The Sammy Shuffle: part 1

Live Life Now:

Yes, I do sometimes feel sad about having a disability.

I really struggle sometimes with the proven fact that it takes me twice as long and least twice as much energy to do anything compared to an able bodied person.

Especially writing exams- everyone else will be done in an hour and go home. But I am stuck at my desk for 2 or more hours and can’t go home with everyone else, or I have to start early… So that is something that has always bugged me, but it can’t be helped. So I just try and look at the bright side. Mostly I try to make sure that the time I get, I make count. I make sure I study and know the material. And I do my best.

And when people treat me like I’m stupid or look at me like I am someone to be pitied, that can really get on my nerves. So I try my best to educate them briefly – though you have to pick your battles, some people have their own ideas that you can’t change. And sometimes I just say “to heck with it all” and just let them be and move on.

Most of the time I am comfortable with who I am and what I can do and what I have accomplished. I respect my known limitations, but I try not to focus on them or let them limit me. I adapt. I find ways to make things work.

And to cheer myself up, I usually take a walk, or read a book or watch a movie, or play with my dog, and I think about all that I have accomplished and the little things that make me smile, like the barn in winter; or jamming in the living room with Rube on piano, Dad on guitar and me and Forrest on fiddle with Twink in front of the fire and Mom listening from her comfy chair; or laughing with a friend on the bus 🙂

I think the great thing about true friends is that they respect and love you for who you are. I think there will always be a part of me that wonders what it would be like to be able-bodied, and maybe my friends wonder what life would be like if I were able-bodied too (like having them race me up the stairs and I win instead of lose and dissolve into giggles 🙂 ).

But for me disability is a culture, a way of thinking, an opportunity to connect with people (and educate them, too) to share my experiences and insights that I have as a result of living my life as a person with a disability. Everybody’s disability is different and affects them in different ways, and we all have different experiences. And I think those experiences are valuable, they are part of what makes us who we are.

For me personally, I believe in living my life as fully as I can with the resources and information available to me, including my body. I know it sounds corny, but you have to live your life now, be the best you can be. Don’t worry about what life could have been like if/when you were able-bodied, or if they’ll ever find a cure. If you want to work towards a better future, that’s awesome. Use what you have now to help you get there. But I really don’t think it helps anyone to ask about what could happen if in the near or distant future they were to find a cure for this or that, or what could have happened if in an alternate universe, Sam was born without CP and didn’t use crutches and everything was peachy.

Because I’m not a time traveller, I can’t see the future, and I can’t visit alternate universes and experience life as an able-bodied person. All I can do is live the life I have here and now and do my best with what I have here and now to be the happiest I can be. And life is messy no matter who you are, able bodied or not. People with disabilities just have to deal with a little more mess than everyone else, unfortunately, and come up with some creative solutions!

Disclaimer: All of the above is just from my personal point of view, and not meant to be directed towards you (or anyone else) to tell you how to live your life. They are just my thoughts, based on personal experience.

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