QUOTES (from our lives)


“I would rather die than live as you”
            Yes, somebody really said this to me once because I had to drink meal supplements because I was unable to eat because of my gastroparesis. The truth is that sometimes I would rather die than life as me also, which so sad nobody should feel that way. You saying that just makes me feel what I already feel deep down. Some days are so hard, I am in so much pain that I am ready to just be done. It would be easier and its not like I have an average life span anyway. What really lies ahead, hospitals, tests, treatments that may or may not work. I didn’t choose to be this way and I didn’t do anything wrong to make me this way. I didn’t hurt you and my condition doesn’t affect you so why say that. I am just as much a person as everybody else.

“I should go to the gym so I don’t wind up like you”
            I didn’t wind up the way I am because I forgot to go to cardio. That’s not the way hypoplastic right heart syndrome works. Your heart doesn’t just disintegrate if you don’t do your daily cardio. I was born with many different disabilities. I can’t do cardio. If you want to go to the gym than go. I am happy for you that you want to get in to shape, I want to hear all about your exercise plan and see your progress. Go to the gym but don’t do it because you feel bad for me. My disability should not be the reason that you do or don’t do anything.

“Your so inspirational”
            NO I'M NOT!!! I didn’t cure cancer, I have never given a motivational talk, and I never climbed mount Everest. In fact I am still getting myself established. I go to college, I have friends, I go to the mall. I do everything that every other girl in their 20’s does. The only reason you think I am inspirational is because I have a disability. You see my service dog and think I am extraordinary. Why? I just want to go shopping in peace, see my friends in peace, have a family outing in peace. Everybody is different, who is to say what is normal and what isn’t. I could be inspired by somebody because they walk around in high healed shoes. It is not a complement to say I am inspirational. It may make you feel good but it just makes me feel different. I feel like a freak and know that people are watching me. You may think I am extraordinary but the truth is all I want is to be ordinary, even just to know what it is like for a day.

“So how long are you going to live, are you on the transplant list?”

            I don’t know and who are you? How long are you going to live? Why would anybody ever ask this. No I am not on the transplant list as I do not need a heart at this moment. I will one day and that is a bridge that I will cross when it is here. Getting a transplant is not a one stop cure all. A transplant patient has problems for the rest of their life and has to take a cocktail of medication. Similarly the wait can take years. So the final answer is I don’t know how long I have to live so might as well make the most out of it now.

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