My SMA Journey (Smiling through it all)
- sanah228
- Sep 4, 2024
- 3 min read
At the age of the one years old, I struggled to walk independently (I walked using the assistance of furniture around me along with crawling on the floor to get around too)
At the age of three years old, my mom took me to the hospital where I was diagnosed with Spinal Muscular Atrophy (SMA). My mom felt very emotional and as though her world had shattered.
Until the age of 11/12 years old, I used a walker as a mobility aid and did all tasks independently.
Sadly, I had severe scoliosis by the time I reached the age of 12 years and had to have surgery immediately to straighten my spine (I now have two rods either side of my spine and screws which help me sit up straight)
After my surgery I remained bed bound for eight weeks. I can remember feeling confused as I experienced a drastic change in the lost my strength and ability do things independently. Afterwards when I was able to move, I became reliant on a wheelchair for mobility and also required the help of carers to support with daily living. When I first started having carers, I felt very annoyed and frustrated that I was no longer able to wash myself or go to the toilet independently.
During my teenage years, I decided ti reinvent myself through my fashion sense and clothing. This was my tomboy era. I now realise that this may have been a coping mechanism to distract myself from what was happening around me.
I went to school and completed my GCSE’s, then went to college to study creative media at level 3,. This was followed by university where I studied BA Film and TV Production and graduated 🎓
Between the time I was at college and university, I struggled to accept my disability and was in denial. To reinforce my perception of strength: I spent a lot of my time at the gym thinking that that everything would be ‘fixed’ and I would feel better.
From age 24 - 26, I was lucky enough to trial life changing treatment for my disability. (the approved drug Risdiplam). The aim of the drug was to stop my muscle weakness from deteriorating and to increase my strength and energy levels. It helped IMMENSELY. I felt a lot more confident. My gains were: improved neck control, improved balance when siting, better breathing and speech. Unfortunately, due to health complications I had to stop taking the Risdiplam in 2023. This was because it did not react particularly well with already present chronic illnesses. Currently. I am maintaining my strength through working with my physiotherapist and wearing my leg brace. I feel grateful that I have the support needed to maximise my muscle strength and delay progression in muscle weakness.
Now, I can say with confidence that I accept my disability and am continuing to work on my mental strength, following my passions. This includes creating artwork and selling it, and having the opportunity to host art workshops. Overall, I am prioritising doing the things I love.
The most important lesson I have learned is that although physical strength is important, mental strength is 100x more. My worth is not determined by how much I can or cannot do physically but how I can maximise the physical abilities I do have and mental strength. The light that I carry within me is the most important and the strength to keep going every single time I get knocked down and get back up again.
If I had the chance to walk tomorrow and live my life able bodied, would I take it? For a day, yess. To feel what it would be like to run, ride a bike and dance.
Sometimes, I get the people around me to do the things that I desire to do physically, but can’t. Living my life through them at times. (Thank you Hina, for jumping in puddles, dancing and wearing high heels).
Living with my disability has helped me become the strong and resilient person I am today.
I am grateful for all the people who have helped me along the way, to become the person I am today. I am grateful to experience every moment of life. It is truly beautiful. I remember at the times I was struggling, other people were the light for me, but now I can be he light for others who might need it too.
Spinal Muscular Atrophy | Disability Awareness | Chronic Illness
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