“If we believe that tomorrow will be better, we can bear a hardship today.”
Physically, the easing of burdens enabled by the move into our new home in 2013 was much needed by the time that we’d sold the house we raised our children in and moved down just south of 150 Mile House. Spiritually, I was still working on accepting the fact that not only did others still need me but I needed others; however, I was starting to understand how much accepting my need for help came with its own host of anxieties. I depended on Tom a lot. By this time, I had reached my fifties and Tom was pushing sixty. Both of us, not just me, were getting too tired of the ranching life. We were also looking ahead at life as a person living with MS and a caretaker for that person. That gave us a different perspective on things than even those couples simply facing the fact of aging have to deal with. Dealing with my MS really is a two-person job. In any couple in which one spouse struggles with a chronic illness there is an inordinate amount of pressure on the caretaker, not only to take care of the ailing partner but also to take care of himself or herself. That’s because, of course, if the caretaker falls ill or becomes incapacitated, both people are in trouble. I slowly came to realize my husband will not say anything when he is in pain. He doesn’t want to worry me.
Unfortunately, Tom is not invincible. Over the years, Tom has had knee surgery to remove a cartilage that was damaged in early years of playing soccer. His knee is “bone-on-bone” now and I know he’s sore. In 2012 he had shoulder surgery after finally relenting to getting the procedure done. Tom waited until he couldn’t lift his arm over his head anymore before giving in to the need for that surgery. Even then, when I picked him up at the hospital afterwards, his sole concern was for me to make it to my routine appointment at the neurologist’s office later that day. I was reminded, once again, how lucky I am to have married Tom. It takes a special person, I think, to put aside their own agenda and take care of their partner. If I had it in my power to reverse this disease of multiple sclerosis, I would do it for Tom now so he wouldn’t have to worry about taking care of me as we both slowly age. I no longer feel the need to do it for myself as I’m in a comfortable place these days. I’m safe, I’m pain-free and I’m OK. I’m particularly OK since we left our isolated home on the ranch late in 2013.
I felt the change almost instantly. I loved that I was not faced with climbing stairs and the doors were wide enough to accommodate my wheelchair. I loved that our new home was far enough away from Miocene that snow, not uncommon even in April back at the ranch, came two weeks later in the fall and left two weeks earlier in the spring. The decision to move was a lot harder for Tom than it was for me. Moving, for Tom, meant giving up working with his brother and being part of a lifelong partnership. Because of the partnership, leaving the ranch posed a few issues for us, of course, involving family matters, but in my mind the benefits have far outweighed the irritants. Que sera, sera. I’m slowly learning to trust that life will turn out as it should. All in all, moving away from the family ranch and moving into our new house was liberating. It enabled me to start a new phase in my life. I had a suspicion that the stress of life on the ranch was connected to multiple sclerosis flaring up in my life. This could be totally wrong but I have learned over the years to trust my intuitions and suspicions. There is a strong connection for me between stress and MS symptoms. This is why, for example, I have a heck of a time walking properly whenever I go to the hospital or I know people are watching me walk.
I am grateful, however, that our new home is still unmistakably Cariboo. I am tied to this land and I don’t want to leave it, even if I can’t ranch on it anymore. Tom and I first made an offer on the new property south of 150 Mile House when I saw it advertised in the newspaper. We went down and looked at the property, of course, but its location was what sold it to us in our minds. The view is absolutely spectacular. It’s an ocean of grass and small, gentle hills like waves. In the distance towering monster hills surround the city of Williams Lake, which is hidden from our view behind a tall, brown bluff. The sky is an ever-changing painting and our view of it is unimpeded. We have a row of large windows along the west side of the house and the room that is enclosed by those windows is where we spend our days; often simply admiring the view. There is a small draw just beyond the fence that encloses our two hectares. The draw is home to several tall old poplars and aspens and, occasionally, a moose. I suspect that is where the deer who come to visit our new house often hang out.
The two-hectare lot is much smaller than what Tom originally wanted, but it is close enough to Mom and Dad at Rose Lake for me, and close enough to the ranch and the woodlot for Tom, who continues to work the woodlot. Plus, it’s only a fifteen-minute drive to town. This benefit was one I particularly noticed right away. I love our new house’s proximity to the highway. People can drop in at any time, and they do. They are going by and stop in for a visit or a cup of tea. It’s quite wonderful after years of being isolated at the back of the ranch and not seeing a single soul outside of the immediate family to be so in touch with people again. I think I got my fill of being a hermit. Ann laughs at my description of myself these days as a “recovering hermit” and claims she is using the phrase herself.
