That Autonomic Small Fiber Neuropathy Thief

I was closing in on my first year spent at Side by Side Assisted Living.  I was also only 26 years old. As bad as that sounds, it was one of the best years of my life. From my very first tour there, I knew I was going to love it there. The assisted living ad rescued me. Before moving into assisted living I’d been at a nursing home. I suffer from a disease called autonomic small-fiber neuropathy. A disease that has stolen my childhood and adolescence from me.

My Sweet and Spunky Jeff

Being at Side By Side was awesome for reasons beyond just loving being out of the nursing home. On my first day there my eyes caught on a cute guy. He was this sweet but spunky forty-year-old man named Jeff. Now he was my life partner and had completely changed my whole outlook on life. Jeff made me want to stick around for as long as possible. That way I could enjoy my time with him.

Jeff was kind, smart, creative, and funny, and had also developed a knack for saving my life.

On the morning of October 31st, all I could think about was going trick-or-treating for the second time in my life later that day. Melody had promised to take me along with her kids.

A Grand Mal Seizure

To kill time in the morning, Jeff pushed me down to the corner store. He bought a sub and candy and soda, I bought a sugar-free iced tea. Then Jeff went to transfer me back into bed and I proceeded to have a Grand Mal seizure complete with hitting my head on the side rail of my bed repeatedly.  There it was autonomic small fiber neuropathy’s effects butting in again.

Thinking fast, Jeff finished lifting my thrashing and seizing body out of the wheelchair and put me in bed where he held me until the seizure was over. EMS asked me if I wanted to go to the hospital, they were putting some pressure on me to allow them to take me. After I finally gave the okay, they lifted me over onto their stretcher and drove me down to the hospital. I only went to the ER to pacify Jeff who I knew must have been terrified watching me have a seizure.

How I Missed Halloween

The hospital confirmed the Grand Mal seizure and kept me overnight for observation. By the time I made it home from the hospital the following day, Halloween was already over.

My Minnie Mouse costume hung in my closet.  I never had a chance to wear it or enjoy it. Every time I looked in my closet and saw it, I felt robbed. 

But you have your Jeffy, and that’s all that matters.

I kept trying to remind myself of this over and over. 

Part of me felt guilty that I wanted more than I already had, but I couldn’t help it. I was so excited about the idea of going trick-or-treating again. Now, I could just add it to the list of things in my life that I lost out on because I was sick.

Jeff saw me looking longingly at the costume.

“Want to put it on and I’ll take pictures of you wearing it so that it will be like you celebrated Halloween yesterday?” he asked me.

I shook my head no.  Even though I knew Halloween was just a commercialized American holiday, my religion didn’t really believe in it, taking pictures of myself dressed up in costume just seemed sacrilegious to me, I couldn’t do that.

“Well, there’s always next year,” Jeff told me hopefully.

Life Has No Guarantees

I nodded at him with tears in my eyes. It was such a little thing, but it had meant so much to me. It had meant gaining back some of the childhood wonders that had been ripped away from me at age 8 when my autonomic small fiber neuropathy symptoms had begun ripping my life to shreds.  Also, I had to wonder, would we both be alive a year from now?  Even another week was not guaranteed to either of us.