In Their Own Words

Granny - Theresa Ollivierra Guzman Reece The Surprise Disease
Giselle M. Pierre-Nicholls
Diego Martin Trinidad West Indies

My grandmother was born the fifth of six children, on March 14th 1917, in Belmont, Trinidad. Trinidad is the southernmost Caribbean island and situated off of the coast of Venezuela. She lived her whole life of 86 years in various parts of north Trinidad, Woodbrook, Cocorite, and Diego Martin. She worked as an accounts clerk. She was married and had two children. Her husband died when she was 37. She later remarried and was 58 when her second husband died.

 Around May 1986, my grandmother, then 69, started complaining of a weakness in her knees. None of us knew the seriousness of what was in store. Her doctor at the time dismissed it as a sign of getting older. At 15 I did not question this verdict. A few tests were done, but none showed anything was wrong.

In August 1986, she awoke one morning and could not get off the bed. All family members were in disbelief. How was this possible? I remember holding her hand and trying to get her up. The thought of just waking up one morning and not being able to get off the bed seemed so incredible.

By this time we had switched doctors. More tests were done. None were conclusive for any disease we knew. Eventually, her GP diagnosed Acute Transverse Myelitis. “What on earth was that?” The words “no cause ... no cure” are certainly embedded in my memory. I hope I am remembering correctly here; we were told it was a sort of relative to multiple sclerosis, i.e., a nervous system disorder. Later, we learnt that the shingles, which she contracted in early adulthood, may have been a related factor. This was new territory, not just for us, but for our doctor, as well. He had only heard of two cases of TM in Trinidad before my grandmother’s case.

Overnight, seemingly with no explanation and little warning, my grandmother had lost all feeling and function from her 10 th vertebrae downwards. Basically, from just under her breasts, down to her toes; in effect, rendering her paralysed and incontinent.

Granny did not think she would live much longer. She wasn’t told this; it was an assumption she made. She certainly did not think she would be bedridden for 18 years. She never wanted to go out, for a range or reasons, and mostly because of the embarrassment of the catheter. I think, too, she knew it was difficult, as public places are still not disabled-friendly. After 69 years of being self sufficient, she felt that she was a burden to everyone. She received physiotherapy for a number of years. She eventually stopped it after about 10 years due to the expense and the fact that she could not see any concrete results. My mother gave up her job soon after the TM was diagnosed, because nursing care was too expensive. All family members helped with her care. Granny had no feeling in her legs, but they would kick up in the air on occasion. I think it was routine spasms caused by nerves seeking a connection to the brain as described by Christopher Reeve in his autobiography.

I shall refer to my grandmother as ‘T’ in the rest of this article as that is what her GP fondly called her after years of being his patient.

From about five years before her death in 2003 she stopped writing and watching TV and started forgetting things. She had problems seeing due to an unrelated problem, which was irreversible. Her hearing also deteriorated. All of her friends, brothers and sisters and even her physiotherapist, who were all healthy and walking around, died long before her. In the last two years, conversation was very difficult. Her language turned into what I can only describe as “geriatric language” - the old version of baby language.

Perhaps with more knowledge of the disease at home; advanced facilities to deal with her deteriorating hearing and sight; advanced facilities for persons with disabilities; perhaps with this, her life would not have been as limiting as what she experienced.

Our family always found it interesting that this very rare disease which affects 1 to 5 per million population, affected two people that lived on the same street in a country with a population of about 1.2 million. Reading the TM magazine has been very informative and I think the provision of members’ details can be very helpful as it is an opportunity to link up with someone in your area who has the same experience and so share knowledge and support. Thanks to the TMA.

On behalf of my grandmother, thank you to Aunty Elma, Ian, Alison, Tonya, Mark, Shastine, Sharaine, her doctor, who always managed to make her smile, and others who contributed to her care. Thank you most of all, Granny - Theresa Ollivierra Guzman Reece - for showing me how to remain good natured whilst coping with adversity.