My World

March 17, 2018

Still standing: The story of a ‘Tall’ woman who refused to fall

Sickle Cell: Medical centre performs Stem Cell transplant for two

By Muyiwa Adetiba

‘Still Standing’ is an auto-biography of a 52-year old woman. It was first published about 12 years ago. It is the compelling story of a writer’s 40-year old battle against a disease that has inhabited and ravaged her body. And having succeeded with her body, also attacked her mind.

The disease is called Sickle Cell Anaemia. The sufferers are called ‘Sicklers.’ There is no cure for it. Yet about 10% of the black population carry the genes and are therefore susceptible to it. It is a disease that destroys almost everything it touches directly and even tangentially. Lives, homes, relationships, businesses suffer wherever ‘Mr Sickle Cell’ visits. In the past, very few Sicklers lived beyond 21. Modern medicine has elongated that. But it is still a life lived by the day. A life measured by the number of visits to the hospital. A life controlled by ‘crises’—that is how sickle cell attacks are described. A life of physical and emotional pain.

The writer, Ms Toyin Adesola will be 53 in September this year. You could say she’s beaten the odds in terms of longevity. You could attribute that in part, to her parents being in the medical profession. Her father was a professor of medicine. Her mother trained as a nurse. You could also attribute that in part to the advancement of modern medicine. But a lot of credit has to go to the sufferer herself. Especially her decision not to wallow in self-pity and to make ‘lemonade’ out of the fruit fate handed her. Sickle Cell Anaemia has irreparably damaged her body—she is physically challenged—but she has refused to lie down in resignation to fate. This book, and what she is currently doing with her life are testimonies to the state of her mind and attitude to life. It is what she is doing with her life now that has aroused my interest.

But first the book, because that gives us an idea of where she is coming from. ‘Still Standing’ is a simple, lucid book. Its appeal is however in its clarity and honesty. The book takes you through the writer’s pains, starting from the first awareness of her condition to the numerous visits to different hospitals, sores that take months and even years to heal, injections that go straight to the bones, collapsed veins and her eventual disability. I had Déjà vu moments reading through the vivid account of her pain having read a moving article of a sufferer in a journal some three decades ago and having stayed in the home of a sufferer during a ‘crisis’ period before. But the book does more.

It takes you beyond the hospitals to the home of a sufferer. It describes how family plans are often disrupted; how homes often revolve around the sufferer; how easy it could be for both parents and sufferer to just ‘give up.’ It shows the inability of a sickler to cope with simple chores; how they hate being different and can’t help envying the siblings who are well. It shows her need to do ‘something’ with her life and her frustrations at not being able to. It shows her struggle for education against daunting odds.

It shows her attempt at suicide when it all came to a head. It shows her being ‘born again’ and finding peace in Christ. It shows her setting up and running a bakery. It shows, finally, her decision to write this book. The book is inspiring because it did not set out to inspire. It is the result of a journal she kept during long months of incapacitation and loneliness. It is also a candid story of a young, disadvantaged woman who tried to find a meaning and a purpose to her life.

I met Ms Toyin Adesola at her office in Surulere, Lagos two weeks ago.  It was at the instance of a close friend whose only son was a sickler for close to 30 years and about whom I had written two years ago. Having found healing for his son through a new, revolutionary but still perilous procedure which involves a complete replacement of blood, my friend has decided to devote some of his resources—time, money and knowledge—to helping sickle cell sufferers. It is inevitable that his path would cross that of Toyin’s. I don’t know what I was expecting her office to look like but what I saw exceeded my expectations. It is neat, simple but tastefully done. It has a touch of class that is not dictated by opulence.

Toyin was seated when I was ushered into her office so I couldn’t assess her height. But she had the typical frail, delicate look of a sickler. That was where it ended however. Her face was cheerful and often broke into laughter. Her voice was strong and confident as she told me her story part of which I had summarised earlier. The second part began after the book was launched.  The book made her a celebrity of sorts as she appeared on radio and TV shows. But rather than rest on her oars, the successful launch of the book made her realise there was much more work to be done. In spite of everything, the realisation that she might not have survived if her parents did not have the awareness and resources to support her has spurred her into doing something for sicklers who are in desperate need of help.

So rather than use the proceeds of the book for her own needs, she decided to set up SAMI, a Sickle Cell Advocacy and Management Initiative. SAMI not only provides awareness and education, it provides free medical clinic for those who are desperately in need of it. As at today, about 150 sicklers attend her free medical clinic every month. They are given critical, life-saving drugs free of charge.

What makes her story more laudable is that we are in a society that lives for self. People who are less challenged live off the society. Not Toyin. Many of us who are moved to give do so from our excesses. Not Toyin. We use wealth and positions as yardsticks to adjudge success. Not Toyin. She might not marry, have children or even have a meaningful relationship. I asked her about these and she just shrugged. She will not be defined by what she cannot have. She has rather chosen to be defined by what she can do to help her society. That’s my definition of a purpose driven life. In ten years, she hopes the monthly clinic would have become a daily hospital for Sickle Cell Anaemia. She will need our support just to keep going let alone achieve her laudable dreams.

When she got up and reached for her crutches to see me out was when I realised how really small and frail she is. But to me, she will always be a ‘TALL’ woman.

If you feel moved enough to help, please send your contributions to ‘SAMI XTRACARE Medical Outreach. GTBank 0208883073. Help save a life.