I had a hard time finding the light switch, but my foggy eyesight finally helped me navigate the dark room to find it so I could watch what I already knew was happening. I had heard a loud thump from the next room, it was nearly midnight, but more than the sound of a boy falling out of bed, there were shrieks, grunts and the sounds of repetitive knocking.
The week before, my son Gabe, then nine, had been at his dad’s house. He called me and said ‘I think Gabe had a seizure last night.’ ‘He does that,’ I said, ‘it’s not a seizure, he just thrashes when he has a bad dream. It’s a night terror.’ His dad was slightly relieved, but not entirely convinced. Neither, I suppose, was I. When I heard the clamour coming from his room, my mind flashed back to the conversation, and my concerns became fears when I turned on the light and saw Gabe in the throes of a tonic-clonic seizure. The days that followed involved visits to doctors, specialists and to strange new tests in hospitals across Southern Ontario. Leading to a final diagnosis of epilepsy.
You learn a lot of new words, new treatments, new symptoms, new risks and new services when you are thrust into the world of having a child with a special need. In my case, as in the case of many parents of children with epilepsy, one day I was not such a parent, and the next morning I was. The learning curve was a uncomfortably swift incline which seemed insurmountable at the time. As a single parent, struggling with sleepless nights (in those first few months he would have up to six seizures a night), adjusting medications and travelling for tests, I paid a heavy price, both financially and emotionally.
You come to understand this world of epilepsy, and do your best to navigate a vast medical field to drill down and discover what treatments and therapies are available. There is no one to hold your hand, although I was blessed with several doctors along the way who did their best. In the end it comes down to you and your child, and a bottle of medication with six months until your next specialist appointment and the number of your pediatrician on speed dial.
Don’t call an ambulance unless the seizure lasts more than five minutes. Or he isn’t breathing. Or if he hurts himself. Or if he seizes in a pool. Or a bathtub.
You go through the exercise of determining whether or not regular childhood activities are ‘safe.’ Can he take the school bus if he has to walk two blocks to get there? What about riding a bike? Or a horse? Are rollercoasters dangerous? How about flying? If I want him to take swimming or skating will anyone want to coach a child who might have seizure? What if he has one at school? In front of friends? Will he be able to go to sleepovers?
Over time, you learn these things about your child, because in every case, the answers are different. Gabe is fortunate, after the first two years his seizures came only at night, and always with an ‘aura’ that was so significant that he would wake up and cry out before they even started.
With medication, he got down to about five seizures a week.
Then came the Yukon.
I was brave. An adventurer. I was prepared to seize the opportunities of the north for myself and my children. I was not prepared to risk my son’s life to do it.
Eagerly, I scoured the internet looking for information regarding services for people with Epilepsy in Whitehorse. Finding information about the Yukon Health Insurance Program was easy enough. Determining that I would have continuity of coverage was a snap. Learning about the Whitehorse Hospital and their facilities wasn’t difficult. Still, I had so many questions. It’s easy to look at a pamphlet on hospital services or read an article about a new MRI machine, but it’s not easy to determine things like emergency wait times, or specialist availability, or access to corollary services which he might require. Would pharmacies have open access to his medication, for example?
These are questions that a person moving to Southern Ontario doesn’t ask. They assume that their child will have access to the best services in Canada. They trust that these services will be available when their child needs them. However, anyone who has ever had the pleasure of dealing with the health system in Ontario will tell you that this is not precisely the case. Wait lists are endless, emergency rooms are crowded and often services are located far from where you might be living. The stretch from Cambridge to Thornhill is practically all one expansive city from one end to the other, but the average turn around time from our Southern Ontario home to the pediatric neurologist’s office was five to six hours.
All that being said, I had certain comfort about Southern Ontario that I did not have about an isolated, northern community like Whitehorse, and there was little to be found on the world wide web to assuage my misgivings.
Finally, I came across a radio interview with a Yukon jazz artist who had a daughter with epilepsy. The interview was centered around the artist’s experience with the disorder, and a quick entry of the singer’s name into my facebook search engine turned up the beautiful image of the professional vocalist I heard speaking on the CBC. Without much hesitation I sent a desperate message to Fawn Fritzen in the early hours of an Ontario day, and by noon had a simple reply of ‘I’d be happy to speak to you, call me.’
So began a friendship which I have cherished through my first year as the mom of a child with epilepsy in the Yukon Territory. Not only did Fawn provide me with boat-loads of information about life in the territory for a child with a ‘need,’ but shared her story, her experiences and her challenges and successes with me. The information that Fawn provided me became one of the founding factors in my move to the territory.
When I arrived, she was one of the first to greet me, and consistently offered me support through Gabe’s medication changes, through seizures and through my integration into this new place. Through our discussions, we realized that we would be able to leverage our knowledge, skills and experience into an organization that could help other people, either relocating or newly diagnosed in the territory, by providing valuable access to information and services. Within a couple of months, we formed Epilepsy Yukon, of which I am extremely proud.
Upon reflection, having experienced healthcare in both Ontario and the Yukon, I have a striking observation that bears sharing: Ontario isn’t actually in the business of healthcare at all. In fact, if I were to look at the system of care in Ontario and contrast it with what I have experienced so far in the Yukon, I’d say that what Ontario does is actually ‘sick care.’ Sick care is what you access when all other options have been exhausted, when prevention and treatments have broken down. You see specialists when things go badly. You see a doctor when you are sick. You fix yourself rather than keep yourself.
The Yukon has shown me that healthcare includes all of those important components of ‘sick care,’ but also takes on a new approach to the care of its people. My doctor sees Gabe monthly, even if it’s to ask him if he has anything he wants to talk about, my pharmacist calls me when Gabe’s meds are running out to see if they need to place an order in case they run low when he is in need, nurses begin conversations with ‘how is your health’ rather than ‘what is the matter,’ even the schools have been willing to have Gabe speak about his seizures so that students can understand what he needs in that event. Meanwhile, the local media has supported epilepsy education in a significant way, giving Fawn and I a forum to address issues relating to first aid practices.
It turns out that not only is there excellent care available in the Yukon, but it is a place where you feel as though the Minister of Health & Social Services personally knows that your son has epilepsy. I can’t confirm that he does, but his office follows us on Twitter, as does the Minister of Community Services. I could have never imagined living in place where I feel that people are so invested in the other people who live here.
As for Gabe, he went from having five seizures a week to having five seizures in the last 365 days. I have a variety of theories (none of them scientifically proven) about why there was such a remarkable change in his health between our move and its first anniversary (better ‘health’ care, cleaner air, cleaner water, a more active lifestyle, fewer lights, more stable weather), but ultimately I’m just happy that he is doing so well.
The other day, Fawn came by for a visit, and when she left I put on her album. My youngest son, Cohen, came into the living room and said ‘mom, is this Fawn? Is she an artist?’ I told him yes, and he couldn’t contain his surprise. ‘You’re friends with AN ARTIST?’ I said, ‘yes, I am. Thank God for her.’ He said ‘yes, she is the lady that helps people with epilepsy.’ I nodded. ‘She is a really great singer.’ I nodded, again.
Fawn Fritzen is a jazz singer, songwriter, pianist and vaudevillian from Whitehorse Yukon. Her multi-cultural background lets her explore music in English, French and German. Her album Bedroom Voice is available for download on iTunes. Please visit her website www.fawnfritzen.com to find out more.