I dream of walking properly again

Musiega Engoke was an active 29-year-old when multiple sclerosis struck. He went to bed feeling fine, but woke up with blurred vision, slurred speech, and limbs that no longer functioned normally. Getting a diagnosis was hard, and accepting it was even harder, but he is now focusing his energy on getting better, as he told SYLVIA WAKHISI.

Imagine going to bed healthy as a fiddle and on waking up the next day, you cannot move your legs. What would you do?

That is what befell 32-year-old Musiega Engoke three years ago.

Engoke was born a healthy and normal child full of life into a loving family of ten siblings. Though he comes from a polygamous family, he describes it as one that is ‘unique’ because they all love each other in equal measure.

All through his school life, he never experienced any sort of challenges and even performed well in his studies. He got a mean grade of B- in his Kenya Certificate of Secondary Education (KCSE) exams, which he sat for at Vihiga Boys’ High School.

From there, he proceeded to the then Kenya Polytechnic for a diploma course in Information Science.

However, one fateful day, his life suddenly took a turn for the worst.

“One evening, in November 2010, after a long and busy day, I retired to bed as usual. Nothing was amiss. However, when I woke up the next morning, I was a different person,” says Engoke.

“I could not understand what was happening to me. I tried to move my right leg but failed. My right hand could also not move. Besides that, I had no stability. My sight was distorted, as all I could see were blurred images. I felt like I was engulfed in a room full of smoke. My speech also seemed to be fading away; it was not clear.”

Engoke was in a panic-striken mode. He needed to know what was happening to him. And this point marked his long journey in search of answers to what was ailing him.

With some assistance, he made his way to town to seek the services of an optician. After undergoing several tests, the optician referred him to an ophthalmologist for further screening.

“I went to see the ophthalmologist at the Lions Eye Hospital in Loresho, who after screening me referred me to the Kenyatta National Hospital (KNH) Ear, Nose and Throat section. I was attended to by an audiologist, who conducted several tests on my ears, eyes and mobility and ruled out any problem in these areas,” he says.

Tribulations

He was later referred to a neurologist who performed an MRI (magnetic resonance imaging) brain scan. He then had to be admitted to KNH for seven days as he received treatment.

“After been admitted, I thought that was the end of my problems. However, I was wrong; that was just the beginning of my tribulations,” opines Engoke.

In the hands of his neurologist, he had to undergo a lumbar puncture — a medical procedure where a needle is inserted into the lower part of the spine to evaluate the fluid (cerebrospinal fluid) surrounding the brain and spinal cord.

The samples were then sent to South Africa for analysis and it was a month before the results came back. Engoke was diagnosed with a condition known as multiple sclerosis (MS, in short).

“On receiving the diagnosis, I decided to seek a second opinion from a different doctor. The results turned out to be the same; it was MS,” he says.

“During this time, I was lucky to have met someone who had the same condition and had been treated at a hospital in India. My doctor advised that if I could afford to go to India, I would receive the help that I needed.

“I had planned to go to India, but did not manage to raise the Sh1.5 million that was needed. My doctor has put me on some medication to control the progression of MS.”

These drugs cost Sh14,500 per month, an uphill task for the craftsman in a building department. Engoke is also on a special diet.

The father of two says life has changed a lot for him and his family since he fell ill. There are many things that he used to do that he can no longer do.

Though a football fan, who used to enjoy kicking a ball around with his friends, he says he can no longer play his favourite sport due to his condition.

Nightmare

He walks with considerable difficulty with the help of a crutch, making small steps. Walking on busy streets is a nightmare. He has to wobble and struggle to access some areas. His speech is also not clear and he stammers; one has to be keen to understand what he is saying.

“When am in some public places, people stare at me. There are places where people treat me badly, especially when I am alighting from a matatu. During such moments, I need someone to assist me, but many are not patient enough. Going to church has also become a problem. Though it is a walking distance, I have to be assisted by someone to get there,” says Engoke.

“On the other hand, some people get bored or irritated when I talk to them because I tend to stammer a lot and look ‘drunk’. They do not seem to understand what I’m going through. But all in all, my family has learnt to accept my condition and they are always there for me” he adds.

He goes for physiotherapy sessions daily, except on Sundays, at Guru Nanak Hospital, at a cost of Sh1,000 per session. Though the changes are minimal, Engoke says he has not given up. His fighting spirit is relentless and continues to push him to remain optimistic.

His greatest wish is to get back on his feet again.

“I am determined to raise funds for treatment in India so that I meet my goals in life,” he says.

Once he gets well, he says his greatest desire is to further his studies.

Engoke’s wife, Alice Moraa, a teacher, admits that life has not been easy since her husband fell ill.

“When we got married seven years ago, we were very independent. My husband used to do things on his own, just like any other normal person. However, things have changed and many are the times he has to seek assistance nowadays,” says Moraa.

“This has been the greatest challenge in our marriage. I have shed a lot of tears and asked myself endless questions. People have given me all sorts of theories about what might have happened to my husband, including that he might have been bewitched and that I should leave him.

“Despite all that, I have found strength in the Lord. My elder sister has also encouraged me a lot.”

For Moraa, though it seems like a long nightmare, she is determined to pull through with her family. The couple’s two children, seven-year-old Chelsy Nyaboke and eight-month-old Wayne Mulehi, are too young to comprehend what happened to their father.

“There was a time when I used to critisise him for the slightest mistake, despite his condition. But I have learnt how to accept him as he is. When we are together, we don’t focus on his sickness, but on him as an individual — as a husband and father.”

Progressive

Moraa is determined to stick to the vows she made, “in sickness and in health”, and be there for her husband.

“God’s grace has been sufficient. This can be a blessing in disguise. I know that one day he will be well,” she says.

Sylvester Wakulwa, a consultant occupational therapist, says multiple sclerosis is a chronic progressive disease of the central nervous system resulting from inflammation of and destruction of the fatty protein tissue called myelin that surrounds the nerve fibres.

It usually affects young people at their prime and productive age.

Though it cannot be prevented, as its exact cause remains unknown, it can be managed. Medical intervention is usually by a neurologist.

“MS is a chronic illness that requires long-term medical attention. Rehabilitation that includes occupational therapy, physiotherapy, nursing, psychological care among other interventions are of utmost importance in lessening the patient’s suffering,” says Wakulwa.

Rehabilitation

Some of the signs and symptoms that are usually associated with MS include fatigue, weakness of body muscles, loss of balance, bowel and bladder dysfunction, blurred or double vision, numbness, speech difficulty as well as difficulty in swallowing.

MS often results in shattered self-esteem and in some cases, the patient may not want to have people around them. But according to Wakulwa, with medication and focused rehabilitation, such individuals should live a fulfilling and productive life.

For now, Engoke takes one day at a time, believing that his health will only get better with time.