MULTIPLE SCLEROSIS – Adventures, Misadventures and Random Thoughts

INTRODUCTION

Yes, Rosemary. It is confirmed—you have Multiple Sclerosis.

I was in the ICU, tears flowing. I was sitting bolt upright, my legs crossed on the bed. The neurologist just informed me of my diagnosis: Multiple Sclerosis. Panic, confusion, my life—past, present and future flashed through my mind.

As I was absorbing this scary news my good friend Susan marched into the room. It occurred to me she had violated ICU regulations, which only permit family members. My eyes were brimming with tears as I spoke of this alarming diagnosis. After giving me an enormous hug, Susan settled across from my bed and asked,

“And what are we going to do about it?”

For me, this was the perfect response I could have. Wiping my eyes, I thought, “Yes, what am I going to do about it? At this moment, I was in total denial. The succession/battery of tests left me drained.

All I could envisage was living in a wheelchair – as I remembered my grandfather many years ago. I remembered my grandmother’s 50 years of supporting him. Such love. This image of my grandfather always remains. I regret not talking more about the impact MS had on their life. At age 21 the physicians gave Grandpa a prognosis of five years survival. He lived until seventy. I remembered his driver who drove Grandpa daily, to his lumber company in London. Sometimes he would send Granny to London on her own for the day, with the realization that she needed some ”alone” time.

Flashing random thoughts. They had a house at Pevensey on England’s south coast. I thought of the outdoor lift allowing Grandpa to access the living room and adjoining beach. This was a fun way for me as well! Strange how random thoughts appear during an unforeseen crisis.

My husband, when our children were two and three years old, abruptly followed his own passage. A single mum, myself, I was born to a new life. A lifestyle unlike my grandparents — without a driver, gardener, or maid. Haphazard thoughts raced through my mind. I had blamed my mounting exhaustion for being a busy mum as well as owning, creating and managing three gift shops. This illness strikes no matter the gender, age or lifestyle. What had happened? Random thoughts swirled in panic. I had work to do and here I was, feeling ill and imprisoned in the ICU.

I wish I could share this with my mother; however, she had passed away a few years ago, as had my father. We weren’t the closest, but a hug and understanding would have been the best medicine. My mother could have reminisced how her mother had coped. Despite her strictness, it would have been comforting to share thoughts, fears, and tears. My sister, two cousins, and I had been silently watching time pass, thinking we had all escaped the questionable MS gene. Not to be. I realized I had not escaped after all. Why me? Such selfish thoughts arose! Why me? What now?

In the meantime…what will the future hold for myself and my children?

How did all this begin?

CHAPTER 1

Diagnosis

“Nodus tollens” is a term which I discovered: the realization that the plot of your life makes little sense to you anymore”

MSers often ask, “How did you find out?” My story follows, which doesn’t make much sense as of May 1991.

I had flown to Toronto to see my children, Scott, and Laura- they were living with their father and to meet a potential wholesaler. I was living in Vancouver and building a wholesale company supplying arts and specialty foods to retailers throughout British Columbia. During that day, I had a tough time walking along the hotel hallway. Inexplicitly, I was not walking on a direct path, but drifting from side to side. I wasn’t feeling great. Fun time having breakfast with Scott and Laura. The highlight being their declaration that they wanted to return to Vancouver. As we chatted, I was silently planning our new home – a return to the three musketeers.

The next day, I met the wholesale director. However, she had to end our meeting sooner than expected to take me to my hotel… I was not feeling well… she gave me the line!

After a week in Vancouver, I made an appointment to see my physiotherapist. Maybe he could help ease this intensifying pain over my left eye. There was no relief. Next idea = see my doctor. This was not my usual way of acting for such a problem. I never went to my GP except for the yearly check-up. What was happening? I’m unable to drive due to pain when turning my head. And I love to drive. I knew I was unwell.

After the doctor’s consultation and his suggestion to forsake my car, I started down the stairs to call a taxi home. But the receptionist came running after me to say that my doctor had made an emergency appointment to consult a neurologist at the local hospital. Confused, I willingly accepted her offer to drive. The nurses awaited my arrival. They guided me straight to a cubicle for prearranged blood pressure, temperature, and blood tests.

Enter the neurologist. He ran through tests, which I later understood were for Multiple Sclerosis. My eyes could not track his fingertip from side to side, nor up and down. My leg shot high while attempting the knee reflex test. I failed the intoxicated ‘heel to toe’ examination and could not fathom how fast I lost my balance. He gently inquired whether MS ran in the family. I told the story of my grandfather.

Because of the latest physio session, the physician ordered a CAT scan. With apprehension, I lay motionless on the operating table. The doctor injected dye into the femoral artery – no problem until the dye hit my head – sudden excruciating pain…short but a shock! The scan showed negative, so the neurologist suggested immediate admittance for further tests. This was more than just a suggestion! They wheeled me to a private room in the ICU. I struggled to keep up with the escalating assessments. I must be sick. What was happening? Medical staff dominated my life.

A procession of trials followed.

First a lumbar puncture. This assessment was not only painful but also was a disaster since the neurologist could not locate the correct site to remove the fluid. He blamed the padded bed, which the nurses had, with great compassion, provided to help my sclerotic back. Not to give in, with determination, he made another try the following day. Nurses removed the soft mattress! I played classical music to relax us all. Regrettably, this second test was unsuccessful: they declared my sclerotic back to be the culprit. Third day – the neurologist requested an ambulance to transport me to UBC Hospital for an MRI. The technician pushed my prostrate body into a long, confining machine where my choice to listen to Beethoven could not drown the constant clanging. Such a racket for such a precise brain scan! My doctor found lesions — Multiple Sclerosis: conclusive, indisputable, and irrefutable.

