On the Hardest Parts of having a Disability

In previous posts, I have told readers of the perks that come along with my Cerebral  Palsy and the equally wonderful and scary responsibility that it gives me. I have written about, how fabulous my friends are, and told you the truth about what society assumes about the community of individuals with disabilities. In all those posts I have been able to put a positive spin on whatever challenges I am discussing. I do not do this because I am a Pollyanna, or an endlessly cheerful girl. I do not do this for the benefit of my blog-audience, friends, or family. I do this because I have to; in order to make it through the day without tears, I have to be able to instantly see the bright spots in a lot of dark places. I believe that all disabled people learn to do this early in life. It can get us into trouble, because our whole life can be crumbling around us and we almost don’t see it. That, however, is whole other post. I wanted to focus today, on the parts of living with CP, about which I can’t seem to see anything good. I figured it would have a helped me, a few years ago, if somebody had actually said it aloud.

1.       It’s almost impossible to get through a day without being exhausted. This was not a problem when I was a kid. I had just as much energy as my able-bodied sister and playmates. As the years go by however, disabled bodies get sick of working three times harder to have the same amount of fun (Yes, there are studies proving that I must exert triple the energy  my sister does to complete the same task). I still want to enjoy my life though, so I ignore my sleepy body until it screams.  My family and friends are also used to the going-doing Cathleen who they knew and loved, so sometimes they cannot understand my level of fatigue.

2.       I always have to prove to other people that I am typical person. I have already discussed rebuking the assumptions society makes about people who get around differently. I have mentioned in various posts how impressed I am by the people in my life for looking past my disability. I am impressed because it is rare. The funniest assumptions are made by strangers, so those are the stories that get told the most. However, there are many people who I have known for years, people who I once considered close to me, who think about my disability first every time they think about me. That is beyond hurtful and not at all humorous.

3.       I live in fear of burdening others and I have my entire life. “So and so shouldn’t have to help me into this car.” “Why didn’t I just bring my walker?  Nobody would have to push me.”  “I should have brought my chair, I’m walking too slowly.  So and so must be annoyed.” “I really made Maggie’s childhood harder?” “If I get fat, people will have to help me with even more.” “I cannot tell my parents how So and so treated me today, they’ll worry.” etc, etc,  It is a stupid and self destructive psychological tape that plays consistently (not constantly) in my head and  it increases in volume as I get older. It has spilled into and messed with aspects of life that have nothing to do with my disability.  I have talked to therapists about it, to my mom about it, and to dear friends about it. There is seemingly nothing I can do but ignore it.

The list of things I hate is  short but daunting none the less. Please notice that this list is written in the first- person as they are the things that I cannot seem to get over. I speak for no one else.  If anybody reading does not agree with me or thinks that their list would include more significant drawbacks, visit my Disagree with me Page. I'd love to publish your thoughts.