Did you know that I was scared, when you told me how courageous you thought I was? People keep telling me that I am brave. But I am only trying to survive, just like everybody else. Do you know that I am still afraid, regardless of how much I have been through?
I find it degrading when you tell me that I am brave. Many people have this idea, this misconception, that going through hardships teaches people how to behave admirably. I am not interested in learning how to live, nor gaining people's respect and admiration. No, I am far more concerned with trying to get my life back so that I can live.
When you tell me that I am brave, you are telling me that you have expectations you wish me to live up to. There are all these things you ask of me, which in all honesty, you have no right to ask. I will not wake up and set out to do things I do not have the energy for. I can not walk through the pain. And I refuse to put on a smile so that people do not feel uncomfortable around me. If you expect great things from me while I am ill, you will be greatly disappointed.
I don't know if what I just wrote makes sense to anyone reading it...it does to me and I suppose the point of this blog was to document my experiences. If the documentation seems confusing, that's because the experience is. But, let me try again. There are two things with people, in relation to my bone infection, that I have a problem with.
One. People tell me that I am brave, and I can't stand it. Being brave implies that I am doing something, preferably by choice. I am not choosing to do anything other than listening to my doctors tell me that what they propose could cure me. I am not choosing to have a positive attitude and to fight. You can not fight a bone infection, you can just hope that antibiotics and surgery work. With being brave come expectations e.g. being patient, walking through the pain (both literally and figuratively), not letting myself get down, always looking on the bright side. I could go on and on. When people call me brave, courageous, fill in the blank as you choose, they expect certain behavior. When I do not live up to that behavior, I let those people down. To be a good patient, I cannot show how sick or exhausted I feel, because it means giving in. As if my recovery is 100% based on my attitude, that if I do not smile I will not get better. I am told that I cannot show that I am ill, and I find that very degrading because, well, being ill has become part of who I am. Would you tell a cancer patient on chemo to run a marathon, or a paraplegic to get up and walk a mile? No? Well, it is also inappropriate to expect someone with a bone infection in their tibia to do the same. But not only do I let people down when I cannot meet their expectations but, I also provide them with something to degrade. The whole point of being ill is being ill. To tell me that I have to behave as if I am not ill when I am denies my my right to express how I feel. Being brave implies maintaining your dignity, but that is the one thing you do not have when you are chronically ill and needing surgery. Would you feel dignified if, at 19, you had to get a sponge bath from you mother? Me neither. If you cannot accept me how I am, sick, then you should have no expectations of me. The point - do not call me brave; I cannot live up to the expectations and I feel that it degrades me.
Two. I am not your source of entertainment, and I am not something to be pitied. I had friends. People who still contact me, but only to find out how I am doing in regards to my bone infection. They do not care if I am enjoying my university classes, or how well I have gotten playing a new song on my piano. They are not people who will come to the hospital with me, or send me encouraging messages. These people are not my friends anymore. I do not accept their flimsy comments. These are the people who always try to relate what I am going through to themselves. The ones who feel they know exactly what I am going through because they once twisted their ankle and were on crutches for a week. I actually had a friend once who told me she knew exactly what I was going on because she once feared she would need surgery. She had hurt her knee and was angry that her doctor who, after ordering an MRI, said the best remedy was to stay off the leg for a few weeks, which she promptly decided not to do, and not surgery. Months later she says her knee is fine. I am getting ready for my fourth surgery, after six years of being ill. I really don't think she understood. The thing is, the people I know who are healthy seem to want to be ill, as if it is cool, an easy way to get attention and sympathy. I am ill, and those are some of the last things I want.
One final comment that I feel the need to share. Some of the people I know think that bone infections are not serious. They say nasty things to me, and tell me I am over exaggerating. Its like if you don't have something serious like cancer or kidney failure, people won't accept that you are ill. Well, I have been ill for six years. I have spent an unknown amount of time on crutches, limping around, and not being able to do the things I want to. I have experienced extreme bone pain and know what it is to be completely exhausted. I have slept 16 hours straight, woken up, and gone back to bed several hours later. I have had way to much blood work and a wide variety of scans, painful surgeries, and bone chiseled out of my leg. I have had pus pockets, edema, sequestrums, and bone fragments randomly come out of my shin. And at the moment, almost all the people I know who have just finished treatment for a bone infection are finding out that treatment did not work, and that the bone infection is still there.
I do not want to be brave. I do not care about you expectations. I certainly will not accept your pity. I am ill and I am afraid, and I just though that you should know that.
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