'This disease has given me so much' - MND sufferer

Johannesburg - After being diagnosed with Motor Neuron Disease, Gerda Beukes has stared death in the eyes and suffered through alcoholism and depression, to emerge a happier, peaceful person.  

“If someone had to tell me nine years ago 'you'll be in a wheelchair, not able to use your hands and arms', I would say, that’s not a life. And today it is a life, it’s my life and it’s worth living,” she says.

As the 36-year-old talks, she has to blow her blonde fringe out of her eyes. She has lost the use of her arms and legs and is confined to a wheelchair.

The disease recently started affecting her ability to swallow and she has had to have a feeding tube put in. But she no longer focuses on what she has lost.

“Someone asked me the other day if you could get your body back, if you could be exactly the way you were, but then lose all the spiritual growth, would you do it? And I said no, because who knows if I would have grown spiritually if I hadn’t become ill.”

Former Springbok rugby player Joost van der Westhuizen, Werner and Gerda Beukes and their  children Charne and Zander. (News24)

Diagnosis

When Gerda was diagnosed with MND, she asked her doctor how long she had to live. He gave her two years. That was nine years ago.

The once active long-distance runner says it began in her left thumb. She was unable to pick things up, but she pushed it to the back of her mind.

“I was always very active, and I had started a new business and my baby was 1-year-old so I thought, ag, I must be overdoing it, I just need to take it slow.”

After it spread to her hand, she went to a neurologist. A series of tests ruled out other conditions, and the diagnosis was confirmed.

“It’s the worst of all the possible diseases. You think oh please not that one. This one is terminal and it’s progressive weakness.”

It spread to her right arm and hand. After about four-and-a-half years it began in her legs, but, being stubborn, she kept walking.

“So, I fell a few times. One time I broke my jaw. Got stitches in my head. Got my wrist broken. I just wouldn’t get into a wheelchair.”

Gerda finally relented and has been in the wheelchair for four years. The disease has not progressed much since then, but the difficulty with the swallowing began recently.

Her husband Werner says he was shocked and horrified, and it took him some time to learn to accept it and move forward.

For Gerda it was shock, denial, then all the stages of grief. 

“Maybe it’s a good thing to have a time limit,” she says of the two years her doctor initially gave her to live.

“Because you don’t stay in one phase for too long. If you’re depressed you realise you have to get out of it. You don’t want to die like that. And you start thinking about the legacy you’re going to leave.”

Drinking and depression

For about eight months Gerda turned to alcohol in an attempt to run away from the disease. The alcohol began controlling her and it got to the point where the mild-mannered Werner threatened to take the children and leave.

“Werner normally doesn’t say much, so if he says something you can really take him seriously.”

He went to Alcoholics Anonymous, but she refused to come along.

“I said no, I’m not going in a wheelchair to AA, it’s embarrassing. You see how stupid [I was]. I can drink in a wheelchair, but I can’t go to AA in a wheelchair.”

Werner returned from the AA meeting with a friend, who helped her along the way, but she says she largely did it on her own. She refused her mother’s offer of pills to help her with the withdrawal symptoms.

“I said to her, ‘no it’s fine, I’ll just go through it’. Because I always wanted to remember, if maybe I wanted to drink again. I wanted to remember what it felt like to stop, to really stop and to go through it.”

Gerda realised drinking was not how she wanted to spend her life.

“And I just realised you don’t play with time. It’s a gift. And I started thinking about the legacy I’m going to leave behind.

"It [the disease] took me to drinking but made me stop too, because again I realised I didn’t have time to waste on this.”

After she stopped drinking she became depressed because her coping mechanism was no longer there, but her problems certainly were.

“That’s when I really started dealing with the disease.”

After her drinking ended, she says she was a “white knuckle drunk”, someone who uses pure willpower to stay sober and is not happy.

“You’re not drinking, but you want to drink and you’re not happy.”

Her advice to others experiencing the same thing is that they can be happy again, even happier, without alcohol. It was a miracle to get rid of the alcoholism.

Look mortality in the eye

Her condition has forced her to confront her own mortality.

“If we look at it face to face, it takes away the fear.”

Someone once asked her what it was like living with death hanging over her. She replied that we are all living like that.

“The only difference is, I’ve realised it. You can walk out of here and you can die before me.”

Death is a part of life, a requirement for renewal.

