Fighting the good fight: The Stroke Survivor Series
What do you do when your whole life is ahead of you and, in an instant, it’s shattered? Your hopes and dreams lie like shards of glass around you. This is the start of a terrifying journey for a stroke survivor. This is George’s story and he hopes it will inspire those who choose to try and get something of their lives back and face the world with grit and determination. It will take some time and many days of therapy – but if you look at George’s life now, you’ll agree it’s not only possible but life’s yours for the taking. Are you up for the fight?
By Terry Owen
George Scola was 37 when he had a stroke
It came out of nowhere. There were no symptoms, no feeling ill, no headaches, nothing. One moment he was carrying a couch while moving home, and the next he was in an ambulance tearing off to hospital. His one side was paralyzed. What speech he could produce was nonsensical.
George was dumbfounded. A stroke? At 37? He was marginally fit, slightly overweight, but otherwise a normal, healthy 37-year-old. He was on the brink of opening a coffee shop in Cape Town for his wife, lived in Hout Bay, had an idyllic lifestyle and it seemed that things just couldn’t get any better. He’d also recently run a mini triathlon.
Then, out of the blue, one of those curved balls that life has a habit of throwing at you came zinging towards him at full speed.
Everything that was ‘normal’ about his life before the stroke was gone. He was in hospital for two months, plenty of time to think about what had been and what life was like now. He says people spoke to him about the ‘stages of grief’ which he knew nothing about but learnt quickly. He is, in fact, still thinking about them. He knows a lot more about them now.
Of course, he was angry. Who wouldn’t be? But George being George he couldn’t stay angry forever. There’s an entrepreneur spirit within him, that has always been within him, that the stroke could not kill. This spirit was bubbling under in hospital. Even though he had to check his dignity in at the door. Even though he was in a wheelchair. Even though people battled to understand him.
So, with anger and depression simmering, he knew that he could wallow in self-pity or try and move that magnificent mindset that was normally raging ahead in better times round to his current situation. It wasn’t easy and he’s not sure whether he really succeeded, but he thinks probably it was the trying that made him forget about the anger and depression.
“I couldn’t even add one plus one,” he says grimly. This coming from a man who was a business entrepreneur, quite ofay with drawing up business plans and financial forecasts.
What was astounding to George when he left the hospital, still in a wheelchair after all the therapy and the speech still somewhat reluctant to make complete sense, that there was no support group for stroke survivors.
“It was not only for me and others who had been through the same thing,” he says. “But there was no-one to hold any survivor or caregiver’s hand and show them how to adapt to the new lifestyle that they found themselves in. It was like suddenly finding yourself in the twilight zone.”
He decided to start his own support structure after meeting another stroke survivor, a single mother in her early 30s who was just as clueless as he was.
“How does a single mother who has suddenly become disabled raise a child? How does the child deal with a mother who has suddenly become disabled? The things they used to do together were suddenly impossible, and the child does not understand. So, is it any wonder that we were on a mission to find people who could help us, and us helping others in return?”
George says they started slowly, his entrepreneurship kicked in, and the group grew.
“I had made a lot of contacts and they have all proved invaluable throughout the years. I also investigated a lot of organisations and what part, if any, they could play in our rejuvenation and restoration. Thankfully, I make friends and contacts easily, so I could put these gifts to good use.”
The one burning issue that they found then, and still find today, is to do with funding.
“It’s incredible that there appears to be funding to be for diseases like cancer and AIDS, but nothing for stroke. When you look at the stats – one in four people will have a stroke in their lifetime – this is absolutely astounding.”
To raise awareness about stroke, George decided to take to the road. This was in 2010, 18 months after his stroke. He could walk then, after much therapy behind him, and had been training for the event stoically and continuously.
His aim – to walk from Messina to Cape Town. I look at him in amazement. Just the thought is enough to make me shiver.
It took him six and a half months. It was incredible. It was what I would have thought would be impossible. But he did it, and the event was featured widely on television and news media of the time.
