Finding Strength in Small Steps: A Patient's Guide to Recovery from Paralysis
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Written by Maria Paula Galvis
Curated by Katrina Parra
My first days in the ICU were painful and filled with so much uncertainty. The pain was often so bad it didn't let me think or even be fully conscious of my situation, but I do remember worrying that I would never be able to walk again. Every day in the hospital, I wondered when it would end, when I’d be able to walk and move through the world with ease. Deep down, I believed that recovering from paralysis wouldn't be too complicated, maybe a couple of months, like when the effect of something just wears off.
What kept me hopeful were the patients my family connected with, including Katrina from the United Porphyrias Association, a foundation in Medellín, and the girls from "Alas Púrpura." They encouraged be to believe everything would be okay, that even though it would take time, I could regain my strength. When I the doctors told me it would take a year, I was incredibly frustrated, but I kept going.
“Every day in the hospital, I wondered when it would end, when I could walk and do my things with the greatest ease.”
-Maria Paula, AIP patient.
The Power of Tiny Victories
My recovery was built on many small triumphs. From moving my fingers a tiny bit to being able to walk on my own. My left hand was more affected than my right, so when I could finally move the fingers on my left hand, it was an unforgettable event.
Other victories included gesturing well enough for my family to understand me, being able to touch my head alone, scratch a part of my face or body, and bending my knees. Bringing food to my mouth by myself, and liquids too. Sitting on the edge of the bed without help. Each gain was a celebration.
My biggest advice is to let the exhaustion and frustration out.
There were days when I didn't want to do therapy because I felt so bad, frustrated, and anxious. I would allow myself to feel that way, but not for too long. It helped a lot to let it out and I didn't accumulate feelings that could later destroy me. My family was a great support on those days. They understood me and would let me skip the day's therapy, or they would compensate with massages or other exercises that weren't as demanding.
Maria Paula doing physiotherapy.
The People Who Carried Me
Physiotherapists are so essential, not just in their professional responsibilities, but as people. Most of the therapists I worked with were as determined as I was to help me progress. They made me laugh, they distracted me from my reality, they played music during our sessions because they knew it would put me in a better mood. Even though they were very strict, they also supported me on the difficult days. It’s a profession that requires a lot of dedication and I was blessed to have them.
Learning to Listen to My Body
Today I still get tired a lot. Everything I do demands a lot of energy. So I listen to my body.
I know I'm overexerting myself when I start to get headaches, dizziness, and extreme tiredness. On those days, I don’t always do my therapy. Or I’ll do my exercises but with a lot of active pauses and a lot of rest. I’ll take a nap after.
Maria Paula, now, recovering.
“It’s okay to take a day. It helps clear your body and mind so you can continue with what comes next.”
Everyone is different, go at your own pace. Let your body feel what it has to feel. Don't repress anything, don't hold onto anything. Because it's better to take a day to breathe and rest than to face future days full of frustration, extreme tiredness, and anxiety. Taking a day is not bad; on the contrary, you help clear your body and mind so you can continue with what comes next.
Read Maria Paula’s story with AIP here.
For more information on acute intermittent porphyria and managing symptoms, visit Porphyria.org or contact us at info@porphyria.org. We are here to support you in your journey.
Maria Paula Galvis is a resilient AIP patient and advocate from Colombia. After experiencing a severe porphyria attack that led to complete paralysis, she embarked on a challenging journey of recovery, rediscovering strength through small daily victories. Her powerful insights into rehabilitation—emphasizing patience, self-compassion, and celebrating progress—inspire others in the porphyria community to navigate their own paths with courage and hope.
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