Trisha Alleyne used to be a dancer; you can tell by her erect posture and the graceful way she walks.
What you can’t tell, though, is that she can barely make out your shadow and that, up to seven years ago, she could not walk and was told she would never walk again.
The daughter of a father who was born on a boat midway between Dominica and Barbados, and thus holds both nationalities, was herself born in England, where she describes her young adult life as being “the life and soul of the party”, loving her 13 years on stage.
Since 1990, when her parents retired, she has been visiting Barbados regularly. It was just after one of these trips, in 2004, that her world started to fall apart.
“My husband and I had just returned from Barbados, our first holiday without the kids. We spent three wonderful weeks; I spent the first week just sleeping,” she told Barbados Today.
On her return, she recalled, she felt “fantastic”. Then she started experiencing constant headaches. Her general practitioner told her she must have trapped a nerve in her neck and prescribed anti-inflammatory medication. A week later she was at the doctor again, this time to be diagnosed as suffering with migraines, which “would go away”. The headaches, however, progressed to severe stabbing pains in the top of her head and forehead, shooting down her neck, arms and into her chest.
The drive from her Kent home to her Senior Housing Officer job in London usually took her 45 minutes but one day at work she felt ill and decided to return home. The trip home took three hours, as she had to pull over often because of the excruciating pains in her head. An emergency doctor was called and his advice was, once again, to take some painkillers.
Trisha stayed in bed from Friday until Monday, by which time the pain had gone. Her husband Ricky, from Lower Carlton, St. James, told her firmly she should stay at home for at least that day, despite her protestations; it turned out to be good advice. When her daughter returned home from school that evening, she found her mother on the floor shaking, her lips purple and her eyes “rolled up”.
An ambulance took her to hospital where, she said, the staff was “kind of sceptical”. Shortly before her collapse she had been lifting her six-month-old son from his crib when she twisted something in her back. It was on the strength of the back pain, she said, that she was admitted to hospital, where they concentrated on that back injury. Her torso strapped, she was diagnosed as having suffered scoliosis and stayed there for “four to five” days, protesting all along that her real problem was her debilitating headaches. She was being prepped for surgery on a slipped disc when another surgeon said at the last minute that she didn’t need surgery.
Two days later she was back at the hospital with worse pains in her head. Now, her speech and vision were being affected and she was incontinent. She was admitted and “lost three days”.
“I don’t know if I was in a coma or in a deep sleep; I completely lost those three days,” she said.
When she awoke three days later she was blind in her left eye and paralysed from the waist down.
Trisha was hospitalised for nine weeks without a diagnosis, she recalled, adding: “In my opinion I felt they didn’t believe what I was saying.”
“Mum was in a wheelchair; I had to place her head on the auto-refractor (the machine on which the chin is placed during an opthalmological examination), said her daughter Isharna.
“The doctor looked very confused after using the machine,” Trisha continued. “He left the room and came back in with another doctor, who also looked into the machine and walked back out; they didn’t say anything. Then the first doctor said I had microscopic inflammation on the optical nerve and that he would see me again in six weeks; no eye drops, nothing. He said I had nothing to worry about and sent me back to the ward.
“In hours I woke up screaming. Everything was black; I was totally blind. I recall just screaming down the ward. The nurse was very dismissive when I told her I couldn’t see. She said they had read the opthalmologist’s report and there was nothing to affect the right eye. They called my husband and told him I was hysterical; he came and spoke with the nursing staff.”
Ricky, on hearing from Trisha that her legs were freezing, pinched them as hard as he could in the nurse’s presence, showing her Trisha had no feeling there. This was to no avail, as the “dismissive” attitude continued.
After nine weeks of frustration, Trisha discharged herself with Ricky’s assistance. On her return home she had a vision of her grandmother, something she had experienced before.
“She told me I needed to contact my mother, who needed to get to England. She said ‘this illness will be a battle of wills and you will only win with your mother there’. She got on the next plane.”
Two weeks after her discharge Trisha collapsed and was taken back to hospital, where in the Accident and Emergency Department she was attended to by an African doctor.
