‘S is for Survivor’ – A memoir of hope

The book ‘S is for Survivor’ makes for harrowing reading. It is a small book, barely 100 pages and could be read in one sitting, as I did. It tells the excruciating story of Samira HarunaSanusi, a young sickle-cell patient who waged a seven-year war against the disease in various hospitals all over the world, […]

The book ‘S is for Survivor’ makes for harrowing reading. It is a small book, barely 100 pages and could be read in one sitting, as I did. It tells the excruciating story of Samira HarunaSanusi, a young sickle-cell patient who waged a seven-year war against the disease in various hospitals all over the world, albeit bed-ridden, and came out victorious. Samira is now clear of the sickle-cells and is writing to tell the world about it.
The decision to write the book must have been a very difficult one for the author. This is because it is a deeply personal, tell-all story. A catharsis of sorts, details a life growing up with medications after medications, rounds of painful crises and a tendency towards hopelessness and helplessness. Despite all these, it is now hailed as a peculiar success story with a concrete message – that sickle cell anemia has a cure and she is an example.
It is probably proper to start with a confession. I am not an impartial reviewer of this book. I am a family friend and have been for a very long time. I met the father, Haruna, when we were barely into our teens, at Government College, Keffi, in the mid-sixties, where we became classmates. He was an easygoing fellow, and like me an avid reader of novels and an Indian film buff. Consequently, we easily bonded. From Keffi we proceeded to ABU Zaria and at graduation in the mid- seventies, our paths branched out. He went to teach in the newly established University of Sokoto, and I was left in Zaria contemplating whether to remain in ABU Institute of Administration, where I was employed as a Graduate Assistant, or head back to Maiduguri my home to join the newly-established Chad Basin Development Authority. I headed to Maiduguri.
We finally re-united in the federal civil service in Abuja in the late-nineties. By then Samira was already a teenager and had assumed the status of a veteran in the battle against sickle-cell anemia.
Samira was born in Jos in 1988 where the father had relocated as a directing staff in the National Institute for Policy and Strategic Studies (NIPSS), Kuru. She was diagnosed with the sickle cell anemia barely eight months into her eventful life. Despite assurances by doctors to the parents that with a healthy life style, diet and daily doses of folic acid, she would have a normal childhood and a healthy life, everything went horribly wrong. Her life became a rollercoaster of crisis and pain.
 She writes that: “I’ve had many minor and major crises related to the disease and as I grew older, they increased in frequency and severity. There were episodes when I had to be admitted to the hospital for a week or two, receiving pain treatment, antibiotics and oxygen. There were also times when all that was not enough to help me get by and avoid missing school. The pain was mostly in my legs and chest. During episodes, I would have to be carried or assisted to walk. My family members turned into experienced masseuses because without rubbing or applying pressure to the aching body parts, I would cry in pain, and, sometimes, demand for a knife to cut off the aching leg or hand.”
When Samira was 15 a defining incident worsened her case and made the family seek for treatment abroad. On a family trip to their home in Funtua, a railway town in Katsina State, Samira fell into a crisis, and decided to see a doctor well-known to the family. The doctor misdiagnosed her case as typhoid fever. The treatment the doctor gave her unfortunately led to a series of medical adventures that got her to be bedridden for the next seven years. She went from clinic to clinic, hospital to hospital in Nigeria, and a number of countries outside looking for an elixir of life to end her debilitating condition. Finally, in Saudi Arabia the doctors told the family that nothing more could be done for Samira. At that juncture Samira had hit the absolute bottom of despair. She recalls those despairing moments:
“I felt like an old woman who was too old to function and was waiting for her dying moment. I was convinced that no one understood what was really happening because even I didn’t understand what was going on with me. All I knew was that it didn’t seem like I was going to get better anytime soon. So I lay there, and for the first time begged God to take my life.”
The family refused to despair. The father kept his network open and continued to seek information about advances made in the treatment of sickle cell anemia. At last he was fortunate to learn that a new treatment using genetic engineering involving bone marrow transplantation was then available in Austria and he quickly arranged to send her to Vienna. One thing led to another and a few years later Samira was pronounced free of the disease. 
I suppose the book has achieved the purpose for which it was written. It has certainly drawn attention to the suffering of sickle cell anemia carriers, and how widespread the disease is in Nigeria. It is shocking to learn that of the 200,000 infants born with sickle-cell in Africa every year, Nigeria accounts for about three-quarters of these births. More shocking is the fact that 60 percent of this number will die as infants and the rest would hardly go beyond the age of 21.The most agonising aspect of this is the crises and intense pain sickle cell carriers endure. Samira’s debut book shows that there is hope that this statistics can be significantly lowered to the barest minimum by adopting bone marrow transplant as a cure.