Redefining Disability Challenge – Question 21

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the twenty first question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge.

Here is this week’s question:

FREE POST DAY! Write about anything on your mind today. Any topic that the series doesn’t cover, anything going on in your life related to disability, something you’re excited for, something you’re frustrated about.

 

I had a great post planned for today. I was going to write about the 25th Anniversary of the Americans with Disabilities Act. I’ve been spending a great deal of time thinking about that, as I am scheduled to speak about it at our local celebration on Friday.

But then Monday happened. And getting to the event on Friday may not be a possibility.

On Monday, the Electronics Control Unit, or controller (AKA – the brain of my power wheelchair) died. This is not my first power chair, so this is not the first time this has happened to me. My first power chair went through two controllers. My second power chair needed a new controller when it was not even three years old. And again, exactly one year later. And yet a third controller one year after that, before I was eligible to buy a replacement chair (because the insurance companies only pay for a new power wheelchair every five years).

I have had my current chair for exactly three years. Well, three years and one week if you really want to be specific. And now, just like the prior chairs, it is dead.

Not completely dead. Just in a coma, waiting for a transplant at my local wheelchair repair shop like a terminal patient watching the clock for the replacement organ to arrive.

You can install a new controller and revive the chair. Well, maybe not YOU. Bob, my amazing wheelchair repair tech, can install it. But, first the part has to be ordered. Then it has to be shipped. And then it has to be installed. And even though I can get from Albany, NY, USA to Hobart, Tasmania, Australia in thirty six hours, it may take up to a week for this little controller to get here from wherever it is at this very moment. And Bob is on vacation this week – a vacation he did not have my approval to take! The other guys in the shop are good, but they aren’t Bob.

The part has been ordered, but my wheelchair repair shop has no estimate as to when it will arrive. The second controller on my second power chair died on a Monday night while I was in Grand Rapids, Michigan, for the Ms. Wheelchair America pageant in 2011. The replacement controller was ordered on Wednesday morning and arrived on Friday morning. I was back in my chair at 2:30 PM Friday afternoon. So, things can happen quickly in the world of wheelchair repairs. I just don’t know if they will happen quickly this time.

In the meantime, the shop has given me a crappy, old Permobile as a loaner. I say old because it is battered, bruised and banged up. I say crappy because IT’S NOT MY CHAIR!

Allow me to illustrate what it is like to use a chair other than my own. Imagine you woke this morning with a new pair of arms and legs – say the ones belonging to your neighbor. Your neighbor is a different height and weight, so her arms and legs will not fit your torso appropriately. They will not react to the impulses you send down your nerves in the same manner as your own limbs. If you walk, your gait will be unsteady and your balance will be shaky. When you reach for objects, you will need to remember your new replacement arms are not the same length or strength as YOUR arms. You will use muscles you don’t normally use just to maintain an upright posture. You will be fatigued just from trying to do your typical morning routine. Nothing will feel right.

Nothing IS right. EVERYTHING is wrong.

Here’s a list of why I am currently miserable. Yes, this may include more personal details than you ever wanted to know about me. But to really understand how important someone’s assistive technology is to their quality of life, you need to sometimes see the ugly truth about the reality of disability.

