I woke up with not much voice, still not quite right and worrying that maybe I have a cold. I haven’t been sick since I had Covid— more than a year ago— but I drank lots of hot liquids, chugged some DayQuil and ventured out into the cold.
The teenager had a 9 a.m. greatly anticipated appointment for a hearing aid fitting. When they put her in the test hearing aids, her voice quieted immediately.
Apparently speech tones have been difficult for her to hear for quite some time and the pandemic made it more obvious that she was reading people’s lips.
The doctor was greatly personable and loved the teenager’s enthusiasm.
From there we went to the neurologist— the first time I have ever visited one. This visit was one of many doctor appointments in 2021 I booked as part of my fact finding mission regarding my body and my cerebral palsy.
(My temperature was 97.6, so whatever is making me feel “off” does not include a fever.)
And so I talk with the assistant, the resident and the doctor. I was very impressed with the doctor and even more impressed that she kept checking in with me— “I want to make sure I address any questions you have.”
But honestly I got scared because when she first walked in she said, “so you think you have cerebral palsy.”
As if I had googled it and just came to that conclusion with web m.d.
And I’ve heard other people say it… but never experienced it before today. When you have a visible disability that you often have to explain to people, when someone threatens to change that diagnosis it’s very unsettling. I never expected to feel so uneasy that someone might challenge the very thing that has defined much of who I am, even if I hate the fact that it intertwined with my personal identity so deeply.
But spoiler alert, after examining me and watching me walked she touched my knees gently and said, “I agree.”
Not only did she explain things I already knew about the condition (it’s static and will not change), but she pointed out that I often step on my left foot. I literally trip over my own foot. She also sat on a stool beside me— so the doctor was below me making eye contact upwards. I have never had a doctor do that before.
She referred me to the physiology department, and thinks they may recommend Botox to relax my leg muscles and prescribe braces for my feet to help them face the right direction.
She also scheduled a head CT, warning me that it will show brain damage, but that young brains compensate for damage via their elasticity. (Is that the word?) I’m excited about this because it gives us a baseline image of my brain so as I age we won’t confuse my cerebral palsy brain with, say, a stroke.
And she was impressed with me, as doctors often are.
More on this journey:
- An explanation of retrolisthesis
- Discussion of recent physical therapy
- Interactions with people at work
- Going to physical therapy with my blind friend Nancy
- Thanksgiving update which talks about deadlifting with the teenager, weight training with cerebral palsy and physical therapy.
- Getting cleared by neurology for traditional physical therapy.
- My history and more about work in the warehouse
- Discussing my recovery from anemia with my doctor and starting to deal with my hip, spine and joint pain.
- Halloween and falling in the parade. Yes, in the parade. In front of the whole town.
- Getting an IUD to help with intense back pain.
- My last bout with a fall and bad pain
- The day my leg didn’t work
- The day my hip was crooked
- CBD medic
- Are disabled athletes more mindful?
- Weight training with disabilities
- Getting into a new training routine
- my first bench press session
- returning to work after a fall
- reaching out to a personal trainer
- Review of the Karen Killilea book from Karen with Love
- The first book in the Karen series
- Impressions from the Karen books
- Disability Pride Month
- A is for Abled Podcast
- disability and childhood trauma
- announcing my quest
- Finding the resources to grow