This is my story
I remember the day I first day I heard the words “Adhesive Arachnoiditis”. It was during an appointment with my spinal surgeon 2 years into rehabilitation after a disc ruptured in my spinal canal, requiring 3 surgeries. I wanted to cry… this was not supposed to happen! I was supposed to be walking after all this work.
My story was not like those I read of a miraculous full recovery. Despite hard work, I was plagued by being bedridden with severe pain, with my legs literally giving out. Walking became impossible and unbearable when I could.
I was terrified another disc ruptured or more surgery would be needed but was told I had AA and surgery was not even an option. I stayed in physical therapy, tried AFO’s (Ankle Foot Orthopedic) and KAFO’s (Knee Ankle Foot Orthopedic), robotic assistive braces and every non-invasive therapy you can think of.
I got sick of being bed bound and alone. I found ParaSport’s and an Arachnoiditis group, where many people were part of my journey to be functional again. I took complete control of my medical treatment and pain management plan (overseen by my GP). I began to experiment with medicinal cannabis for pain control (with therapeutic exemption for international sport), and utilized a manual wheelchair full time. This was hard…I still somewhat had the ability to weight bare for a short amount of time standing, my rigid legs and partially functioning right leg made this possible.
At times the pain made me want to end my life. Insufferable pain, I felt/was alone suffering in silence except to my physio team who no longer would support my goal of rehabilitation to walk full time. The new plan was learning to adapt and live from my manual wheelchair.
The manual chair caused the least amount of pain and I could finally begin to be active. I thank these therapists! They saved my life without knowing. They helped me transition as I would lose more mobility and feeling in my legs to the point that transfers, supported standing and driving with my right leg was the extent of how my lower body would work. I spent a lot of time in pain finding adaptations: literally 5 years and a year of self pity. I can now say I am in a good place. My pain management helps me function. I have learned to manage my neurological bowel and bladder on my own. I have reduced my infection rates as well.
Sports helped me become conscious of healthy habits which I continue to practice to be my best. Although I may never find a doctor to help me understand the pathology of this rare disease, I refuse to allow it to take me. I will continue to throw away (literally and figuratively) the anger, frustration, and pain; and push forward for those who can not. I am comfortable living life from a chair, being disabled and will continue to coach those in my community and help them to be comfortable with their disabilities while playing parasport.
I've stopped caring about other people's opinions of my body autonomy. Many times my disability has been misunderstood and so have I but I will remain resilient. I will be an ambassador and educate people on a rare disease that stops or takes many people's lives! This is for you my fellow warriors who we have lost and continue to be in horrific pain. You got this and so do I, we are resilient.
We are #Arachwarriors!
Have a story you'd like to share with us? Send us an email with your story of 500 words or less and we will be in contact with you.