To have a life long chronic illness which robs me of some of my most basic rights. Knocks me to the ground every single day. Attacks a moment’s notice with the force of a thousand elephants. Works in mysterious ways. Can keep me bound to a bed day and night. Everyday it slowly sucks out a little bit more of my youth, my life. I have no consent on this matter. I signed no permission slip stating lupus can come and have a permanent sleep over. Never did I want a disease people don’t know about, understand or recognize. Lately I have been struggling with the idea of lupus as a punishment. In my factual mind I know lupus is genetically pre-disposed in my case and for some reason I turned into a statistic. Chronic illness is the worst type of torture available. Invisible, painful, long lasting, sometimes life threatening, slowly sucking away the very life a person desires. But there is some little illogical part of me that feels like lupus came to me as a punishment. Depending on the level of lupus activity one could almost say it is the “living dead” punishment. Sometimes living with lupus can be worse than dying.
Keeping a positive glow about life is a constant struggle for me. Finding happiness amid the turmoil and sanity amongst the insane. Things are pretty pathetic when the highlight of my day is moving down to the futon to rest so I can look at my piano. Not play it of course because it would hurt too much. Right now the sheer thought of spending an entire life feeling under the weather is daunting. One day at a time is how I am taking life. Not that other people don’t but it’s a bit different. In my one day I don’t really get much done or function for very long. Every hour I feel different than the hour before. Half the time I feel so crummy I don’t even want to talk with other people. Some days I have to trade off between seeing my horse or going up to school for an hour. Not having energy is just plain frustrating.
With lupus I have very little control. I hate that. My life (or desired life) has tons of structure in it. Structure helps me greatly to succeed. I need predictability and patterns. Controlling what I can helps to keep me feeling grounded. Now, I have no desire to be a controller of others. Just in control of my own body and life. Being able to live life with only three parties present: me, myself and I. Not the four I have now: me, myself, I and lupus. Lupus is like a broken chain on a bike (multi speed.) The brakes still work but the driving mechanism is broken. One is forced to hop off the bike and (slowly) walk it back home. Walking takes far longer than just pedaling blissfully along.
Any person who wants to be sick for attention is just plain crazy. Helk, if I could be healthy and didn’t have a lot of attention I would be happy. Having an illness I feel like I sometimes get the wrong type of attention. Sympathy gets me nowhere. Ignorance hurts my feelings. Acknowledgement lightens my fear. Understanding gives me a hint of peace. But really I don’t care for sick attention. Healthy attention, bring it on!
My punishment is not consensual. Nor is it pleasant. This morning I am just feeling “sick and tired of being sick and tired” as I reflect upon how lupus has negatively influenced my life. I also feel like it has robbed me of a number of joys of my mid teenage years. There’s not way to get back what I lost. Only thing to do is embrace what I have found and march onward. I did not choose for lupus to be one of my major bridges in life.