Loving Somebody Extraordinary

It was September 24th 2006 when my path crossed with my soul mate. At 35 I had all but lost faith in eligible men and monogamous relationships, never mind conventional marriage. There he was sitting in the only patch of sun at a Bar-B-Que and I couldn’t resist joining him to soak up the warmth. I had just given up alcohol for good, and offered him a taste of my ginger beer. His cousin, our neighbour of 34 years, was having a farewell BBQ and Francois almost didn’t come. Meeting Francois changed my life forever. 

Francois is a wiz on computers and online games. At the time he was busy with Lineage II. He explained how he was able to gather with other online gamers across the world to arrange sieges, defend castles and fend off fierce dragons. He called himself a “lowly warrior”. I have since discovered he is more likely a Knight. With many of his fellow swordsmen being North Americans, most of the online battles were scheduled for 4am. This was no trouble for Francois and he would be awake and ready to support his guild. 

His lifestyle was akin to that of a vampire, drawing the thick curtains during daylight so the glare wouldn’t reflect off the graphics, and awake all night to battle. He fought with pride, honour and dignity, and this seemed to mirror his inner core. Francois was clearly a gentleman who encompassed good old fashioned chivalry. He also has a deep understanding of human nature, and a permanent good humour. These are rare and precious qualities that were obviously enhanced through his disability. Francois has a level C5-6 spinal cord injury (SCI) and is completely paralysed from his chest down to his feet. He has partial movement of his upper arms running down into wrist extension, but sadly it stops short of hand and finger movement. 

At 5:20pm on a warm Monday afternoon in 1992, a car drove into Francois flinging him off his motorcycle and breaking his neck. What would you do if you could alter 10 minutes in your lifetime? He was 18 years old and had just started working. He spent six months at the Conradie Rehabilitation Centre for spinal cord injuries where he recovered and was taught how to adapt to his new life. The first three months were spent in a head brace which was fastened tightly to prevent any movement at all so that the bones in his neck could fuse. They didn’t realize that his scapula was broken, and the pressure of the brace against his shoulder was agonizing. The pain in his shoulder restricts pushing his wheelchair to this day. Suddenly lying on your back with no sensation and no movement in your entire body is a life sentence that one cannot compare to anything. It’s unthinkable. 

The ward was full of men forced to come to terms with their injuries. They developed an unspoken bond and deep understanding that would resurface years later when they bumped into each other again. Every three hours they were turned to prevent pressure sores, which meant a peaceful night’s sleep was impossible. Pressure sores are one of the worst afflictions of paralysis. They develop too easily from lack of blood circulation, mostly from a hip or bony extrusion pressing for too long on a surface. Being paralysed means not being able to feel anything below the level of the break, and often a pressure sore can go unnoticed until it’s very serious. Tragically, two thirds of people with a spinal cord injury suffer chronic, intractable pain in those areas where there is sensation. A “complete break” is when the nerve has been completely severed, whereas an “incomplete break” means there is still some connection and some level of recovery.

God’s miracle of creation is clearly evident in how the organs of the body know their respective tasks and carry on as per normal. Bladders and bowels still need to be emptied. This is one of the biggest hurdles that a paralysed person faces, how to manage their bowel routine and to retain some sort of dignity. Did you know that it’s impossible to cough without chest muscles? This change’s the dynamics of catching a simple cold for fear that it may become bronchitis. I certainly didn’t know. I knew virtually nothing about paralysis when I met Francois. But I was willing to learn one day at a time in order to spend time with him. I laughed more than I had in years, life had become adventurous and fun, I had found my very own Mr Bean and perfectly preserved Peter Pan rolled into one. 

Our first date was a drive to Ceres, stopping at Bainskloof pass for a picnic. It would be his first picnic in 15 years. Imagine not doing things for 15 years, not going to the movies, not believing you could have a loving partner or a normal life. It was a first of many more firsts to follow. But that picnic was our very first time and we hadn’t yet figured out the do’s and don’ts. That day I burnt his hand with a hot coffee cup (he still has a small scar); he developed the start of a pressure sore sitting on a hard car seat; and he got a bladder infection from an overfull legbag that he didn’t want to ask me to empty. It was love. And the physical attraction was undeniable. He had a twinkle in his gorgeous blue eyes that made my heart skip a beat. 

We both knew from the beginning that we had found the love we had once believed in. I had travelled around the world and found the centre of my universe on my doorstep. We used to play together as carefree children. Francois proposed to me on 7/7/2007 during a weekend away at Cape Agulhas. Our friends and family joined in an awesome engagement celebration at Wiesenhof, in the heart of nature. We had a BBQ at the lapa overlooking the dam, with each guest receiving a straw sunhat as a special memento.

Soon after we met, Francois embarked on an arduous journey of studying IT through UNISA. It’s a four year course that he has immersed himself into, determined to make a success. He has been richly rewarded with distinctions for almost all of his subjects. It’s a tremendous achievement, especially given the technical difficulties involved for him to study and write his exams. He is fortunately able to operate a computer easily with the aid of a typing stick. In fact, with another set of helping hands he has built all his own computers. However, a textbook poses much more of a challenge. To handle a book and turn pages without the use of hands and fingers is no easy feat.