I did an evoked potential test to validate my diagnosis. I perched at a computer screen to click a modem each time dots and squares flashed in front of me. Took ages, but no pain. And yes, this proved decisive for MS: my neurologist was clear and concise: an ideal way for me to learn of this dreadful, frightening diagnosis. Suspicion had lingered in my mind since that first day in the emergency at Lions Gate Hospital. I did not want to acknowledge the diagnosis of relapsing and remitting Multiple Sclerosis. My mind heard his compassionate words. It should subside after this attack. There may not be new episodes for a while. This is a disease that varies from patient to patient. His words didn’t register. I couldn’t accept what was happening. All I could hear was ‘ MS ‘ screaming inside my head.

As he left, tears streamed into a flood…and in marched Susan.

Chapter 2

Realization. Denial.

I remained in the hospital for ten days. News of my collapse filtered through to family and friends. Because I had no family in Canada, hospital rules allowed four friends into the ICU. Susan had already violated the rules! Regulations recognized three more friends! Such fun and encouragement appeared each day.

Christine, a lifelong friend from schooldays in England, was an occupational therapist. Mindful of my blurred vision, she found music and audiobooks. These distracted me from the long, frightening days.. She brought play dough to support my eye-hand coordination. The brilliant, sunny dough stimulated my creation of a daffodil bud. This survives years afterward, in my great aunt’s special antique pearl embossed box. I had a surprising addiction to strawberries. Jane, a colleague from my retail days, maintained a bowl full each day. Lynda brought coloured pencils, paper and a bucket full of optimism. I hold on to Susan’s goofy card on how to survive in a hospital.

I was fortunate to have such fantastic friends who arrived and took charge. No decisions. Just take it easy and heal. I am an independent spirit — this went against my nature. But this was the best medicine. Just let go, de-stress, and rebuild.

After a few days, I was “upgraded” from the ICU to a small room. I could “receive” more friends and have a phone and a television! But policies proclaimed no fax machine! Business associates became part of the group. Evelyn handled my mail and sales orders, Betty compiled orders at the hospital gift shop. My world drifted. All tests were complete. Time to rest, heal and reflect- that seemed logical as I write this. In reality, I dismissed the diagnosis. I was in absolute denial—merely absorbed music and watched television- rest and heal before I get on with my life? How was it possible to find rest amidst so much to do? I loathed the term ‘rest’ and haven’t changed my mind, not even now.

One magnificent day, my neurologist allowed me to venture into the world- “for one day”. My first chauffeur, Pamela, assisted me to her car and drove me away from my hospital confinement…far away…to where? We found an excellent Panasonic player for Christine’s tapes. After some time, Pamela dropped me off at Susan’s home, where a celebration awaited with my “hospital” friends. I was once again in the world. This was not a hospital lunch! Despite this, I felt remote, isolated, and desolate. I gazed at everyone enjoying themselves. Thoughts swirled as to how life had changed. What had happened? What was I supposed to do?

Lynda arrived to return me to the hospital. Instead, she surprised me by announcing we would look at a house ‘for sale’ in Horseshoe Bay, a village on the ocean, a few miles from Vancouver. During the past ten years, my children and I had been moving around West Vancouver to avoid increasing rent… the goal for my kids to maintain the same friends/same schools. Lynda, a realtor, assisted my descent down the crooked stone steps to a charming duplex. She decided rentals were not beneficial for my new passage. What an exciting escapade this day became! Yes, those random, swirling thoughts persisted. But an option had opened. Home payments no longer escalating for the single mum!

The next morning, the neurologist popped into my room to see how I was faring. Even now, I smile when I recall this. My nonchalant answer was “I purchased a house”. His prompt response was “No more days allowed on the town”. He did not realize my impetuous nature, which had not changed throughout these endless, swirling thoughts. One does not expect to make crucial life choices during a crisis.

That day, I phoned my bank from my hospital bed to organize a mortgage. Although the manager had a sense of humour, he could not process my inquiry unless my ex-husband cosigned. Not an option for me. Lynda was there to give support. She located a broker who consented to a meeting in my room. I still wonder if the broker was aware of my poor eyesight as I surveyed the papers and asked, “Where should I sign”. I could not pinpoint the location for a signature! She showed me the correct line. To my astonishment, success: a contract! Granny had taught me never to give up. This encouragement motivated me to carry on. Never lose faith in yourself.

They released me ten days after that first appointment with my GP. Pamela drove me home via a supermarket where we briefly disregarded MS. To explain, Pamela, being a spiritual healer, needed to know which foods were suitable for my body. Her crystal drifted back and forth, revealing compatibility with my favourite foods. It swung the wrong way over broccoli. No, I exclaimed in dismay. “I enjoy broccoli”. We turned a few heads that day! A prompt visit to an organic store revealed that the crystal enabled me to eat broccoli. In a later book, I can explore a few theories on “diet” for MSers. Any ideas are welcome. Please get in touch with me at rosemary@rohutton.com

Pamela left. I was by myself. For the first time since they diagnosed me.

“Alone”

Why does everyone call me a “gutsy” lady? It terrified me to leave the safe cocoon of the hospital where I had not had to make a single decision: where the nurses fed and watered me, where, each night, they gave me a sleeping pill and understood my nightly crying. It terrified me to be apart from my safety net. How could I express my feelings? I did not want this terrible disease. How can I explain something I don’t understand?

