Having an unpredictable disease like multiple sclerosis (MS) helps me separate out and concentrate on the things in life that are really important to me. I understand the disease is unpredictable and, at any moment, I could be dealing with a completely new physical or cognitive symptom. I also appreciate how lucky I am to have been diagnosed at a time when the advances in treatment options have been growing by one or two a year. We now have 13 medications to slow down the disease’s progression. Although I worry less about my MS now than I did when I was first diagnosed, I still try to make every day count. Chronic illness or not, life reminds us of how little control we have over the future and teaches us to cherish each moment we are alive. The world as we know it can change forever in a nanosecond.
Although I am always traveling across the country from speaking gig to speaking gig, it had been a while since my wife and I had a real vacation. In fact ten years had passed since we spent a full week together away from home. In 2006, Elin and I took a two-wheeled trip to Nova Scotia, Canada, for our honeymoon. We had an awesome time, and we always talked about returning someday.
We finally did it! We blocked off ten days in August, and it didn’t take long for us to get excited about our route. The first day we rode 400 miles to Saint John,
New Brunswick, and the next morning we took a ferry across the Bay of Fundy to Digby, Nova Scotia. Our anniversary trip had to stop in the beautiful port of Pictou, where we had an amazing meal and witnessed bald eagles and an insane sunrise.
Baddeck and Meat Cove were also on our short list of places we wanted to revisit. The Cabot Trail traces the coastline around Cape Breton Island and has incredible quiet views of the Atlantic. We rode miles and miles of undeveloped rural roads and visited the Buddhist monks at Gampo Abbey.
Our trip also had a second purpose. My wife had been researching her ancestry, and we planned the route around some libraries and courthouses, looking for information about her great and great-great grandparents. On the second day of our trip, we actually found information leading us to her ancestors’ grave site. It was kind of like a treasure hunt, but without the digging, of course!
We also decided to visit Nova Scotia because we wanted to stay close to home. My dad was in the midst of a declining struggle with cancer, and we suspected his days were numbered. My parents live in Rhode Island, and I had visited my dad the day before we left for Canada, riding 100 miles to his house with a shower bench recommended by his occupational therapist, strapped across my bike. I stayed for a few hours, hooked up a shower wand, and held my dad’s hand while he struggled with his oxygen tubes yet was still filled with hope and a strong will to live. It was hard seeing him so weak and worn out.
My mom, who had been caring for him for nine months had ignored her own health and was now in severe pain from a ruptured disc in her back. It was so hard to believe just a year earlier they were both in reasonably good health. I was reminded of how quickly life’s circumstances can change and how important it is not to waste a single moment. Before I left, I kissed my father on his forehead, told him how much I loved him and how proud I was to be his son. It was the last time I would see my dad.
Elin and I got the call on the sixth night of our trip, after riding all day. My dad had been back to the hospital a few days earlier, having had trouble breathing again. His lungs were filled with fluid, and they attempted to drain them that afternoon. As my mom put it, “All hell broke loose,” as they were doing the procedure. They had to intubate him as his lungs had stopped working on their own, followed by other organs.
When my dad first got sick, he asked his doctors not to tell him how bad his cancer was but just to try everything they could to save him. We were told for the first time in nine months that he had stage four lung cancer, and it was time to say good-bye. The doctors had done all they could. My entire family—five brothers and sisters, their spouses and kids—were all there with my mom and didn’t want to take him off life support without me there. I knew it would be an entire day before I could make it, and I did not want to prolong his suffering or the entire family’s, so I told them not to wait for me. It would be selfish of me, and I explained I had said good-bye just days earlier.
“I’m ok with it and besides,” I said, “Dad already told me I was his favorite.”
Although we cut our trip a couple of days short by riding 850 miles straight home the following day to be with family, our vacation was awesome. We really enjoyed spending time together and vowed to take a real vacation together every single year no matter what. You don’t need to be diagnosed with an incurable, progressive disease to realize the cycle of life continues speeding by and tomorrows are not going be there forever. Try to take time out of each day to love and to live.
In memory of Deacon Robert W. Pelland May 9, 1940 August 5, 2016