“I foolishly thought we would forge some alliance. I saw this black doctor and thought that maybe someone would listen now; he was worse than the others. He gave me a speech in which he said the mind was a wonderful tool but it sometimes made people imagine things that weren’t real. He told me ‘you say you are blind but you don’t act like a blind person. You say you can’t walk. How do we know that’?
“Then he told my husband he wanted to speak with him alone. We both protested but he insisted; they were gone for a long time,” Trisha said. “When my husband returned, his touch felt different; the way he spoke to me felt different. I asked what was happening. He said ‘Trish, you know I love you, right? I’m taking you home’. I had never felt that kind of anger in him before. I told him I needed to know what the doctor had said. He refused at first then he held my hand and his voice changed. He said ‘he thinks you’re mad, babes. I’m taking you home. We’ll find a different doctor’.”
Trisha asked the doctor on what grounds had he arrived at the conclusion that she had had a breakdown.
He replied: “As I said, the mind is a powerful thing. We have spent thousands of pounds on you.”
He further recommended that she return to her GP and be recommended for psychiatric evaluation. She protested that the hospital had a psychiatric unit and that she could go there, which he refused.
“I asked him if I could have some bedding to help with my incontinence. He asked: ‘Are you incontinent?’ I said: ‘Yes, bowels and bladder’, and he said: ‘Oh, hold on a minute’.”
With that, she was readmitted, whereupon the doctor questioned her as to whether her husband beat her and whether he was “a very rough man” during sexual intercourse. This questioning, he said, was to establish the cause of her “depression”.
After Trisha spent seven weeks on the ward, with all her MRI tests coming back negative, an Iranian student doctor brought light into her darkness. One day in the hospital’s canteen he overheard medical staff discussing her case, saying they could find nothing wrong with “the woman who constantly complains she is blind”, and asked if he could have a look at her. When he visited her, he asked if he could do some examinations, to which she agreed. In a few minutes, he told her he thought she needed a lumbar puncture and asked permission to read her notes.
“He came back hopping mad,” she recalled. “He said that from the first time I had visited the hospital, a neurologist had recommended a lumbar puncture but it had never been done. He added that if it had been done then, I probably would not have gone blind. He was most upset and thought that I had gone through unnecessary suffering.”
The procedure was done the next morning and the lab work sent to London. The results came back at midday and, recalled Trisha, “it was panic stations at the hospital; everybody went beserk”.
It was discovered that she had Devics Disease, a rare form of multiple sclerosis. Whereas the paralysis associated with the disease usually remained in the lumbar region, the delay in her diagnosis meant that it had spread across her torso and was now three finger-widths from her heart. She had four hours to live without treatment.
Trisha was taken to London with police escort. She had a major seizure in the A & E Department, went into the Intensive Care Unit and ended up spending two weeks in King’s College Hospital. The consultant there told her after this period that her body was not responding to the medication and that she would be blind and paralysed for the rest of her life. Because of the delay in diagnosis, damage was irreversible.
“He gave me his hand and told me to move mine around and say what I felt. I said I felt a wheelchair and he told me ‘make friends with it; you will be using it for the rest of your life’. I told him to take the wheelchair and stuff it and asked him if he thought he was God; he didn’t have that power. I told my family what he had said. I don’t know where Ricky gets his strength from. He said ‘that’s a lot of bull..’.”
Christmas 2004 was a few days away and, prompted by her four-year-old’s plea that only Mummies can put up a Christmas tree, Trisha attempted to leave hospital to be with her family for the occasion. Celebrations in her family usually start with her birthday on December 21 and, while plans were made for her to have a private room for Christmas Day, she entreated the Iranian doctor to allow her to go home.
He agreed, acknowledging that it was against hospital policy, but pointed out her house would be invaded, since things had to be put in place. “Every minute there was a knock,” recalled Trisha. In and out of her house were welfare workers, plumbers, carpenters and others to install equipment, handrails and lifts. The inconvenience, however, took second place to the fact that she was home for Christmas, even though she was taking 32 tablets every day.
“Life had changed dramatically. My former life was gone forever, I thought,” the mother of four said.
She continued: “I spiralled into depression, turned to alcohol and attempted suicide. I was in a very dark place, despite a loving husband and four wonderful children. I felt isolated. I had previously had a zest for life; now I was living in a wheelchair, totally blind.
