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Note from Michael: I’m not really sure when Sarah wrote this. Time has been a blur for the past year. I wanted the public to know what Sarah thought in her own words. 

Also, these are not pictures we took at the park. We would rather keep where we went private. You Floridians can guess if you would like. 😉

Sarah:

I asked Michael on a date this week. That would be a typical statement from a 20 something newlywed, except we are anything but typical. Dates have become a foreign word, only used for the shriveled up food product I can’t consume because of its high glycemic profile (for now at least). I was really hoping we could have a lovely day at a quiet park with Michael reading aloud a book, conversation in play, and a laughter reverberating against the rhythmic sounds of nature.

Except everything is amplified because of my current condition.

Sounds. Pain. Everything.

Michael pushed me in the wheelchair, trying his best to slowly move my body over the unsteady gravel then to the bumpy ramp. As soon as we were positioned in a sitting area, I broke down. Wailing screams and utterances of pain escaped. I couldn’t seem to stop crying from the pain. (Unusual for me because I was passing a kidney stone at thirteen in class with stoicism that only showed pain through gritting of teeth and rubbing the site of internal movement.)

Unfortunately, every slight bump activated my nervous system, propelling it to zing in pain I could not plug up. Pain florida-743328_1280that had to be vocalized even though I’m a ‘make-no-scene’ kinda gal. Were the screams a type of the plethora of seizures then? Was it a side effect of one of my anti-convalescents? I started the screaming when I began taking this specific medicine, so I’m simply trying to find a correlation to the incident. It’s difficult to distinguish what is what anymore.

Passer-byers at the park would walk by, clunking their footprints. In my sensory perception, it felt like T-rex came to the 21st century and learned to operate a cell phone. My head would immediately tic (motor tic) and my voice would emit an involuntary vocal tic. Embarrassment flooded.

Michael decided to gently push me to a more subdued location away from people. The experience left me drained. He began reading encouraging Scripture passages. Two seizures shook my body as sounds from a school bus filled the quiet park that was meant to be a preserved spot of old Floridian wildlife. Maybe he handed me an rx pill to be used in case of emergencies that he always kept on his person? I don’t remember.

Preservation certainly did not equate to tranquility. A couple of absent seizures followed which prompted Michael to cut our date short.

I was so frustrated with myself. I just wanted to be a ‘normal’ wife. I took all of my rx meds; I did everything I was supposed to on the checklist. But my body still has a long way to go.

Michael tells me to remember how far I’ve come, not focusing on where I am today. It’s so difficult to keep a positive frame of mind. But I know I must re-frame my mind daily if I want betterment in health. I know I will get through this. I know healing will come.

I’m not one to usually share my private thoughts, but I hope it can offer healing and hope to anyone facing their own struggles. :) Never give up my dearhearts, I am fighting alongside you as well. 

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  Sarah & Michael Chardavoyne