  • I cannot transfer in or out of this chair independently, so I cannot get in and out of my van. This means I cannot leave my house to go to work, or any other location. Sure, I can wheel from my bedroom to the dining room. And if there were a fire or an emergency, I could get out the front door in this chair. But I cannot leave my house to go to work. And I only have five paid days of time off left since I took a two week trip to Australia three months ago.
  • I do not fit under my bathroom sink to brush my teeth. I have to use a spit cup. I hate using a spit cup. I feel like I’m in a hospital.
  • I cannot sit comfortably at my computer desk at home and I am in pain from trying to type for an extended length of time in an awkward position.
  • I cannot reach up to brush the hair back off my face because my arms are too weak to lift up without balancing them on the arm rests, but the arm rests on the replacement chair are not long enough for me to prop up my elbow so I can reach my brow. I also cannot brush the back of my hair because of the stupid armrests, but also because the back of the chair is WAY. TOO. HIGH.
  • Have I mentioned the pain and discomfort? My back has been in agony since around 10. My shoulders have been burning since 2. It is 6:15 PM Tuesday as I write this. I am stuck in this torture for another two hours. And tomorrow it begins again. I have some prescription medications left from an injury earlier this year, but I am not functional if I take them. I am already impaired enough being out of my chair. I am hesitant to add chemical alterations to the mix.
  • This chair does not have swing away foot pedals. It has flip up foot plates. Except, because it is old and banged up, the right foot plate does not flip up completely. So, when my Personal Assistant (PA) tries to help me transfer out of the wheelchair, the foot plate digs into the back of my right leg, essentially knocking it out from under me as I try to stand.
  • This chair is a front wheel drive chair, which means the drive wheels are located in the front of the chair, under my legs. My chair is a mid-wheel drive chair, which means the drive wheels are in the middle, directly under my seat. The two chairs perform very differently. I feel like I am fish-tailing constantly, and I have no idea where my “back end” is as I rotate. The turning radius is larger, which means I have almost ripped out my bathroom sink and doorway multiple times. And this chair has two ‘anti-tip’ front caster wheels in front of the drive wheel which supposedly help it drive over thresholds and obstacles, but in reality get in the way of anyone attempting to perform a stand-pivot transfer. This is how I get in and out of the chair. If my PAs manage to get through this experience without tripping over the wheels, it will be a miracle.
  • Transferring in and out of the shower is exhausting, because I don’t have my chair to lean on as I shift and move on my tub transfer bench. My PA has to assist me with every movement, which means it takes me twice as long to get into and out of position, and twice as much energy.
  • Because I cannot transfer in and out of the chair independently, I need assistance for EVERYTHING! Getting on and off the commode, cleaning up after using the commode, getting off the commode. I don’t have MY chair to use as a leg rest while sitting on the commode, because this chair does not have foot pedals, so I am unable to balance and wipe myself. Thank goodness I don’t have my period this week. The last time the controller broke on my chair – that time I was in Michigan? Guess what arrived the day AFTER the chair broke?! When was the last time you let someone else wipe you, those of you who don’t need assistance with it on a daily basis? I have had others help me with this task before, and I will need to have them help me again in the future I’m sure. But even if they do it well, nobody does it the way you do. Try for yourself tomorrow. Have someone else perform this task for you and let me know how many wipes you go through. P.S. Baby wipes are quite possibly the best invention. Ever. I use Huggies Simply Natural in case anyone wants to drop some off. And no, I did not get paid to endorse them.

Monday, as I was waiting for the diagnosis on my chair, my best friend sent me a text which read, “You are the luckiest girl on earth!”

My response to her? “Some days I am. Even if I don’t feel like it right now. Thanks for reminding me that I am!”

Yes, this sucks right now. There is no other way to say it. It’s terrible, and it isn’t going to get better for several days. I am exploring options with the wheelchair repair company (new batteries for my old chair may be a possibility) but until I get MY chair back things will just be bad. I will be short tempered. I will snap at those who care and try to help. I will apologize because I know they are acting out of love and concern. I will write gratitude lists daily – I’ve written three so far today!

Because I AM lucky. My chair broke as I was returning home from a long weekend away with family. I was able to get it to my local repair shop, instead of being stranded out of town, or out of the country, without a chair. I have a roof over my head, food to eat and a clean bed to sleep in. I have some loyal PAs, friends and family who have reached out with offers of assistance. I have an understanding employer who is letting me do some work from home as I am able. I live in a country where replacement wheelchair parts are available, even if they aren’t here instantaneously. I have virtual friends and readers who let me use this week’s challenge as an opportunity to vent, and be less optimistic and cheerful than usual.

I put on a good front. I appear confident and outgoing in my professional life. But the reality is, all of us who depend on complex technology for our independence and life are one accident, one breakdown, one illness away from total dependency and isolation. Maybe I needed the reminder so I would realize how easy life was last week when all I was worried about was hiring new PA staff.

