For 33 years Ian Spaa has defied the odds, pursuing his passion for martial arts despite his health complications.
Diagnosed with tuberous sclerosis (TS) at the age of five, the 38-year-old has managed to complete a masters degree at Trinity Western University, become a self defence instructor at Trinity Western and open his own studio, , in Walnut Grove.
TS is a genetic disorder that can cause tumours to form in all organs of the body including the brain, heart, kidneys, lungs, eyes and skin. It can also cause seizures, physical disabilities and kidney failure.
Spaa has maintained relatively good health his whole life, until the past few years. Now his TS has started to catch up to him.
It began when Spaa was in Kindergarten and his teacher noticed him dragging his leg. He was tested for a number of disorders including muscular dystrophy, and was eventually diagnosed with TS. Throughout his childhood he went for regular check ups at B.C. Children鈥檚 Hospital and was never confronted with any serious health concerns. But once he became an adult and could no longer attend Children鈥檚 Hospital, he stopped following up with his doctors on a regular basis. This is where he went wrong, he said.
It wasn鈥檛 until 2005 when Spaa鈥檚 health began to decline.
鈥淚 started getting terrific pain in my right side. And having spent a long time in martial arts I started going through the list, is it this? Did I hurt myself? Was it something I ate? It was a sporadic pain at first but through the year it became every day. Just this pounding, pounding pain.鈥�
Spaa found out he had two tumours, one nearly nine centimeters long on his right kidney, and another more than four centimeters long on his left. He also had a kidney stone on his left side. Luckily, both were benign and not cancerous, something Spaa says is common among TS patients.
In January of 2006 he had his right kidney removed, leaving a 14 inch scar on his side.
Within six weeks he was already back teaching martial arts again.
鈥淥ther then a few bouts of being sick and my surgery I really haven鈥檛 stopped. It鈥檚 been 18 and a half years of doing martial arts,鈥� Spaa said.
He first discovered his love for martial arts from a friend at university and even met his wife (who has a black belt) through the sport.
鈥淭he running joke around here is that we all enjoy the carnage,鈥� Spaa joked.
鈥淚 get a real charge out of it, personally. It鈥檚 been very, very difficult but all the rewards greatly outweigh the challenges. I get paid to do martial arts. That鈥檚 one of the coolest things around. People pay me to beat them up. I get put in a position of trust and it鈥檚 a great honour to be in that position. There鈥檚 something unique and special about this. We as instructors get to help people change their own lives.鈥�
But in the past few months Spaa has hit another road block. His health, once again, has gone back into decline.
In September he had pancreatitis and spent five days in hospital. It has been a downhill spiral since then.
鈥淎 week or two after I left the hospital I started getting abdominal pain again and was wondering if it was the pancreatitis. It was very painful,鈥� he said.
An ultrasound determined Spaa had a new four centimeter cyst on his remaining kidney, adding to the four cysts already existing. This wasn鈥檛 there in September. A few days later a CAT scan found that his tumour had grown from 3.6 centimeters in 2009 to 5.4 centimeters.
鈥淣eedless to say this has turned my world upside down. Now that I鈥檓 having trouble on my left side all those memories from the last surgery come floating back, and the emotions with them,鈥� Spaa said.
He now has to wait until January to find out the next step. The best case scenario, surgeons will be able to operate and slice off the tumour. The worst case scenario, Spaa will have to go on dialysis and have a kidney transplant.
鈥淚 can hardly function. I鈥檓 sitting here and I am in pain. I鈥檝e felt it as high as my rib down to my hip in different places. What can I say? It sucks,鈥� he said.
鈥淚t鈥檚 pretty much hard to do anything right now. I鈥檓 spending all my time on the couch.
鈥淭he good days are OK. The bad days are terrible.鈥�
Because of his declining health, he is now forced to give up what he loves most.
鈥淐learly my career as a martial arts instructor is over,鈥� Spaa said.
鈥淭he way I teach is part of my problem because I don鈥檛 just stand there, I go in there and get involved with people. I鈥檒l punch and kick with them, I鈥檒l drop with them so I can see where they鈥檙e at. And that鈥檚 not a great way to be taking care of yourself when just sitting on a chair is difficult.
鈥淚鈥檓 not stopping because I want to. I鈥檓 stopping because my body is junk.鈥�
Uncertain where his future lies, Spaa has also just given his notice at Trinity Western University. He has been teaching self defence classes there since 1999.
鈥淲hen I first starting telling people that I was going to have to stop, people were upset. It鈥檚 built into the job that you develop close personal relationships with people. When you tell people you see them practically burst into tears in front of you. That鈥檚 difficult. You have to bite your lip for that. And especially after so longto have something taken away like that.
鈥淏ut as an instructor, I try to remind myself of all the lessons I鈥檓 telling my students. Be honest, it鈥檚 going to suck. No one says you shouldn鈥檛 accept that. But at the same time, you can鈥檛 sit there and wallow in grief.鈥�
Having a tuberous sclerosis clinic for adults would make a huge difference, Spaa says. One was recently opened at Children鈥檚 Hospital but it is only for minors.
He says there is a disconnect between getting care as a child versus getting care as an adult.
鈥淚t鈥檚 a challenge. You have the problem where as an adult with all this stuff going on, there really isn鈥檛 a one-stop shop to go to. So I get all the peripheral stuff checked. I have a general practitioner, a urologist, anephrologist, a neurosurgeon and a neurologist. It makes it difficult because everything is separate.鈥�
Spaa says one of the most helpful things for him has been networking with other TS patients through Facebook. He has connected with a family in Cloverdale, Newfoundland, Ontario, Quebec, England and France.
鈥淚鈥檝e come across some amazing people through martial arts, through student life and through Facebook that have blown me away and a lot of people are blown away with my story,鈥� he said.
He also organized a Board Break-a-Thon at Shihan Martial Arts in November, raising $900 for Tuberous Sclerosis Canada. He hopes one day he will be able to host a similar event again.
鈥淚 am very blessed in my life. If I die tomorrow I will die a happy man. I don鈥檛 want to of course, its not a death wish. But it is about contentment,鈥� Spaa said.
鈥淚 know the possibility of what I have and what I鈥檝e gone through already.鈥�
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