This past week I have been reflecting back on the last decade. Lots of highs, especially in the early years. And lots of very trying times since 2004. Looking back in time gives rise to mixed feelings. Good memories. Regrets. Joys. Sorrows. And a rude introduction to lyme disease and the profound ways that lives can be changed in the blink of an eye.

The past decade

The year was 2000. I was a Vice-Principal at Woburn Collegiate Institute in the Toronto District School Board. By 2001 I was at Cedarbrae C.I. when, on September 11, 2001, the unthinkable happened. The next morning I led a spontaneous memorial with many students and staff around the flagpole. The Vice-Principal role brought lots of interactions with students (often relating to attendance or discipline issues). Also lots of time and effort organizing and implementing exam schedules, school timetabling, staffing, teacher evaluations, curriculum reviews, school planning, etc… These were very challenging years, but necessary and formative. Lots of good memories.

Kristine and I were busy with two young daughters. Frenetic doesn’t begin to describe our lives at that point! I well remember when Erin first went to school. She was so terrified that she wouldn’t let go of the flagpole and go inside. Now she is 13 and doesn’t tend to cling as much anymore. In fact she loves school (I can almost hear a ‘groan’ in the background). Catherine loved primary school and thrived on reading and other creative endeavours. Some of their early work at school, etc… is still posted on our old family web site. The girls have certainly grown up, and have even adapted as my health and other family circumstances have changed. We are so proud of both of our girls.

The summer of 2003 was a time to remember. I had just been promoted to Principal and was beginning in a new school. Normally, the summer would be consumed with preparations for this monumental responsibility. Kristine, Catherine, Erin and I had made plans to travel around the Maritime provinces, camping in a variety of settings. What a trip!! PEI, New Brunswick, Nova Scotia (especially Cape Breton Island), and Newfoundland were fabulous. Whale watching, boat trips, icebergs, dunes, gorgeous scenery, hiking, …. Lots of memories.

2004 was to be a year that changed our lives completely. Northwestern and Northern Ontario had always held a special allure. A three week trip was to consist primarily of camping, along with a brief hotel stay, and staying at a Bed and Breakfast run by a Cree couple in Moosonee. Our journey took us to Sudbury, Sault Ste. Marie, Lake Superior Provincial Park, Pukaskwa National Park, Sleeping Giant Provincial Park, Thunder Bay, Cochrane, Moosonee and Moose Factory. Two train trips on the Algoma Canyon tour and the Polar Bear Express to Moosonee were very exciting, especially for the girls. Unfortunately, it was at our first campsite just northwest of Sudbury that I had an encounter with ticks. Ticks infected by borrelia burgdorferi, and a variety of other co-infections. The problem is that ticks are incredibly tiny, and Canadians have been lulled into a false sense of complacency through lack of information about the threat of tick-borne illnesses. So I didn’t know I had been bitten, and carried on as if nothing had happened. But noticeable symptoms started to progress, and I even got a huge, puzzling “bruise” on my left foot. By the end of the trip I was a basket case, with significant fatigue, brain fog, severe headache, joint problems, memory problems, etc… And it would get a lot worse before long.

Doctors couldn’t make any sense of my complicated symptoms. And I saw many of them. I was tested for everything under the sun, including MS and ALS. I had to stop working by the end of October, 2004, just as my second year as Secondary School Principal had begun. I got worse and worse, and saw doctor after doctor. Finally, in the fall of 2005 lyme disease was recognized and treatment began. The lyme was so entrenched that high dose antibiotics took a while to really begin to make a dent. By the summer of 2006, I had improved enough that I was even talking about possibly being able to return to work on a limited basis by 2007. But things took a very bad turn, and I became bedridden. My treatment regimen was changed a few times, but each time, my liver became more and more affected. And since the onset of the infection, I had been experiencing severe food, drug and chemical sensitivities. This had a major impact on my diet, ability to tolerate scents and other chemicals such as ink, detergent, etc… This also made it very difficult to tolerate any pharmaceuticals, and even many supplements (and even Vitamin C). As my doctor used to say, “If side effects are rare, David Leggett will be the one to experience them!”

Throughout all of this, Kristine (with some assistance from the girls) was integral in looking after me. She really did take the “for better or for worse” part seriously! The love and support from Kristine, Catherine and Erin have been so important. Kristine had to continue working, to generate income and also to give her an outlet for professional growth and development. In fact, she was promoted to Nursing Practice Leader soon after I became ill, and has thrived in the role. Catherine has gone through Middle School and is now in a secondary school focussing on the arts. Music has played an important role for both girls. Both play the flute – we keep trying to convince them to perform a flute duet at home or at church.

My own health went into a complete tailspin in the late winter/early spring of 2007. As if being bedbound wasn’t enough, the last try on an antibiotic regimen failed and left my liver and my health in a perilous state. Since that very trying time, we have used alternative therapies to begin to stabilize my health and address the lyme disease and co-infections. Without much medical help, I might add, since the majority of medical doctors do not have the expertise and will to deal with lyme patients.

This past year (2009) has been eventful for all of us. Kristine has really grown into her own at the hospital. Erin finished grade 7 and began grade 8. Preparations for applying to high schools began in earnest (with a fair bit of hand-wringing at first). She has really improved on the piano and flute, and is doing well at school. Catherine is in grade 11 and is really enjoying her courses, especially anthropology and sociology, music and dance. Both girls play the flute in their school bands.

I had the opportunity this fall to be interviewed by the CTV W5 current affairs show for a half-hour segment on lyme disease. The hours with the producer and the four hours with Paula Todd on camera took an awful lot out of me. Not to mention the aftermath, as many concerned people contacted me with offers of support, help, advice. Hopefully this show raised the level of awareness of lyme disease in Canada. The picture to the left was taken on Christmas Day, 2009. I can’t participate in the world that everyone else lives in, so everyone comes to me!

The year to come

Goals are a tricky thing for me, since they can usually be accomplished through skill, focus and effort. Hopes and dreams are probably more accurate for me at this point.

My goals involve doing whatever I can to improve my immune system, and to continue addressing the lyme disease and co-infections… Anything else would be gravy 🙂

My hope would be that friends and even family who are uncomfortable with my illness would feel more at ease. And that the nation as a whole would wake up and reach the tipping point, leading to a public and medical discourse that acknowledges tick-borne diseases and their escalation across North America. And…… that I would be able to walk again without fatigue!