Because, oh yeah – I’m still hiring.

And if anyone has a spare Invacare controller they have no use for, I’ll be at home for at least the rest of the week.

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20 thoughts on “Redefining Disability Challenge – Question 21

  1. I hope venting has helped you cope with this miserable situation you are in. It is easy to say we all have bad days but I can appreciate how much harder it is for you to deal with this. For me, the worst part about this is hearing how much pain this brings you.Hopefully you can schedule a great massage when you are back in your chair.
    Maybe investing in the batteries for the other chair is a possibility worth thinking about. Hope it is fixed soon. And we did have a great weekend, right?

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    • We DID have a great weekend! And there is potentially really good news on the repair front. A new controller may be here late today, or tomorrow. I should have my chair back before the weekend!!!!

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  2. Oh, I’m so sorry for both the physical and mental anguish this causes. I suppose you can’t even get to a happier place by crocheting, since it sounds like the chair arms won’t allow for that.
    I guess Bob deserves a vacation but sheesh!
    Hang in there. I hope things come together soon.
    Love you

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  3. As the PA that was with you on your trip to Michigan, I can honestly say you were miserable. Really, REALLY miserable. And since we’ve been friends for so long, I feel comfortable saying I did chuckle a little when you had to rely on me to push you in the manual chair. Another day you would laugh at your “are you KIDDING me??” face. HOWEVER…you failed to mention the power outage in the wee hours of the morning. If your regular chair had been in working order you PROBABLY would have been out of battery juice quickly. Especially since some of the carpets in that pageant hotel were awfully thick! And the best part of this all is that it’s temporary. THANK GOODNESS!

    Liked by 1 person

    • You, my dear friend, deserve everything good I can say about you. I WAS awful that week, and you were a trooper. And you didn’t kill me! And we’re still friends! Winning 🙂 Everything in life is only for now.

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      • But we laughed! Getting you in and out of bed, showering by cell phone flashlight, watching the valets run thru traffic. And we saw the sights, and did a scavenger hunt, and ate good food and watched brides and grooms on their wedding night as they blissfully headed to the honeymoon suite. And enjoyed the passage of time. You made the best of a crappy situation. I’m nothing special, I’m just your friend, and I get it. I wish those that DIDN’T were the ones reading this post.

        Liked by 1 person

  4. I like the fact that you write so coherently and clearly with facts that make your situation real. Very powerful. I am also impressed by the lack of expletive deletives – that is, I love your professional cool (even if in moments away from public word making you had more to say). Since your wonderful advocacy does not make a difference to your life at the moment when things go wrong, I am left breathless at the way you (and lots of people with all sorts of tricky situations) get through – but its no picnic.

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    • Thank you so very much. I have a hard time being honest when disability sucks. And let’s face it, sometimes it does and there’s no other way to say it. But it’s temporary (thank GOD!) and the end is in sight!

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  5. I’m hoping that being late to read this post means you’re beginning to adjust (and/or YOUR chair is on its way!). It sucks to feel disempowered, no matter the source.

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  6. I know the feeling of being in another chair that does not fit me. It happen to me a few time when I was on my way back to college from amazing alternative spring break. The one was the panel of the controller came off when I got my chair from the airport, I was sure not happy about it. This year, it happen again expect the people wasn’t care enough with my chair so the batteries crack and the one main part that hold the batteries broke. IT SUCK when things happen like that. The airport was really nice to call the wheelchair company to let me loan one chair while they pay to fix my chair. I do agree with you how it is not the same control being in other people chair. The chair that I was loan to was really frustrating and I keep hitting things everytime I turn because the chair doesn’t turn in the way like my own chair does.
    I totally understand what it like to be in your situation with the chair. Hope your chair is back and working well this time.

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    • I suspect my breakdown was related to travel as well, and that it took some time to happen. But, the good news is my chair is back now and I am so glad. Thank you for sharing your experiences!

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