A collection of inspirational poetry written by Gafsa Garson, a Cape Town resident who writes with her thumb and has to use a wheelchair to get around.
Her collection of poems is available to download on Amazon Kindle.
Gafsa Garson (aka Gafsa Bux) was an operational nursing manager at Groote Schuur Hospital. In 2018 she started having severe back and hand pain and saw a neurologist and an orthopaedic doctor. The neurologist sent her to a mental wellness clinic as he thought she had a functional neurological disorder, fibromyalgia, and depression. I saw a psychiatrist and psychologist and they both tried to convince me I had depression and chronic pain syndrome.
Her condition rapidly declined, and she was diagnosed with bilateral carpal tunnel syndrome. She saw a rheumatologist who diagnosed me with hypermobility and osteoarthritis and was given steroid injections in her hands but the pain didn’t go away. She had bursitis in her knee several times and was injected with steroid injections. She saw a pain specialist and had a rhizotomy and neuroplasty for a herniated disc in her lower back.
These procedures did not help. After being diagnosed with more than ten comorbidities, she was declared disabled. The pain specialist referred her to a geneticist in September 2019 and she was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). Her comorbidities were caused by my hEDS. She was told her prognosis was poor.
She was medically boarded on 30 December 2019 and received no benefits. Since the lockdown started she could not apply for a disability grant as the South African government has suspended new disability cases for months. She lives off donations and her 70-year-old father is looking after her and her daughter. All the doctors she has seen were shocked by how her condition deteriorated and they had little knowledge of EDS. She started her own research by joining almost 50 EDS groups.
She started an awareness campaign by talking on radios about EDS and living with pain in Cape Town. Even though she lives in severe pain and cannot afford my vitamins, she started a pain survivors Whatsapp group. She writes with her thumb and started writing poems. Her motto is to never give up! She feeds her mind positive thoughts to get positive results and also practice meditation.
She is bedridden at the moment and mostly uses her wheelchair to move around. There are days that I have severe pain as I have polyneuropathy and lumbar nerve damage. She cries and tells herself that tomorrow will be a better day. To all EDS warriors, our pain is real, and believe in your capabilities. If I can do it then other EDS warriors can do it too.
Have hope and faith and believe in yourself and practice self-compassion. Blessings to everyone.
