Lee An­na Ma­haraj

Re­porter

leean­na.ma­haraj@guardian.co.tt

For 24-year-old Sha­nia Sama­roo, cross­ing the stage at Car­ni­val was al­most a life­long dream. A pas­sion­ate ca­lyp­so, pan, and mas lover since child­hood, she al­ways looked for­ward to play­ing mas as an adult.

“Car­ni­val, and play­ing mas, was al­ways some­thing I want­ed to do. As a child, I would take part in mas com­pe­ti­tions at pri­ma­ry school, and I al­so played pan for a num­ber of years. I just love be­ing im­mersed in the cul­ture,” the self-ad­vo­cate ex­plained.

How­ev­er, in 2019, her plans seemed sud­den­ly un­cer­tain when she was di­ag­nosed with Spin­ocere­bel­lar Atax­ia, a pro­gres­sive ge­net­ic neu­rode­gen­er­a­tive dis­or­der that af­fects co­or­di­na­tion, bal­ance, walk­ing, speech, and eye move­ment due to de­gen­er­a­tion of the cere­bel­lum and spinal cord.

“It is main­ly my bal­ance and co­or­di­na­tion that are af­fect­ed. I don’t have a straight gait, and I can’t walk in­de­pen­dent­ly. Phys­i­cal­ly, my in­de­pen­dence is a lit­tle lim­it­ed, but out­side of that, I am just like any­one else,” she shared.

Med­ical ex­perts could not de­ter­mine how Sama­roo de­vel­oped the con­di­tion, but she has adapt­ed to a new lifestyle.

“It was a chal­leng­ing ex­pe­ri­ence. Hav­ing plans for your life and then hav­ing to adopt a new nor­mal is tough. Every day comes with its own chal­lenge. You don’t en­vi­sion your life to be like this at 24—you had oth­er plans—but here I am. I don’t think there’s any­thing to fight. You just live day by day,” she said.

Sama­roo ad­mit­ted she wor­ried about her Car­ni­val dream—not whether she would achieve it, but how she would. While at­tend­ing The Uni­ver­si­ty of the West In­dies, she vis­it­ed the Lost Tribe mas camp and de­cid­ed she would work to­ward cross­ing the stage. This year, af­ter con­tin­u­ing her phys­io­ther­a­py and aqua ther­a­py, she fi­nal­ly achieved her goal.

“Cross­ing the stage wasn’t just cross­ing the stage—it was so much more than that. It was eu­phor­ic, filled with joy. It was emo­tion­al but al­so an in­cred­i­ble ex­pe­ri­ence. I think every Trinida­di­an should ex­pe­ri­ence it at least once in their life,” she rem­i­nisced.

She cred­it­ed her ac­com­plish­ment to her sup­port sys­tem, which in­clud­ed fam­i­ly, friends, and even fel­low mas­quer­aders.

“The kind­ness of the pa­trons re­al­ly stood out. My sis­ter and a friend would play mas with me to help me get around. The mas­quer­aders were ex­cit­ed—they took turns push­ing me, and at the lunch stop, where there was an in­cline, three of them lift­ed me up and car­ried me there,” she re­called.

Sama­roo said she now has mem­o­ries to last a life­time.

“The jour­ney—from go­ing to the mas camp, choos­ing the cos­tume, col­lect­ing it, play­ing mas, and even win­ning band of the year—was in­cred­i­ble. When I start­ed de­vel­op­ing symp­toms, I promised my­self I wouldn’t let this con­di­tion de­fine me. I’m so much more than my ill­ness. Cross­ing the stage, even just wear­ing the cos­tume, showed that I could live this dream re­gard­less,” she added.

Look­ing ahead, Sama­roo is un­cer­tain about the fu­ture but ex­cit­ed for what’s to come.

“Next year, I’m not sure if I’ll play mas, but I def­i­nite­ly have to do it again,” she said.