Building the new house and getting it finished was extremely satisfying. With every sweep of my brush, I was spreading wood stain, whether it be on a log or on a window moulding. The outside of the house logs have two coats of Nano Light Honey stain, followed by a clear coat. I stained the south and east side of the house and Tom stained the north and west side. Inside, the logs have one clear coat and another half coat on the rounded top of the logs. The window and door mouldings are walnut brown Tuscan oil and the door and window frames are stained the Nano Light Honey. Our house is beautiful and I helped build it! That fact gives me such a sense of satisfaction. I love to contribute, to create and build things. That hasn’t changed. MS hasn’t touched my soul or my way of looking at the world. Depression, of course, is a different matter.
Of course Tom did the bulk of the work on the house. He spent over a month alone laying down our tile floor. Together we stained the door and window frames and finally, the well-driller came to drill a well for us. Unfortunately, in his first attempt he drilled a sixty-metre-deep dry hole but we got a good well, eventually. The water here is soft and flat-tasting. Ranch water, both when I was growing up and on the ranch where I raised the kids, was hard enough to walk on but it tasted good. This water is easier on the house pipes and probably our body pipes but I add lemon juice to make it taste like … something.
Life really was much improved in our new home, but it did come—as I said—with new worries, too. Even though I didn’t have to worry about stairs, or fitting my wheelchair through doorframes, I did have to worry about Tom. Although he coped well with his sore knee and his sore shoulder, I was painfully aware that if Tom got seriously injured or ill for any length of time that I would be in trouble, too. This point was really driven home after Thanksgiving in 2013. Tom and I had gone down to Squamish and then Vancouver on yet another farmers’ market and beef delivery trip. We stayed at an uncle’s place in Burnaby on Saturday night and other family members were there too, on their own delivery/market lay-over. It was decreed we must have Thanksgiving dinner and one of the women set about cooking a turkey and the trimmings. I sat in my wheelchair and watched, unable to help in any way at all, simmering in my depression while I listened to the bright chatter of the family around me. I have never, ever, felt so useless. This from the woman who once single-handedly cooked Christmas dinner for twenty-three people!
When we finally got back home, Tom and I both hatched a cold from germs we had picked up at one of the markets along the way. I was able to rest. Tom, however, continued to push and to work, either on the ranch or in the woodlot, until his cold morphed into pneumonia. The pneumonia hit hard and laid him low. He was bedridden and so was I when that blasted cold of mine turned into the flu. There we were, sleeping all day, barely able to eat or sit up long enough to watch a short show on TV. At first I coped with my occasional need to move around the house, specifically to go to the bathroom, by pulling my wheelchair right beside my bed so that I could slide my legs out of bed and land on the wheelchair seat with my bum. Then came the fatal morning that my legs would not move. At all. I had to reach down with my hands, grab my knee and pull and then push one leg out of the bed and then the other leg to be able to fall into my wheelchair.
This is the next stage of multiple sclerosis: being bedridden and unable to move. It had happened to me. I lay on my back in bed and stared an ugly, and no doubt short, future in the face. And as I did that, I remembered the silver rod I used to imagine as a little girl. I imagined a silver rod ran through me and connected the sky over my head with the earth beneath my feet. I could grab onto that rod and lift myself up, whenever I had fallen down.
That miserable late-October day, grey sky bringing so little light to the bedroom where I lay unable to get up, I reached up and grabbed that silver rod and then I pulled myself up, pulled both of my legs around with my hands and pushed them over the edge of the bed, fell into the wheelchair and pushed myself around the house as hard as I could.
I wasn’t giving up, not yet.
The year went on and Tom and I attempted to settle into our new lives at the new house as empty-nesters and watched our kids settle themselves into their adult lives. Ben finally screwed up his courage and applied for the job of his dreams with CN Rail. He’s dreamt of working for a railway since he was seven years old and now he’s a civil engineer; he’s centred in Kamloops, just four hours away. As a mother, it felt, and still feels, so good to see him smiling and happy and confident in his life. He must be over six feet tall now as he looks down on me with amusement, but he’s still thin, angular even. More and more, Ben reminds me of my tall, thin Opa, the one who was called “Turm” or “Tower” in his youth. Sam, too, has settled into life as an electrical engineer in Grande Prairie and seems to be happy. He’s just shorter than Ben and is built slightly broader. He is one busy guy, working and keeping his hobbies alive. Sam still enjoys cooking and baking, gardening, and now he’s added woodworking to his repertoire. Of all the kids, Sam is the one who looks most like me, although he doesn’t like to hear that. Lexie looks a lot like my mom did in her early twenties.
