Yeah, that is me. And yes, that is ugly. But this isn’t the kind of ugly i’m talking about because I am talking about how my disease made ugly on the inside. Though both that and the picture above occurred at the same time.
You see, i’m not talking about how during this time I was pulling fist-fulls of hair out of my head every day so that my hair was thin and scragly. I’m not talking about the affects that months of high doses of steroids had on my skin. I’m not talking about how I hadn’t showered in weeks because I was too sick or in too much pain, or the fresh surgery scar down my abdomen, or my very underweight body. Sure, all of those things made me physically “ugly” but what was worse was I became an ugly person inside - where it counts.
This was the first time I had ever been this sick and so I had the fear of the unknown pumping through me. I was having accidents every night and so I was afraid that it would never stop and that I would keep crapping the bed for the rest of my life, which of course came with it’s own set of fears like what would that do to my relationships?, how would I ever sleep next to someone?, I have to be alone forever, etc. I was so weak and underweight that I had to have someone help me do EVERYTHING. I needed help to walk to the bathroom, to dress and undress, to clean up my vomit and feces (dude, it happens), and so I was scared that I would never have independence again. I was having complication after complication and when I was assured that things would get better they got worse. Then there was the pain…oh dear heavens it was like the Dark Lord Voldemort himself used the crucio curse on me. Seconds seemed like minutes and minutes seemed like hours and all I could do was watch the clock in my hospital room until the next time I could have pain meds because all I yearned for was a moment of relief.
The pain, the uncertaintly, the fear turned me into an ugly person.
I was angry.
Angry that I am a good person and I became sick. Why me?
Angry that my friends were out living their lives and finishing up school and I wasn’t.
Angry that this was all happening and I didn’t have health insurance and so my credit was screwed at such a young age for something that wasn’t my fault. Not like I wanted a disease.
Angry that I couldn’t do anything for myself. That people had to help me. That I might not ever get better…it went on and on.
Besides being angry I was scared, sad, and depressed. So what did I do? I took it out on the people who loved me most. I couldn’t look at them or talk to them because I was mad about my life. When I did talk, well…I didn’t talk. I yelled. I treated everyone like crap when they were only trying to help me. If someone tried to push me in a wheelchair I would scream at them and tell them they were doing it wrong. Same goes for if anyone tried to help me with anything else. The hardest part of all of this was I could see the hurt that I was causing them. I saw the sadness in my mothers eyes as she feared for my life and watched me get sicker and sicker. All she wanted to do was help and all I could do was yell. Eventually she told me one day that she was not going to visit me at the hospital anymore because I was so nasty and she couldn’t take it any longer. A few days went by where she didn’t call me or come to visit and though I didn’t think it was possible, I felt even more lonely. I also felt terrible and eventually called her to apologize and then had to work out how to deal with my feelings in a better way.
See. My disease made me an ugly person because I was angry and afraid. I never thought that time in my life was going to end. Now that years have gone by and I have had many many more hospitalizations I don’t get as scared. I know that it can get pretty bad but more than likely it will get good again. Don’t get me wrong, it’s still difficult. Every time I get sick it is difficult and I end up crying over the most mediocre things. Like last summer I cried because I had a blood draw come back weird and they were afraid I had an infection in my PICC line and were going to pull it out. I cried because I didn’t want to lose my PICC line because IV’s are such a problem for me. Luckily they just drew my blood again and it came back fine but that’s just an example of how after spending weeks and weeks in the hospital that your whole personality changes and little things become big things.
I am very careful now to not become an ugly person. I do my best to not take my feelings out on those who just want to be there.
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