Still Here

THE PROLOGUE

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I am writing this from a wheelchair.

Not as a metaphor. Not as a way of establishing the stakes before a story of triumph. Literally from a wheelchair, in a rehabilitation facility, using a head tracking device attached to my glasses because my hands do not yet have the function required to type.

I want to say that clearly at the beginning because this book is not written from the other side of the experience it describes. There is no other side yet. There is only the middle, which is where I have been for three years now, and where I am still.

In June 2022 I was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy, CIDP, a rare autoimmune neurological condition in which the immune system attacks the protective covering of the peripheral nerves. Before that diagnosis I was a network engineer in Lagos, driving long distances at weekends to see my wife in Ibadan, watching my daughter Tiaraoluwa take her first steps, planning a life in the United Kingdom that had just begun.

What followed the diagnosis was not what I expected. Not because I expected it to be simple. I did not. But because the distance between what I understood a serious illness to involve and what this illness actually involved was larger than anything I had been prepared to imagine.

By 2024 I had been through steroids, IVIG, plasma exchange, Mycophenolate, cyclophosphamide chemotherapy, Rituximab, and an autologous stem cell transplant. The transplant was performed at University College London Hospital. I had been treated at the National Hospital for Neurology and Neurosurgery in London throughout the earlier stages, returning there to recover after the transplant procedure itself.

The transplant ended with a lung collapse. I woke up intubated on August 6, unable to speak, unable to move freely, machines breathing for me entirely. What followed was ten months in intensive care across multiple hospitals the National Hospital for Neurology and Neurosurgery and University College London Hospital in London, Salford Royal and Wythenshawe in Manchester before I was transferred to a rehabilitation centre, where I am now.

During that period I lost the ability to walk, speak, eat, and breathe without assistance. I communicated through an alphabet chart, one letter at a time. My wife learned to read my lips through a phone screen from another city so she could translate for the nurses. My daughter brought yellow flowers she had picked herself every time she visited. My best friend of over twenty-five years came every night to set up my breathing machine and left quietly after midnight.

I had suicidal thoughts. I was told there was nothing more medicine could do. I felt peace where despair should have been and understood later that the peace was the beginning of a different kind of fight.

I am still in that fight.

I receive IVIG every two weeks. The improvements are small. Some weeks they are so small that someone watching from the outside might not notice them. But I notice them. And against the background of where I have been, small improvements are not small. They are everything.