On the road to recovery
Bay Roberts native shares his struggles with vasculitis
The Shoreline Heritage Walk in Bay Roberts represents more than just a hike for Dwight Sparkes.
To the Bay Roberts native, it’s a foundation in his recovery. Every step was like laying another brick to his recovery.
“I see it as building a foundation of getting back what I have lost,” said Sparkes. “It’s just another piece in the puzzle of putting it all back to better again.”
In 2014, Sparkes was diagnosed with Granulomatosis with polyangiitis (GPA), previously known as Wegener›s granulomatosis (WG). It’s a form of Vasculitis that inflames blood cells, arteries, veins or capillaries.
As result, the tissues and organs supplied by the affected blood cells do not get enough blood. This can lead to organ and tissue damage, as well as the possibility of death.
It weakened the 46-year-old to the point where getting off the couch was becoming a struggle. It’s why the 1.2 kilometre trail in the east end of Bay Roberts was so important.
For Sparkes, every step was one closer to achieving a sliver of normalcy. Before getting sick, the former Royal Newfoundland Regiment reservist could complete the hike in just over an hour.
His first crack at the hill after his diagnosis with vasculitis ended after 10 minutes. Out of breath by the time he reached the bottom of the path to No Denial Path, Sparkes turned back. It was another step forward. Eventually, as Sparkes got stronger, he kept progressing and a year later he did the complete circuit.
“It’s like when you climb mountains,” he said. “When you climb one, you don’t stop. You keep looking for another mountain to climb.”
He’s found strength in a Facebook group for people around the world affected by vasculitis. It’s therapeutic for him. “When I win, I share it with them and when I lose I share it with them,” said Sparkes. “There’s always someone to bounce it off of.”
When it all changed
Heading into April 2014, Sparkes had an ear infection he couldn’t shake. He’d made a couple of visits to his family doctor, but it didn’t go away.
“That was the disease then. It was attacking my eardrum,” said Sparkes. “Eventually, what happens you start having symptoms similar to a really bad flu.
“It wasn’t until my (doctor) had a hunch that we knew it was vasculitis.”
It baffled doctors at the Health Science Centre in St. John’s. During that time, he lost the sight in his left eye and developed granulomas on his lungs. While his kidneys weren’t originally affected, their function had since dropped to 40 per cent as the disease progressed.
“In June and July, I was depressed. I was in a very black place,” Sparkes said of the affect the disease had on him. “I used to play video games, read and exercise. It takes a toll on your mental well-being. You’re just not in a good place.
“My mindset. I was sick and getting used to the fact that I wouldn’t see again or do the things that I wanted to do. It was that and the disease and the chemo all starting to press in.”
How he was affected
In the months that followed his hospital stay, coping with the diseases put a lot of strain on relationships with his wife and his family.
There were times, although sparingly, when frustrations with the way his drug cocktail was affecting his body led to loud, vocal outbursts. The same happened when people were slow to adjust to the changes in his routine. Sparkes likened it to steroid rage. “Normally, I’m a very passive person,” he said. “Lucky enough, the people around me are very understanding.”
He cut salt and sugar out of his diet and altered what he eats drastically. A man who loved chocolate, pizza and Chinese food suddenly stopped eating those things.
Sparkes stopped drinking and his social life plummeted. It was easier not to put himself in situations where he could be tempted or where he could get sick. With his severely weakened immune system, contracting a bug or an infection could be deadly.
“You have your life one moment and it completely flips,” said Sparkes. “It’s something I hope no one else that I know goes through it.
“I just stayed in the house like house arrest. Then I started walking.”
Getting off the couch
Sparkes can pinpoint the exact moment when he found the iron grip of the disease loosening just a little. It was late in July 2014. “I got up one morning and it’s kind of like it flipped,” said Sparkes. “Something had changed. I just felt better.
“I think it was from that day that I started getting outside.”
Getting outside meant walking. First he went as far as the mail boxes on his street in St. John’s.
Then, going a bit further than that until he was walking like he had before.
Losing oneself in hobbies or activities is one way Sparkes manages his well-being. He’s a devoted viewer of HBO’s Game of Thrones, as well as a slew of other shows.
However, aikido is what really centres him and allows him to escape for a couple of hours.
Sparkes approached the return to the martial art of Aikido was the same as walking — doing a little bit at a time.
Now, he hopes to pick up his black belt in the near future.
His hearing returned and the granulomas cleared from his lungs.
Vasculitis Awareness Month was in May. One of the objectives is to advance public awareness of this rare disease, as well as the progress in treatments and advances in research.
Sparkes hopes his story will help someone struggling with some of the same symptoms. He draws inspiration from Brandon Hudgins, an American middle-distance runner who has three episodes of WG.
“(Brandon’s) non-sweat goals are always to increase the awareness of what we have,” said Sparkes. “I thought it’d be a good idea … to spread the general awareness of the disease. If someone has it, for them to know they’re not alone. There are other people in the province with it.”
Bay Roberts native Dwight Sparkes (left) is shown here during a recent belt test at his Aikido club in St. John’s. Sparkes was diagnosed with a form of vasculitis in the spring of 2014.