I was fit, ate healthy, and had no risk factors – yet I had a stroke at 33. Here’s what I wish I had known
It was only after taking scans in June 2012 that doctors picked up Thato Minyuku (41) suffered a transient ischaemic attack (TIA) or "mini stroke" (when the blood supply to part of the brain is briefly interrupted) the previous year.
She still remembers vividly when that happened. It was 11 November 2011. She suddenly noticed that she was not fully "present" and her ability to speak was temporary compromised. She knew something was wrong.
When she finally visited the hospital that night, no tests or scans were done and no mention of the mini stroke was made. Instead, she was given a few days of medical leave for stress because she had been overworking. But she had no idea she would suffer a more serious stroke a few months down the line – nor did her doctor pick up any signs.
The major stroke happened seven months later, on 13 June 2012. Thato suspected something was wrong because her stomach had been uneasy for a few days, and decided to take a sick day from her corporate law job.
“I was at home in my flat trying to ease my stomach. Some time that morning I fell asleep while watching a documentary. An urge to urinate woke me up and I tried to get out of bed, but I couldn’t.
“My limbs were solid and I couldn’t lift my body out of bed. I then fell asleep again.”
Later that day Thato received a call on her cellphone, but had no idea what to do with the device.
“Part of my brain was out of action from the stroke, especially the Broca’s and Wernicke’s areas, which affect all levels of communication,” she told us.
'I had no idea'
The Broca’s and Wernicke’s are the two parts of the cerebral cortex that are linked to speech. Reading, writing, speaking, communication, and even thought all depend on its function.
“I had no idea something was wrong because I had no idea, which begins with a thought,” she says.
After numerous calls, she finally noticed the green and red icons and answered the call. She realised it was someone she knew, but because she was experiencing global aphasia, she couldn’t understand anything the person was saying.
Global aphasia is the most severe form of aphasia, and is caused by damage to the left side of the brain. Patients who experience this can understand little or no spoken language. Since this is what Thato was experiencing, her response was mere silence.
She remembers putting her cellphone on the bed and going back to sleep. She woke up again to get herself a glass of juice, but when she touched the fridge door, she experienced a "massive shock".
“It felt like I was holding hot ice,” she recalls.
When her concerned friend arrived at her complex later that day, she called for an ambulance and Thato was rushed to the nearest hospital.
The damage to Thato’s brain started negatively affecting the sensory area. Her sight was blurry and her right eye could only see grey. Touch became unbearable and developed into neuropathic (nerve) pain, which has become part of her life ever since. But it wasn’t just her sense of sight and touch that was affected.
“My sense of taste could become bland with no taste, and the next day orgasmically delicious. My sense of smell was, and is, acute, but the sense of hearing can be muted because of aphasia."
For the first few days of the stroke Thato was in and out of consciousness. Time and space became meaningless.
Rehab and relearning
Thato was only 33 years old at the time. Risk factors for stroke include hypertension, high cholesterol, smoking, diabetes, and being overweight. But she qualified on none of those fronts, so she was unsure how this happened to her.
“One of the biggest myths about stroke is that it only happens to elderly people,” she says.
While Thato’s recovery will never end, she says, she’s progressed immensely this year. She’s gradually getting weaned off her intense stroke rehabilitation therapy which includes speech therapy, neuro-occupational therapy and occupational therapy, with the latter having come to a complete end during this year.
She continues to be grateful to her speech therapist, Ingrid von Bentheim, who taught her how to pronounce, enunciate, write and speak again.
“In effect, I was reverting to Grade R. I was learning the verbal difference between ‘d’ and ’t’, ‘b’ and ‘p’, ‘r’ and ‘v’ etc. I had to learn that ‘heaven' is not ‘even', ‘few’ is not ‘view’, ‘felt’ is not ‘left’.
Academic training courses
“I created a personal aphasic English list to simply laugh instead of cry from the damage to my brain. And one of my comedy favourites, which I still slip on, is that ‘marinating’ is not ‘masturbation’.”