I felt worthless, hopeless, useless. I was not the woman my husband married, not the mother the children had. I felt my prayers weren’t being answered.”
“I couldn’t have asked for more,” she said in reference to the role daughter Isharna, then 14, played. “She stepped into the role of mother, accountant, getting the mortgage paid, making sure everything was done.”
“Eight to nine months” after going home from hospital, Trisha had another “visit” from her grandmother.
“This was so different from the others,” she recalled. “It always started with the scent of lavender and I always felt calm. This time the lavender scent came like a wind and I felt she was angry. All she said was ‘throw away all you don’t want’.”
She called husband Ricky, who scooped her up and took her to the bathroom, where she flushed all her medication down the toilet. Her mother told her she had lost her mind and Ricky called in the nurses, who came “with a carrier bag of tablets” and told her she would die if she didn’t take them.
“I told Ricky that if it’s my time to die, I wanted to do it my way. I wanted the children to remember me as I was, not unable to talk, zombiefied. I told him I didn’t think Gran had told me what she had for me to die.
“I did spiral and have relapses,” she said. “Ambulances came but I didn’t go with them.”
Four or five months later, Isharna came to kiss and hug her before leaving for school.
“I saw little gold stars like coming down from heaven. It looked like they were landing on her face; I screamed, I was so shocked. I actually saw her face, for the first time in about a year.
“I said ‘I can see you’. She said ‘No, you can’t, Mummy. Okay then, what am I wearing’? I said ‘Your school uniform’. She said ‘You know that, I’m going to school’. I asked ‘Why are you wearing my ear-rings’? We hugged, kissed and cried.”
That window of light, although it only lasted two minutes, refreshed Trisha’s faith.
“I told myself God can do this, you have to believe. There is a path that God has put for me; I have to keep the faith.”
At that point, she said, Isharna entered what she laughingly called her “bullying phase”, always at her mother to pick herself up. Her daughter told her “I’ve got a plan.” With that, she went into the kitchen and returned with two packets of crisps for her mother to use as weights. The next day it was two packs of biscuits, then two tins of beans, helping her mother to use both her arms and legs.
“I said to her at times ‘I can’t do this; I’m in pain’. She’d say ‘I’ll give you a painkiller; rest for a while but we’re going to do this again.” Isharna took her for her first walk. She went from wheelchair to walking with a frame, to a cane. She buried that cane in her garden.
Her sight started to return, with Trisha being able to make out shadows, and around that time she threw herself, after some trepidation, into helping Isharna start a modelling career after she did very well in exams.
On the medical advice to convalesce somewhere, the family came back to Barbados in mid-2006, intending to spend six weeks. They ended up staying two and a half years, in which time Trisha and Isharna launched modelling agency Tropical Inspiration. The agency blossomed, with a highlight being a fashion show for Courts in 2007 which “blocked the roads in Bridgetown”. However, “as soon as the agency was making money”, Trisha had a relapse and returned to England.
As part of her therapy she started keeping journals in 2004. When Isharna was moving out on her own, the two of them found a box with these journals in the loft. Isharna suggested that she make a book out of them.
“She said ‘it’s amazing how you’ve been so positive despite so many bad things. Maybe you can help people turn their negatives into positives’. I started reading them myself and said ‘maybe’. I said ‘my English is terrible but there’s Spellcheck’.”
Trisha is now on book three of a trilogy, the first of which is Is This Really You?. To come are Really? Living With Devics, to be published in August, and Love Is, due in December. The lady is busy.
On a bad day now, she said, it’s difficult to get out of bed. Sometimes it takes her “forever” to brush her teeth and her speech can become slurred. “I’m not free of the headaches; I can be laid up for three or four days,” she noted.
Still, she said, “God is good. All of my family keep me strong. They are my gifts, my blessing from God. In 2004, there were 27 Devics cases in England and I am the only one who can walk and is seeing shadows. My faith keeps telling me ‘Trisha, if you continue believing, you’ll be all right, girl’.”
Is This Really You? will be launched on Saturday at 11:30 at Cave Shepherd, Bridgetown.
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