My friends took charge and became my support. Jane supplied strawberries with additional casseroles, while Evelyn coordinated my work. Life continued with long rest periods. I felt worthless. I used to be an energetic single mum and entrepreneur, owning three gift shops and, now growing a wholesale business. What had happened? Life ground to a halt. I faltered over decisions. The neurologist told me I might not experience another attack. I had to cling to this. I had to acknowledge and not ignore facing this disease. Easier said than done.

CHAPTER 3

Disclosures

Now to pause, take stock and move forward into my unexpected life-altering passage. I discovered a sentence written by Maya Angelou.

“Live as you want to live, stop demanding answers, sing your song,”

Sing my song indeed.

Next, inform my family and friends about my changed life. Theoretically, this should not have posed a problem, but it did not turn out well. I was in a fragile, over-sensitive mindset. Everyone had good intentions, but to the free-spirited young lady, hearing “sit down”, “be careful” and “Are you alright” became more and more disheartening. This empathy, as special as it was, magnified this devastating disease. Remarkable to find many had not encountered, much less had any knowledge of Multiple Sclerosis. Explanations had to be provided, which further highlighted my new life. I froze.

A friend broke the ice. During lunch, she declared: “If you don’t explain to people why you are hibernating, then I will tell everyone that you are pregnant!”. My goodness – pretty good at 45…Marie certainly broke the ice! At that point, when necessary, I responded, “I am fine”. I am walking; I am normal. No, I’ll never forget that lunch!

Now with more experience, I announce, “I am healing from MS”. It became a much more optimistic attitude: I ordered those neurons to heal. I took this approach from Misa Hopkins’ book, ‘The Root of All Healing’. Visit her website for constructive positivity/sound healing.

I discovered Lynda had consulted diverse experts on how to ‘handle’ me. When to sympathize or when to motivate? Lynda understood when to sympathize or when to motivate.

I had told my sister from the phone in my hospital room. Sue, a physiotherapist, living in England, thanked me for sharing. Her initial letter provided me with exercises to support muscle strength. This occurred prior to the internet! She informed me that one of her patients had MS and had done food allergy tests. Excluding allergenic foods could promote recovery. I thought of Pamela and her swaying crystal. Sue put my mind at ease by stating medications and professional advice are much better than during our grandfather’s diagnosis. When Sue visited Vancouver in 2016 for my 60th birthday celebration, she wanted to look at my journals, which I had been writing since ‘D’ day. Friends had urged me to record my thoughts, adventures, and misadventures. They did not know that I had collected boxes of journals and diaries since the sixties. She read carefully over the next day and night and declared she had not realized what had transpired during those early days, weeks, months, and years. I lived in Canada while she was in England. In the nineties, communication was difficult. Email, Skype and social media did not exist. Excessive costs minimized international calls: mail took weeks to arrive and short phone calls made it hard for me to express my thoughts and fears – particularly when I couldn’t even understand them. Sue agreed that writing my thoughts, adventures, and misadventures might uplift those facing that initial diagnosis. There is existence after ‘D’ day—this is just a never-ending problematic array of challenges! One cannot succumb. As my grandmother said, ‘never give up’.

An additional disclosure was for my longtime special friend, Peter. We met in the sixties when I was 18 and training to be a medical technician in my hometown of Bristol, England. He and his wife lived in Victoria, a short ferry ride from Vancouver. Peter knew my family: he knew my sister four years my junior: he knew my strict parents: he knew my love of dancing and hiking. Peter knew my life before Multiple Sclerosis. Since he was a physician, he understood.

I shared it with an ex and close friend on his birthday — of all times! We had been staying in touch since our first meeting in Bristol, in 1968. Allan, a Canadian, agreed to become the guarantor for my 1969 immigration to his country. We reminisced about our trip to France and a recent day hike over the Garibaldi mountains, north of Vancouver. A friend – BMS. I later lifted his guarantor status!

Letters and cards trickled through from my Cardiff and Bristol school friends. I have postcards from my cousin John, one of the four cousins living in Sweden. He wrote, “Sorry to hear about the MS. It cannot be much fun”. He recalled memories of Grandpa. John’s father helped Granny with Grandpa’s care and heavy lifting.

As I reflected on this period of disclosures, I recognized one may become isolated in one’s own path. For example, a divorced Bristol girlfriend who was on her own journey with problematic children. In one letter she declared, “Life is a sod, isn’t it? It can be an emotional roller coaster: a surprise or shock at every turn. Another BMS couple confirmed I would prevail since I am a survivor. They had seen my impulsive exploits over the years! Others have their own path to follow—not just myself. I cannot forget this.

My special friends rallied after I left my hospital cocoon: constant laughter, casseroles, and help with my business. I rested, listened to my music, and watched TV. What a life.

June 2nd, a mere month after “D” day, Evelyn invited me to join her on a business trip to Prince George, British Columbia’s northern capital, nearly a thousand miles north of Vancouver. I was thankful to be back on the open road – even as a passenger. No tears this time. Instead, frustration. This trip confirmed the fact that MS was here to stay. I had to become fit to drive once more. It’s time to conquer this feeling of total uselessness. This had persisted since leaving the hospital. I need to be gentle with myself!

I must now sing my song. But how?

CHAPTER 4

Life Restarts

Where to restart? Life had become a terrifying muddle.

“When the future is uncertain, approach it one small step at a time, learning with each move.”

President Lincoln must have written this for those of us who must rewrite their journey! Truly, one step at a time: it was the moment for change. I longed to stop needing support and relying on others. Pace yourself and go one step at a time.

I decided my first step would be to resume driving. My children would return home in September; they would need a chauffeur…ha! -easier said than done! I waited until I grew stronger. The optician declared that optic neuritis caused damage to my left eye. More rest to maintain recovery. The positive side of MS – gain patience = slow may it be! I have to learn…but I like to achieve things – immediately!

