Looks Can Be Deceiving

Posted on January 30, 2014

A lot of people say, “oh you look better today,” and “but you don’t look sick.” No! Stop it! I can look fine, but not feel fine. I can look better one day, and feel completely worse. That’s the problem with CF, you can look normal but feel close to death. I personally think that Eva Markvoort said it the best in her video titled “Nights Like These” when she was talking about getting ready for a party. Here are her exact words.
“I’m having trouble right now, because I know I don’t look sick, especially when I have makeup and my hair done and everything, and I do interviews with people and ‘oh it’s so great to see you looking so healthy’ but, the truth of the matter is that I have 18 percent lung capacity and I am really good at managing that so I don’t look sick. Today has been a bad day, and there are good days and there are bad days, and on the good days I am sitting in a chair I can look just like everybody else and no body would know, but on the bad days like today I spent all day in bed, just trying to get up the energy to go to some silly party I don’t care about, because that’s what I should be doing at the age of 25 and I couldn’t even… It takes me half an hour just to shower because I have to sit down in order to be able to put my hands up and wash my hair, and then afterwards I have to put lotion on one leg and then sit for 5 minutes and catch my breath, and then put lotion on the other leg and sit for 5 minutes. I was trying to straighten my hair but I couldn’t lift my arm enough to straighten my hair to be able to go out, and I just thought ‘what am I doing? I can’t go out, I can’t do this, I can’t…’ and it’s not even the party, I don’t give a shit about it, it’s the fact that my life is being dictated again. Doors are shutting, my choices… I’m gonna stay home and take care of myself. Just know that this exists too as well as the ‘oh well you look great, you look so healthy.’ It’s just incredibly incredibly frustrating.”

I hope that this has helped a few more people understand what I am trying to say. For those of you that don’t know who Eva Markvoort is, she was a girl in Canada with CF who was in a documentary called 65_RedRoses that documented her time on the transplant list. It shows her wait, her transplant, and her life after transplant. It was the movie I watched right when I found out I needed a transplant and it inspired me so much. It helped me decide that I would go through with transplant, and how great life would be afterwards, even though she died shortly after. They talked about her energy and liveliness afterwards. It’s an incredible movie, and now is a symbol for advocating organ donation.

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