Sickle Cell can’t hold me down
Richard Burton was born in Mandeville and lived in Bogue, St Elizabeth, with his grandparents, before migrating to Duhaney Park in St Andrew with his mother when he was about six years old.
During that time, Burton recalls not having any friends in his neighbourhood: "My mother was not big on keeping friends, so I never had any friends in the community. It was not until I was 14 that I met my father and the rest of my siblings, who I was allowed to visit on holidays," he said.
Relating his story to Outlook, Burton said, at about 13 years old, he experienced symptoms including vomiting and severe pains, mainly in his joints, for weeks.
"My mother was at her wit's end because none of her home remedies were working. A friend suggested she take me to the children's hospital. They referred me to Kingston Public Hospital, where I was admitted and diagnosed with the haemoglobin sickle-cell disease," he said.
The pain, Burton explained, occurs during a sickle-cell crisis. Research shows that painful episodes occur when sickled red blood cells, which are stiff and inflexible, get stuck in small blood vessels.
Burton said that, during his illness, he could not fathom the news at the time because of the agony he was going through.
"I was too sick to react to that news. I just wanted to get better," he said. He said he spent two weeks in the hospital under treatment and observation.
Burton said that the doctor told his mother that he should always keep warm and do no strenuous exercises like running, football or swimming, which his mother took very seriously.
Soon after migrating to St Andrew, he was registered at the Duhaney Park Primary School, where he spent four years before moving on to the Edith Dalton James Secondary School. He recalled his most memorable experience:
"One of my most memorable experiences was when I placed first runner-up in the Secondary School Agricultural Competition and had it announced to the entire school during Monday's devotion." Another big moment, Burton said, was being elected head boy in fifth form.
While at school, Burton said he had mixed feelings about his limitation, which prevented him from participate in sporting activities: "I was disappointed that I could no longer participate in sports, but on the other hand, I had a good reason why I failed at sports." Nevertheless, he made it through.
Despite only obtaining three Caribbean Examinations Council (commonly called 'CXC') subjects, he never gave up. He continued to aim for the stars, attending evening classes between 1989 and 1994.
"Since acquiring additional qualifications and experience, I have not had that challenge. I have never disclosed at the point of applying for a job that I have sickle-cell disease. Usually, after my employers are made aware due to a crisis, I would have already proved myself," he explained.
Burton enrolled at the University of the West Indies in 1995 to pursue a bachelor of science degree with a mathematics major and an electronics minor. Then, not long after, he went on to do his master's in management information systems.
After graduating in 2002, Burton said he took a year's break before venturing into voluntary service at the Jamaican Foundation for Lifelong Learning to teach
This was where uneducated adults got another opportunity to enhance their qualification by completing high school. He taught there for five years before taking a break last year.
Keeps him going
Burton knows exactly what to do to live his life to the fullest, and so he lives by the mantra 'Make the best of life, you only live once'. He said, although the doctor specially advised his mother when he was first diagnosed with the disease to avoid strenuous exercises like running, football or swimming, he attempted the Life of Jamaica (now Sagicor) Sigma Run in 2005. He did his first half marathon.
He said it was very rewarding. To date, he now runs half and full marathons, plays football, roller blades, and even hikes on the Blue Mountains.
"Each time, I feel a sense of accomplishment," he shared.
Burton said it takes discipline to be working a full week, with one or two evening visits to the gym, plus having to wake up at five or six o'clock on Saturday mornings to exercise. However, it has become part of his lifestyle.
When it comes to food, Burton said that he doesn't have a strict diet. "I eat whatever I want. The doctor didn't tell me what I should or should not eat, plus I am not a vegetable person, but I try to consume as much vegetables as possible," he said.
Some of his symptoms cause him to be highly susceptible to the flu and experience crisis pains. "Whenever I feel a crisis coming on, I drink a lot of fluids, preferably juices, and take painkillers. I would go to my doctor if symptoms persist and he would prescribe penicillin," he shared.
Burton also emphasised how important support groups are in coping and achieving his goals. Lucky for him, he is not short on family support, or support from his JMMB running club family, among others.
Burton said that he enjoys partying and also drinks occasionally. "I like to party, have fun. I attend church, sad to say not often enough, and just relax at times, spend time with family," he said.
He has been at the JMMB Group for the past 15 years as a business intelligence analyst.
Burton encourages individuals who might be experiencing any form of illness, especially sickle cell, to not blame themselves, but rather to get busy achieving their goals.
"First, recognise that sickle cell is not a punishment for something you did wrong. You had no choice in your genetic make-up. What you have absolute control over is how you live your life and what you do with it. Sickle cell does not define you. What you do with your life is what defines you. Set your goals in stages and work at them. If you are busy trying to achieve your goal, you will have no time to be worrying about sickle cell. Also, take care of yourself. Eat right, exercise, pray and educate yourself. These are the building blocks for a better you - with or without sickle cell.
"In addition, persons with the sickle cell condition can live a normal life ... eating right, drinking lots of fluids, and exercising. The persons who are at risk are those who face social and economic
difficulties. Persons who are abandoned by their families, those with no means to support themselves are at risk of early mortality. This is the cause of the myths that persons with sickle cell die early, cannot learn, and are useless. Without care and support, then these myths are made reality," he concluded.
Burton implored that:
n Families support the children to eat right and attend school;
n Schools recognise the needs of sicklers who may be frequently absent from school because of crises, for e.g., the constant need to drink, hence the frequent visits to the rest room;
n Employers not discriminate against persons with sickle cell;
n The Government assists in providing medication through the National Health Fund for persons that are unable to afford it.
n All society to recognise that persons with sickle cell can and are making their contribution and should not be treated with disdain.