Driving required a lot of patience and self-assurance, especially as on my first try, I misjudged an outside item which damaged a side mirror. Panic—I did not drive my little sports car for a few weeks after that episode. Step by step, I regained independence. I avoided taking the tricky left turns. I took a few detours to look for less complicated parking. Grandpa’s driver came to mind. I drove by myself to the showroom. Once aware of the truth, the receptionist would guide me down the long passageway to my office. Karen had noticed me balancing off the walls! I discovered, later, this practice is called wall walking. For the first time, I was without Evelyn. She had been my showroom chauffeur since leaving the hospital. I began to feel myself and I could meet and greet at my office door – by myself.

With such encouraging clients, I planned a few short workday trips. On examining my diary during this stage, I noticed fewer business meetings intermingled with many more health-related appointments. It presented a symptoms record: hot leg tingles, knee buckles, and dizziness, to name but a few. Indeed, different journal data! All the same, I proved to myself that my life could continue in some shape or form. I had to implement extra steps. I had to save energy. I closed my showroom. Expenses surged when I had to employ staff to work my “exhausted” days. I could accomplish a lot over a phone call and make shorter business trips. I focused on selling my current apartment to enable the exciting acquisition of the house in Horseshoe Bay.

June 30, two months after ‘D’ day – moving day. Friends took over. My job to sit, delegate, and enjoy the proceedings. In the afternoon, Susan arrived with her husband…and a plate of jam sandwiches – a touch of England. Jane and David vacuumed. Evelyn sorted furniture. Marie made my bed. Everyone went away.

I was alone.

I was alone with my thoughts, my opera, and complete fatigue. My mind, a jumbled mess, until I eventually fell asleep. It was an amazing day, but incredibly frustrating to watch everyone running around, sorting this and that. Exhaustion limited my ability to lend a hand – I wanted to help. I could do that…I used to be able to do that.

Life transformed over the past two months.

The next day, Canada Day, I wandered to the cove and village shops to survey my new surroundings and to hunt for written information on MS. The latter was not an inspiring project, but I discovered Claude-MSing Around written by Vancouverite John Mythen — my first official book on the subject. I highly recommend it – a volume of cartoons, laughter and, of course, facts. The author transfers his symptoms to a dog named Claude. A lot more enjoyable than rigid medical information.

On the back cover, the author inquires, “Why me?” Mr. Mythen laughs, saying I know the answer to that one. Claude has MS, and he’s given it to me! I came across a favourite cartoon. Claude, while doing that knee-jerk test, sent his neurologist flying. I wish I could do that to mine – how audacious for him to diagnose Multiple Sclerosis! I sat gazing out at the bobbing yachts nestled in front of the towering cliffs. Why was I in this space? I had managed this walk by myself. I was fine. Just a horrible nightmare. Had my journey gone in a happier direction, I would not be here! But here was my peaceful refuge – I would not have moved without this diagnosis!

A week later, a friend came over from Vancouver Island to help fix, sort, and paint my new home. I found beds and desks for Scott and Laura. They now had their own rooms! During that period in Toronto, during those times of disorientation and instability, they had with determination said, “Mum, we want to come home”. These words happily echoed through my mind. I was ready.

In August, I exhibited at the Vancouver and Edmonton trade shows- with invaluable help from Marie and Evelyn. My friends – including the wholesalers – supported me in achieving success. It takes a lot of effort to organize a show, create an appealing display, to smile and sell for a few days-then to dismantle! To reach Edmonton, I used to cram (sometimes including Marie!) my samples, art, gourmet foods, candles, and all in my wee car. My routine: set off at dawn to drive for twelve hours through the Rockies to arrive in time for supper with my Edmonton friends. This summer I took a plane…this summer I slept for a few days after each show.

Did I declare my life had changed? But I did it. Granny was here with me.

CHAPTER 5

My Children

A good rest and preparation for the children’s arrival. We shall not have to move! We have a home!

A phone call three days before the expected September 7th arrival.

Scott and Laura are not coming.

Speechless, sadness, anger, guilt.

How could I take care of them if I hadn’t found the ability to take care of myself? Although infuriated and disheartened, I knew their father loved them and could look after them. Guilt resonated. The shock hit more than the diagnosis. My friends mumbled they were relieved. I was not feeling well. I travelled over to Victoria, where Peter and Judy filled me with love and support. Five months had passed since ‘D’ day.

Scott and Laura came for a visit that Christmas. I met two angry young teenagers. Their father mentioned I had a cold, so no wonder! I found it too complicated to explain. I had to disclose the reality – this was the worst Christmas. And to be honest; it was far worse than the diagnosis. And I did a terrible job of describing this monstrous illness. I remember sitting halfway up the stairs, tears streaming. I was so tired and had no clue how to explain. Multiple Sclerosis is an invisible disease, not a broken bone or a common cold. I recalled my former energy. I remembered the French homework, sports days, concerts, karate, gymnastics, guitar lessons, beachside hamburgers, and hundreds of miles of driving.

After Christmas, my children re-joined their father in Toronto. I hoped, one day we would make peace – and yes, we did. I am so thankful to have such understanding ‘kids’.

It had been a tough year. What now?

Note: just reread the earlier sentence ‘it had been a tough year’. Indeed, it had been much, much more than tough. Except for the sporadic brief special moments, it had been bloody awful and much, much more!! So, what’s next? What am I going to do about it?

CHAPTER 6

Interlude

“Tomorrow is another day.”