Here Francois’ mother deserves a special mention, as she tirelessly assists him with his studies as his caregiver. The first examination that Francois wrote was nail-biting. Other students are able to write exams but Francois needs a computer to type on. They had designated a computer at the back of the normal exam venue upstairs. On that particular day the lifts were out of order. Mayhem and panic followed. They contemplated carrying Francois upstairs, but this was too daunting and dangerous.

The library was downstairs and they ended up using one of the quiet audio-visual rooms, make-shifting a desk for him. Telephone books were cleverly placed underneath to raise the level of the desk to the height of his wheelchair. Another desk was placed alongside for Francois to be able to lean on. Without him having stomach muscles he is unable to balance, so without support he would topple over. I’m not sure if he would fare well on a boat, it’s an adventure we’re still to try. Lastly, he brings his own keyboard and mouse for ease of use. This was to become Francois’ examination venue thereafter. A few years on, Johan Jacobs, the Deputy Director at UNISA, specially designed motorised adjustable desks suitable for people with any sized wheelchair, and purchased state-of-the art computers for people with any type of disability.

Each exam has had its own set of challenges. Once, Francois had to re-write his exams. It was a very bleak day indeed. As Francois was finishing up and preparing to print, MS Word froze and all his answers were corrupted. That day Francois and his invigilator sat for seven hours straight as he diligently rewrote the entire paper. Tricky too is when questions require him to draw a technical diagram, which he cannot do. This can be beyond frustrating. Frustration is the number one stumbling block. Able bodied people are able to go for a walk, go for a drive, do something else to release our pent-up frustration. How does a paralysed person handle the many frustrations that he encounters? Francois remains sane with an insane sense of humour.

It’s a daily reminder for me to be ever-grateful that I am physically able to get out of bed, take a shower, hop into the car and drive to work. The simple everyday things that we take for granted are actually the greatest gifts in life. Francois is unable to cross a road on his own because of the pavements. It takes a minimum of two hours to get us both ready in the mornings. All routine tasks take thrice as much time and effort.

Going out can become emotionally draining when things go wrong: if the legbag leaks and floods the shoe with urine; not being able to find parking in a designated wheelchair bay; no room for the wheelchair next to the car, a small oversight in some parking areas; the catheter not draining properly (this is life-threatening if not fixed in time); extreme hot or cold weather (quadriplegics don’t have normal temperature regulating bodily functions); transferring into or out of the car in rain where everything plus the wheelchair cushion gets wet. Yet after the rain there is always a rainbow. We had a magical wedding on 4/4/2009, it was a dream come true. The love and support from our family and friends was phenomenal. This was topped by the best adventure we’d ever had, a honeymoon in Kruger National Park.

Wall-E was our travelling companion, a young fluffy lion with wild hair and an eagerness to see untouched nature. Kruger is well equipped for wheelchairs, and each of the five parks we stayed in had designated bungalows that were wheelchair friendly. Though being wheelchair friendly doesn’t necessarily mean being quadriplegic-friendly. On two of the balconies I almost lost Francois as he went flying down a ramp that was too steep, once backwards! He also burnt his hand quite severely while tending to the fire one windy evening. We had duct-taped a long two-prong fork to his hand so that he could turn the meat. He is unable to feel heat on his hand and the fire must have been hotter than we realized.

 We both tend to put on our McGyver caps when trying to find clever ways of doing everyday things. Great successes are duct-taping a table-tennis bat to his hand, putting non-slip handgrips onto everything, which has amongst other things brought out the chef in him. Along our travels we were privileged to find QAWC (QuadPara Association of Western Cape) through which we have met so many other people in a similar situation as us. Some were recovering at Conradie at the same time as Francois, cementing strong friendships. They don’t let adversity hold them back. It is fascinating to observe how everyone finds ingenious ways of doing things. It is just a lot harder to physically do everyday things, and a person’s potential is dependent on their environment and support base. Which is why it’s uplifting when total strangers offer their help. On a particularly interesting day at the World of Birds, a steep pathway had become damp and slippery. We were stuck. Out of the blue a strong set of arms enveloped my shoulders and helped me push the wheelchair. It’s these moments that live forever.

Christopher Reeve named his first book “Still Me”. He was still the same person inside, regardless of his physical condition and appearance. He was still the same person, yet even better in many ways. As was Francois, he most likely developed a bucket load of patience, a deeper level of understanding, and an enhanced emotional intelligence* after his accident. Chris used his fortune and misfortune to encourage researchers to find cures and a better quality of life for paralysis victims. Chris’ work and legacy is paying off. Recently a paralysed victim of a car accident, Rob Summers, has been able to move again through ground-breaking electrical nerve stimulation. Although still early days, it pays homage to the title of Christopher Reeve’s second book, “Nothing is Impossible”

Jessica