MANY PEOPLE GET out of bed in the morning, primed for the day’s chores. For Ashlei Highland, the chore is getting out of bed.
From the moment she comes awake, the pain sets in and she must set her mind on a positive course to take her aching body through another workday. She now knows the reason for her pain and is better able to cope with it, but this was not always the case.
The 23-year-old’s life was railroaded one year ago, when she was diagnosed with the dreadful autoimmune disease lupus. It was news which had finally brought an answer to the suffering she had endured for a few years.
The road to discovering the underlying cause of unexplained bouts of illness that had seen her being rushed to hospital emergency rooms time and time again, was rough.
It all started three years ago. Highland had just completed studies in tourism and travel at the Barbados Community College Division of Hospitality Studies and was looking forward to receiving her associate degree when there was the first sign of a major health problem.
“I was really dreaming about my graduation,” the former student of the Alleyne School said. Little did she know her plans would be derailed by an illness that would end many of her dreams.
“In 2014 I had just finished PomMarine and I was working here with Mark’s Auto Spares. I ate some food and ten minutes after, I started to vomit.”
With the suspicion of gas or food poisoning, she was rushed to a private clinic, given medication and sent home. It appeared the medication was working as she began to feel better, but that was short-lived.
It was not long before she was sick again, presenting the same symptoms as before. A barium meal test, ordered by her doctor, showed no evidence of a problem. Everything looked good and she was put on medication and sent home.
Yet she fell ill again and this time was hospitalised for investigations for a gastric problem. She remained in hospital for one month with a swollen stomach and she was treated with steroids. Her condition appeared to be improving during the month she stayed at home recuperating.
But one day before she was due back on the job, illness landed her back in hospital, causing her to miss Christmas and Old Year’s celebrations. Her mind, however, was definitely not on festivities, especially when she looked down at her bloated, fluid-filled stomach, measuring 87 inches at the time.
For someone who had not been ill in her childhood, Highland found it hard to understand how she could be suddenly plagued by these constant bouts of severe illness.
The stomachache she later experienced after getting off a plane to Atlanta saw her being rushed to a hospital there. “When they ran tests they said there was a hole in my small intestine and it was leaking fluid into my stomach.” Surgery was immediate.
She spent about six months overseas, constantly in and out of hospital. Recovering further in New York, one day she came down with a stomach ache so severe, she was again taken to hospital and underwent surgery to correct twisted intestines.
Following this it was back to Barbados, but not long after there was another session of hospitalisation during which successful surgery for a bowel blockage was performed.
It was on her return to the US for a routine check-up that she received the most devastating news of her life – she had lupus.
“I cried the whole day when the doctor diagnosed me with lupus because I was always reading about it and I never thought I had lupus,” she said with a sigh and a hint of despair.
“It is a really hard disease to deal with. Every day I am in pain, some days better than some. I have to take at least ten pills a day and I also have to take injections for the blood clots, because last year July I was at work and my hands started to turn blue and they had no life in them at all. I was rushed to the hospital and got tests and they told me I had blood clots in my arteries.”
With uncertainty about what her state of health is going to be from day to day and her inability to concentrate for long periods, Highland was forced to make the decision to end her ambition to go on to obtain a bachelor’s degree.
Instead, she is content to work in the business of a supportive and understanding uncle who makes accommodation for those days when she is unable to function because of her illness.
“One minute I am up, one minute I am down. Sometimes I cannot even move out of bed and it is really frustrating. “I am always in and out of the hospital,” she said, reflecting on the many hospital visits, the never-ending blood tests, CT scans, and ultrasound tests.
She told of having to cope with the curiosity from people genuinely concerned about her welfare as well as insensitivity and malicious questions from strangers.
“I had to deal with people approaching me, asking me ‘Ashlei, you have cancer’? They are less callous than those who remark outright ‘she must have AIDS’.
“My family tried to protect me from that but when I go out in public there is no protection,” said the soft-spoken young woman.
She finds respite in a strong family support system – a mother who is her rock, an uncle who assures his emotional and financial support, a grandmother who encourages her to go on, prayerful support and those remaining friends who continue to stick with her through it all. Yes, she has lost friends with whom she once socialised because of the way the illness has curtailed her social life, but she said: “It showed me how to appreciate life more.”
She also takes heart from the support of the Hope Foundation.
Sometimes she is lying down and the panic attack which brings her to her feet is triggered by memories of those occasions when she thought her life was about to end.
One such experience three months ago brought her to the stark reality of how easily she could just one day slip away. Hospitalised, she had slipped into a deep sleep from which medical personnel found it difficult to awaken her. Her heart stopped beating, and she eventually awoke to find doctors and nurses hovering over her bed and patients around her crying. Everyone thought she had gone.
If she had, it may have been the end of the misery and pain which caused her to say to her mother on one occasion: “I can’t do it anymore. Let me just die.”
It was a fleeting expression of the frustration that she says gives way to resignation to her reality.
“I just live every day now as it comes,” Highland said. (GC)