This determined outburst came forth from Scarlet O’Hara in Margaret Mitchell’s novel, Gone with the Wind. Tomorrow is another day–in fact, I have discovered this to be true for the rest of my life – I had to sort out the erratic symptoms of Multiple Sclerosis. One never knows what emotions will arise upon awakening each morning.

How to get back on my feet after such a sad Christmas?

I followed a plan of talking to or brief visits to my clients. Over time, I could rebuild my life. I heard of happier days. When did this happen during this mysterious disease? I was tired and scared. I did not want this disease.

My driving improved. Did I feel ready to resume my biannual drives to see my customers who were scattered across British Columbia? I had missed the mountains, forests, and rivers…lakes, deserts, and open highways…isolated, indigenous villages and busy cities…the spring apple blossoms or the glowing autumn colours…the wild Pacific Ocean.

Shall I continue my adventures with potential misadventures along the way?

But more and more doctors to see after the children left. Christmas was here and gone. I have to bluff my way through this. Does denial help or hinder my progress? A question for my readers? Over the past year, I had abandoned my risk-taking, adventurous spirit. I needed to take back my life and independence.

I informed my neurologist that I was about to embark on a six-week business trip! I pledged to take my time and to return via the Inside Passage — a mini cruise to unwind. He knew I was familiar with the vast territory. BCAA insurance was current. He knew Lynda and Jane would stay on standby in case of any misadventure. Land phones only since smartphones did not exist in 1992.

Was I excited?–yes. Was I nervous?- yes. I loved the freedom of my solo drives – but how was ‘the’ now ‘my’ MS going to behave? I now had a companion.

CHAPTER 7

On The Road Again

Scarlett O’Hara carried on with life –tomorrow is another day- I shall also carry on with life! Come what may.

May 1992, my first adventure began. With the addition of my new companion, MS.

I spent the first days again getting up at sunrise. Now I was thankful that I had joined Evelyn. Although I had travelled this route many times, it was different on this occasion. I had to face the MS uncertainties. I decreased my daily driving time and made sure to have ample lunch and snacks stored in the car. I had regained control.

After a few client meetings I reached Prince George. I handled the mountains and even a little snow without fear – okay – some trepidation! On reaching the intersection with Highway 16 – do I now go west towards the Pacific coast or return home?? Go for it… great roads and my faithful car. The automatic/cruise saved my energy, especially along the mountain roads. By setting the required speed limit, I avoided the stress of being stopped at a speed checkpoint. The weather was glorious. Onward — passing rolling hills, farms, and lakes; trucks, buses, campers and other sports cars; visiting old clients and adding new ones. The open road, open roof, and opera echoing through the mountains. Freedom regained.

I approached the receding Hudson’s Bay Glacier near Smithers and documented photos for my climate change records. Photography is a passion. On leaving Smithers, an attractive Alpine town, towering mountains, gushing rivers and indigenous villages became the scene. I made it to Terrace, the site of a monument honouring the Kermode bear, the elusive white spirit bear. It was the starting point of my earlier diverse adventures. This time I had to behave – make a choice. I could: drive northwards along the glaciers to Stewart and the ghost town of Hyder, site of the 20th century gold rush on the Canadian border town with the US: drive northwards to the limits of the volcanic Ediza Park, eerie volcanic lava moonscape: drive south to reunite/collapse/seek refuge with my friend, Joanne, in Kitimat, which sits at the end of a long fiord connected to the Pacific Ocean.

I chose the latter! Our friendship began after I made a cold call to her charming, busy gallery. I looked forward to our visits. Home away from home: at this moment I could take a break/get some rest before continuing my drive to the west coast. Joanne has a deep understanding of her northern locale. She listened to my escapades in Hyder where one could cross to the US without a passport. I had a favourite parking spot where I watched black bears fishing ‘in’ the stream a stone’s throw from my car! Once I hired a guide to explore the craggy mountainous track above the Salmon Glacier – to view the grizzlies. No more distractions, I had done enough this time.

Refreshed, I regathered ‘my companion’ and refilled the snack supply. Now ready for the return drive to Terrace, thence along the stunning winding road, westward, along the Skeena River towards Prince Rupert…sheer cliffs, waterfalls, no traffic lights and freedom. I remembered the rest stops, and I can tell you I appreciate every spot in British Columbia! Urgency is an irritating, maddening, bothersome MS symptom!! Knowing my readers could include more descriptive words.

My companion had behaved. when we made it to the outskirts of Prince Rupert, I drove straight to my regular motel. Over the previous three weeks, we had travelled over fifteen hundred km, had a great time, and so far, without a real misadventure. I have to admit my legs trembled when I carried my case to the room! I sat quietly -long sighs of relief and joy — I congratulated myself. I was rediscovering myself. Now it’s time to eat and sleep!

Prince Rupert is a remote community on the edge of the vast Pacific Ocean: Japan due west and Alaska, a brief trip to the north. This ice-free port bustles with passing trawlers, freighters, cruise ships, ferries and seals. Downtown has always been a favourite of mine, meeting customers and dodging deer while discovering new galleries. Then, peacefully, enjoying a latte in Cow Bay, a historic harbour site. (protein- remember!) One can hop on a quick flight to explore (hike!) the sacred land of the grizzly — another time?

Side note:

Misadventure is in my subtitle: thankfully the following event did not happen during the above venture but has a warning – MS has its agenda – come what may.

On a subsequent trip – an unexpected mishap in Prince Rupert. I was walking across a street holding 3 lattes for one of my customers. Multi-tasking, lost in thought, taking life for granted…one leg collapsed…I lay sprawled across the street-coffees and all! Support came from all directions: a bystander halted the traffic, another notified my clients of the delay, and a kind-hearted lady, with children in tow, lifted me up, bundled me into her van then whisked me off to the nearby hospital emergency.

