Choose Your Language:
Posted by: The Sumaira Foundation in NMO, ON, Patient, TM, Voices of NMO
Sunday 15 December 2013, on a friend’s farm in the beautiful little town of Dullstroom in Mpumalanga South Africa, started as blissfully peaceful as it sounds. This was to change from around noon that day when I started experiencing severe headaches and bouts of dizziness. I initially thought it was hay fever or something like that, but it persisted and continued to get worse with no medication improving the situation at all…
The following week saw me access three different emergency units where I was treated for “stress headaches” (one of my symptoms were that I was unable to urinate, so I’m not too sure how the doctors concluded that it was stress related) and migraines. I eventually contacted my parents, who were visiting an aunt in Taiwan at the time, who managed to get hold of a neurologist who my mother knew; Dr Wiebren Duim—a remarkable man of God, whom I have the utmost respect and gratitude for.
At this stage (23 December 2013), I had been unable to urinate for nearly three days, was in immense pain and discomfort, and my vision was blurry. I was gradually losing the ability to see through my left eye in particular. I was admitted and spent Christmas and New Years in the hospital without a final diagnosis of what exactly was causing this.
On January 31, 2o14, after several tests, scans, and multiple admissions to the hospital, I was finally diagnosed with a rare condition called neuromyelitis optica, also known as Devic’s disease. Essentially, this disease causes your immune system to attack your optic nerves and spinal column. The diagnosis for this condition was symptomatic, as I am one of about 25% of individuals with the condition who do not show the traditional markers for the condition. This meant that I needed to first have enough damage on my spinal column to show a spinal cord lesion of at least three vertebrae. The diagnosis, though coupled with a rather poor prognosis, provided such strange sense of relief as we had an idea of what we were fighting and how to fight it. At least that was what we thought…
My case proved to be particularly aggressive and in 2014, I continued to spend 78 nights in hospital receiving multiple operations and different treatment options available at the time. Because the illness was relatively new and unknown at the time, treatment options were still considered experimental and patient responses seemed to differ from one regimen to the next.
The attacks were generally quickly contained, and treatment had me back looking healthy within two weeks; apart from the occasions where I had treatment complications and infections in my heart and/or chest cavity.
The eleventh attack in the first 15 months, that started on 12 March 2015, proved to be more aggressive and severe than any of the preceding 10… At first I thought it was some sort of infection as my immune system was compromised by the medication. I was admitted to hospital on the 18th of March 2015.
I could not even move my toes or see changes in light – not a thing. I was completely dependent, wearing nappies, having a catheter inserted 24 hours a day and needed to be fed and washed in my bed. The only thing that I could do for myself was to brush my teeth. I had an electric toothbrush that I needed to hold with both hands as I slowly moved it across my teeth one-by-one, twice a day. It was the highlight of my day. The incredible nursing staff in the St. Francis ward of the Life Groenkloof hospital in Pretoria used to joke and say, “Mr. S”, as they affectionately referred to me, “you have the cleanest teeth in the hospital”.
On 1 April 2015, I commenced with Mabthera (Rituximab) treatment, a type of biologic treatment, that in layperson’s terms destroys the body’s B cells that forms part of your immune system. Thus, it effectively eliminates your immune system completely to remove the attacker.
The Mabthera seemed to bring an end to the attack and my life no longer seemed to be in danger, but the damage was done… I asked Dr Duim on the 5th April 2015 to please explain to me what my giant looked like—I needed to know what I was fighting. He then proceeded to tell me he believed that I might see again, but that I would probably not read and that IF I would ever walk again, it would not be within SIX MONTHS. He advised my parents that I would need to move back in with them, that I would need 24-hour care, and that they would need to make their home wheelchair-friendly; which they started doing the very next day.
The next few days were obviously very emotional and difficult… On the night of 7 April 2015, I cracked as laid in my hospital bed overcome with despair and crying.
One of the nurses—I honestly believe there is a special place in heaven for nurses—came and sat next to me holding my hand, consoling me.
Before she left to tend to another patient, she assisted in putting my earphones from my work iPad in my ears that enabled me to listen to music. There were more than 1,000 songs on my iPad. Two songs randomly played back to back where I felt God speaking to me through their lyrics. The songs were ‘Go the Distance’ by Michael Bolton and ‘Courageous’ by Casting Crowns. I decided then and there that:
I knew that I needed to make the best of what I have left and that, as my mother loves to say, ‘the only way out is through’. I needed to run the race again.
Despite this new-found resolve, the next few hours were still an emotional rollercoaster. I was still utterly frustrated. I was angry. I felt it was unfair that the Lord would allow me to go through this. That I was someone who knew the Lord, I confessed with my tongue that Jesus is Lord of my life and I believed that God raised Him from the dead. Surely, I did not deserve this.
