J'Ouvert jamming for Carnival

STACEY SAMUEL-O'BRIEN

The first time I cried after my multiple sclerosis (MS) diagnosis was in DC Carnival.

DC had, in my opinion, the best parade of all the US carnivals I’d attended. The parade wasjouvert along Georgia Avenue and we usually jumped with a band that offered a “J’Ouvert-esque” experience that included unlimited mud and oil.

My sister, “brother” and I had just met the band (pre-scooter days) and I realised that just walking to it had taken its toll; there was no way that I would make it for the entire parade route.

I started crying. In true Trini fashion, the two of them began playfully shouting at me. “Man up! Man up! We have no time for tears or crying! Stop it!”

The more they begged me to stop, the harder I sobbed.

Eventually, I stopped and luckily I was able to lime on one of the trucks for the parade.

Having MS has spoiled…no…changed Carnival for me. I can no longer walk, chip or jump with any band.

Another reason that I cannot enjoy Carnival as before is that “heat + MS = disaster.” Often, heat is described as an MS patient’s “kryptonite.” Many people with MS experience a worsening of their symptoms if they remain in the sun for long or their internal body temperature rises.

Personally, heat drains my body of the little strength that I have to do anything, and my voice gets extremely soft. If I stay in the hot sun for very long and/or my internal temperature gets very hot, my limbs feel very heavy and I cannot even control my scooter or keep my head up. When I eventually cool down, things go back to normal, but I try to avoid getting too hot.

Also, as someone with MS, I have limited energy and stamina levels that begin to deplete from the moment I start getting ready to go out – sometimes I get ready to go out earlier than necessary just so that my body can rest a little before I leave.

As a result, I plan my events so that they are spaced out so I can rest between fetes. This way, I can be fully functional to enjoy myself everywhere.

So Carnival now consists of J’Ouvert and fetes; I cannot do Carnival Monday or Tuesday on the road. J’Ouvert works because of the time (barely any sun, nor is it at its hottest) and there are fewer people in the band and on the road in general.

I choose the fetes wisely because venues have to be “scooter-friendly” (I can easily roll around) and I only consider those that are within the ideal 4 pm-4 am time frame. I did Monday night mas once, and that also worked because of the time. I love boat rides, but I’ve given those up, since I no longer enjoy them because I cannot be on the scooter while on a boat.

I’ve always loved J’Ouvert, so I decided to give it a try. One of my closest friends, Johnny, who lives in Atlanta and is quite familiar with my situation, said that Cocoa Devils would be a good choice because it is a smaller band compared to others.

That first year, I was nervous because I was in the scooter and there were many more people in the band and on the road than the Monday-night experience. I always lime with a crew, so I know that we will deal with whatever situation pops up, but I never want their fun to be thwarted because of me.

The other thing that concerned me about being on the road was, let’s be honest, whether I would encounter a pothole or a trench that I could not manoeuvre.

It’s been three years now and each time was better than the last. It’s funny, my scooter is a huge hit everywhere I go and each year in Cocoa Devils was no different. People I know, arbitrary strangers, men, women…everyone likes to figure out how to “buss ah wine.” Some people ask first, others just do it and I have no problem with that. Talk about “our” way to make someone feel included!

Whenever I had to use the toilet truck, we spoke to security around it, who communicated with the driver, and they stopped the truck so that Johnny could take me up the steps, and stopped it again so that we could go back down. I appreciate that those guys recognised that we had a need and they accommodated us without question. Last month I talked about the helpfulness of most Trinis, and revellers in the band are no different.

Carnival as I knew it is no more, but I’ve found a way to enjoy it in spite of MS and my disability because soca makes me feel like Hulk!

Multiple sclerosis (MS) is a debilitating autoimmune disease that affects the central nervous system.

In MS, the body’s white blood cells attack the protective covering of nerve fibres. When nerve fibres become exposed, electrical messages between different parts of the body and the brain are no longer transmitted effectively. MS can lead to sensory, cognitive, digestive and muscular issues.

It is a degenerative disease for which there is no cure.