Tuesday, May 31, 2020.
It’s been about a year. It’s the end of my birth month. In some ways, I started this journey in December 2020 when I contracted Covid-19.
I remember standing in the Bizzy Hizzy warehouse, at 11:45 p.m., placing the last extra small clothing item in my pick-cart. I leaned against a nearby pole, my joints all screaming.
And I thought to myself, “I’m one month into my job at Stitch Fix. Maybe I can’t do this. Maybe I’m too old and my body can’t take it. Maybe I can’t do anything anymore.”
I was chilly that night, and it was December in the warehouse, so I didn’t think anything of it. Until that moment. Leaning against that pole almost too weak to stand.
I was sweaty. My hands were clammy.
I had a fever. The system at work — the nurse, the temperature checks— had missed it because I normally run low. My fevers don’t numerically look like fevers until they are very high.
And in that moment, I released a breath of relief.
I was probably the only person in America grateful to suspect that I had Covid-19. (And I did.)
Because Covid-19 was easier to deal with than the prospect that I might be too disabled to provide for myself.
I would have to read these blog entries, check my medical portal and review my podcast history to tell you the exact journey of the last year and a half, and if that interests you— I’m considering writing a memoir (Upright! Gravity is a Harsh Mistress). My husband thought of the title.
I listened to disability podcasts (such as A is for Abled, Disability After Dark, Stompers in Love and various titles from the BBC) while working at the Bizzy Hizzy as I grappled with my own identity. Am I disabled? Do I pass as normal? Do I make my body do more than it can? Or should?
These questions, and recovering from Covid, and comorbidities like anemia and weight gain, as my spine and hip problems started to bother me more and more, led me on a journey to recommit to fitness and to gain more knowledge and collect doctors that would be an asset to my medical team as I age.
I have blogged about that entire journey— from my first session at Apex Training to finally finding a local doctor that understands cerebral palsy.
She expanded on my previous diagnosis of spastic cerebral palsy and added the term diplegia, which means it only impacts my legs. She frequently told me that I self-correct very well and added that while my gait was inefficient, it was functional and it was mine… so that makes it beautiful.
My new doctor is a neurological physiatrist— with her initial training in spinal bifida which she then expanded into seeing cerebral palsy patients.
She listened to me, reviewed my x-rays with me, gave me an exam, watched me walk, and studied my shoes as if she were reading my fortune with tea leaves. She described my walk as her fingers traced the wear on my shoes.
She also complimented my “taco Tuesday” days of the week socks.
My recent disability leave from work has improved my fitness and my health greatly, so I had no pain to report. But I told her I was looking to educate myself and to know what doctors to call and when.
And she told me a lot of things I already knew— not to let myself get too tired, for one. And that I need to continue strength training and improve the mobility in my ankles (and today at Back in Line Chiropractic, Dr. Jensen gave those puppies a work out).
I also knew and understood the domino theory of my own health, that injuries like what happened to my ringer finger impact all of me, but she explained why. I’m not sure I have this 100% correct (just like I previously misused hemiplegia, which refers to right or left side of body vs. upper and lower body), but she said my brain tells my lower half not to do anything until given a signal, but as a person, I start walking (for example) and now my legs and my brain aren’t working together.
Because of this, if anything goes wrong in my body— even something as minor as constipation or an ingrown toenails— my entire system can go haywire. So, if I’m having issues, I need to examine my whole self. And if I don’t find the problem, I need to call her.
Cerebral palsy is a static condition, meaning it doesn’t get worse, but as I reasoned earlier, the decades of wear-and-tear on a body not used in the mechanically proper way can create new issues.
So what are my options if I find myself in decline?
- First step would be to use muscle relaxers. I currently have a prescription for flexeril, which doesn’t seem to do anything. She would try Baclofen or Tizanidine next.
- If that doesn’t help, she would inject Botox into my muscles.
- And if I still had issues, she would move to bracing.
But as of right now, I have good muscle tone and self-correct so she doesn’t want to mess with things.
I feel like I found the final link on my medical team.
I am so relieved.