Thought Of The Week: Being Disabled Sucks

For those who have been lucky enough to never have had to experience what it's like to be disabled, it's more than just an inconvenience. It can be terrifying at times. Imagine getting ready to go on a trip, but every hotel you call has beds that are too high for you to climb into, and there are no ladders or any way for you to get into them. That's the only way I know how to describe the feeling I just experienced. Add to that, it's not as if I can just sleep anywhere. My body is so racked with pain and so bent and tight, that the only way I can almost sleep is on my side with a pillow between my knees and of course my legs bent (because they don't go straight). I'm also 6' tall so I don't really fit just anywhere.

Because I am unable to stand up at all, I need a bed that's low enough that I can just transfer over from my wheelchair. In other words, a platform bed. All the hotels near U of M that offer discounts to patients don't have them. If I could still stand up, this wouldn't be an issue, and I could save a lot of money by booking with a hotel that offers discounts, but since I can't stand up, and can barely even transfer from my chair to any other surface, I had to find a hotel that offers platform beds and pay the price. It was either that or stay in a cheap, seedy motel really far away from U of M. Because of U of M's location, everything is expensive! How in the world do they expect someone like me to be able to afford this! Especially if I have to go down there multiple times! Thank God for my GoFundMe page and all my amazing supporters who have donated so far! Bless you all! I knew this was going to be a big expense, but until I really started making the plans and calling around for an accessible room (and bed), I had no idea what I was truly facing.

These are the kinds of things someone like me faces every single minute of every day. If it's not the bed issue, it's the bathroom doors aren't wide enough for my chair (yes, even the "accessible" rooms). Or, the doors are wide enough, but they open IN to the bathroom so once I'm in there, there's not enough room to close the door because my chair is in the way. People who have never had to experience being in a wheelchair and being confined to one, don't really understand all the tiny issues that become huge issues for us. Even my friends and family say to me, "I would have never thought of that -- it's amazing the things we take for granted." How true. My life is filled with nothing but obstacles; from too narrow doorways to rugs on the floor that my casters get caught up in, to things on the floor that I have to bend over and pick up because it's not like I can just step over them. It's a constant battle to just get from point A to B.

So, I found a hotel with platform beds, and it's only about a mile from U of M. It's actually a very nice hotel, and wasn't too insanely expensive, thank God. I am looking forward to relaxing there Sunday night before my appointment on Monday morning. I guess if I have to go through all of this, at least I can stay in a nice hotel and enjoy some small luxuries as best I can. I'll just eat less.

Never Give Up