After a nurse gave me a tetanus shot a physician bonded the bridge of my nose – avoided stitches! My client collected me a few hours later, and then propelled me around his gallery on his office chair—a wonderful way to complete our appointment! Granny said to never give up. I had to convalesce in the motel after this misadventure and thereafter return straight home down the promised Inside Passage – a peaceful way to soothe my bruised ego. Only one client on this trip. Christine flew to Port Hardy to retrieve my car…and myself. What a friend…remember I mentioned friends standing by? I must take extra care and keep in mind I have an unwanted, turbulent companion.This was my last trip.

CHAPTER 8

My Bucket List

A few free days before boarding the ‘promised’ ferry home southwards to Vancouver Island… Dare I risk visiting unfamiliar places? Going to Haida Gwaii, once known as the Queen Charlotte Islands, had always been a dream of mine. This isolated archipelago- Canada’s northern Galapagos, the site of the ancient Haida culture, lies across the treacherous Hecate strait from Prince Rupert. I had a customer, Rose, living in the Haida village of Skidegate. An account established in my Vancouver showroom.

I must count her stock of Vancouver Island floral magnets! So why not? Eight hours via ferry westwards. Part of my character is to be in the present. As a new MSer, this could be an advantage? Multiple Sclerosis is a merciless disease. I will do what I can sooner than later…when would I be so close? My companion would not win… I must be extremely careful.

I booked my passage on the Queen of the North!

Waiting in line at the terminal, with ticket propped on the dashboard, I watched the soaring bald eagles. I admired their freedom as I mused my abrupt, lost, adventurous spirit. No more–I shall take it back! The crew waved me/us forward to board the ship. Sudden stomach churn!

The crew squeezed each car into every possible space. My first challenge was to obey their exact instructions…foot by foot, inch by inch, steadily, with deep breaths…triumphant. Nobody would suspect this was my first time to board such a ship. Now to find my way up to the deck, step by step, up a steep, narrow staircase. More success. The ship’s horn blew; we meandered through the coastal islands, then. turned right. out to sea.

I have to say my stomach churned as this journey had actually begun. No turning back! Calm seas, so I relaxed to enjoy a clam chowder and coffee- confident that my doctors would have approved. After a few hours, the misty isles emerged into view. We sailed down the east coast: deserted beaches framed by dark forests. Yes, a mysterious mist shrouded the islands as we approached the dock at Skidegate Landing. I marvelled at the many, welcoming, soaring bald eagles.

I waited until the trucks disembarked into this strange new land before following the other cars which led the brief route along the coast to Charlotte City. It started out as a sawmill and evolved into a busy fishing village. After searching for locations to stay, I decided on the Premier guesthouse, built in 1910. What a treasure – the oldest hotel on the archipelago.

The stairs creaked as I clambered up to my room. Twenty-five dollars per night sharing a bathroom with one other guest. I peered out of the window – the bay – another island – my car tucked safely below. I slept well that night! The first morning I grabbed my ferry muffin and together with a hotel coffee, drove to a parking area which I had noticed on the way from the ferry. Bearskin Bay and Graham Island spread before me while to my right rose a mountain, the Sleeping Beauty, which traced the outline of a reclining lady. I relaxed with my companion – absorbed the peace.

My first destination would be to visit Rose in Skidegate. The village homes line the bay: salmon hanging/drying on many of the verandas. Opposite, next to the community center, stood the renowned Bill Reid totem pole, an eagle carved on its summit. This was a popular perch for the bald eagles -both facing seaward. I found Rose at her Longhouse gift shop: masks, carvings, paintings, silver, and gold as well as cards and t-shirts. The jet-black anthracite jewelry tempted me. When I asked where to find such an ebony stone, Rose smiled. Her answer was ‘known only by the Haida’.

We sat on a bench in front of her waterfront gallery: relaxing, watching the bald eagles soaring, swooping, and fishing. Rose pointed out the juvenile avian teenagers on the beach, their mottled feathers not yet transformed into those of the distinctive adults. This was the way to do business. I forgot about my companion! I was honoured to share such an enchanting space. She gave me names of other island retailers – more discoveries to make…

On my return to Charlotte City, I ran into Alicia (from Germany) whom I had met on the ferry. She had stumbled over my foot: I could not move it. As it happened a fortunate misadventure. She and her niece wanted to find Gray Bay on the next island. “Let’s go,”, not knowing it was a gravel logging road. The following day, we took the local car ferry over to Moresby Island. A paved road led us to Sandspit, a small fishing village and the main island airport (prop planes only). The trail changed- now gravel chewed up by colossal logging trucks. I discovered the unwritten rule — if one hears one of these monsters in the distance, one must flee to any space off the road, freeze, and let it barrel by. I hesitated before another immense pothole; my hands clenched around the steering wheel. What was I doing? My doctors would not be pleased! My sports car was too low to navigate this road. Alicia blessed my car – she had sensed my internal strife. Bluff had not worked this time.

We continued through the Haida fishing village of Copper Bay, where the indigenous clans have caught and processed salmon in the same way for centuries. We reached Gray Bay – my car, passengers, and I unscathed–phew!! We ‘slid’ down a small hill to gasp at the view of the secluded pebbled cove which lay ahead. My trembling had subsided after Alicia’s blessing. We opened our packed lunch, took photos and enjoyed walking along the beach before retracing our drive to Charlotte City. After I dropped Alicia and her niece at their hotel I returned to my favorite parking spot by the ocean. I had done it! I had fun and ‘almost’ forgot my companion, MS—-almost! Granny had told me never to give up…I had not! She would be proud of her granddaughter. I knew she was with me.

