Acceptance doesn’t mean resignation; it means understanding that something is what it is and that there’s got to be a way through it.
The brightness of 2015, rung in that New Year’s Eve dancing with Angela, actually began because of a conversation I had in the summer of 2014. Tom and I went to visit Mom and Dad’s neighbours, a couple who live at Rose Lake. The wife, who is my age, had just been diagnosed with multiple sclerosis and the couple were trying to figure out how to deal with their new situation. Tom and I talked about the realities of living with MS from our point of view, as patient and caretaker, and about different coping strategies. They told us about her visits to naturopaths and her desire to try a strict eating plan. She had in mind a particular clean diet, a healthy diet, a diet to beat MS. Like so many of us, I thought, she is in denial at the start of this journey. She’ll soon learn that she can’t beat MS. No one can.
“So what can you eat?”I asked politely.
“Kale and water.” They grinned at us. We all laughed. I despise green vegetables and the little I knew of kale: it was green. Aside from saskatoon berries, I also dislike most fruit and am really a meat and dairy eater with lots of grains thrown in. My German background and natural inclinations lead me to eat breads, cakes and cookies, with butter and ice cream. That clean, healthy diet we ate at Sanoviv—the strictly no-sugar and restricted carbohydrates diet—had been the least pleasant part of that trip for me.
About a month after our visit to Rose Lake, I got a link to a YouTube video from this couple in a friendly email. The link was to a TedX talk called “Minding Your Mitochondria.” The presenter was Dr. Terry Wahls. Out of curiosity, I watched the video. Dr. Wahls claimed to have cured herself of progressive multiple sclerosis by changing her diet. She had gotten out of her own wheelchair and back on her bicycle in the space of a year, simply by eating the nutrients her body needed to heal itself and by doing exercises as she healed. She extolled the virtues of vegetables, fruits, seaweed and fermented foods. My first thought was, Yuck! There were copious amounts of kale involved in this diet. I wished her well, but I remained deeply skeptical. All the doctors I had seen over the years, including neurologists, had repeatedly told me that there is no cure for MS. There is no cure. MS is a progressive disease and it only gets worse with time.
That summer I chose to ignore the hope held out in that unappealing diet and, instead, resigned myself that MS is a progressive disease and I could not get any more relief from it. I was simply tired and I now wonder if I had actually stopped fighting. Fatigue and depression combined made it feel too hard for me to keep smiling. I was in a wheelchair, I was unhappy, and I was tremendously tired. Fear was a constant companion of mine, too. Some of my friends with MS were a bit more advanced with the disease than I was and I watched their trials and tribulations with trepidation. One of my friends suffered random seizures and was afraid to go on the strong medication that may or may not have helped her due to its severe sideeffects. Another friend suffered from feet and ankles being so swollen she could no longer wear shoes.
As for me, I was started to notice my mind wandering off without me. This was another MS-related symptom and there is a term for it: brain fog. I caught Tom giving me exasperated glances as he patiently explained a concept to me. I knew from his expression that he had explained it to me before, maybe even as recently as the day before. There is a bright side to this, I tried to joke to myself: I can reread a favourite book or watch a favourite movie and it’s like the first time I read the story or saw the film. Everything is new again.
Nevertheless, desperate to find a boost from somewhere, anywhere, I called the Mental Health Services people in Williams Lake and two intake workers came out to assess me. Shortly thereafter, I got an appointment with a mental health counsellor. Talking with her didn’t help. It wasn’t the answer—not for me, anyway. I knew deep down I would have to find my happiness in other ways: maybe in my painting or writing or in quiet moments with Tom; or even in passing conversations with my children, who make me so proud.
By the end of my bout with the flu that October, I had decided to give this diet thing a try. Being unable to move my legs scared me enough to snap me out of my deep lethargy. I rolled myself over to my computer and searched for Terry Wahls on YouTube and watched her video again. Then I went to Google. Dr. Wahls had now written a book and it was due to be released shortly. I called the bookstore in Williams Lake and ordered a copy.
On New Year’s Eve, I danced with Angela and remembered how much joy I could still derive from my body. And on January 1, 2015, I read my copy of Dr. Wahls’ book and I committed to the new diet and exercise protocol—kale and all. It was tough. God, it was tough. I could eat from basically four food groups: vegetables, meat, fruit and nuts. My German upbringing full of grains and my sweet tooth (candies, chocolates, sugar) rebelled and I spent the first four days on the toilet as my bladder wouldn’t stop emptying itself. I learned later that that’s what happens when you are “de-toxing.”
In her video, Terry Wahls challenged people to try the diet for 100 days and see how they feel. I started counting days—days until I could eat bread and chocolate and get out of the bathroom. Plus, I felt lousy: I ached all over and was tired. I took the Medical Symptoms Questionnaire (MSQ) in the Wahls protocol book and scored a whopping 125 points. A normal, healthy person apparently scores about 10, or less. I was one sick person.
