Sixteen years ago, Mark Taylor, now 47, was diagnosed with a degenerative disease called Neuro Sarcoidosis, which caused him to lose his eyesight, the use of both of his legs, and the strength in his right arm. This neurological disease is an inflammatory disease that affects the central nervous system, and in rare cases like Mark’s, affects the brain and spinal cord. While he has since regained some mobility, despite all the obstacles Mark faces daily, he swam in the 2019 Auckland Harbour Crossing on Saturday 6 April, as a fundraising event for neurological research.
“It would be great to assist in the learning of neurological diseases and hopefully to prevent others from suffering disabilities,” says Mark, on his Give-A-Little page. Mark raised over $100,000 for the advancement of neurological research, which has been donated to the Neurological Foundation. Mark’s original goal was to raise $100,000 before the swim in April 2019, but surpassed that goal and raised a total of $128,332.
In February of 2003, at the age of 29, Mark noticed his first symptom of Neuro Sarcoidosis while chopping wood with his brother. He went to rub sweat out of his right eye and noticed he couldn’t see out of his left. He waited until the following morning to see if it would clear up but unfortunately, it didn’t, instead, the pain he had been feeling for months behind his eyes had got worse.
After being sent to Auckland Hospital and running through a series of tests, the consultants diagnosed him with optic neuritis, swelling of the optic nerve which is a common symptom in multiple sclerosis. Within 8 months of being diagnosed with optic neuritis, Mark had suffered 8 more attacks like the one in February, and in October of that year, he completely lost the sight in his left eye. His health started to deteriorate more after that; three years after he lost the sight in his left eye, he lost sight in his right; then three years later, at the age of 35, he became completely paralyzed and was admitted to a rehabilitation facility where he needed to learn to walk again. It wasn’t until six years after his initial visit to the Auckland Hospital that Mark was officially diagnosed with a rare form of Neuro Sarcoidosis that affects 1 in 80 million people that have the disease.
Following the challenge he set himself to not leave the hospital in a wheelchair, Mark and his family continued to set him goals which would challenge him, and not allow his condition to win. For Mark the ‘Swim the Bridge’ event was more than just a personal challenge, it is the chance to support the Foundation that funded the research into the medication that is currently allowing him to complete this challenge. Mark says when he was first diagnosed, "the medication [he] is currently on wasn’t even thought of yet" and looking back, he shares, "without the medication, my story would be a very different one than the one we see today".
When asked how this challenge came about, he told us of how he liked to give himself challenges to keep active, such as his first challenge of not leaving the hospital in a wheelchair, which he accomplished. After completing challenge after challenge, he decided that swimming would be the next challenge. He wasn’t a very strong swimmer to begin with, and he had never swum more than 400 metres in his life, plus now with his condition, he had a few new obstacles to overcome. But it wasn’t until his place of employment, Dempsey Wood, got hold of this news that it became a swim for a cause. Mark shared with us that during a work Christmas BBQ in 2018, it was announced to the world, he was doing the Harbour Crossing swim. That is when he decided it might as well be for something worthwhile, and the Neurological Foundation was a natural fit.
Mark had been preparing for this swim since the beginning of 2018. “When I first hopped into the pool, the first thing I noticed was the water was over my head. I couldn’t tread water anymore and developed a fear of drowning.” But, after a couple weeks of training, Mark gained more confidence, and the initial fear of drowning disappeared. After that, he went from being able to swim 400 metres to 3 kilometres in 10 weeks and decided he was ready for his first ocean swim.
In April 2018, Mark started training in the ocean, which again surprised him with a few complications. He started out in just his swim trunks, which provided little support where the waves were concerned, and he couldn’t get his bearings. With the help of a wet suit though, he was able to get the proper floatation he needed to bob up and down and tread water easier. His final ocean swim totaled 2.6 kilometres of continuous swimming, and his confidence soared. He knew he could now complete the Harbour ‘Swim the Bridge'.
Surprisingly, the one thing Mark found most daunting about the swim is not the fact he cannot see or the fact he is partially paralyzed, but that it is so isolating. “There is so much noise [out in the ocean] that you lose your hearing” Mark mentions, which is completely isolating to him as he relies heavily on his hearing due to his blindness. But, this doesn’t deter him from completing the swim. Along with the help of two support swimmers, his brother-in-law and his eldest daughter, Mark was determined to complete this challenge he had given himself.
The ‘Swim the Bridge’ event will be the first time ever people can swim under the iconic Auckland Harbour Bridge. “In addition to running and cycling over ‘the coat hanger’ at other major recreational sporting events, swimmers will be able to get a different view of the bridge, from the water”, reports New Zealand Ocean Swims Series. Two distances are offered for the swim: the 1 km that starts from Northcote Point, and the 2 km double-crossing distance starting at the city side at Harbour Bridge Park.
One in five New Zealanders are affected by neurological disorders in their lifetimes, and the money raised assists world-class brain research into these disorders. It is only through research that better treatments will become available to doctors and healthcare professionals to benefit people and families like Mark’s.