Originally published in the Trinidad Express , January 29, 2018
It’s difficult to explain what Multiple Sclerosis feels like. It hurts, its numb, I’m on fire, my
feet feel like they are freezing, I’m always exhausted, I can’t sleep.
I have Multiple Sclerosis, a neurological disease that affects everything, it also causes your autoimmune system to turn on your body because it does not recognise friend from foe. One of its favourite snacks is the coating of the nerves of your body especially along your spine and limbs. In my case, I am afflicted with the Primary Progressive type which is the equivalent of the Bentley of the automotive world, its expensive to treat and it gets continuously worse.
Because of the various parts of my body affected, I have been medically classified as disabled. I have been unable to walk, I have been unable to use my left arm and hand properly, I forget things, I slur my speech, my balance is almost nonexistent, my bladder has a mind of his own, I experience pain comparable to a toothache in every part of my body where a nerve has reduced myelin and these are just the physical problems.
So I have had to rely on bed baths and adult pampers. Now I know that there are some guys out there that would find no problem having a bed bath from a woman. Well guys, sorry to disappoint you but the novelty of it wears off after the second time, it dehumanises you, it embarrasses you, it angers you and that’s just the bathing. Imagine how you would feel when she has to change your adult pamper, it makes the old adage of “once a man and twice a child” factual in every way.
You thank God that you lost the ability to feel shame years ago, and after being admitted to hospital seven times over three years, your libido takes a licking. Now it’s one thing having your body scrubbed by a nurse but it’s quite another story when your caregiver at home reminds you that she is a Seventh Day Adventist as she scrubs you down but yet still she cusses like a sailor as you try your best to envision the most bloody car crashes so that you don’t unconsciously shock her “Adventitiousness.”
The point is that although we Multiple Sclerosis Warriors are bent physically and mentally, we are still human beings with self respect and feelings. We care, we think, and we cry.
Prior to my diagnosis of Multiple Sclerosis in September 2013, I was the Group Security Manager of a major conglomerate, where I gave it my all and then some. I prided myself on being firm but fair and this was my credo when dealing with all.
I enjoyed my work and had no qualms responding to emergency calls no matter the time, no harm would befall any employee whilst they were at work nor would the theft of any asset be responsible for lost profit or loss of employees jobs, unfortunately that extreme level of commitment cost me my marriage.
It was on my return from an investigation overseas, what started out as a cramp in my left leg then became numbness which despite physiotherapy and misdiagnosis progressively worsened to the point where my left leg was unable to move, within a couple weeks of being seen by the company’s doctor whose treatment and doing nothing amounted to the same misdiagnosis I had been getting.
The pain and the numbness got worse until I went to see a doctor who after examining me sent me to have a full detailed MRI to be sure of his findings. Within a half hour after the MRI, it was found that I had Multiple Sclerosis.
I was immediately admitted to Mt. Hope hospital under the care of Dr. Essak, the senior neurologist, and after three days of intravenous steroids 1mg of methyl-prednisolone each day to reduce the extreme activity of my autoimmune system, a Lumbar Puncture and numerous blood tests, which is the standard treatment worldwide.
The neurological team went all out to find out not only what type of MS but also the cause of the disease. It was found that the type of MS that I was afflicted with was Primary Progressive which would show no signs of improvement but would only get worse as time passes.
After the first treatment along with the diagnosis I came to terms that I had a fight on my hands to delay the inevitable progression of the disease because there is no cure for the type of MS although there has been much hullabaloo about Stem Cell transplants, unfortunately after researching this treatment, I discovered that the only type that is accepted for the treatment worldwide is Relapsing Remitting and even this has had its fatalities.
Luckily I am surrounded by a team of good people led by an angel as I fight to delay Multiple Sclerosis’s inevitable advance. In 2017, after being hospitalised seven times over a period of four years due to relapses, which is commonplace with MS patients, I now take each day as it comes.
I have become acutely aware of what it means to live with a disability in Trinidad and Tobago and while I am a patriot I still hope that through the Equal Opportunity Commission and what little humanity we have, that ramps, handrails and larger doors will be installed at all government offices and businesses and jobs made available for qualified citizens who are capable and committed in spite of their disabilities. Time will tell if my hopes for the infrastructural changes will be limited to debates and “ole talk.”
The production of the Lions segment of the Lioness Project series, highlighting the experiences of ten men in the disability field, is supported by the Cause an Effect Organisation, the Massy Foundation and A Very Special Disabilities Forum.