My Chronic Illnesses

I always considered myself a healthy person.  I subsisted mostly on microwave TV dinners through my youth, due to the fact that my adopted dad was a quadriplegic and my mom was his full time caretaker, but outside that I was a fairly active kid, balanced my love of video games with my outside play, etc.  I didn't come down with colds or flu often, never had a major medical event before I was 24 outside of regularly spraining my ankles and having a small skin cyst removed from my collarbone around age 10. By age 22, when I moved out of my parents' house, I didn't have a general practitioner, and hadn't been to the doctor since I was in high school, when I developed a harmless rash called rosea.

When I was 24, I went to a place I'd gone every October since age 16, the Texas Renaissance Festival, in full costume.  I remember that as the day got going, I felt a little off. I had a weird numbness in the right side of my ribcage, a feeling I'd never felt before in my right hand.  I kept trying to pop my thumb to make it go away, but it never did.  My girlfriend at the time got mad at me because I kept stumbling into her and stepping on her feet.

When I got home, I felt like I had a really bad flu.  Spent about a week in bed, feeling awful. 

Once it passed, I resumed my normal life, made my coffee, and went to the grocery store for some half & half.  When I went to sign my signature on the receipt, (this part of the story is officially dated, lol) instead of the well practiced artful scribble that I intended to mark it with, what came out was... "bluh."

Nothing. Just a weird wiggly line.

Now take a second and think about that.  Your signature is muscle memory.  Most people don't have to try, or even think about, signing it.  It's like walking.  You just do it.

Except I couldn't.  I tried again. Nothing.

So I freaked the fuck out, went home, found a doctor, and went to get checked out.  He was very concerned, and ordered an MRI of my central nervous system. My mom came to Austin to be with me at the appointment when the results came back:

I was diagnosed with relapsing-remitting multiple sclerosis. The plaques, or scar tissue, on my brain and spinal cord indicated that I'd had for about 2 years, with no obvious symptoms. (Though in retrospect I do recall the slow onset of fatigue, brain fog, depression, and memory loss.) He then told me that most people with this level and pace of CNS damage should expect to be in a wheelchair in 2 years.

I knew my whole life I wanted to be a martial artist.  When I was a kid we were too poor. When I was a pre-teen I couldn't because being her husband's caretaker was a full time job, so I just started picking up sticks and swinging them around, imagining that a field full of dry reeds was a battlefield full of deadly opponents. But at age 15 I was able to get my hardship license, and my parents bought me a white 1976 Chevy half ton pickup truck. As soon as I had the mobility to do so, I went down to Alvin Kung Fu, and started training under Sifu Louis Garza. (RIP) I never stopped training after that, and it became a core part of my identity as well as a way of life, and one of the bonds that held me and my closest friends together.

When the doctor said those words, 2 years to the wheelchair, my first thought was, "I'll never be able to do kung fu again."

The next few months were a whirlwind of specialist referrals to neurologists, research and educating myself on the mechanics of and possible symptoms I could expect down the road, treatment options, and the possibility of having to freeze my sperm if I wanted to reproduce later in life.

I fell into despondence. As my mental health degraded, so went my physical health too.  Soon I lost coordination in my right limbs. I lost the hearing in my left ear, forcing me to retire from DJ'ing. My eyes stopped tracking together, causing visual impairment and inability to drive.  I got my handicap placard. Christmas holidays came and went, with Houston receiving a rare light snow. I tried to hide my cane in all the family photos.

...to be continued...

Fast forward to 2018. I'm in the middle of a messy breakup and divorce of a 16 year relationship, and the ensuing custody battle that accompanies it.  I have over the course of the last year gone from the peak of my physical condition to walking with a cane and struggling to compensate and live with a list of symptoms that keeps growing, and more and more of those symptoms are not explainable as related to my MS.  Cue a call from my sister, who's been chasing her own mystery symptoms not related to her T1D.  She's finally, through a year of detective work, come to the conclusion that we both most likely suffer from Ehler's Danlos Syndrome, a genetic defect that causes the accelerated degeneration of the body's connective tissues.  Common symptoms are stretchy skin (check) hypermobiity (check) a youthful appearance (check) gastritis / gastroparesis (check) and spinal degeneration (check) as well as a family history of early death by spontaneous heart failure. (check)

I began seeking out the advice of specialist after specialist, and finally all have come to agree that I have one of the more serious versions, Vascular Ehler's Danlos (vEDS) that has caused the enlargement and softening of my aorta, which is currently only a few millimeters from being considered an aneurism.

Spontaneous aortic dissection is the number one cause of death in EDS patients.

...more to come...