The day I came home, after being in the hospital for a month, I was met with three homecare specialists. One of these specialists was there to set me up to get a wheelchair, a walker and some little things to help with my mobility around the house. I was surprised. I had no idea I would need help in this area but quite honestly, I was getting bombarded by so many new things I didn’t know which way was up. The other two were there to check on my mobility needs,I believe she was a physiotherapist and the other was a nurse to introduce me to my new life of daily needles. During this process we figured out a couple of things about me. First, due to a preexisting autoimmune disorder, I experienced a reaction to standing for any period of time. When I stand I get dizzy or my back gets very upset and sends lightning bolts up my spine. Eventually my heart rate goes high and I fall down. Yes, this actually means I am better off walking around in circles than standing still. As if I needed anything else to make me stand out in a crowd. This caused me problems with daily activities like cooking because to prep you must stay still. Although I have never tried walking and cutting vegetables before, I feel as though it may be a bit to dangerous for my blood thinned body.
The next thing we found out was that I would get very winded going up and down the stairs. I was informed I was a fall risk due to my tinzaparen (blood thinners) shot, so basically I was not allowed to walk up and down my stairs alone. I live in a bi-level. I have to walk up and down stairs to get into my house. It wasn’t looking good for my mobility needs. Last of all I was informed that I had to walk everyday if I could, to help with my muscles and breathing. I basically needed a babysitter in my own house. If this wasn’t enough, a few weeks later I was tested for something called neuropathy, which is a fancy word for your nerves being crazy and doing whatever they please. They found a pinched nerve in my leg that makes what I call crazy legs because it basically makes my leg move on its own. My arms and shoulders will go numb sometimes or move on there own. It depends on the day and my face goes into palsy or twitches. I am definitely a site to behold.
I am telling you all this because through this debilitating process I have discovered something very important that I believe we should all know. That being disabled is really difficult in this society. I think we have probably come leaps and bounds from twenty years ago or so but as of right now, I have been able to walk a mile in another person’s wheelchair and here is what I have seen so far.
Shopping is often a game of stealth maneuvers akin to an army bootcamp. Ok maybe I am exaggerating a little but not a lot. When I walk into a ladies boutique I am usually pushing a walker or a wheelchair. Sometimes I am in the wheelchair but I try to do that as little as possible. It never fails that I snag at least one thing on my chairs because the clothes are all piled on hangers that have like two feet distance between them. Everything is hanging around my wheels so I am going to either not look at stuff or risk ripping something down. I am unable to pass people because of lack of space and I am never going to be able to maneuver a change room , a helper, and a wheelchair all in the same change room even if it is wheelchair accessible. Also, all of the change rooms are at the very back of the stores. I literally have to maneuver a hundred obstacles to get to the change room. Then, if by some miracle I am able to find something I like in all of that crazy, I have to pay for it. Here is something I never knew. There are no wheelchair access tills. I literally have to step around or out of my wheelchair to pay for stuff. I am lucky because I have this ability but not everyone does. I have had people pass me the debit machine from the other side of the desk and pull the cord right out of the computer.
In Walmart I have hit people with the wheelchair trying to get around the corner in the self checkout line. I have a small wheelchair. I couldn’t imagine how difficult it would be for someone with a bigger one.
Now for the special access doors. I have gone up to an access door that swung out leaving me have to step backwards around the door. This means I have to step off the curve and back on to it to get in. Again something I can do because I still have some mobility but impossible if you are strictly wheelchair bound.
I am writing this, as I mentioned before, because I never knew what it was like to have a disability and I am just learning about the struggle of it. However, there was also some things I have learned that we can do to make things better. The other day I was in my wheelchair parking stall and next to me a lady parked right beside me. She opened up her door and saw my husband coming with the wheelchair. He was blocked off. Not only could I not fully get out the door but if he had had to lift me out of the car it would have been impossible. The lady was horrified at herself and moved immediately apologizing the whole time, but it occurred to me that the wheelchair accessible stalls were useless if someone parked directly beside you. I would have been locked into my car if she stayed that way and if I had gotten out and someone else did the same thing I would have had to wait to get into it. I have been a driver for a long time and I never thought about having to leave extra space if I parked beside a wheelchair accessible spot.
That same day I had to eat because of some bad planning on my part and some pills that had to be taken. We decided to get a quick bite at a bar we used to go to before the cancer. I have food allergies so I can’t just eat anywhere. I usually go to the same places and order the same things so I will not have any problems. This is why we chose the bar. The bar had wheelchair access but I was feeling well enough to walk with my husbands assistance. When we got in I realized all the chairs were bar style. I had to have my husband boost me up into the bench. My leg was going wonky so I grabbed my foot and placed myself in criss cross applesauce position on the bench and removed one of my shoes by mistake in the process. I am immune deficient so this meant I had to sanitize my hands. I ask my husband to get me our hand sanitizer and without thinking he says why don’t you just go wash your hands. Well that just seems like a simple solution doesn’t it? I said how do you suppose I can do that? First off the washrooms are Male and Female. So he could not escort me as I am one and he is the other. I can’t stand for long periods of time remember and washing my hands requires standing. I also need the assistance to walk because I do get dizzy and fall sometimes. He laughed for a second and said ” you really can’t go to the bathroom here” . I was able to laugh with him at that moment from the absurdity of it but if I really had a bathroom emergency I would probably not have been laughing quite as much. I am by no means faulting the bar for its set up. I don’t think they would even recognize this as a problem. I know I wouldn’t have if I had never gotten sick. It is the things we don’t realize, do to not knowing ,that makes people feel like they have to fight when in reality they just have to try to understand other people’s plight. My suggestion is be patient and kind. Give the wheelchair accessible spots some space and try to have empathy for people. I have yet see too many people with disabilities complain but if they did to me right now I would completely understand where they are coming from. I hope by writing this it will at least make one person think twice about the parking situation at the very least. I know I will never be the same from what I have learned from this experience. We all live in this world together and it is a blessing to get the chance to understand one another from their point of view. God Bless everyone.