My Rare Disease Part 6: Pride

Back to Part 5: Dignity ~

We developed a routine. After talking to the doctor each morning, my mother called my employers to let them know that I needed to stay in the hospital for another day. Then, we watched The View.

My father visited a couple of times a day and paced the floor until he had to return to work. One morning the nurse asked if I wanted to see the chaplain, or to have my hospital announcement in the local newspaper. No, and are you kidding? Nevertheless, the chaplain stopped by on one of my particularly unfortunate days. I was resting during the middle of the afternoon with the bed completely reclined when a man poked his head through the doorway.

“Tara,” he said.

“Yes,” I said.

“Are you Tara Caimi?”

“Yes,” I said again.

You’re Tara Caimi?” I stared at him in silence.

He then introduced himself as the chaplain who also happened to be the father of a long-time friend and classmate of mine. After exchanging all the pleasantries I could muster, I wondered if he judged me for asking not to see him in the first place. I decided that he did, and rather than resume my fruitless effort to fall asleep, I was now forced to think about the concept of pride.

I had not wanted my name to appear in the newspaper, I admitted to myself, because I didn’t want the entire town to know how sick I was, let alone to know how I was sick. I had no interest in receiving get-well balloons or flowers or, god forbid, visitors in my current state. I was melting from the inside out. It was hard enough to witness my own family witnessing that.

A philosophy professor in college once asked my class how each of us would prefer to die. I couldn’t answer the question, but for some reason I later came up with my own variation of it. I chose, instead, to wonder about the most embarrassing way to die. Looking at my current situation, I felt certain that the melting method would rock the death charts to within the top twenty most humiliating approaches.

The chaplain could not have known about the plastic hat that rested upside-down in my personal hospital toilet or that underneath my not-so-fitted bed sheet lay an even less fitted plastic mat used under “normal” circumstances for the potty untrained or otherwise differently continent-abled. Sure, it appeared I’d been sleeping during the middle of what was probably a perfectly acceptable afternoon, but I was in a hospital. I had nothing to be ashamed of, I told myself. More importantly, I should not be called upon to partake of such pleasantries as introductions while lying on my possible deathbed in a public hospital room. How thoughtless and maybe even selfish of him to barge in like that when I had specifically requested not to see him, I fumed to the best of my weakened ability.

Prior to the chaplain experience, I believed I had lost all my pride which, to my hospital-ridden self, seemed almost as useless as dignity. The chaplain experience changed that perspective altogether. If it hadn’t been for pride, I may have attempted to die from humiliation. As it was, my pride-inspired anger at the chaplain’s imposition and subsequent judgment bolstered whatever strength I had left.

Had the chaplain really judged me? I fleetingly wondered. It didn’t matter. Pride can certainly spark deception, self or otherwise-directed, and it often rises from a deeply rooted basis of illusion, just like dignity. The difference I noticed is that pride, at least in my case, seemed to support the types of delusions that can actually protect rather than tear down one’s confidence. I still had my pride, I realized then, albeit not very much of it. (Refer to previous paragraph re: toilet hat.)

Next ~ Part 7: Tests

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2 Responses to “My Rare Disease Part 6: Pride”

  1. nancy merinar says:

    Tara, I hope you remember me–I was your teacher years ago. I am a celiac too and I certainly can relate to your experiences. I really was waiting to read about your diagnosis. Who finally found out the problem that almost killed you? If you have the time please e-mail the final diagnosis when they (the doctors ) discovered the problem was gluten. You have written a very compelling account of the celiac disease. I was diagnosed when I was in my late 40’s. I did suffer but I was never as sick as you have been. I hope you are now in good health. Nancy

    • tmcaimi says:

      Hi Nancy, of course I remember you! The diagnosis is coming up – I’ll email that part of the story to you now. I am in good health, thank you. And I hope all is well with you too.

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