Lexie graduated in 2014 with a double-major in English and anthropology. While she is trying to get her hair back to her natural colour, she’s having a hard time figuring out what that colour is. It seems to have changed to a reddish hue on its own, under the brown dye she covered her original blonde with. She is having the time of her life travelling in Europe and has managed to keep her figure slim by staying very active in sports.
Luckily, Tom has an ability to think and plan ahead, that matches his generous nature. When I was first diagnosed, he decided we had to travel as much as we could while we were still mobile—that is to say, while I could still move. During our first summer at our new home in 2014, we went to the Mediterranean. It was a fabulous cruise. I never, ever really thought I would see Athens and Rome in real life, although I had dreamed about them as a child. Athens spoke to my soul, particularly up at the Parthenon where I thought I recognized statues from the stories I once read. Elegant and gracious, smoothly muscled and incredibly beautiful, they brought my childhood fantasies to life. Andromeda and Cassiopeia in the, well, stone! Rome was not as impressive. It was dirty and very crowded the day we were there as there were two canonizations scheduled for the following day. In both cities, the stone statues watched me impassively as I struggled along with my walker. Old European cities are not built for people who can’t move on foot or bicycle. In the city centres, narrow cobblestone streets wind along between the buildings and the small, sharp cobblestones are a formidable barrier to wheelchairs or walker casters. There are also stairs everywhere! The people, though, make up for it. I had more people offer to assist me and hold doors open for me than I expected. It was like being at home in Williams Lake where people are also inordinately friendly and helpful when they see someone struggling along.
The day we were in Rome I was tired and it was hot. So I sat on my walker bench and Tom pushed me along. On our way back to our bus there was a steep hill and I was going to get off the walker and try to walk, to give Tom a break. However, before we really knew what was happening, five or six fellow bus passengers congregated around us and helped Tom push me up the hill to the bus. They didn’t even pause at the curb. They all simply lifted me and the walker up onto the sidewalk. If I weren’t handicapped, if I could move like a normal person, I would miss these things. That is to say, I wouldn’t realize that people are essentially good and helpful. It makes me think back to when I was strong and able, and it makes me wonder if I helped others who were struggling along. I have to admit, I don’t think I took much notice of disabled people or even people who needed help.
In 2014, I had long since given up sports, but I finally had to relinquish even walking with a walker outside as my sense of balance had really deteriorated and there is no easy way for me to get my wheelchair outside to garden. Gardening, however, was something I really wanted to hang onto. This proved to be a challenge. Deer resistant, drought tolerant, Zone 4 wildflowers that may grow here at the new house are limited to yarrow and coreopsis, which looks like a tall dandelion. In other words, weeds. That’s not exactly a Garden of Eden collection of lovely perennials. I also wanted some plants that smell wonderful, like luscious roses or heavenly lilacs and while they are not weeds in any way, they could be naturalized to look spontaneous. Unfortunately, we’re on a sunny, west-facing slope and the deer are an ever-present threat. I solved the problem with Tom’s help. I filled two large half-barrel oak planters with soil and Tom set them up on our east-facing deck for me with a hose for watering close at hand. I filled those planters with tomatoes and surrounded the tomatoes with bright, sunny orange and yellow nasturtiums. The combination of warm sun, plentiful water and insect-laden air for pollination resulted in a bumper crop of tomatoes and a thick wall of nasturtiums spilling over the edge of each planter. It was a beautiful sight to my artist’s eye. Mom added to the riot of colour on our deck when she brought down a planter filled with purple and white petunias, which I placed under my hummingbird feeder. And finally, I had enough tomatoes to make a tomato cake like Omi and Mom used to make.
Much to my delight, I also realized that I could of course paint flowers—and painted flowers are not threatened by deer in the same way that my garden would be if it weren’t safe on the deck. I was able to indulge my fascination with colour and shape with a different artistic outlet. While I still have the use of my hands, I can create art. I particularly enjoy delicate watercolours although I am starting to dabble in acrylics and oils at Tom’s request. I took a landscape oil painting course at the college in town. It was a one-day, all-inclusive course, and I painted a terrific mountain/lake landscape with a waterfall. Sam absolutely loved it so I gave it to him that following Christmas. One of my favourite little paintings of a group of pansies sold right away in Lillooet. Mike and Norm, who got married in August 2014 and who have the bakery tent beside us at the farmers’ market, bought that painting and five others as gifts for their wedding attendants. It almost makes up for the smell of forbidden and fresh cinnamon buns wafting from their tent across the clear air to tease me in our little booth.
