with thick fluid and bubles that is attached and goes under my top - so it is very steam punk and I and the machine are one! Haha, that would look great. I do like to keep medical equipment on, I tell people that 'medi-punk' is the new fashion wave!

Yes, thank you for reminding me that admidst all the people like Jimmy the GP, who did nothing, there was two people who made sure that I would be taken care of, as much as possible to have dignity and freedom and choice in my future.

Lene: Yeah, sorry, I know that you probably would like to trade up (or not as you have the chair that is right for you while I am here knowing that YOU know more about my power chair than I do!). So I will have my pity party and move on. I want to last until snow fall and see how truely crap it is in the snow!

I am glad it looks cool, they had to put a larger head rest on it because I thrash about during seizures. Also now I have the fun, "Sores, sore, check for the sores" game - particularly as there is not seperating my skin and bone in many places.

Tammy: So true, part of my resentment is that I did NOT anticipate this, in fact, my mind sort of stopped at, I get to a point where I can't push myself and then it sort of went blank, I didn't/couldn't imagine life beyond that (me and my abilist mind, eh?) - so now to have and find out that this is what will be, and handed it is sort of, "What? Oh?" I want to rebel, if I had the energy to!

I imagine I will always hate it somehow, or be ashamed. But I will probably be protective too - I get really irritated when people play with my chair or sit in it - I imagine you do if someone picks up your cane - "Hey, that's part of me you are toying around with!"

Raccoon said...

At least you've been able to use a manual, and have had people around to help you. My "first" power chair came 2 1/2 months after I was released from the hospital. By that time, the manual chair that I had been lent (too large, no seat cushion, unable to control manually, no chest straps to keep me from falling over) had put me in the hospital for 10 days for bedsores, and then bed rest until they healed (2 1/2 years later)...

Yeah, acceptance isn't always easy. But soon, appreciation will set in. As will the complaints (the power bill, getting the chair in the van). But going to Hoh and not needing to be pushed? Putting bags on the back of the chair, not feeling like you're going to fall backwards?

While you make a good argument for "shotgun," with you not being given a choice on getting a power chair, I'm going to have to go with "arranged," primarily because you got a chance to pick some of the features. Yeah, yeah. Semantics.

Ms.Pet said...

re: Final Chair - That's an AWFUL thing for them to have said to you! If your up to it at some point, I suggest you and your honey think about Chair Fashion and maybe do all sorts of things like paint Goth Images on it, etc. to really funk it up and reclaim it. Hopefully it will at least make everyday reality easier for you.

I understand what your talking about, it's basically the transition from going from an Identity as a non disabled person into an identity as a Person with Disabilities/Disabled Person as well as terminally ill person. It's a process, and it takes a long, long time sometimes. I mean, I've had disabilties my whole life, although diagnosed in mid twenties, and then, I've had Fibro for almost twelve years, but I only, about three years ago, really, truly came to Identify (how I saw myself and want others to see me) as a PWD. And came to start believing in and feeling Disability Pride.


Anyways, congrats(??) on your Shotgun Wedding! LOL I was only able to read about half way down, so, I missed parts of your post. How about "Freedom Chair?" instead of Final Chair? As it gives you more freedom to actually live the days of your life, you have left, embrace them more? Only a suggestion, take it or leave it as you will.

Luce Freedman said...

I went through the same thing, one moment AB, the next a wheelchair user. the overnight minority.

confused about the depression comment, just because you take a pill doesn't mean you don't still have depression in your history or that it shoudln't be on your record, or that you aren't still depressed. you talk about your trauma and the enduring effects enough that anyone that reads this blog would assume depression. how on earth does that have anything to do with steroids, male-bashing, and showering I have no idea. care to explain?

I doubt anyone can go through the process of becoming and being disabled without being depressed.

rachelcreative said...

Not been able to read others comments today.

Another great, honest and valuable post from you Elizabeth. I love that you are open to sharing these things which in fact are so common but not spoken of a lot of the time.

I hope the embarrassment passes and you can turn it on it's head to empowerment. You say you have nothing to be ashamed of and I'm just going to put it in writing that I agree - you don't have anything to be ashamed of!

By the way thank you for commenting on my blog. I really do appreciate you taking the trouble and your encouragement.