Five years to the day

Today marks five years to the day since an unknown virus devastated my nervous system and respiratory system.

Five years.

Half a decade.

260 weeks.

1825 days.


Coincidentally today is also my last day of school. At least it’s not Friday the 13th again.

These past 3 and a half months have been a whirlwind. Two stays in the PICU once after a bronchoscope and laryngeal Botox injection (5 actually) due to respiratory distress and inability to speak or swallow. And another stay in the regular floor. I have finally gotten my voice back partly though it is only a whisper and I still sound like a seal breathing due to Stridor. There has been many new questions, little answers, and multiple new diagnosis's. Dystonia in particular, Biphasic Laryngeal focal Dystonia is one of the less common forms of Dystonia, though one of the most common forms of movement disorder, Dystonia on the whole is on the rare side. The subtypes of the disorder are even rarer. Currently they are waiting for approval for genetic testing to test for mutations in genes identified to cause Dystonia such as DYT1.

It hit me recently that I will be stuck with this incurable potentially debilitating disorder for the rest of my life in addition to vocal cord dysfunction and the fact that I will almost certainly never get my sense of taste and smell back (The virus destroyed part of my 7th and 10th cranial nerves) in addition to whatever else is going on- there’s some type of GI component going on as well based on the swallow study I had in the PICU. There’s always something new, it’s a cycle of sorts.

Five years ago today my life turned upside down. But it is not all bad, I had to switch instruments yes but I happen to like percussion much more, and seem to have more talent with it too. I’ve made new friends, and continued friendships with old friends. And the unfortunate circumstances have helped my biology grade for sure.

Until next time,
Max