What Hat Are You Wearing?

This picture was taken in April of 2019. I had been admitted to the hospital for neurological problems where my whole body couldn’t move except for my left hand and could talk. At that moment in time, my neurological problems were just beginning to be uncovered. I have now been diagnosed with a neurological autoimmune disorder, a fused thoracic spine from degenerative disc disease, and a genetic neurological disease. I’ll just stop there. Diagnoses can be boring and that’s just the neurological stuff 😉!

Anytime you get admitted to a hospital with strange neurological symptoms that don’t have a clear diagnosis, you have to undergo a psych evaluation as anxiety, depression, etc. can cause significant neurological problems. They call it “functional neurological disorder” these days. I don’t have that, but you get a psych evaluation regardless as there is treatment for it.

I was diagnosed with transverse myelitis just slightly over 4 years ago, which is a neuro immune disease. You could ask 8 different neurologists their take on it and get 8 different answers.

I was using one of those walkers with a seat around my house, but my pride wouldn’t allow me to use it outside as it made me feel like an “old lady”. So this doctor busts into my room exclaiming that she had transverse myelitis too. Her specialty was in psychiatry and neurology. She knew I wasn’t crazy. She also knew my growing limitations were making me sad. She had gone over all my old records, including ones when I went to Stanford for a second opinion and believed it was transverse myelitis 4 years ago. Her point wasn’t so much to diagnose me. She wanted me to move again.

She validated the idea that I would need a custom lightweight manual wheelchair as FINALLY a doctor found it unacceptable that I had seriously fractured 7 bones in 2 years from falling. I remember joking to her that I just tape my fingers and toes together now as it’s cheaper than going to the ER for an X-ray when they would just tape them anyway. There was camaraderie in her understanding the incredible difficulty of falling over constantly from a neurological disease that literally strikes 1 in a million so no one understands.

She went above and beyond to work with me daily beyond her normal shift in the ER and brought in her sidestix forearm crutches that are designed for people with all kinds of disabilities to enjoy the outdoors. This picture is my taking some of my first confident steps in years where I felt secure. I was still terrified of falling over and kept telling her I was going to, but she kept reassuring me I wouldn’t. I didn’t!

After my 2 week stint in the hospital in April of 2019, I was incredibly sad to say goodbye to her. I was afraid to lose her guidance as she got it. She understood. I left her with a promise that I would be completely different in a year.

My one year later using my own sidestix forearm crutches in April of 2020. I kept my promise to her, more importantly, I kept my promise to myself.

Interestingly enough, I have wanted her to know that I did it. She found me on Instagram a couple weeks ago. She and I sent some personal messages back and forth. She thought it was incredible to see pictures of me hiking. She was inspired by my positivity as in those hours in the hospital getting me walking again, I told her about my life. I told her a lot about my trauma.

She inspired me a year ago as she told me about her story of how she rehabilitated from transverse myelitis. I saw a picture of her riding a bike today.

I will always be physically disabled, but it doesn’t mean it has to stop me. She was the first person to tell me to sit with the idea that “you have never been broken. Your body is broken, but YOU as a person are not broken”. I carry those words with me constantly.

It had me thinking about the hats I have worn in life as we all have several. I have worn the hat of victim, trauma survivor, being sick, friend, daughter, mother, writer, artist, disabled, career woman, student, doormat, yogi… I realize those are all just labels, and my entire lifetime I have hated labels as a way to define me. So today as I ended up in bed by around 1 PM fast asleep as I completely overdid it the past couple days with taking long hikes a couple days post surgery with completely numb legs, I decided I’m wearing the label of “perseverance”.

It might take me a couple days to recover, but I’m pushing my energy envelope just slightly further each day as I’m finally getting the medical treatment I need that gives me just enough health to tackle the emotional stuff from a place of strength, centeredness, and “perseverance”.

What’s a strong label you can attach to yourself? I went from total victim to perseverance. It wasn’t overnight. It took years of hard work, but the hard work has been much more worth it than continuing to live with the label of “victim”.



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