Stuck in the Middle

I am so sick of being told I am too disabled to be normal and not disabled enough to be handicapped. When I say “being told”, nobody is directly telling me this but there are so many things I find myself getting frustrated about because I am somewhere in the middle.

So my boyfriend and I are moving to the city in September. We are trying to prepare as best we can for the parking situation. When we were on the apartment hunt, our realtor told us that there is a way to get a handicap spot placed near your house. I looked it up and found the application for getting a spot. I read through it and noticed it asked things like “can you walk more than 200 feet, do you have a mobility device, etc.” Things that don’t necessarily apply to me. I wondered if I could really get accepted for this or if it was a waste of my time.

There was a section that was to be filled out by my physician or a licensed specialist. I went to my physician’s office because she is close to my house, even though she has only known me a little while and basically has no idea how FSHD affects me. I wanted to go in so that I could fill it out with her. One of the first things she said to me was, “I’m honestly surprised you were able to get a handicap placard, I got a hip replacement and I have a lot of pain but I couldn’t get one.” I wish, like really wish, that the only thing in life I had to worry about was getting a hip replacement at the age of 50. She felt as though nothing was wrong with me and that my application probably wouldn’t get accepted.

Anyways, it just made me think about how I’m always stuck in the middle. So on one hand I’m not disabled enough to get this handicap parking spot on the road. I think about how hard it is going to be for me to park, even just a block away from the apartment everyday. I often have to carry many things with me, like a big bag for work, my computer, etc. About 5 seconds after I get out of my car with all of this stuff I am already in pain. So now I have to walk a far distance to get into my apartment and I’m tired, I’m in pain, I’m not having fun. By the time I’ll get to my apartment, I’ll just want to lie down and never get up. So I’m not disabled enough to get this handicap spot, yet I’m too disabled to have a normal walk up to my apartment. I just feel so stuck.

You might be thinking, “well why did you move to the city where things aren’t accessible? or why did you choose an apartment with no parking?” I have two answers, dreams and money. I have dreamt of living in an apartment in Boston for a while now. I firmly believe that you shouldn’t let your disability stop you from doing what you love. I’ll say it over and over, I am not going to let my disability stop me from accomplishing my dreams. The second answer is money. We looked at countless places. Half the places were pretty beat up, yet they had parking and half the places were nice but had no parking. I would rather live in a nice place that I feel safe in then live in a gross apartment in a bad area with a view of a gas station.

When people think of handicapped people, they often think of people in wheelchairs. That opinion is changing but it’s still the vast majority of people’s opinion. You look at me and right off the bat you think I’m fine. Yet, you don’t know what I go through everyday. I’m not one to complain to others about my life (except through this blog ;)) but it’s just that it’s really been getting to me lately. I just hate feeling stuck and I don’t know what to do about it; because in reality, there is nothing I can do about it. I just have to be thankful that I am still able to walk, and live in this beautiful apartment in my favorite city.

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