Growing up on a farm to a schoolteacher mother and dad who came from a long line of farmers, Romien had no idea just how much life could change, or how quickly. “I led a perfectly normal, happy and healthy life. My brother and I took the school bus to school, and there were many neighbourhood children to play with,” she says. “I remember how we’d sometimes miss the school bus and Mum would race after it to get us to school on time! We had no worries in the world; I don’t even remember anyone ever getting sick in our family.”
After completing high school, Romien went to university and studied human resources management. Then she added a financial management degree to the pot. “I was fortunate and landed management positions at companies at an early age, and finally a high-profile job as head of corporate governance and finance at an international pharmaceutical company,” she remembers. “I loved my job. It was rewarding and stimulating, but it was also very demanding – to such an extent that I sometimes neglected my family due to very long hours at the office. I was happy. I was a successful career woman, and I could never imagine doing anything else.” Not for one minute did she think this could all end in a heartbeat – and that a mere few years later, she would be diagnosed with a rare spinal tumour.
Romien recalls how two years before her diagnosis, her legs started feeling slightly numb with a burning sensation. “I consulted with several general practitioners, as well as specialists, who all told me they could not find anything wrong,” she explains. “Spinal cord tumours are rare and difficult to diagnose. They are less common than brain tumours. Patients may experience symptoms like trouble walking or using their arms and hands, muscle weakness, a general sense of inco-ordination [loss of sense of position in space], numbness, tingling, even paralysis to varying degrees and many more.”
I had a very rare tumour inside my spinal cord, which could eventually leave me paralysed, even if treated
These tumours are usually found strictly by coincidence when scans are done for other medical reasons, also because a doctor will first investigate other potential causes for pain and muscle weakness. Patients have mixed symptoms – all of which can lengthen the diagnosis process. “It was on what I thought would be another perfectly ordinary day that I received the news,” Romien says. “I had a very rare tumour inside my spinal cord, which could eventually leave me paralysed, even if treated. One in a million people worldwide gets diagnosed with an intramedullary spinal cord tumour. If South Africa has a population of 60 million people, it means that only 60 people in South Africa have such a tumour. I was carrying a ticking time bomb, needing urgent, life-threatening, life-changing surgery.”
The prognosis was grim. If left untreated, the tumour would eventually paralyse her from the neck down, but the surgery could also do the same. Sharing the diagnosis with her two daughters, Madelei and Tarene, was almost more devastating than the diagnosis itself for Romien. They had already lost their father at a very young age, and now they would have to deal with the knowledge that the only parent they have left could end up being a paraplegic or a quadriplegic. “My heart broke for them,” she says, “but I made a promise to them after their father died that no matter what, I would walk them down the aisle when they got married one day, and that was the goal that kept me going. A positive attitude and faith go a long way. In the days, weeks and months that were to come, I would learn more about the importance of these attributes than I imagined was possible.”
Romien was initially hospitalised for 106 days after the neurosurgeon performed a laminectomy procedure to remove the tumour. Immediately afterwards, Romien could not feel anything below her upper chest, and had no movement in her legs and
feet. She could move her toes very slightly and was paralysed from the chest down to her feet. “I often touched my legs with my hands to ensure they were still there, that’s when I started to realise that life would never be the same.”
After surgery, Romien had to learn to walk again. For the first four months, the time she spent in hospital, she suffered every textbook complication possible, which hampered her progress. “It certainly was not an easy road to recovery. Today, six years later, I am an incomplete paraplegic. People may think, when they see me, that I have not healed, but then they fail to see the miracle. Within my new limitations, I enjoy a full and independent life. And most important of all, I could, with aid, walk my daughters down the aisle on their wedding days!”
While not physically the same as she was before the surgery, Romien is happy with her new normal. “We always have hope to cling to,” she smiles, “and to me, the realisation that I still have so much to be grateful for and that there are still so many things I can do, and that I can still enjoy life, helped carry me through. How you manage the inevitable determines your destiny and happiness in the days and years to come. I knew immediately this was a journey I had to be on, and that it would be part of me for the rest of my life. I knew my struggles could help others; therefore, I was willing – and in a strange way eager – to go through this. I knew I would be able to tell my story one day, which could become part of someone else’s survival.”
Romien has learnt to appreciate the small things in life and strives to not take anything for granted. “Things could have turned out very differently for me,” she says. “I could have been a quadriplegic, but I am only an incomplete paraplegic. I still have the full use of my arms and there is still so much I can do. And that in itself is a miracle!”
Details: Read Romien’s story in her (free) e-book, Silent Thunder – A Journey of Grace With a Rare Tumour, available to download from www.romienvanzylwait.co.za.
