Wednesday, 1 May 2013

Confirmation of Disability



My fun world of denial hit a snag this week. A big slap-up-side-the-head, marching band, Vegas lights and feather clad showgirls, snag. You see there's this weird little lie I've been telling myself. Although I've been sick for 7 years, although I use shower chairs, a walking stick and on occasion bring out he big guns in the form of Bernice, my wheelchair, and her new, much comfier, replacement Vera to go to a shopping centre or comedy festival, I have somehow managed to overlook the fact that I may be disabled.

You see denial is amazing. It's up there with fingers in my ears, closing my eyes, and saying “I can't hear you. I can't hear you”. Although at some level I knew that I was actually, shall we say, less-functional, than before 2006 and even less functional again in the last year. Despite the fact I have difficulty with my stairs, that I can't stand for long, drop things, walk with either a catch-my-toes shuffle or wide uncoordinated gait that would do a drunken sailor proud (my body likes to mix it up) I have managed to compartmentalise, deny, or at least use a meh attitude to get by.

I have managed to make it this long without the word “disabled” being written in my file. Not that I necessarily have a problem with the word or the concept. It's not that I even object to it being applied to me. Well at least not in my logical, practical moments. But, and because I am a long-term resident of Crazytown, part of me said if it wasn't written in my file, then it wasn't really true. I've said it before and I'll say it again, I should be studied.

As of two days ago it all became fact. Unequivocal, signed off by a doctor, fact. Now if I was a wearer of big girl undies or had eaten a can of Harden up, Princess for breakfast then I would probably be able to just see it as another point in the road that I had to cross. I'd recognise that the piece of paper currently burning a hole in my handbag will allow me access to mobility aides and other help that I would otherwise not be able to afford. I'd be all matter of fact, practical, glass half full, blah, blah, blah. Unfortunately I am not that girl, and am currently in a wee bit of a funk about the whole situation.

Logic is not my friend in this matter although I am sure that at some point that will kick in, but hissy fits, weeping into cornflakes, pouting and the consumption of large amounts of baked goods must occur, before that point is reached.

The OT who I have been seeing has been using gentle encouragement and that “come on now Michelle, time to put those big girl undies on” look to get me to this point. In truth she has gotten me further in the last few weeks than anyone else has in the last 7 years which makes her a bit of a rockstar OT. She has organised my paperwork, had me trying out wheelchairs and basically giving me a reality check, for which I both love and want to stick my tongue out at her. Between her and my physio it has been a hard lesson to digest that I am worse than I had allowed myself to believe. In my mind I was managing pretty well, it was only after assessment that I realised that my idea of managing well, made me the illness equivalent of one of those deluded individuals who firmly believe they are the next American Idol, but are completely unaware that they are tone deaf and have the rhythm of a brick.

So I sat in my GP's office on Monday and handed her the sheets entitled Confirmation of Disability and Disabled Parking Permit and watched her sign away my delusions of still being an able-bodied member of society. Again I was subjected to another example of how clear it is to others, even those who see me sporadically, like my GP.

Now that it's done my family have come out to say “about time, dumbarse”, (okay not everyone one added the “dumbarse” part, but the tone left little doubt that it was implied). It seems I was the only one left who had delusions of my ableness. My ideas that “others need it more”, or “others are worse than me”, was apparently total malarky. It's amazing how completely blind you can be to your own situation. How you can tell yourself lies and believe them completely. How the picture of me I constructed in my head was more fairytale than reality. Denial is a very warm and enticing place. I was quite happy living there.

So I sit here in the hospital sucking down my saline and digesting my new existence. I'm still the exact same person I was Monday morning before the forms were signed. I'm trying to focus on the access it will give me more than the title. As it is I have at least 18mths to adjust to the whole idea before I even have a chance at a newfangled wheelchair. As my OT pointed out (placated me), if I have a miraculous recovery in that time, I can always say no to my new wheels.

It's time to put on my practical hat and be all mature and grown up. But part of me is tempted to just get up quickly and walk at a regular pace from the recliner chair I am sitting in, to the loo round the corner without my cane, just to prove them wrong. Taking a walk on the wild side, baby! It may all end in tears, but damn it would feel good to give it a go.

I'll grow up tomorrow. Promise.