One of the hardest parts of recovery was accepting that she could no longer be a lawyer.
“Law in itself demands near perfect use of its own legalised language and communication,” and that wasn’t going to work for her, she says.
However, she made an effort to do at least one academic training course annually. To date, she’s completed, among many others, a sewing course, coaching course, paralegal, and a baby massage course to assist with her doula training.
Thato also still attends counselling sessions, which she says is necessary for her mental well-being.
Some things take a knock
After seven years of using medication for neuropathic pain, she’s slowly started opting for meditation and yoga as a natural "medication". She’s also currently pregnant, so she had to stop all the neurological medication, except for mild aspirin.
The stroke happened shortly after her marriage, and her condition placed strain on the relationship. The marriage ended before their five year anniversary, but Thato’s not disheartened by it.
“I suppose in terms of the universal law of balance, something has to give. By the time he asked for a divorce, I was not in any way surprised.
"We were not compatible within the relationship, and the non-negotiable needs were not met. It took me about two years to become emotionally and psychologically stable again, and in the time of enjoying singlehood my loving new partner found me.”
‘We need patience’
People with aphasia do not necessarily need anyone to fill in the words for them. What they have difficulty with is brisk, fast conversations, says Thato.
“We need patience. Take a moment to allow us to find and enunciate the word(s). People who have had a stroke live in different and slower time frequencies, and appreciate it when people don't assume that the stroke made them cognitively unintelligent.
“We did not change from an intelligent person pre-stroke, to a person with scarred intelligence post-stroke. Patience and time are paramount to make us feel meaningful.”
‘What I wish I knew’
A self-confessed workaholic at the time, Thato was thrilled with her career and loved every second of it. This, in turn, meant she was often sleep deprived.
“I would have catered more time for fitness and seeing a psychologist or coach to guide me in emotionally difficult situations, including the choices that I made pre-stroke," she says.
Thato also neglected being conscious of her eating choices, and after the stroke she quickly understood that her fitness and dietary lifestyle could prevent another stroke.
She gained 20kg post-stroke, and after doing research, she lost it in six months, and has maintained that weight.
As for her diet, she gradually transitioned into becoming partially vegetarian, ensuring green vegetables and gluten-free foods are part of her meals. The brain and the gut are fully connected, and Thato fully supports the saying that "you are what you eat".
“The healthier you eat, the healthier you are. I am both lactose- and gluten-intolerant. Since removing these substances from my diet, eliminating sugar, and being partially vegetarian, I became emotionally more confident.”
An entrepreneurship company
Thato also found that indigenous sorghum is not only a preventative food for stroke, but also a natural prebiotic that assists the microbiome within the gut, assisting the brain with the body’s wellbeing.
After the experience she started funding a small black entrepreneurship company for women called Prosperity Food Co., which focuses entirely on indigenous beverages and snacks.
Fitness in itself is also part of stroke rehabilitation, she adds. Together with her fitness training, meditation, and speech therapy, she’s slowly making progress. With time and perseverance, Thato believes her efforts will bear fruit.
Since letting go of her law career, she’s stepped in as a stroke activist and volunteer for the Stroke Survivors Foundation, a national non-profit organisation that provides physical and emotional support to stroke survivors and their families and caregivers. She doesn’t want others to go through what she did, so she’s educating people about the importance of taking action when suffering a stroke.
She wants people to take away a critical lesson from her story, which is that it can happen to anyone, even those who, like her, have a seemingly healthy lifestyle.
“Most of all, I would have noted the signs of a stroke and taken the time to learn the BEFAST, as at least one of the signs would’ve alerted me to the fact that I was having a mini stroke, and later a full stroke," she says.
If you suffer a stroke, remember that recovery is possible, Thato says. "With stroke rehabilitation and enough determination, you can slowly repair and rebuild yourself."
*World Stroke Day is observed on 29 October to bring global attention to stroke prevention, and to raise awareness of the treatment of the condition and ensure better care and support for survivors.
Image: Thato Minyuku