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November 2 2011- By Noor-Jehan Yoro Badat
The heels of Tamina’s shoes clack on the floor as she hastens down the halls of the Milpark Hospital.
Her husband, Zarish, is finally out of intensive care and she is spending visiting hours with him, basking in the hospital gardens.
It has been seven weeks since he enjoyed a day outside. She’s thrilled that he gets to relish the warm spring sun and skies in his wheelchair.
This year alone, Zarish, 47, has been in and out of hospital six times, each time for several weeks.
Zarish has multiple sclerosis, (which means “multiple scars”), a degenerative condition that affects the central nervous system including the brain, the spinal cord and the optic nerve.
The disease damages the myelin sheath, an insulating material that surrounds and protects the nerve cells, causing scar tissue referred to as lesions or plaques.
Because nerve signals travel along the myelin, damage to it interferes with the communication between the brain and the rest of the body. This affects the co-ordination, feeling and movement of the body, depending on the site of the lesion.
Zarish was only 22 when he was told he had MS. As a medical intern at the then Johannesburg General Hospital, he knew something was wrong when he started to lose his balance. His hands became weak and he had double vision.
Zarish went for an MRI scan and the test came back positive: he had multiple lesions on his brain.
A neurologist informed him that his clinical picture showed that he had Relapsing Remitting Multiple Sclerosis. This is the most common form of MS and it’s aptly named because of the periods when it flares up and the periods of remission.
There is no cure for MS. The exact cause of the disease remains unknown. Researchers generally believe MS to be an autoimmune disease, where the body’s own immune system attacks its own tissues.
Medical experts theorise that elements such as genetics, childhood infections, geographic location and environmental factors may also play a role.
However, there are some treatments available that focus on treating symptoms, attacks and modifying the course of the disease.
Lorna Wridgway, a social worker at the Multiple Sclerosis South Africa inland branch, explains that the most commonly used treatments are corticosteroids and disease modifying treatments such as Interferon-beta (1a and 1b) and Glatiramer acetate.
Some people with MS, she adds, also use complementary therapies such as yoga or meditation. However, it’s important for people with MS to consult their doctor about any form of treatment they follow, she advises.
A 2008 epidemiological study published in the SA Medical Journal estimated that there were 5 000 people living with MS in South Africa.
Women are more likely to be living with MS, with a female-to-male ratio of about 3:1. And in two-thirds of the patients, the age of onset of MS is between 20 and 40
Despite Zarish’s diagnosis, he qualified as a GP and successfully ran a medical practice. He enjoyed playing sport and even managed to backpack through Europe. He married Tamina, also a doctor, and they had four children.
Zarish also acted as his family’s financial adviser. He was impulsive and had a playful nature. His father called him his “livewire”.
But over the years, Zarish’s illness worsened. Tamina took over his practice because his hands shook. Every now and then, he lost his sight. He could barely walk.
He struggled to talk, much less animatedly argue on issues that mattered to him. He was also unable to make decisions.
He was often in pain and had problems sleeping. There were several times when Tamina got up at night to look for him, only to find him slumped on the floor. He didn’t have the strength to make it back to their bedroom. She’d carry him on her back and tuck him into bed.
He couldn’t drive. He couldn’t pick up the children or kick the ball around with them. He’d also become uncharacteristically clumsy.
“He gave up fatherhood, being a husband, and the work he loved,” she says.
“Once upon a time he was full of life. He was a strong man who believed in the motto carpe diem (“seize the day”). Now he can’t even walk a few metres.
“In a way, he has lost everything. I feel sad that a man who had so much is reduced to this.”
In the last five years, his condition has become chronic, says Tamina. “He’s often ill now, particularly in the past two years.
“He was in hospital lately because the nerve in his throat had become paralysed.
“His MS was causing him to swallow his food into his lungs, causing his current pneumonia.”
A tracheostomy, a surgical opening through the neck into the trachea to relieve difficulty in breathing, had to be performed.
His treatment now involves palliative care as the Interferon injection – medication used to slow down the progression of MS, which he received every second day – is no longer working.
MS is a bizarre disease, Tamina says. “It gives you hope and then lets you fall. It toys with your emotions. There is that constant swinging.
“He can be fine now and then sick tomorrow. His faculties can be here now, and then tomorrow, not.
“When he’s ill, I have to make the decisions. But when he’s not ill, he takes over. It’s difficult with the chopping and changing.
“The worst is, we don’t know. We’re living in complete darkness.”
The biggest challenge as a family, says Tamina, is that in the last decade they have not been able to make plans. Sometimes, at the last minute, holiday plans have had to be cancelled because Zarish has been too ill to travel.
“But somehow you do have to make those plans, so book that holiday if you can. God willing, if it happens and you’re able to go, then it’s good,” she says.
Tamina has spoken to her children about their father’s MS. They ask why their father is afflicted by this disease. “I bring our religion into it.”
Tamina misses his input on their children’s lives and says her daughter, in particular, needs her father’s guidance.
But unlike her children, Tamina has never questioned why the disease struck. Her faith in Islam and family support has made her stronger. “God is not going to give you a situation that you cannot handle,” she says.
She does worry about the future, though. “I ask myself that when the eventuality of his death comes, how will I go on? I think of the worst outcomes to prepare myself.”
She has talked about his death to the children. It’s hardest for the youngest to understand. “He’s the most sensitive about his father,” says Tamina.
But Zarish thinks it’s important to talk about death. “I call him my beautiful mind. To me he is like that line in the song about Vincent Van Gogh: ‘This world was never meant for one as beautiful as you.’ “
Most nights she is exhausted from taking care of their medical practice, their property investment, their home, their children and Zarish. “Occasionally I’ll feel sorry for myself and have a good cry. Then I’ll get on with it.
“Look, it hasn’t been easy. I’m a realist. My life has had its highs and lows. It’s been both agony and ecstasy,” she says. “I do go through moments of depression, times when I can’t sleep and have to take anxiety tablets. I don’t think I’m strong… food makes me happy.”