Then, things changed. After about the first week I noticed I had incrementally more energy and the world looked a little brighter. My MSQ score dropped by twenty points. The chronic, dull pain in my joints was gone. I decided I could hang in there and stay with the diet, at least for another week. And, best of all, I was finally off the toilet and out of the bathroom. It went like this for me, week after week, with small positive changes brightening my world. After about five weeks, I decided to try using my walker again and I got out of my wheelchair. I stopped napping throughout the day and took an interest in the world outside the house. Tom and I even talked about possibly taking a month-long holiday in May, in Australia! I stopped counting diet days and started looking forward to the future.
Before I knew it, it was May, and Tom and I were heading to Australia! I had been on the diet for over four months and it no longer seemed like a chore, especially because the benefits were so obvious. Whether it was the diet, or the return of my fighting spirit that made me feel better emotionally, I don’t really know. I just know my compulsion to fight has proved to make me happy, in itself, in the past.
We went to Australia with my walker and we toured the east coast for three weeks in a rented caravan or motor home. Then we flew to Perth and visited friends for a week. We ate a lot of fresh fruit and vegetables and I continued to avoid gluten, dairy and sugary products. My spirits improved even more and my eyesight even sharpened. Life suddenly looked pretty good again.
Australia is a vast and diverse country. When we landed in Sydney, we immediately headed south along the coast. I was jubilant that the fifteen-hour-long flight hadn’t sapped my energy as it would have, pre-diet. I was fully awake and aware of the ocean rolling in on the beach in our first campground south of Sydney and I loved the friendly, heavily accented Aussie voices coming from other caravans. By the time we got to Melbourne, I was even more confident in my improved health. Melbourne is a large and busy city. I was able to spend an entire day with Tom in Melbourne, walking the sidewalks with my walker, riding the buses and admiring the sights. An entire day without a nap would have been unthinkable a few short months ago.
I took hundreds of photos while we were in “Oz,” and filled a thick album with them when we got home. One of my favourites is a photo that Tom took. It shows a slim-faced, bright-eyed woman wearing a captain’s hat as she pilots a paddlewheeler along the Murray River. Yup, that was me! I was fully living the life of a tourist and loving it!
I think the favourite part of Australia for both Tom and me, though, was the outback. We spent about four days driving through rust-red, sandy hills under a piercingly blue sky, along a road that ran straight without a single curve in it for those entire four days. The whole time we watched for kangaroos, rejoicing when we saw one of the energetic creatures bounding away through the grey-green, spiky brush beside the road. We also saw countless wild goats in colours ranging from all-black to pure white, emus that looked like overinflated, feathery beach balls on pogo-stick legs, and sheep. Sheep, sheep and more sheep. It wasn’t until we left the outback and turned north that the sky filled with cockatoos and wild, white parrots. I remember the New England area, inland of Brisbane, as being old-country beautiful and reminding me strongly of Europe with its rolling, bare, green hills, dotted with dark clumps of conifers.
By the time we got to Rockhampton, our most northerly point on the trip, I was posing for a photograph beside the Tropic of Capricorn marker with my cane. It was the first time in two years that I was holding onto just a cane for support.
We flew to Perth and spent a week with Rod and Dorothy O’Dea, new friends we had met on the Mediterranean cruise. Dorothy and Rod toured us around southern Australia and helped to fill my photo album and my mind with pictures of crashing surf, seventy-metre high, shaggy red-barked karri trees and brilliant blue skies. Rod even arranged for us to see an Australian rules football game, knowing that Tom and I enjoy watching that sport. That day in particular, I found myself walking for fifteen minutes with my walker to get to the stadium. This woman did not need a wheelchair anymore! The O’Deas promised to come visit us in their turn in 2016 and we came home from Australia feeling very happy with our grand adventure.
By the time we came home in June, I stopped using the walker when I went to Williams Lake for groceries, relying instead on just my cane. Then I went back to Curves, but this time as a member.
Two months later, that August, my MSQ score was around thirty. I was still using a cane and, unfortunately, leg braces on each leg. Foot drop was still a real threat to me. When I was tired, I still tripped easily and fell so the leg braces were necessary. My bladder was also more active than I would’ve liked and I continued to be very intolerant of heat. Heat intolerance and my addiction to sugar and ice cream made summer a real challenge. I suspect that I didn’t help myself any because I would often give in to the temptation of Dairy Queen Blizzard treats but in my defence, I will say that when you’re feeling better, it’s easy to fall back into old habits. At that point in time I was hoping strongly that my leg braces and cane could join my wheelchair in retirement by the end of the year.
I stuck with that diet, modified slightly to accommodate my taste for sugar. As a result of my inclination for sweets, I think, the great advances I noticed earlier in 2015 slowed but I still loved my new energy and willingness to tackle things. That fall, I started a new company and began offering editing and proofreading services, based on my long experience as a writer and self-editor. My first job, besides helping Ann by proofreading a grant application and some poems, was to ghost-write a book. Also in 2015, I went back to work for the Chamber of Commerce—but this time as a freelancer who writes business profiles for the chamber newsletter. This means I still interview business owners, but I don’t go pale when faced with a flight of rickety stairs and a dubious handrail anymore. Instead, when I’m setting up the interview appointment, I tell the businessman or woman that I am handicapped and I request that the interview location be on the main floor of the business if there is no elevator accessibility to their office. Finally, I have the confidence to know who I am and not to be ashamed to ask for what I need.