Discovering Chiari Malformation

I have been assigned 3 self reflection papers for a class this session. September is Chiari Awareness month and I wanted to share my reflections with my instructor with all of my readers. I hope this helps you to see the significance of my battle with Chiari Malformation. I was healed, at least for the time being, by guided hands…there are few who are as fortunate and blessed.

This particular class requires a great deal of effort and academics on my part and thus far I am earning a solid A in the class. This paper below, as well as the one mentioned in my writings received 100% grades. I don’t take any of this for granted as I know many still suffer the frustrations, without end, that I now face only when I’m exhausted.

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Almost 3 years ago I was thrust into the disorienting world of Chiari Malformation. Over the period of a few weeks, my neurologist had run a gamut of tests to determine the cause of my rapid neurological deterioration and non-stop headaches. My vocabulary was suddenly filled with acronyms–MS, CM, CAT, MRI, MRA, MRV, EMG, VNG, CDP, CSF, etc.– and an endless list of Latin based medical terms.

To say that I was overwhelmed would be to significantly understate my emotional state at the time. Each possible diagnosis researched on Google and WebMD escalated my anxiety beyond proportions of what any normal person could tolerate and remain in good health. To put it quite abruptly I was a literal basket case.

I doubt that I will easily forget the feeling I had when my Neurologist rattled off a few words that should have meant nothing to me. “Indeterminate cerebellar tonsillar ectopia measuread at approxiamately 5 mm…” This one short statement, documenting a discovery on a brain MRI, abruptly uttered with a matter of fact presentation, changed my life. For some reason the idea that I had tonsils in my brain caught my attention. I halted my doctor and asked for an explanation.

He quickly explained that I had a portion of my hindbrain herniating into my spine. As though that was no big deal, I was supposed to allow him to move on in telling me they still had not discovered the source of my ailments. I couldn’t get the significance of my brain not being where it ought to be out of my mind. I pressed for more information and he finally blurted out the words Chiari Malformation.

Thrust into the world of brain disorders and incurable diseases I researched and studied Chiari. I had to discover what made my enemy tick, where it was weak, and where it was strong. I learned this insidious condition destroys the lives of those it inflicts. It steals your intelligence, independence and strength leaving in its wake a fragment of the person who existed before it began the fierce onslaught of war.

This week when I received the email with the feedback from my decolonization paper, and later my grade, I realized the full significance of the healing I have experienced. Three years ago when I struggled to retain any new information and form clear thoughts I never dreamed that I would be in college, let alone doing so well.

I was challenged and overwhelmed by life last week, this week as well. I had to find a way to work fifty-five hours, at my old and new job, take care of my children and get through my schoolwork. I was not expecting to change jobs, and schools nearly simultaneously. Quite literally I wanted to cry many times.  My homework is being turned in later than I prefer but it is completed successfully. At the end of this week, although exhausted, I’m encouraged that I’m stronger and more focused than I realized. In my own small way I have conquered the enemy of Chiari Malformation.  

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