Cheers
Michelle :)

When I grow up – Garbage

14 comments:

  1. I only used dumbarse to be polite. I had much stronger descriptions ready to go ;)

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  2. Love you Michelle. Thank you for your blog. I was given that label and put off work in 1999. I have just come to the realization that I am not getting better, but worse, and that the hope of returning to work and being my old/healthier independent self was delusion. Sucks!
    Terri

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    1. Thanks Terri. I'm so sorry things are getting worse. It's hard to come to terms with the fact that dreams like going back to work are no longer within reach. I've cried a few tears myself over that one. xx

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  3. Living on the other side of the computer from you, I can't help but throw roses in the direction of your undeniable gift of getting experience, thought, and emotion onto the screen. I don't get to see the body you describe, only the words you produce. I see the gift of words, not the gait of the gimp.
    Rock on disabled dumbarse! Keep producing these great works to comfort the masses. What you just wrote above plucked every chord within me regarding "disability". What we think, you write. Keep changing the world one word at a time. Forget those big girl panties; put on a laptop.

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    1. Thank you for your lovely comment plyle. It is so heartening to know I can make a little difference or bring a little comfort to someone somewhere. I think "Rock on disabled dumbarse!" may be one of my all time favourite comments xx

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  4. Michelle,
    I cried when I read this post. Life is so hard. We are going through the same situation with our 24 year old daughter. It has been very difficult for her, emotionally. Major meltdown after going through disability hearing...and new reality checks about limitations in her life--changing directions--creating a life for herself which is not the one she had planned.
    Hugs and Love to you, dear Michelle.

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    1. I'm so sorry to hear your daughter is going through this especially at such a young age. It's so hard to get to a place where you can be comfortable with it. You rail against the label, against what it means and the illness itself and then somehow get to a place where it's okay. I'm not sure how you get to the okay place but I like to believe it is possible. I hope you daughter can get there soon, at least she has a mum who cares and stands by her through all this. That is a gift. Love to both of you xx

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  5. I think we convince ourselves we are more "able" because we have to, or think we have to, to keep on going, getting up and doing things, etc. There's a better way, I'm sure, to be realistic about our abilities and limitations. I'm not there yet either, and I do also still get all sorts of bent out of shape when I have to do something like apply for disability accommodations at work - something I'm in the midst of right now. You've perfectly articulated the way it feels to sit down with that paperwork and the official label.

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    1. Thanks Dyspatient. If you find that better way please make sure you let me know too. I sometimes think it's as elusive as the Lochness Monsteror the Yeti! :)

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    1. Heheh thanks. I managed to suck up my pride and even get my disabled parking ticket, I'm on a roll baby!!

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  7. The first time I "applied" (was forced to apply) for a disability permit, I opted for a temporary one. I had it in my head that I was only going to need the extra help for a short period of time. Maybe only during the uber hot southern america summer months (where the humidity and the temperature are both triple digits). Surely I would be so much better once the weather cooled down a bit?! As the expiration date neared, I was urged by family and coworkers to apply for a permanent disability pass. I went through more denial. Surely I didn't need a permanent one. I wasn't even 30 yet, and my mother who has survived 3 strokes beginning at the age of 36 and had a severe limp, hip problems, etc as a result didn't have one. I thought the doctor was going to look at me like I was crazy when I brought in the application. She's an autonomic specialist and her response was "I'd been wondering when you were going to bring these to me." Apparently everyone in my life but me had come to terms with the increasing severity of my illness and my true limitations. That was years ago. Now my son (6 yrs old)comes and puts my head in his lap when I need to be on the floor unexpectedly . He kisses my forehead as he brushes the hair out of my face. "Mommy, you did XYZ again, didn't you. You know you're not supposed to do that." Even he has better recognition of my abilities. I guess I'm trying to say that even with the official label, the passes, and the aids, I'm still in denial about what I can do and how long I will be affected (I'm young and still hope to "grow out of it"). Maybe someday I'll put on my big-girl panties and admit it. For now I'll continue to look for races to train for that I will never compete in and buy compression workout clothes that will never see a minute of exercise and only get worn underneath clothes when I go work (at least they don't go to waste!)

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    1. I'm so sorry to hear you are dealing with this to Portia but must admit I feel a bit of relief hearing that you too are having the same issues. Weird how everyone can see our limitations but us. I really thought that my doc and the parking permit people would think I was an idiot asking but nope it was no issue. Such an anti climax after all that build up I had in my head. Big hugs babe. At least we all know we're not alone xx

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx