When I first lost the use of my hands, it felt like I was wearing extremely tight gloves, and my hands were ice cold. No matter what I did, I couldn’t warm them up. I would try to touch my face—since my cheeks were the only part of me that still had normal sensation—but even then, my hands didn’t feel cold to the touch. They weren’t physically cold, but the sensation was so intense that the medical staff assumed I was exaggerating my symptoms. In reality, the pain was constant and overwhelming. My feet experienced the same thing—tight socks, tight gloves, pain and numbness from my elbows down to my fingertips and from just above my knees down to my toes. There was no real sensation; doctors could prick me with a pen or pinch me, and I felt nothing except a numbing, burning pain, tingling, and the constant tightness of my joints.
I had to relearn everything. Feeding myself became my first goal. But the effort was so exhausting that I often fell asleep trying to eat a few spoonfuls of applesauce. My muscles had severely deconditioned from being bedbound, leaving me incredibly weak. Without sensation in my hands and with muscle tone still out of balance, something as simple as eating turned into hours of effort. Sometimes I would fall asleep mid-bite and wake up to applesauce everywhere.
I remember breaking down one day while still bedbound and unable to sit in a chair. I was trying to plug my USB cord into the charger and then into my phone, and I just couldn’t do it. Although my muscle tone was improving, my fingers still lacked sensation, and it felt like a cruel mismatch between strength and function. I’d pick up the charger, try over and over, fall asleep from exhaustion, wake up, and try again—sometimes ending in complete frustration and tears. I couldn’t understand why, after so much hard work rebuilding muscle, I still couldn’t complete basic tasks.
Another challenge was heightened sensitivity to electronics. Touchscreens felt like electric shocks, burning the tips of my fingers. Even plugging in a charger hurt. Filing or cutting my nails was nearly impossible—I had to rely on others because the pain was just too much.
I still live with that contradiction today. My hands and feet are strong, but without sensation, tasks remain incredibly difficult. I can’t hold a sandwich without it falling apart. I still eat with a built-up spoon and adaptive plate, and I still use a sippy cup. The frustration is relentless—knowing I should be able to do something, but my hands simply won’t follow through. And since we use our hands for nearly everything, the limitation affects me in a big way.
Recovery has been slow but steady. I’ve regained muscle use in my hands and feet, though the lack of sensation continues to interfere with daily life. Gross motor skills have come back better than fine motor skills. For example, handwriting is still a struggle—but I’m seeing improvement. Just today, I was proud to notice less shaking, less wobbling, and that I could hold the pen longer before needing a break. I even got through the entire exercise without stretching my fingers once, which felt huge.
Living in a medical center helps because I can ask for assistance with certain tasks, like putting on compression socks. But even small things can feel impossible. Something as trivial as unwrapping a Jolly Rancher or a miniature Reese’s cup becomes an exercise in patience—and sometimes I just give up and throw the candy across the room. It’s that mental tug-of-war between knowing I should be able to do it and facing the reality that my hands won’t cooperate.
One pattern I’ve noticed is that just before I regain new function, my pain and loss of sensation intensify. It feels like I’m moving backward, and then suddenly, I break through into new progress. I don’t know the medical term for this, but it’s real for me. Right now, I’m experiencing it in my left hand—my writing hand. I’d regained sensation up to the heel of my hand, but it suddenly reverted, and now the numbness reaches all the way to my wrist again. The frustration is real.
Still, I can’t complain too much. I’ve come a long way, and the progress continues, even if slowly. Since I’m so proud of how far my handwriting has come, I’ve decided to document it in a Twitter thread, starting from when I was admitted in May 2023. Below, you’ll find the link to that thread along with images showing the progress I’ve made.
Twitter 🧵: https://x.com/mrsearthastone/status/1956736140888690794?s=61
Practice makes progress! 📝
It’s been a long road! Learning how to use my hands again has been the most challenging part of my recovery. You don’t know what you got till it’s gone! I’m getting there! The handwriting looks good! ⬇️ Holding the pen steady?? ABSOLUTE FRUSTRATION!🤬
The first thing I tried to write as I was in and out of consciousness. There was A LOT going on at the time, but I’ll get into that later.
“Arrest her” “Close your mouth”
By this time, I was 60% conscious during the day and enjoying some hashbrowns I guess! 😋
‘Breakfast was good – hashbrowns again. I want to trying to hit 3 sentences. Trying to write three sentences.”
I just got my iPad and started trying to use the Penbook app to track my handwriting. It was difficult keeping the pencil to the screen, it kept slipping.
“Now this is what I’m talking about. This is what I was looking for. I wonder if I can find some connect the dots apps.”
Today! Still a little shaky, but definitely not as bad. The letters S, O, G and the numbers 2, 8, and zero, give me the blues! 😭😩
Here I’m just documenting my Lenormand card reading. I’ve started doing daily readings and handwriting to work on gross and fine motor skills.
A Neurologist told me that with the rate of my recovery, if I recover fully, and there is a strong chance of that, that the recovery would be between two and four years. I hit two years, back in May! So I continue to pray for steady progress, and a full recovery! #Goals 🖊️
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