In my frustration I prayed and asked, “Why this? Why me? Why not ‘that guy’?”. I mentioned someone’s name. A name that I’ve never mentioned since, not even to my now wife, Suzy, and never will mention again. Someone who I, to my shame, felt was more deserved of something like this befalling him, than me. I suddenly realized that I was not being the man I wanted to be in that moment. That I was being self-righteous and contradicting everything that I preach and proclaim to be. That I was being a hypocritical Christian—the very thing that I advocate against.
But then, the Holy Spirit counselled me and said: “YOU’LL NEVER GET AN ANSWER TO THE ‘WHY’ QUESTION THAT WILL SATISFY YOU, JEAN.” I understood that nothing anyone will say to me at that stage will make it OKAY that I am going through this. But He continued and said, “BUT ‘HOW TRUMPS WHY’! YOU SEE, HOW YOU GO THROUGH SOMETHING, THAT CAN GIVE PURPOSE TO WHAT YOU’RE GOING THROUGH… PURPOSE TO YOU AND PURPOSE TO PEOPLE AROUND YOU”.
This made sense to me at the time. But I still could not understand how I could make my “how” mean something if I could not how – I could not do anything. Tearfully, I continued to pray. I asked God to provide me with an opportunity to mean something to someone; be it another patient, a nurse, a therapist, a doctor, hospital staff, a visitor, anyone. I just wanted a sense of purpose again.
The next morning, I got an opportunity to mean something to a fellow patient and three other individuals. Three complete strangers and a nurse whom I knew from all my days there. The one person was unhappy at work, the other unemployed, the other had difficulty in her marriage, and the last one’s children were using drugs. I was able to speak life into their situations while I was in my situation. That same day, the afternoon of 8 April 2015, my toes moved for the first time during my therapy session! Still incoherent, but there was movement.
From there on, my recovery was truly remarkable. Though I still had to start by learning to sit again, let alone walk… It is almost impossible to describe how it feels to lose the ability to balance and correct completely—even while seated. At this stage, the prognosis was still bleak. My brother had to learn to give me a shower and my parents continued with the construction to make their home wheelchair-friendly.
But God… He had other plans. I took my first step, using parallel bars for assistance with a friend, Mark, there in attendance, cheering me on in support. Six days later, on 18 April 2015, I walked more than 10 metres with a walker that was caught on camera and I took my first shower independently that evening.
Four days later, being stable enough to focus on my rehabilitation, I was transferred to Meulmed Rehab. Here, my recovery continued to be miraculous and on 28 April, I got out of my wheelchair for the very last time! I was able to walk using a walker or two crutches. Movement was wobbly and somewhat uncoordinated, but I could move independently—I was free. The doctors at Meulmed decided that, to minimize the infection risk in hospital, that I should be discharged and only come in every second day to do my rehabilitation sessions.
I was discharged from Meulmed on 1 May 2015. The doctors advised further that I should, for my first weekend out, do something as normal and challenging as possible to identify which areas of my recovery still needed the most work to become completely independent again.
A group of my closest friends planned to go to a farm in Lephalale that weekend as it was a long weekend in South Africa. I was immediately extended an invitation to join them upon hearing that I was being discharged. I went directly from the hospital with my father to a grocery store, bought what I needed for the weekend, and left with the friends to the farm. It was very uncomfortable, but the sense of freedom was completely overwhelming!
I still needed to self-catheterize every four hours as I could not yet void my bladder on my own. I struggled on that first night, to the extent that I fell on my way to the bathroom and Danie, one of my friends that I have known since the age of 10, needed to assist me in getting up.
The group wanted to go for a game viewing drive in the bush that next morning after breakfast. I suggested that I first catheterize before we left as that would allow for a longer game drive. They proceeded to the game viewer waiting for me before we left.
I needed to walk across approximately 30 metres of lawn, with a crutch in each hand, to get to the game viewer. Half way across the lawn, I suddenly heard a deep male voice saying, “LIG JOU KRUKKE JEAN” (‘Lift your crutches Jean’ in Afrikaans). Dazed and confused, I stood there on the grass, looking around to see who or what had said that. Again, I heard the same voice saying: “LIG JOU KRUKKE JEAN”. I looked over at the game viewer and the friends were chatting and were clearly oblivious to what was happening and what I was hearing. Danie, still concerned about me after the fall the previous evening, kept his eye on me as I was standing there. Then, I heard the voice a third time saying: “LIG JOU KRUKKE JEAN”. This time I responded. I lifted my crutches and gave my first three unsupported steps! Danie, followed by the rest of the group, rose up from the game viewer cheering as if we’d won the rugby world cup! I slammed the crutches on the ground in astonishment with a smile that I felt my face could not contain. From that moment, I dropped one of the crutches and just used the other to stabilize and correct me as I walked when I lost my balance.
The rehab continued upon return from the farm and I had nothing to report in terms of great areas of concern regarding my independence. Thus, the construction done to make my parents’ house wheelchair-friendly was not necessary. The seat in the shower that Wikus, another friend that I’ve known since the age of 10, installed, only ever served as a place to rest the shower gel and shampoo.
