Effectively Coping with Disabilities and Raising Awareness

Rudy Sims

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Related Topics: Disability Nexus

Disability Nexus: Article

How 1/10th of a second CAN change your whole life! (my story) Part three

an article written by Dave Breezy (A.K.A. Chairdozer)

I came home on the 22nd of December. What a Christmas present! As the ambulance ride was rough enough on me, we didn’t do much that day. God it was good to be home though. The following day, they (my family) got me up for my first shower since October, when I went in to the hospital. Only then did I realize just how bad it was. When they sat me in my shower chair, my own odor about made me puke! And then came the shower. They were literally peeling crud off my body. It was highly disgusting! Finally, after what seemed like forever and at least 3 bars of soap, we finished my first shower in far too long. How wonderful it felt, to finally be clean again!

In January, my Wife and I started looking lift vans, as a way to transport me too and from doctors appointments, ect. As we live in a small, rural community. With no access to accessible transportation without chartering a bus, and paying dearly for it. We went online to look around, and that’s when we found Gene’s truck & van / total mobility. They had a van that would be ideal. It even had the hand controls that I would need when I began to drive again! One problem, how to me get to their shop in Indianola to see it. We spoke to a lady named Lori on the phone about it. No problem, they would bring it to me for a test drive! How cool is that! We set up an appointment to see it. Lori brought it to my house (about 1 ½ hours drive 1 way!) at the appointed day & time. One problem, I was still bed bound except for showers, PEROID! Ever try to decide weather or not to buy a car without seeing it? Not exactly a cheap one either! And I knew it would have to last very a long time. I passed at that time.

I was bed bound until mid march. Then the Doctor let me have 4 hours of chair time a day. We called Lori and found out that they still had the same van. We set up another appointment and they brought it to my house again. This time I got to go for a ride in it! After checking it out thoroughly, including having my mechanic look it over, we bought it!
The Doctor gradually increased my chair time, as my wound has progressed. I now have a beautiful ramp van, with hand controls, that I can actually drive, and do regularly. But I always had to have help with my wheelchair tie downs. Then we found out about the Easy Lock. A mechanism that attaches to the van floor and my wheelchair, that locks it down when I get in place and releases with the push of a button. But I had to go to the place that works on my wheelchair to get it installed. They had to have me, my van, and my chair up there, all at the same time.

Of it all, the part that I have the hardest time with to this day are the people who think they "know what you must be going through" or think they can "just imagine" what it would be like. No, you can’t, and god willing, you’ll never have to. Yes, the experts say you’ll go through this and to expect that. But the one thing they never even consider is the fact that everyone is different. Yes you might think you know how I think or feel, but I’m not you! Not only that, if you haven’t been here, you CAN’T "imagine". If you really want to know, just ask. If you don’t care enough to ask, and all you want to do is assume, then don’t be surprised if I make some assumptions about you. And do not mean to sound like an asshole, I tell people, "I am like a mirror, what you show me, I’ll show you".

They have asked me how I stay so upbeat, so determined, and avoid depression. I do get depressed at times. Then I remind myself of three things;

1. No matter how bad it gets, there is someone out there, somewhere, right now, that wishes they had it this good.

2. When I laid there in the critical care unit, so badly broken up, so wracked with pain, Something, a spirit perhaps? Or maybe an angel? Spoke to me, It said "Good, you have chosen to live, now you must LIVE, to merely survive is not enough." I chose to live, so I’m going to live the best life possible, not in worldly things, but by grasping life firmly by the horns and letting the chips fall where they may. Not just sitting back and taking what’s give to me. An insurmountable task given my condition, you say? How many "normal" people work their whole lives away and don’t enjoy any of it?

3.God must have a purpose for me. Now, before you write me off as a "religious zealot" or something, consider this. What are the odds of having such a severe accident, 65mph., on the interstate, no helmet. With an ambulance returning from a routine transfer, no patient aboard, fully stocked, There to witness the whole thing. We weren’t on the ground 15 seconds and we had paramedics there. What are the odds of my surviving the trip to the first hospital (Pella), not to mention the flight to Des Moines. What are the odds of my surviving my "5 week nap" as I jokingly refer to my coma. What are the odds of my not only surviving but to come through it all with my mind intact? I’ll probably never see all those responsible to thank them personally, but they did all affect me and I am very grateful.

Another tidbit for consideration. Why do "they" (the medical profession in general) have such a problem with us talking to each other? They hide behind "confidentiality" Who would better understand what we are going through than we ourselves do. And it would help them! For instance, I have known a gentleman I’ll call Mr. B. I knew him from before my accident. We now have the same agency providing our home health aides. They (this agency) recently found out that Mr. B and I were acquainted. They immediately demanded to know how we knew each other, and had a problem with us speaking to each other. In fact, it was Mr. B that recommended this agency to me! And they have a problem with us knowing each other? Hummm…doesn’t make a lot of sense huh?

As to how I know Mr. B, lets see, I have lived in a town with a population of approx. 1800 - 2000 people for the last 26 years. I was a volunteer fireman, and a part time DJ, I do believe I’ve met most of them! Add that to the fact that we all had things in common, like oh. I don’t know, we have to have groceries (1 grocery store in town), the occasional bit of hardware (1 hardware store in town), or even rent a movie now & then (yep, you guessed it, only 1 place in town). Needless to say we’ve met!

I am acquainted with another gentleman that could really use a different agency for home health. I wonder if they (the agency that I deal with) would have a problem with me telling him about them and the good help I get from them? Seems to me, the only ones who benefit from "confidentiality" are those that need exposed! (Those who provide poor or substandard care.) I understand "confidentiality" to a point, but come on! I’m not suppose to tell people I’m in a wheelchair? Like their not going to notice this! Please! What are they afraid of? I think they carry this way too far! The confidentiality laws are there to protect us, not imprison us!

No other industry or service in the WORLD works like this! For instance, if you hired a carpet cleaning service, do they make you sign an "agreement" saying that you will never discuss anything about it or them with anyone? If they find out that you know another person that hires a carpet cleaning service, Do they immediately demand to know how you know each other, and make you sign a "compliance agreement" that basically says you must never discuss any aspect of your carpet cleaners with anyone? And if you ever do, they might not clean your carpets again? Hell no! They wouldn’t be in business long if they did! They might even offer you a discount because they WANT you to tell EVERYONE how happy you are! They WANT the business!

Here’s a wake up call to us all. At the time of my accident, I had medical insurance and long term disability insurance through my employer (one of the best plans there is, so we were told). I also had full coverage on my gold wing including medical. I had all the bases covered, right? Did all the right things, right? Also because I was crippled by this accident, I have title 19 that went retroactive to the time of the accident (meaning they would cover whatever my insurance wouldn’t). I shouldn’t have to worry about medical bills, right? Also I had long term disability so I would have a good income I could count on, right? …. WRONG! Then there’s the fact that if they bill Medicare, title 19, or your insurance wrong, they can come back on you. Even if you point out their mistake and there are any late fees or interest, they are your problem, even if it was their mistake. We’re still fighting several of these deals.

More Stories By Rudy Sims

I am currently 31 years old I have a disability called cerebral palsy and I am in a wheelchair I was born with cerebral palsy and I have had three operations to try and manage it. My last operation went badly and I experienced very severe postoperative chronic pain for 10 years. I am doing great now and I want to help others with disabilities and chronic illnesses cope effectively with their conditions.