Stay Out of My Bubble

With two weeks of law school completed, I am physically drained. It isn’t due to the work, I have worked longer and harder hours doing physical and mental labor that was nothing short of torture at times. The difference now is my health. I cannot sustain myself for extended periods of time because my body has to try and fight off germs from the hundreds of people I encounter at close proximity every day. I almost exploded this week because people can’t respect personal space and therefore were making me worry that I might become sick. Up with a scratchy throat at 8am on a Saturday, I’m afraid that my concerns were justified.

They say ignorance is bliss and that is so true! People don’t realize that with their healthy immune system, they encounter and beat thousands of germs everyday. With my post-Rituxan immune system, I can catch anything with relative ease. Now that my nine month window of safety is gone, a simple “cold” to a healthy person can drop my platelets and put me at risk of dying.

I’ve said this, posted this, expressed this. I’ve answered questions, purposely avoided certain social outings and more. All in the name of avoiding illness, or in my mind “contamination”.¬†Despite my pleas, people still don’t respect this. They stand very close and they hover over me. If I can feel you breathing on me, YOU’RE TOO CLOSE!¬†

Living as an immunocompromised patient is tough. I didn’t lose my hair during Rituxan so I don’t look sick. I smile, laugh and interact with people every day. I am happy I am alive, there is nothing more frightening than feeling fine, being in the hospital and health care providers acting like you’re going to die. There is no way to prepare for the mental anguish that sweeps over you in those situations. I live each day trying to make up for those feelings and trying to avoid having to experience them again.

Going back to school was a necessary step in rebuilding my “new normal” as a rare disease patient. I think about how I’m not suppose to be here every single day. So I closely guard what parts of my health remain.

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