“During my walk I learned so much about stroke, and the myths surrounding it. In the African culture, you are considered to be bewitched it you’ve had a stroke, so they don’t go near you or touch you. The black nurses have a slightly different understanding, but if you dig deeper, you’ll find those same beliefs are still there.”
George says that this was the first fund-raising event, and it also served as inspiration for other stroke survivors to what was possible if they put their minds to it.
“It is important to show others that there is life after a stroke. It helps to have a positive mindset, which is luckily something I was born with. If you haven’t, work towards getting one. It will change your negative attitudes that are holding you back.”
As part of their support network, they talk to families who have had a member suffer a stroke, tell them what they can expect and help them along the road. It’s also so important for the stroke survivor to know that there is someone there that’s looking out for them.
George says that when he left hospital, he moved into his apartment on the second floor! At first, as he was too unstable to walk, he managed to do step-by-step “on his bum”!
He says that he had an ischemic stroke partly due to the thick blood which is an inherited gene thing.
“When I say one half of my body was paralysed, it’s very precise. For instance, half of my tongue was paralyzed! This was naturally responsible for a lot of his speech problems. I couldn’t roll the Afrikaans “r” because of this.
He says a lot of progress is up to you, to force yourself to things.
“For instance, I used to walk every morning. About two weeks ago, after nearly 12 years since the stroke, it suddenly entered my head that I should try jogging, which I had never done since the stroke, and suddenly, off I went. You have to push boundaries all the time.”
George points out that no two strokes are the same.
“It all depends on what side of the brain it’s happened, how big it is, your health at the time, how quickly you got to hospital and how quickly you were treated. There’s also a lot that can affect your recovery, and your mindset could be a big stumbling block. Don’t accept all the limitations that doctors place on you. Face them. Fight them. You’ll be amazed at what you can do.”
The New Reality
George says that it’s when you get out of hospital that your ‘new reality’ hits you.
“People don’t know how to pick you up out of a wheelchair, bath you, get you into bed. If you fall, getting picked up is a skill. This could be make or break for a lot of people. Depression descends like a cloud of doom that many fight hard to get out of, and some don’t make it at all. This is where a support structure steps in and helps you through. It just wasn’t there for me and a lot of other people.”
It was made all the worse for George as the 30s are when you are laying down the plans for your life, and everything you’ve planned goes down the bathtub.
“You’ve got to start from scratch. It takes you three to four years to recover from the trauma. Suddenly, you’re in your early 40s and 10 years have passed. It takes a lot to recover from that.
“Then there are the hidden disabilities. If I talk continuously for two to three hours, that’s me done for the day. I start slurring, and fatigue sets in. What company would be able to handle things like this? None, in fact, so I had to start off on my own doing something that could cope with my boundaries. Hence the Foundation. We’re a perfect fit.
“I have learned to embrace tolerance, patience and stave off as much as possible the triggers that bring on depression. The point is that you must learn to handle a social environment. Get a friend or someone from the foundation to take you to a coffee bar and spend a little time there. People are not freaked out by wheelchairs. You’re probably the only one who is! It’s important to get your confidence back and never be hesitant to ask for help. The two actually go hand in hand.”
Support groups for stroke survivors have now been set up by the Foundation in Johannesburg and Pretoria They have organised groups according to age, so there are those for youngsters and seniors and the elderly. Apart from the survivor meeting people and making friends, it is also a chance for your helpers to get some time off. Burn out is a common phenomenon with helpers and it must try and be avoided as much as possible.
Apart from being involved with Gauteng Health and departments and organisations in the Cape, George is also a board member of the World Stroke Association. He is in touch with stroke survivors around the world. A huge tip of the hat goes to this outstanding fighter for drafting a Bill of Rights for stroke survivors, that is used worldwide. The fight continues, though, for funding. It is rather a desperate situation.
An innovative initiative that highlights the difficulties faced by stroke survivors was put into practice recently be getting people to wear a blue glove on their dominant hand and getting them to perform mundane activities like putting on a tie or tying shoelaces with one hand. Or a young lady will try and put her hair in a ponytail with one hand.
It certainly brings attention to the survivors’ plight. And that’s just a little piece of it.
“You can either flee or fight,” says George.
We know what he chose.
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