Looking Back on Our Last Day of Normal

When I think about Rare Disease Day 2020, it’s with mixed emotions. The day before, I got up at “o’dark-30” to catch an early flight to Toronto. I’d been invited to attend a Rare Disease Day celebration hosted by a pharmaceutical company that I’m partnered with. I was very much looking forward to spending time with them and the patient representatives of other rare diseases they serve, whom I’d gotten to know from previous events.

I was also looking forward to some time in Toronto, which has become my home away from home through my advocacy work over the last few years. Whenever I have the chance to visit, I love to wander the streets with my camera and capture the unique charm of the city, as well as frequent my favorite restaurants and shops. There’s something so satisfying about being alone in a large city and experiencing it on my own terms.

When my flight arrived in the late afternoon, the wind was bitterly cold and it was snowing. Coming from the milder weather of Canada’s west coast, the vast temperature change is always a bit of a shock. After checking into my hotel, I had just enough time to change for dinner with my hosts. We had a wonderful meal and as always, great conversations before calling it a night. Little did I know it would be my last dinner out for quite some time.

The next morning, my alarm went off unbearably early. Jet lag is always my least favorite part of traveling, because due to neuromyelitis optica (NMO), I’m already dealing with soul-crushing fatigue. Crossing time zones makes it even worse. I always try to give myself as much time as possible to get ready, because I need time for my pain medication to kick in.

I made my way over to the pharmaceutical company’s offices where the event was being held. 

Throughout the day, we listened to presentations on rare disease and the impact on peoples’ lives. During one presentation, a physician from Montreal talked about the consequences of long-term steroid treatment, which really hit home for me. At the time, I’d already suffered two significant insufficiency fractures and was hobbling around in a boot cast due to a torn Achilles tendon, all a result of severe osteoporosis from having been on steroids for over a decade. I was so glad to finally hear someone addressing this important issue. 

Additional speakers included a mum whose teenage son lives with atypical hemolytic uremic syndrome, and a gentleman who lives with myasthenia gravis. As I listened to their stories, I thought about how devastating these diseases are and how grateful I was that I wasn’t living with their diagnoses. I’m sure that when others who live with rare diseases hear my story, they’ve thought the exact same thing. It reminded me of the old adage, “If all our troubles were hung on a line, you’d take back yours and I’d take back mine.”

As tough as it is living with NMO, I’ve done so nearly my entire life, so I know how to deal with it, just like they’ve learned to deal with their rare diseases. While ours may be vastly different, there are, in fact, so many commonalities to our experiences as rare disease patients. While I’m sure none of us would ever wish our diseases on anyone, it’s a gift to know we’re not as alone as we sometimes think we are.

A rare treat. (Photo by Lelainia Lloyd)

It’s funny the things I remember about that day, which now seems a lifetime ago. One thing that stands out for me is that one of my hosts very sweetly packed up a box of the leftover cupcakes for me to take home to share with my husband. It was such a kind gesture, and I knew, being the sweet tooth that he is, he would be so happy when he opened that box.

I carefully shepherded the cupcakes through airport security and tucked them safely under my seat for the flight home. Later that evening, we sat drinking tea and enjoying those cupcakes while I told him about my trip.

I wish I had known that that was to be our last day of normal. I don’t think any of us anticipated just what we were in for with the pandemic and subsequent lockdown of our entire country just two weeks later. If we had, I like to think we would have hugged one another just a little bit longer and a little bit tighter, knowing that it would be a long, long time before we’d be able to see one another again. 

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