Despite my joy in the new house, our trip to the Mediterranean, and my love of painting, I was finding my deteriorating mobility hard to accept. The walker, and then the wheelchair, really did a number on my self-confidence. In the winter of 2014, after four wonderful years, I finally quit my job at Curves. Perhaps the hardest thing about quitting was knowing full well I may never work again. Now it’s 2017 and I still miss the clients, my boss, and yes, even the trifling pittance of my paycheque. No matter how small it was, it was mine and I earned it. It always made me feel good to deposit it in the bank. Yes, I withdrew most of it as cash right away and yes, I then drove to the gas station and filled the KIA’s tank and thereby spent all that cash, but hey—at least my job didn’t cost us any money and I got some people-contact out of it!
I quit in October because by then the job was causing me a great deal of stress, although I couldn’t pinpoint exactly why it was suddenly causing me stress. I think part of it was I was worried about another Cariboo winter coming and about the issue of getting the wheelchair through the snow to the door, then getting through the door and having to somehow wipe the wheels clean before going in to work. Although it came with sadness, quitting also came with a huge amount of relief. My boss Anne, though, has visited me a couple of times and a couple of times she’s brought her sketchbook—it turns out she’s an artist too and I enjoy her visits. She is more than a boss, she is another friend.
I didn’t quit Bernie, though. Bernie still needs me to be her friend and so the two of us meet for coffee once a week for an hour. Then we go grocery shopping together. Bernie helps me with the grocery cart and I give her something to look forward to because, like me, she needs social contact. Like me, it’s good for her to help and be helped. One of the things that MS has taught me is not just to be needed by others—but to accept the fact that I need others, too.
By this time in 2014 I was in a wheelchair and outings were getting to be fewer and further between, but I made sure, and still do, not to miss my weekly date with Bernie. It’s not as easy to move around, but Tom built a wheelchair lift for my car and I can still drive. The effort was getting almost too great, but Bernie made me try, gave me a reason to try, and for that I was, and still am, grateful. She relies on me for her social time and I, in turn, rely on her for one weekly source of inspiration.
I tell Bernie she is my lucky charm. She’s since glommed onto that and repeats it back to me at times. I swear it’s true though. We meet for coffee once a week in a small coffee shop and Bernie is hard to miss: she’s loud, enthusiastic and often inappropriate. People who sit at tables beside ours are often killing themselves laughing at our conversations.
My fifty-second birthday happened to be on our coffee day and so, as usual, I met Bernie for coffee. It also happened to be a snowy, grey afternoon and the coffee house was packed and full of noise and life. Bernie, being Bernie, let everyone within earshot know that it was my birthday. She bought me coffee. We sat and visited and looked at the newspapers and magazines she brought me, commiserated over my standing in the local hockey pool, et cetera, and all of a sudden a young man wearing a bright yellow turban came up to our table and said, “Did I hear it’s your birthday?”
“Yes, it is.”
“Happy birthday!” He dropped a gift card on the table.
I thanked him and he left. When I picked up the gift card it was for $20 to the Bean Counter, our coffee shop.
“Coffee is on me for the next little while,” I told my Lucky Charm. Ten minutes later another, different, older fellow dressed like Tom usually is, in work shirt and faded, worn jeans, was standing beside our table.
“Buy yourself something nice for Christmas,” he said, pushing a $50 bill into my hand. He left before I could even gather my wits together.
I was not only stunned by these events but shaken. “Bernie, I have to leave. This is freaking me out.”
Lexie’s response to this story when I picked her up from her waitressing job was understandable: “Mom, can I borrow your wheelchair?”
Lexie was being funny but she did give me some cause for reflection. I was now visibly disabled and an obvious target for kindness in my wheelchair. I strongly disliked being pitied, but at the same time, I thought, I was still being useful. I was now in the position of allowing people to give in to their best intentions. In this role, I would just have to put up with all the unasked-for kindness I was being showered with. People are generally kind and decent, I decided and hey—who is more obviously in need of a “lift” but the woman in the wheelchair having coffee with the mentally handicapped friend?