I notified Dr Duim that I had been discharged and he requested that I come to see him as soon as possible for a check-up. The consultation took nearly an hour and at the end, we sat at Dr Duim’s desk where he was scribbling notes on a piece of paper. I remember finding the lack of communication in those few moments strange as he did not say anything for, what felt like, a few minutes. We were close by that time, which made the behaviour seem even stranger. Then he smiled and said:
A few days later, on 21 May 2015, my brother’s beautiful daughter, Anna, was born. Her birth was another miracle that I believe contributed greatly to my rehab. And though she was born three weeks prematurely, the timing of her birth could not have been more God-ordained. This enabled me to spend quite a lot of time with her during my rehabilitation that was probably the best therapy I could ever have asked for.
I told my physiotherapist, shortly after Anna’s birth that, by 30 June of that same year, I will have played a round of golf and completed a 5 km run… She was supportive but added that I should manage my expectations. That she was very happy that I was so positive but added that I should not be too disappointed and become despondent if I did not make it. By the end of my rehab two weeks later, she no longer felt like the goal was unrealistic. She exclaimed nearly every day, “Ek kan dit nie glo nie!” (I cannot believe it) when seeing my progress from one day to the next.
To the concern of many, I insisted on returning to work on 15 June 2015. There were many challenges, but I believed that exposing myself to normal life would get me back to normal sooner. And I still believe I was right.
On 20 June, I played my first round of golf. Not very well, but I played and enjoyed every second with some of my best friends cheering me on and capturing my first stroke on film. A week later, I played a second round. And then, on 30 June 2015, I went to the Virgin Active gym in Rustenburg, determined to do the 5kms I had committed to do. I had to do it on a treadmill to have something to grab onto if I fell. It took a little more than 37 minutes—BUT I DID IT!!!
The blessings—in all facets of my life—started becoming exceedingly and abundantly clear! Not only was I getting stronger, fitter and more mobile; picking up 18 of the 25 kilograms I had lost, but I started getting acknowledged at work like never before.
More than that I met, after having given up on love just a few months before, the most incredible woman I had ever me, Suzete Figueira da Silva, who accepted me and chose me despite all the challenges that presented. When it came to my prayer list for a wife, she literally ticked every box that I ever prayed for…
On 17 September 2015, only six days after meeting Suzy, Dr Duim wrote a motivation letter to Discovery for a follow up dose of Mabthera. The first paragraph of the letter contained only four words, it said,
What made my story such a miracle is not merely the fact that I can see and walk again. It was the speed of the recovery given the extent of the damage that made this all even more significant. In October 2018, while receiving another dose of Mabthera, one of the nursing staff, Maryke, at Life Groenkloof came to Suzy and I and said, “Jean, I still remember 1 April 2015 when they pushed you into the oncology ward for the very first time. I remember three of us standing here with tears in our eyes as we looked at you. I remember us asking each other why your parents would waste all this money if you were going to die tonight anyway. And just look at you now”. A little taken aback, I told Dr Duim later that day what Maryke said. He agreed and echoed the fact the he did not believe that I would make it through that night.
I managed to get back to my original weight by March 2016. I have regained, I guess, about 80% of my vision in my left eye and 95-98% in the right. I walk, run, and jump seamlessly and, apart from a couple of minor ailments, would appear to anyone else as very healthy. More than that, Suzy da Silva has now become Suzy Slabbert! We got engaged on 19 March 2016 and married nine months later, on 19 December of that same year. Our first-born son, Jean Christopher “JC” Slabbert was born on 25 January 2019.
I do not take my next words lightly and have given them much consideration before even uttering them the first time. But if God was to come to me today and tell me that He would take me back to early March 2015 and I could go through this time without the trial, I would honestly say ‘Give me the trail again’. God has done an amazing work in me through this. I experienced Him as I have never done before! And for that I will be forever grateful and always attempt live to His glory!
“And now three remain: faith, hope and love. But the greatest of these is love.” 1 Corinthians 13:13. I am not enough of a poet to express in words the gratitude that I have for my father, mother , brother, other family, friends, colleagues and so many others around the world for their love, support and prayers. There are only two continents in the world, South America, and Antarctica, where I am not personally aware that someone prayed for me during that time. To my Suz, for loving me despite the uncertainty that my life represented when we met. I spent more than one in every five nights in hospital during the first 3 months that we knew each other, and she still stayed by my side all the time.
Finally, to the living God who hear my cry, and lifted me out of pit of despair, out of the mud and the mire.
1 I waited patiently for the Lord to help me,
and He turned to me and heard my cry.
2 He lifted me out of the pit of despair,
out of the mud and the mire.
He set my feet on solid ground
and steadied me as I walked along.
3 He has given me a new song to sing,
a hymn of praise to our God.
Many will see what He has done and be amazed.
They will put their trust in the Lord.