It was a day in 2013 I will never forget. I was listening to the radio when it was reported that Joost Van der Westhuizen, who had been diagnosed with MND in 2011, was feeling very positive. The commentator said that Joost just missed being able to feed himself. I remember thinking how awful that must be. Never in my wildest nightmares did I think that I would be following in the debilitating footsteps of South Africa’s legendry Rugby Captain.
Bringing awareness to the disease
I am writing this account of my own experience in order to create awareness of what people with Motor Neuron Disease (also known as Amyotrophic Lateral Sclerosis, ALS) go through. I hope my story will help carers, friends, and families of sufferers of this terrible disease to understand some aspects of the illness, particularly the emotional perspective.
A ‘wretched’ disease
In May 2014 I started slurring my words and decided to see my doctor. I remember him saying that he hoped it was not MND because it is a “wretched” disease. I was curious about his choice of words, but brushed them off as it was not possible that they could apply to me, I thought. I had numerous tests done by a neurologist. By September 2014 I was experiencing fasciculation (tremors) in my arms and my speech was worsening. The neurologist informed me that I had Bulbar MND. I remember not being able to hold back the tears as this death sentence was handed to me. At the time I couldn’t understand my apparent emotional outburst, but realised, after a Google search, that it was a symptom of the disease.
Taking refuge in Christ
My dear friend and pastor, Paul Gerber from the Church of Christ in Somerset West, suggested that we host a Bible study group every Wednesday morning at my house. For the last few years, Paul and Hettie have been spiritual companions, dear friends, and Paul has been invaluable as a teacher of scripture. I know that God definitely exists. He knows us intimately and He definitely hears our prayers. I can testify to that. He just doesn’t answer right away and His answers are almost never what we want to hear, but are always in our best interests. I take comfort in knowing that God is with me and that everything is going according to His perfect plan for me.
The illness progressed…
My biggest regret in life is missing out on time spent with my son Emil. Before I knew it, he grew up and had his own interests and dreams to follow. He inherited my love for music and his mom’s flair for art. I couldn’t be more proud of him. Not being able to give him a hug or having a meaningful conversation is tough. As the illness progresses, slowly but surely everything that you love and hold dear is taken away from you. The first thing to go was my energy. I am, by nature, an outdoors person and so the lack of energy caused me to stay at home more. The second thing to go was my autonomy. Handing over the keys to my car was probably the most difficult thing to do. Going from an extremely independent, fastidious person to having someone with me, caring for me 24/7 and having the patience to fit in with their schedule was and still is very hard.
The third loss was not being able to speak fast enough
With family and friends, I could not keep up with the conversation and soon I stopped speaking. People then started to address my primary carer and life partner., Susan, instead of me, so I was pretty much reduced to a spectator at gatherings. Relating to a person with ALS requires physical and emotional effort. It is easier just to avoid them and most people then just follow the path of least resistance. I am fortunate to have numerous people in my life that really go above and beyond to be there for me. Susan has been with me through thick and thin, caring for my physical needs even though the going got really tough. My sister Olga and my mom Helen have been amazing in their support of me.
The fourth loss was my ‘stuff’
Everything, including my wallet, floats around all over the place and I never know where my things are because other people move them and are handling them in place of me. My car has been damaged. I can’t explain the frustration and helplessness I felt looking on as well-meaning people damaged or lost my earthly possessions from not paying attention. Luckily, I have made peace with this. My car on the other hand I still battle with.
The fifth loss is my dignity and my privacy
No more showering alone and going to the loo on my own. When someone feeds me, I have to eat the way they eat and the chances are that they often mess on me or get distracted by conversation and lift the spoon without bringing it to my mouth while I’m sitting there with my mouth wide open. The worst is the drooling.
Sixth was my comfort
Not being able to scratch your body when you have an itch or not being able to chase a fly away is really frustrating and extremely uncomfortable. Your muscles are wasting away and don’t support your body as well as they used to, so when you sleep or sit you have to change position often. No more getting that sweet spot where you are completely comfortable. You also get severe cramps all over your body.
The seventh loss is the most painful. You lose your relevance
People start treating you like you are mentally challenged and your hearing is impaired. They speak to you loudly and slowly and ask your partner to make decisions for you. Suddenly people are speaking about you, in front of you, as if you are not there. When I speak, the words I say make perfect sense in my brain. I can hear the words as I say them, but what people hear makes no sense to them so I have to repeat myself over and over again in the hope that they will understand.
With ALS, the brain is not affected as far as intelligence goes, but there are subtle changes especially on an emotional level. I have developed claustrophobia, extreme anxiety, and I battle to control my emotions. Lying in bed alone and not being able to breathe because my bi-pap (breathing apparatus) goes off because of a power failure, has happened to me a few times. I can’t explain the feeling of absolute fear of not being able to move to take the mask off or to sit up.
Advice for loved ones
If you have a loved one with MND, make sure that you and the caregiver, if you have one, pay close attention all the time. There’s nothing worse than uninformed, absent-minded or distracted people repeatedly doing the exact opposite of what you need them to do. It is absolute emotional torture. The level of frustration and fear that the sufferer experiences cannot be over-emphasised as your body slowly but surely shuts down, knowing that you can’t do anything about it. What people don’t realise is that when you have a freak-out, it’s not just about one thing. It’s a build-up of a multitude of frustrations and emotions that are repeated daily. If you ever have an encounter with a person with ALS/MND, remember that they were probably normal, healthy, and strong for most of their lives. A little patience and consideration goes a long way.
Draw closer to God, He is in control
My advice to a person recently diagnosed with MND is to live one day at a time. Don’t worry about what lies ahead and enjoy every day to the full. Live as healthily as you can without depriving yourself of too much. Don’t drive yourself crazy by trying every possible remedy. Own your disease and never lose hope. Don’t just accept that it is all over. Draw closer to God. You never know what His plans are for you. Don’t focus on what you have lost. Focus on and appreciate what you still have. God understands exactly how you feel every step of the way. This life on earth is temporary. A wonderfully fulfilling eternal life is waiting for you after this life if you are a believer in Jesus Christ. In Heaven there is no suffering. While you are here set an example of love and forgiveness and try to make a difference in the lives of those around you. It will set you free.
Date published: 18/08/2019
Written by: Werner van Zweel
Feature image: Werner van Zweel in Hospital
Article source: JOY! Magazine