I do need to be lifted up, sometimes. Depression usually settles in with the change to winter weather, and things that I can’t do bother me more than usual, like the fact, for example, that I can no longer go into the woods to cut branches for my Advent wreath. I know I’ve found good substitutes and I know that I have a happy, healthy family to celebrate and that is what’s most important but it is difficult, sometimes, to stay positive. It’s why I’ve taken to deliberately seeking out positive examples.
Paula Moulton and her partner Gary Lyness amazed the judges of the Britain’s Got Talent reality TV show when they auditioned in 2012. As the wheelchair dancing duo, Strictly Wheels, they are the UK’s first and only Latin Wheelchair Dancesport couple and the routine they performed for BGT earned them a live performance spot in the semi-finals. If I’m going to be stuck in this wheelchair, I decided, I at least want to dance in it. I love dancing. In fact, I would like to dance at my children’s weddings. I have hope I will be able to do that. I have always loved to dance. I haven’t forgotten that that’s what first attracted me to Tom. He can dance. Dancing was one thing I was sure I would have to give up with the MS and the wheelchair—but I can still stand up and dance with Tom, sort of, as long as it’s very slow and I have a death-grip on his shoulder and arm so I don’t fall and drag him down with me. Paula Moulton’s wheelchair looks to be the same model wheelchair I have, which is very lightweight and manoeuvrable. One day I might need to convince Tom to give it a try with me. It looks like the guy only needs to watch his feet. You would hate to have some wheelchair casters roll over your toes!
By the winter of 2014, I had felt myself starting to get depressed again. There seemed to be no chance of dancing and I started wondering what exactly I’m here for, besides sitting in a wheelchair and breathing. In order to keep my mind busy and off my troubles, I looked for things to keep it occupied. I began to make lists. Lists of things I accomplished, like one month when I tried to accomplish three things a day:
The woman who once single-handedly hauled over two hundred books out of the Community Club library, swam fifty lengths at the pool, bought and washed three flats of berries, and started a Rumtopf recipe and a new sweater in a single day was now having to make do with watching TV and keeping track of her weight. That would be depressing enough for anyone!
Eckhart Tolle, author of A New Earth, would say that my ego was taking over my being. Just sitting, breathing, being should be enough. But my mind, or ego, isn’t satisfied with that. According to him, ego is tied up closely with thought and one thing I could always do and was always proud of was my ability to think. Nothing that I tried with this mental/emotional work was working—yet. It doesn’t seem possible to think your way out of chronic disease.
What I was really struggling with then was the concept of letting go, giving up. It could be a terrific stress release to just quit fighting. But did I have to resign myself to having MS and to being in a wheelchair in order to reach a state of acceptance? And is acceptance of this disease and my situation crucial to my future? These are questions that I continue to ask to this day. I’ve tried for a long time to find a compromise between accepting my situation and fighting my situation. How do I accept this disease and yet keep hoping for a cure? How do I keep fighting against my situation and at the same time, embrace it? I spent that early winter of 2014 in a dark place, lifted out solely by my painting efforts. Sitting in my wheelchair, looking out at the snow-covered fields through the large windows in our sunroom, I was physically comfortable and spiritually wrecked. I read a lot, thought a lot about my life, and I started to write, again. I have a friend who is in a wheelchair and who does very little in a day. Carol has lost the use of her hands and finally I decided that since I still have my hands, I need to use them. I produced a lot of pastel drawings that winter, learning to blend the pastels into the colours I saw around me, which were admittedly muted in January, and I spent time writing, noting down my thoughts and philosophies. Who knows, I thought, someday the kids might want to read this.
I struggled along and tried my best to make peace with my situation, having no idea at all of the changes that 2015 would bring to my life. Is there not a saying that “It is always darkest before the light”? I vaguely remember reading that somewhere and it does seem to be true. There was a hint that 2015 was going to be a brighter year on New Year’s Eve. Once more, I was dancing. This time it was thanks to Angela.
New Year’s Eve, 2015, we were at a ski club fundraiser and the band was good. I was sitting in my wheelchair, tapping my fingers in time with the beat of the music when Angela got up from the table and said, “Come dance with me.” She walked and I wheeled up to the dance floor and both of us twisted and gyrated in time with the music. I, of course, could only move from the waist up but it still felt great to be moving in time with the beat. Angela didn’t let the fact that her partner was female, let alone in a wheelchair, bother her at all and she seemed to enjoy the dance as much as I did. My recent past had been full of wins, like my painting and the new house, but it also had been full of losses: my job at Curves, my mobility and continuing attacks of depression. That night though, when the music once again took over my heartbeat, I felt something shift. I was ready to take on the new year and whatever it would bring.