“Sometimes when we pass grieving people they look dead as well. What we don’t realise is what’s happening inside, the roots are going deeper and deeper.”

Her disease has led her to accept things as they are.

“The funny thing to me is how one phase of life can prepare us for the next. And sometimes when we’re in it, we definitely don’t understand why we’re going through it.”

Baking

Realising she needed to do something to keep busy, she turned to baking. It is something the former insurance broker cannot explain, having never had an interest in it.

Gerda and her helper Prisca Mtshali now run a small baking business from Gerda’s Alberton home. Gerda is able to use a computer with voice recognition software, and a tablet by holding a stylus in her mouth. She takes the orders and Prisca does the baking.

It has given Gerda the opportunity to do more than just make dough.

Once people came to collect their orders, they asked her why she was in a wheelchair, and she was able to share her story.

“And it gave me a platform to start talking to people.

“When I got to the place where I sort of accepted the disease, I felt like I had a story and I felt like my story could mean something to others. I just didn’t know how to get it out there.”

Wisdom

There is wisdom far beyond her years in what she says.

“This disease has also given me so much. It made me sit down and think about the things that I believe in, who I am.”

“I used to be such a busy person, running around. I’m sure I missed half of life. I used to run after things that aren't really important.

“Sometimes we use busy-ness to run away from things that are really important, like where we are in life, our priorities, what’s really going on in our souls.

"And I think sometimes our souls are really trying to shout at us. But you can really only hear them when you’re quiet and when you’re still.

“Sometimes it’s the people that’s the busiest and the friendliest from the outside that’s the most troubled inside. If you start talking to them you realise, yo, they’ve got so much pain and things going on inside.”

She used to think that she could show love through the things she did.

“And then all of a sudden I couldn’t do anything anymore. And then you have to get to a point and say, ok, if I’m not what I’m doing, then who am I?

“No matter what we lose, whether I can’t see or hear or talk, the core being of me is still me, but to get to that place...”

The things she once thought she could no longer do without have faded into insignificance. What has taken their place is the need to spend time with her loved ones, and to reach out to others.

Focus

Having been physically active before, she noticed how the disease was affecting each muscle in her body. 

“I would really get frightened and nervous about it. I would be aaah, this finger is going. Then one day I just decided to stop concentrating on what I’m losing because it’s driving me crazy, and I’m going to start concentrating on what I’ve got left and what I can do with it.”

It has been hard seeing how her condition has affected those around her.

“It is hard for me to see Werner struggling. It’s hard for me to see the kids struggling, and my parents and friends.”

She has a good support system, and is full of praise for her friends, parents, and Werner.

“You’re taking them with you unfortunately, and they each have their own journey through their own grief. And we can all be at different stages of our grieving.”

Their daughter Charne was a year old, and her son Zander 2-and-a-half when she first noticed something was wrong.

“So they’ve always known me as I am [now].”

A psychologist advised Gerda to tell them about it in a language they could understand, explaining only each step of the disease as it progressed.

'Life is fragile and one must live in the here and now to be happy'

When they got older and began asking questions, she decided that being honest was the best - although not always the easiest - option.

“What I’ve learnt is that you can’t always fix things. You just have to be in the brokenness with someone.

“Now I will say 'I can see you’re sad. I’m sad too. It’s not something that we can understand, it’s not something that I can fix. I can promise you it’s not something that I would want also for us, but we can choose what we’re going to do with it'.

“So I’d be honest with them. And since they’ve started asking can you die of it, I would say, ‘yes I can’. And then they would talk a lot about death and life and heaven.”

When she compares her children to those of other families, she can see they know so much more about life. It has taken away some of their innocence.

She knows they get sad and struggle when they see other mothers doing things with their children that they will never get to experience. But she reminds them not to focus on what they do not have.

Initially Charne was embarrassed about her mother being in a wheelchair, and tried to stop her from coming along to school functions.

“Now with the business I know all the moms and all the kids and everybody knows my story, so that makes it much easier for them.

Werner says Gerda’s disease has made him realise that human beings are extremely resilient and when faced with challenges, they can do incredible things.

“Life is fragile and one must live in the here and now to be happy,” he says.

The disease has given him the opportunity to show what he is made of as a man, husband and father – as a person.

“At the end of the day I believe the disease does not define the person and it is how an individual reacts to circumstances that is important.”