By Lara Cookey, Accra, Feb 2013
When I became unable to sit up for more than a few minutes at a time, and the most basic tasks became difficult, I found myself bed ridden, and needing help with so many things. I had profound muscle weakness, and realised with slow clarity that I was now disabled. My symptoms were mild and sporadic at first, spanning back some twenty five or more years, and now I can see the cause of some ‘episodes’ in my teenage years. I am fortunate to have got a diagnosis some five years ago, and was told the culprit is an ‘auto-immune’ condition. A situation whereby one’s own body goes ahead and wages a war against itself. I discovered that each individual is unique in how the effects of this self-body-war takes place. There are all kinds of names for this underlying auto-immune anomaly-Multiple Sclerosis, Diabetes, Rheumatoid arthritis, to name a few that most people have heard of, but my assailant is called Myasthenia Gravis.
When I was diagnosed, I started to search for support groups in Ghana, indeed I wrote to the Myasthenia Gravis Association in England, and also the Association in Australia by email, in my bid to get together with other people living with this condition. Both groups regretted they could not offer much support beyond my joining their online forums. Their websites had a lot of information that assisted me greatly in understanding, and coming to a place of successful management of my condition.
I heard about Sharecare Ghana through a friend and visited their website. One thing led to another, and I began to attend meetings.
It has been a great journey for me, since the early days. It was so valuable to my psychological well being to meet other people with similar stories, and varying degrees of disability. I understood better than ever before what it means to be disabled, and that is not just my own personal experience, I was enriched to hear other people’s account of their experience..
Sharecare Ghana has become more than a support group for me, I have been given the opportunity to contribute my effort to the support of needy children with neurological conditions. I have become bolder in advocacy for the disabled, and people living with neurological conditions. Apart from that, I now have a group of new friends who look out for me, and I look out for them. People living with disability can be the most resilient, positive minded people you will ever meet.
I have now returned to full mobility after several years of management through medications and physiotherapy. With many of these conditions, medication alone is not enough. If there is anything I would say was of great need apart from medications, it is physiotherapy and psychological counselling. Learning to accept my condition was greatly enhanced by my interactions with Sharecare Ghana
I doff my hat to the founder Nana Yaa, whom we all fondly call NY. Do not be fooled by the outward appearance of this diminutive looking lady, walking with a frame. She is a passionate, and strong advocate with a bold vision to reach out to others in a similar predicament as herself. Her drive and enthusiasm in the face of her many challenges has been an inspiration to me. On the occasion of the fifth anniversary of Sharecare Ghana, I send many congratulations, and gratitude on behalf of those who have received support in one form or another. I applaud this effort to reach those who have been forgotten. This means by which a voice is given to those who suffer various challenges, silently. NY is our unsung hero, and we are all grateful to God for her life.