“Life after a spinal cord injury is like relearning, reliving and restarting your mind, body and soul. It is a road filled with tears, despondency, anger, regret and willpower. Everything changes; it’s not the fact that you are doing things sitting down or that it takes ten times the effort than before. Everything takes time. The mundane tasks like cleaning the house, doing laundry, getting in and out of bed and bathing yourself become monumental tasks.
When you have a disability, many people start treating and looking at you differently. I remember how unfairly my grandfather treated me after my accident. I was only a child and I did not understand his anger towards me. He did not treat me as he did the other children – for some reason he was harder on me.
My mother told me later in life that he could not handle the judgements and rumours in the village. In many African cultures, there is a lot of stigma surrounding disability. At the Xhosa-speaking rural area where I come from, it was believed that when a misfortune or a tragic event happens it was because of a curse cast upon your family or it was some sort of punishment to you and your family because someone in your family must have done something wrong. Till this day I still hear such notions, even from religious people.
Spinal cord injury limits you, takes away your independence and privacy. There is nothing anyone can ever prepare you for what you go through physically, emotionally and mentally.a There is neurological rehabilitation that helps prepare you to get back to your old life. You are given tricks and tips to manoeuvre into your new life, but once you go back, things are never the same. Your body will never be the same and sometimes your mind too.
For my first rehabilitation, I was six and did not understand what was happening but the second time, in 2015, I was diagnosed with depression and anxiety. I was hopeless and tired of being sick.
I met a friend in rehab, Andiswa Mzotywa, a 36-year-old mother who lives in Mdantsane, East London. Andiswa suffered a spinal cord injury in 2015 that left her a quadriplegic (paralysed from the neck down). Before the accident she worked at Daimler Chrysler as an engineer.
She told me “Life is difficult and complicated now but the support of my family is what gets me through even in the days that I feel depressed and hopeless. Praying helps, it gives you hope and offers you peace of mind. It gets you curious about when things are better; it makes you look forward to the next day.”
She saysid she feltels limited most of the times and recalleds a recent visit to a restaurant with her family. “Before going there I had called to make sure that their restaurant is wheelchair accessible and they were so proud that it was. When I got there, they only had a ramp, no wheelchair accessible bathrooms -, just a ramp and they thought that was enough. I feel that with all the legislation in place to make the lives of people with disabilities easier, not much is done to implement them. We aren’t taken seriously. It’s funny that I’d see people with disabilities before I became one but I never really took time to really see them. ‘’
Disability is expensive. The house had to be modified and assistive devices had to be put in place to assist my daily living. My family home was a typical village mud house. It is still the same but I have adapted to it. Able bodied people do not have to worry about whether a wheelchair can fit through a bathroom door or whether one’s bladder will behave and one will not have urinary tract infections which are caused by the indwelling catheter that one uses to help empty your bladder. As a disabled person, you are always anxious.
Sister Bentley is a neurology rehabilitation nurse and an expert in pressure/bed sores. Her job is to help and equip spinal cord injury sufferers on how to adapt and live life positively after such a life changing experience. She empowers spinal cord sufferers by teaching them how to take care of themselves by eating a healthy balanced diet and exercising the parts of the body that still work. This not only keeps one’s muscles from atrophying but relieves the body from the constant nerve pains that come with a damaged spine.
‘’The only way to come out of this stronger is to have willpower and something to live for. You need to know and truly believe that this is not the end of your life,’’ echoed Andiswas said.
Having said all that, there is life after spinal cord injury, a fulfilling, happy and productive life. I have managed to get myself educated and I am still pursuing my dreams. I have met other spinal cord injury sufferers who are doing wonderful things. It is not easy but every day you have to fight and hope. Listen to your body; do not pressure yourself. You w’ill get there – one step at a time. No need to rush.
by Thuthula Sodumo
