The woman behind last month’s Stroke Awareness Day has a lighthearted way of describing her experience.
“The week before my stroke,” she says, “I was this high-flying President of Ladies Circle Botswana who officiated at a function in Harare wearing stilettos. Imagine coming from that to not being able to walk.”
Bakhwi Kablay’s life changed on 17 May 2011, when she suffered a stroke in her sleep. She describes the early months of her illness as a tumultuous journey of stress, anger, and bitterness.
“A lot of the time when I was in the hospital I used to say, ‘why me God?’. I blamed God for my illness. There were people feeling sorry for me and I hated it,” she says.
She talks of the sense of helplessness that one goes through after a stroke.
“Just imagine that before the stroke I was very active; I took care of myself,” she states. “But from May 17 2011, I had to depend on other people to bath and dress me.”
The early days greatly tested her will to fight back. Even for a hardworking businesswoman with the will of steel, she confesses to moments when she thought, “oh sh..! I am done”. But when she discovered that she could move her fingers, she realized she had a fighting chance to regain full control of her body. She took stock and resolved that she was still young and had a whole lot of life ahead of her. Besides that, she also wanted to live for her two daughters.
“I wanted my kids to have their mother back,” she recalls. “I wanted to be seen as a fighter, not a loser. I guess I also wanted to convince myself that I was a fighter.”
The fighter in her has made great recovery ÔÇô she does everything unaided, including driving. But her experience has brought her face to face with the reality that many other stroke survivors go through ÔÇô and it’s a difficult and painful life that is complicated by a public healthcare system that is not adequately equipped to treat stroke survivors, as well as a society that is still steeped in old attitudes and prejudices. After six months of physiotherapy at one rehabilitation centre, she was told to go home and give up. She has come across many patients who say they underwent physiotherapy for a year and then told to sit at home because there was nothing more that could be done for them.
She counts herself very fortunate because she was able to tap into her personal resources to finance her rehabilitation, a rare position that many stroke survivors are not in. One just has to do the math to realize that a healthy bank balance can make the difference. Based on Kablay’s experience, the average cost per session is P380 for private rehabilitation, P250 for acupuncture, and P180 for massage. Since you would most probably not be able to drive, you need to budget an extra P60 per day for the cab. If you can afford a driver, the average monthly wage is P1, 800.
Now, bear in mind that to achieve faster recovery, stroke rehabilitation has to be done daily ÔÇô and you’ll understand why she dares me to “calculate how much I spent in six months from June to November 2011”. She rues that stroke survivors in Botswana have no access to proper rehabilitation, yet it is so important.
“Rehabilitation helps, but it’s a long process. Changes come slowly. In my own experience, I see small changes over time. In fact, I began to see very noticeable changes after a year. It means the person who was sent home after six months could have gotten better over time. Imagine how many patients have lost hope because our system was impatient with them,” she says. “It hurts me.”
She calls stroke survivors forgotten people.
“A stroke affects your family, and society as a whole, but it is not taken seriously. All you hear is that ‘o sule mohama’ and that is it,” she says. “I go around town looking for stroke survivors and I don’t see them. You know why? Because you leave them at home. You forget that they also want to go shopping; that they want to visit restaurants. People have lost friends after having a stroke.”
She says the whole nation needs to change the way it perceives stroke and stroke survivors. At the top of the priority list she mentions a proper rehabilitation facility. Then she talks of the need to change attitudes towards stroke survivors ÔÇô many of whom are laid off from work without a second chance. She met a woman who was told to sit at home because after her stroke, she could no longer use a laptop.
She has met many other survivors who all say, “ke itlhobogile”.
“They are very lonely. Le malwapa a a thubega because of stroke. You don’t know how to treat your partner after a stroke,” she states.
If she could change just one thing that people display whenever someone with a disability comes in view, it’s the tendency to stare.
“They even turn to really look at you after you have passed,” she says. “Sometimes when people stare at you a lot you feel less of a person. It makes you feel helpless, and I hate that.”
One thing that came out of the Stroke Awareness Day, which was hosted through the non-profit organisation Touch a Life, is that people are desperate for help, and they don’t know where to go.
She got calls from as far as Maun. Kablay is even more convinced that there is need for education about stroke awareness ÔÇô its causes, prevention measures, as well as treatment options once it has occurred. That is why during the Stroke Awareness Day it was decided to bring together doctors, neurosurgeons, physiotherapists, speech therapists, as well as occupational therapists to have them interact with both survivors and care-givers. Talking of the dearth of information, Kablay shares that even as relatively well-informed as she is, she only learnt this year that she should have had occupational therapy.
“If I can prevent one person who has had a stroke to go through what I experienced, I’d be very happy,” she says.
When she talks of her life prior to the stroke, it’s just the kind of lifestyle that most of us lead ÔÇô a diet rich in fat and salt.
“Like a lot of other people, I had never checked my cholesterol level,” she says. “It is important to know the symptoms because with a stroke, every minute counts. Care-givers should know the symptoms.”
Though there are cases of people who are genetically disposed, in her case there was no family history of a stroke. There were no obvious warning signs such as high blood pressure. Perhaps what should have rung a bell was the stress.
She holds that we are generally uninformed about stroke, with the average person knowing more about HIV or cancer, than they do about stroke.
Following on her remarkable, Kablay vows that she won’t have another stroke.
“I know what to do not to have another attack, so I won’t have another one,” she states. “My plan is to get back to my stilettos.”