I am Janine Sokwane a 39-year black female I was born with a motor neuron immune disease called Spinal Muscular, for short it’s a progressive disease. I couldn't hold my head up and crawl until I was six months when my mother thought something wrong, she immediately took me to hospital. I was diagnosed by a Neurologist. I started crawling with my head up and walking despite my diagnosis, growing older I started getting weaker, could only walk on my knees and when we had to go out my mom had to carry me on her back, mind you at this time I was a a teenager. I only used a wheelchair at School as my parents couldn't afford to buy me a wheelchair.
Despite my 'disability my parents always treated me "normal", I had to wash dishes and wash my socks and shirt after school and had to iron. Then my mom’s bosses found out that she had a disabled child without a wheelchair, and they bought me one. I had the most blessed parents! I say most best as my father crossed over to the land of Angels a few years ago. I'm now 39 exceeding my life span.
After failing matric I went into a dark space for years. Then after a few years I dusted myself off and when to college obtaining a diploma in Business Administration, Business Office, and Life skills. I have a very social life. I started to work at a Community Health Centre for five years. Then in 2016 April I fell into a coma the paramedics told my mom I may not make it as they struggled to revive me, and she should start praying. After couple hours I reacted but was in a coma for days after that in an induced coma. When I woke up the first person, I saw was my mom. I was disoriented not knowing where I was. I had dozens of drips, wires to stats on a ventilator and couldn't speak as I had tube in my mouth and down my throat.
My mom explained everything to me I then calmed down. I stayed in hospital nearly three months. Whilst in hospital I had a tracheotomy. With my pre-existing disease/ SMA and was told I would have it all my life. As I couldn't cough, I had to have a suction machine witch had a tube that I needed to put down my throat to get my secretions out or I'll choke on it as I couldn't cough. I slipped away a few times in hospital again. You know what I wanted most was water and I don't like water. Those was really trying times. But my mom was amazing without her I would not have made it she gave a lot of love as she always does, she was my strength. And all my siblings and others that supported me they never gave up on me the support played an immense part in my recovery.
It must have been hard because a year before that we lost both my father and sister months after each other. I was confined home as my immune system was severely compromised and it was easily susceptible to germs and I always had to have my suction machine with me as stubborn person I am it didn't always stop me from living my life after all I’m disabled and we know how to adapt and find different ways and creative ones to live our lives. After a year and a half, the tube was removed despite what other doctors said. And all the time I was in hospital I had this feeling of content and close to God, never afraid.
I also have Bipolar, Borderline disorder, PTSD as a was involved in an attempted car jack with a gun pressed against the window at my head. My character has brought me to many things. I also had to deal with being dismissed from my job whilst in hospital. I had to start fighting that. Cause due process wasn't followed. Especially as I was awaiting my application decision to be put on medical pension. After 'fighting' negotiating with my Neurologist dearly holding on for a hail Mary. He wanted me to stop working as the works both physical and mental pressure affected my disease. I so loved working, being independent and an ambassador in my own way to disabled people. Just showing we are as capable to do everything and being respected in a mainstream workplace. My application was lost many times by my supervisors and HR.
Conveniently I got dismissed at my weakest. Left without a cent and Medical Aid at my most vulnerable time. I'm still fighting that and not losing hope although many lawyers who promised to help me left me without explanation... Not having the monetarily means and physical strength I'm still trying all avenues. Cause it's not just about me anymore but all that been abused and mistreated like we are second-hand citizens.
My believe I'm a very diverse person... Believing in demonstrating, in honoring yourself and your own life. Inspire vitality, value you and others. Never let fear stop you but to let it motivate and don't let others infiltrate you with their values stand firm in who and what you stand for never let others have you to suppress your dreams and aspiration. Unblock your own mind... Learn strategies, empower yourself. Don't be overpowered. Identify and focus on what's important to you. Thereby unfolding all other possibilities. I'm self -disciplined and a diligent worker. Contentious and take initiative. I’m assertive, self-motivating with a strong character. I Believe in treating people with respect and the way I want to be treated. Being co-operative I see my interpersonal skills as one of my best traits. I'm ambitious a curious soul always willing to learn. As I was born with a life threatening disease was given a few years supposedly was going to be bedridden but I've healed and have a testimony
I hope to be part of this and want to thank you for this initiative. I appreciate it more than you ever know. Platforming how incredible we are cause we born with a rare disease which is a job on its own as you fighting for your life from jump.
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