Today is a big day for me. We head off to see the doctor to talk about beginning the process that will end in a power wheelchair for me. My push chair is just fine for travel and I can still walk the short distances around the house but I need something to use to get around our new neighbourhood. The long distances I would like to be able to negotiate on my own. Joe doesn't complain but sometimes when I hear his breath coming hard from pushing me, I feel dreadfully guilty. I'd like to be able to travel beside him again. So, a power chair is the answer.
I'm terrified of the process. I just know that this means I've got to put myself at the mercy of a bunch of other people, evaluators, experts, in order to get the paperwork all done so that the chair can be purchased on one programme or another. I don't like going through this kind of thing and go in expecting to have to deal with those who, from the power of their position, learned arrogence rather than compassion. You go one of two ways in this biz - I see it all the time and have discovered that there really is 'a road less travelled.'
But I'm going to put my brave face on and just settle down and do it. I'm going to be motivated by the independance I see ahead of me while I'm dealing with the people the paper and the process. I want so much to be able to say, "No, you stay, I'll go and pick up some bread." I want so much to be able to feel like I'm contributing more to our day to day life. I want to reclaim ground lost.
I was talking to someone at work about getting a power chair and she lost control of her face, she showed ... I don't know ... sorrow. "And that's OK with you?" she said. I explained that all the power chair meant was that I could go longer distances without assistance. It didn't mean anything else. I'm not 'worse' ... I've just adapted in my mind to what my needs really are. Nothing else has changed.
So today I begin a process that will lead to a new chair. And I'm guessing a few exasperated blogs along the way.
9 comments:
It will be ok, Dave. My daughter is 2 years and three months, and she has just got herself a power chair. It has revolutionised her life! Once you get used to the idea, you will love the freedom it gives you. Try and get a chair that moves up so you can reach higher items. Actually, google iBOT and look at that amazing chair.
I hope you get a sooped up chair that will run over any nay sayers in your path. :) And red is my favorite color.
May all of your fears come to naught and may you be pleasantly surprised. May all of the professionals whose paths you cross, be those on "the road less traveled."
Wishing you many good surprises along this journey to a regained independence. Just glanced at the iBOT that heike mentioned...WOW! Talk about adapting the tool to the job!
Getting a power chair is such a freeing experience for most of my kids. I am happy that you are getting the same opportunity!
Lisa
"I'd like to be able to travel beside him again."
"I'm going to be motivated by the independance I see ahead of me while..."
"I want so much to be able to say, "No, you stay, I'll go and pick up some bread.""
"I want to reclaim ground lost."
"...I could go longer distances without assistance"
Sounds to me like you're doing very well. Not losing ground, but gaining more independence.
More 'power' to you, Dave.
Zoom Zoom Zoom....
Hi Dave :)
I'm coming up for a wheelchair assessment soon and this is what I learned from my last one, in 2001...
Don't let them bamboozle you, they do NOT know better than you as they are not the ones sitting in the chair. It's incredibly intimidating having these 'experts' tell you what you want when you're not even sure of it yourself.
Don't let them steer you (no pun intended) towards one specific model. If it's not right, stick to your guns.
Write a check list of the things you want from this chair, not only does that make sure you're treated with due respect because you sound like you know what you want and can't be cajoled, it helps the therapist understand what you need, and you don't forget to mention little things that you later regret not bringing up.
I had the chance to speak to the Occupational Therapist that will be assessing me a few weeks ago and she actually listened to what I felt I needed, which was a turn up for the books! I'm now quite confident that this person will be quite easy for me to communicate my needs to.
I hope you have a good assessment and I can't wait to see the photos of your new wheels! :D
Oh, incidentally I can't find a way to be notified by email when your blog updates, got any clues?
Make sure you get recline AND tilt and you will be heaps more comfortable.
Have you read "What's so wonderful about Walking" by Mike Oliver. I think it's a great piece. I am wont to say to (now what was your term?) abloids "Well it's the same as - you don't walk to Victor Harbor (50 miles away) even tho you can/could because it's too hard a work and would take too long. No you take a car.
Same for me - it would take me too long and be too hard a work for me to walk across the room. So I don't. I take a wheelchair."
Just a transport situation really. Where does this snobbery come from about walking anyway?! I pity the poor buggers sometimes, trudging down the street while I whiz by on my comfy wheels.
I spent up till I was 45 as a struggling worn out very limited wobbly walker. In the 7 years since then I have enjoyed unprecedented freedom on my powered wheels. Now I enjoy carrying heavy things for the abloids.
Yes, wheels encounter other limitations from the built environment. But usually I can find somewhere else to go if steps get in my way. And I have been known to shout in through a shop door "I was going to come in and spend some money but I can't cos of your step or clutter. So you have lost money today." And then I "stalk" off on my wheels with my head held high.
It's an insidious sort of discrimination tho the disability type. They still think they have good reason and proof (crikey look at em!!) to not allow! us the same as they enjoy.
You go boy in your new hot wheels.
cheers
Glee
And while you are at it, make them give you one that fits. The picture you posted the other day looks like the chair is attacking you. You are entitled to mobility, comfort, and the color of your choice.
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