Rose had introduced me to Joy who owned a tourist/gift shop on the outskirts of Charlotte City. I dropped by the next day to share my adventure. Joy saw my car, chuckled, and brought out a hose to rinse off the dust! She was passionate about describing and preserving her cherished islands, and she was accessible 24/7 to tourists, people who lived nearby and me. Joy had included some of my wares in her packed gift shop.

My next venture: visit Delina at her gift shop/bistro, Myles From Nowhere – an appropriate name since Port Clements is a tiny village located halfway up the island – in the middle of nowhere. The drive traced the shoreline and then wound through spruce, hemlock and cedar forests. It passed by St Mary’s Spring, originally named Duncans Well – a watering spot for horses. Each time I passed I would add its water to my car – the legend being one must drink this water to ever return! I did return many times to see my customers and…eventually moved to Charlotte City – but that is another story. Next, I followed a sign pointing down a narrow gravel lane for the best coffee — of course, I had to stop!

On leaving the coast, I came to a sudden halt – a large black bear had the right of way! Then…arrived at Delina’s store which was overflowing with artwork, gourmet foods, cards, and everything else one could imagine – and furthermore also the best coffee! Because of the relative isolation of Haida Gwaii, every retail outlet would cater to the locals’ every need. I was delighted to help Rose, Joy, and Delina add to their collections. I wholesaled everything from international gourmet foods to BC artists!

An enjoyable stop before making the choice to drive northwards to Masset, the only incorporated town in Haida Gwaii. Yes, north. Massett lies on the northern inlet emptying into the Pacific Sea. Within this locale is the original Haida village, Old Masset and New Masset, created by the Canadian Forces during World War II on the edge of the Delkatla grassland flats. With limited time, I just drove around the villages and harbour before strolling about the Delkatla bird sanctuary, a haven for migrating birds. Another of my passions is birding. I must have been exhausted since I dropped my expensive camera — twice.

All was fine except for a dent in the casing. Mini misadventures! I had forgotten my companion! These accidents reminded me. again, to take it easy. Go slow! At this moment I am typing with great concentration as this is the only paragraph to be deleted several times from my computer. Over time, I remembered a story which Rose had told me when I mentioned my camera mishaps. In the past, there was a northern warrior band which fought against her southern gentler one. In a past life, I must have been part of her southern band.

Homeward bound along the well-maintained paved road – the only one which links Charlotte City directly with Masset. I took my time and chanced upon a rest stop which curved above a pebble beach with a spectacular view over the strait – and even searched for shells/rocks! But. this was my first invaluable lesson to stop/take breaks before exhaustion began! Just take photographs! I was becoming weary faster than on my long drive to Prince Rupert. Was having too much fun exploring. Remember, one small step at a time. But I struggled to adapt to my new companion.

A quiet day followed. MS would not raise its ugly head. I found a superb coffee shop, Jags, which overlooked the bay between Queen Charlotte and Skidegate. A perfect space for journaling – what was I doing in the middle of nowhere? — maneuvering vast potholes, clambering over fossilized rocks to see the sacred Balance Rock, which was stranded in the last ice age to wandering over deserted sandy beaches piled with driftwood.

I discovered another ideal spot to park overlooking a protected cove by the Old Museum – one could watch a multitude of seabirds: vibrant coloured harlequin ducks, flocks of scoters, and even cormorants drying their wings on the rocks and a gray whale in search of food amongst the kelp. I had to confess, on one occasion, I forgot to switch off the car lights = battery drained!! Panic hit as I walked out to the ‘main’ road for help. The fellow who stopped pulled out a cable from his truck. With a wave and a smile, he left me with a charged battery. Misadventure solved. Granny was there. Never give up.

On the last day, myself and one other passenger took a four-seater seaplane to the ancient site of Skedans. My companion had forgotten when the pilot helped me onto the plane. He flew low when we spotted a couple of gray whales—we marvelled at their immense size. The view differed from my spot at the museum! Skedans is said to have been two settlements, known as Qoona, Grizzly Bear Town. The bay is now a protected reserve (169 acres) and belongs to the Skidegate band.

The area holds many stories and legends. A raven killer whale spirit dwells under a rock beside this village to guard those at rest. The clans moved to Skidegate in 1893. We explored while the pilot stayed with his plane at the edge of the stony beach. We divided to wander our separate ways, absorbing the peace, enchantment, and mystery. What a grand finale for my first excursion to Haida Gwaii.

CHAPTER 9

Return To Reality

Sadly, I left these haunting islands. I knew I would return since now I had new friends and customers and more to discover! Work awaited. After returning to Prince Rupert, the Queen of the North sailed down the Inside Passage to Port Hardy on the northern tip of Vancouver Island. Promises of rest fulfilled for my doctors – relaxation, photography and journaling as the ship passed snow-capped mountains, waterfalls, lighthouses, occasional pods of dolphins, orcas, scattered fishing boats and barges laden with lumber and goods for delivery to the indigenous villages.

Business completed in Port Hardy, there was some time left before my drive southwards home…can you guess? Re-energized, I decided on another diversion — to take a small ferry to Alert Bay, a tiny island just off the coast from Port Hardy. This is the site of the world’s tallest totem pole, or at least it was in 1992. More photos and a stroll along a wooden pathway through Gator Park’ This was eerie. Not a soul but myself and dead trees poking through swampy marshland. One imagined alligators rising from the depths. Such a contrast from the past week…took my time: lessons learned…snacks.

Of course, another detour on the road – this time to Alice Lake, a lake village tucked in the mountains. En route, I had to make an abrupt stop as a black bear and her cubs ambled across the road. This time I took photos through the window..

I congratulated myself. I had done it – and sent postcards of a Skidegate totem to my doctors, family and friends and to myself. Mine stays on my fridge in celebration of my first long journey with my companion, Multiple Sclerosis. I wrote:

‘MADE IT!’

Not entirely home. I paused at a friend’s cottage halfway down Vancouver Island. On my arrival, I ‘leapt’ out of the car to find that my legs refused to move. Unaware of the situation, Tina had returned to the house while her husband stayed behind to help with my case. At that moment my first real MS shock hit me, causing me to burst into tears. I could not move. After twenty-four hours of sleep, I was once again ‘normal’. Later, we teased Tina for running ahead of us – not realizing the crisis. It was her pressed floral magnets which I had counted at Rose’s shop in Skidegate! When I had recovered, I drove to Nanaimo for the ferry home to Vancouver.

The trip had been free from major symptoms. Being unfamiliar with MS, I was not sure of the difference between symptom/relapse fatigue and regular fatigue. I learned an authentic relapse portrays a new symptom. But how does one distinguish between MS fatigue and normal fatigue? That is the question! This initial time, it was a sheer heavy feeling where my lower limbs refused to move. My first self-confirmation was that MS existed in the neurons – my neurons. No matter how I was feeling, I could not deny this.

My physicians and friends realized I would not give in. I needed to be kept in line!

After a good rest that summer, confidence restored after that scare at Tina’s, I made another two brief trips – the Kootenay mountains during the spectacular autumn colours and to see Peter and Judy for more hugs and support in Victoria.

Life had become an unexpected, unknown challenge.

“NODUS TOLLENS”. Now to make sense of this challenge, to understand and not to be defeated.

What next?

CHAPTER 10

RANDOM THOUGHTS

You are going to make it after all. Live for the day and be happy with what you’ve got.

These are words from the introduction of the Mary Tyler Moore Show. In joy, Mary throws her hat high into the sky.

I must have to add – wait a minute – one step at a time.

The past eighteen months flew through periods of crisis: inconsolable weeping ranged between exultation as each fresh challenge was understood and solved: endless random thoughts of life passed leading to inventing an alternate one.

Progression varies for each person. Diagnosis is a shock, however, a relief for those who know something is inexplicably wrong but cannot explain what or why. “Am I going crazy” while the medical field struggles through the ‘multiple’ symptoms: the exhaustion, the unsteady walk, the heavy limbs, tingling, numbness, the blurred vision and on and on.

Multiple Sclerosis is an invisible disease.

The mind is overwhelmed, let alone able to handle the uncertainties.

Is there a cure?

My daughter stumbled upon a stack of papers behind my son’s sofa. Laura inquired the reason to hear Scott state he had been looking for a cure, but he had found none. There is unceasing research with continuing discoveries. There are new drug combinations which can reduce relapses and decrease symptoms. Scott, there may not be an actual cure, but a solution could be on the horizon. My grandparents would be ecstatic to see such progress.

Is there help?

After calming down from the diagnosis, I reached out to my local MS group. Never shall I forget the first session with the counsellor, Bonnie, who sat silently while I, helplessly, cried to pieces! Could not stop! Besides my embarrassment, this breakdown took me off guard. The sign ‘Multiple Sclerosis’, in large bold letters, which hung over the entrance of the building, triggered this response. Why was I there? I was fine! I had cried before – this was different, and I discovered such a release. Thank you to Bonnie, who welcomed me to the first-timers Victoria group where support, tears and laughter connected us through our misadventures. Thirty years later, I continue my grounding hour.

The MS Society has reams of information, courageous stories and research in print, videos, and online.

I found MyMSTeam – a site where one can let off steam to others – we get it. I feel like that. I am not losing my mind! One’s friends and family can be special support.

What to do?

Good chats with your neurologist on drugs and investigations, with your nutritionist on diet and with your physiotherapist for an exercise routine. The MS Gym, created by Trevor Wicken has encouraging restorative moves. Can look into yoga, tai chi, meditation, and sound medicine – these can relieve stress and move the energy. Ha!—again easier said than done! I can hear your overloaded, whirling thoughts! When exhausted, depressed and discouraged – stop and breathe… deep breaths… find your favourite music — remember tomorrow is another day.

There is journaling – your journal is your ally: a chronicle of your favourite and least favourite events, feelings, blessings, and just stuff. The more one writes, the more one can question and accept the new journey. One can name and date the problems with confirmation of which one has triumphed. “I did that.” “I fixed that.” One can break from monologue to dialogue with emotions such as grief, depression, or just pure joy. Your journal is your friend.

More Thoughts

• Must overcome the feeling of being entirely worthless and useless.
• Must stop, and take deep breaths to break any negativity.
• Must stop, understand, slow down and prioritize that busy life.
• Must not become frustrated when multi-tasking is no longer an option – i.e. be patient (one monumental challenge for myself!)
• Must seek help. remember, these ideas are signs of strength and bravery – not weakness
• Must gather support,-friends, family, groups and…passport

Wow – many, many musts. But it is important to remember…one step at a time.

My grandmother taught me never to give up – she must have known my current challenge. As my series continues, I’d love to include stories, suggestions, and ideas from MSers, and others. A continuation of random thoughts.

I hope the start of my journey can support those with the first diagnosis and progression of this, and any, chronic disease. If only to express – I feel like that.

I understand more. I know I have slowed down but not enough to abandon my passions and yearning for future possibilities. Come rain or shine I shall throw my hat up into the air with joy – but remember. One step at a time.

Meanwhile. Where is my bucket list?

Where is my passport?