The Human Experience: Voices of Resilience.

In reading other people's stories, we often find ourselves reflecting on our own journeys. A unique connection forms when we recognize similarities in experiences, accompanied by a profound sense of compassion for the paths that differ. Recently, I had the opportunity to delve into the story of Craig Granger from Dubbo, New South Wales, Australia—a complete stranger I’ve connected with over our shared experience with MS. His candid account resonated with me on many levels, stirring a flood of memories and prompting me to revisit my own experiences. As I read Craig's story for the first time, I couldn’t help but recall the deep dive I took, reflecting on the myriad of symptoms that had haunted me over the years, wondering if they were initial attacks. Craig's journey, marked by his resilience and introspection, illuminates the complexities of living with MS, and I’m grateful to share it with you.

Story 2: HINDSIGHT

Hindsight is a powerful mental tool, especially when the time is right to call on it. For me, it was recalling a particular feeling—or lack thereof—in the soles of my feet.

In October 2015, I participated in a charity bike tour known as the Tour de Oroc, covering 1,200 kilometers over six days in the Western Plains of New South Wales, Australia. It can get extremely hot during this event, with temperatures soaring into the high 30s to low 40s Celsius. As the tour progressed, my body began to protest—cramps, soreness from the saddle, chafing, you name it. It was during the last two days that I noticed numbness in both my feet, accompanied by pins and needles; the left was worse than the right.

Being a typical middle-aged male who rarely got sick and seldom saw a doctor, I self-diagnosed the issue as simply being in the saddle for too long or possibly a pinched nerve. I thought it would rectify itself in due time. It took a good nine months before I noticed any improvement, and I never gave it a second thought during or after the tour.

Fast forward to 2017: I embarked on my first overseas trip—a bike tour with friends who had been to Europe multiple times. This time, they chose Northern Spain, which wasn’t my first choice, but they had never been there before, so I signed up.

It’s a long journey from home to Europe, but we arrived in Madrid and spent a couple of days there, watching the final day of the Vuelta a España before taking a train to Northern Spain to start the tour. The trip and cycling experience were incredible, igniting my travel bug. Once the cycling part concluded, the group parted ways for other adventures, and I went on to Norway to spectate at the Road Cycling World Championships—another amazing experience.

However, by this time, the tingling and numbness in my feet had returned, worsened by a burning sensation that would come and go. I attributed it to riding and the extensive walking I had done while carrying heavy bags. I planned to discuss it with my rheumatologist when I returned home. I also noticed I couldn’t feel light touch on the thigh of my left leg.

Once home, I consulted my rheumatologist, who performed some physical tests and suggested that my symptoms might stem from a combination of travel and riding, given my history with Ankylosing Spondylitis (AS), which I had been treated for over the past 15 years. I accepted this explanation and continued to manage my symptoms, but the issues with my feet never returned to normal. Back to riding at home, I began to notice a lack of muscle burn when riding hard during those first warm-up kilometers. While this was nice, I started to question if it was a bike fit issue, but I ventured down that rabbit hole without finding any solutions.

In mid-2018, I participated in another challenge to raise money for a friend whose daughter had been diagnosed with sarcoma in her leg. This little girl loved butterflies, and I wanted to figure out how I could ride to support her and her family. The committee organizing fundraising events took on that aspect, and I mapped out a challenge: a 300-kilometer circuit designed in the shape of a butterfly, which I aimed to complete as quickly as possible. It was mid-spring, and there was still a chill in the early mornings when I set off at 6:00 AM, finishing in 10 hours and 37 minutes—better than I expected, and I was happy with the outcome.

In the following weeks, I contracted a mild case of shingles around my belly button, causing slight pain and itching. I managed to recover from that, though I experienced some continual sharp pain in the affected area going forward.

Fast forward to 2020: COVID-19 was starting to make headlines, but in the regional area where I lived, there were no cases. While the big cities were locked down and movement was restricted, we were still able to exercise in our local government areas, which for me, was quite large. I was getting excited about the European Classics when, one Saturday in August, the weather was reminiscent of a typical Northern European spring—overcast with scattered showers and wind—all the key elements for a ride like a Belgian.

I woke up early to shower, but the first thing I noticed while walking to the bathroom wasn’t normal. I turned the water on hot first and then put my leg under it to adjust the temperature, but I couldn’t feel the temperature—either cold or hot—against my skin. I thought it was strange but brushed it off. Walking around helped settle my nerves, so I went for a 150+ kilometer ride. I struggled with breathing, power, and general energy but pushed on to the halfway point for a café stop, refueling with warm food and coffee.

After some time, the sun came out, and I noticed the wind would be a tailwind to blow me home. As I set off, I felt better, but not completely back to normal. I attributed the struggle to tougher conditions on the way out.

It wasn’t until the next day that strange things began to happen. Getting out of bed, I struggled to stand and had poor balance; the numbness had increased. After composing myself for a while, I decided not to ride that day and met my cycling group at the café instead. When I arrived, one of the group members asked, “What’s wrong? You’re walking funny.” I replied, “I don’t know. It’s like I’m telling my feet where to go, but they won’t go there. I’ll try to get into my doctor on Monday.”

When Monday came, my walking had worsened, and my employees noticed right away. As a small business owner, my business was my number one priority. I couldn’t see my doctor for two weeks, which is not uncommon in our region, even with a doctor I’ve had for years. So, I spent a week slowly deteriorating, shuffling around like I had cerebral palsy.

As the weekend approached, the local cycling club had an event, and I offered to help out since I wasn’t riding. When I arrived, everyone’s expressions showed shock followed by a barrage of questions.

This led to the realization that it’s not just what you know, but who you know. By Tuesday morning, I received a call from the doctor’s office asking me to come in right away. My doctor took one look at my walking and immediately conducted preliminary neurological tests before contacting the hospital’s neurology department.

Once he relayed his findings, he asked me to go straight to the hospital with a letter for the emergency department. I did, and they saw me fairly quickly, admitting me to a bed in the emergency department while waiting for the neurology team. It wasn’t until late afternoon that they admitted me for a series of never-ending tests: MRI, CT, X-ray, spinal fluid analysis, blood tests, and more. Eventually, based on the results, I was started on a three-day steroid infusion. I spent six days in the hospital, and upon discharge, about four or five medical staff members came to see me, explaining everything thoroughly. While they provided all this information, all I could think about was whether I would be able to ride my bike again—that’s all that mattered to me.

I left the hospital with two potential diagnoses: NMOSD (Neuromyelitis Optica Spectrum Disorder) or MS (Multiple Sclerosis). It wasn’t until specialists from major hospitals reviewed my case, along with blood and spinal fluid results, that I was confirmed to have MS. They found two lesions in my spinal cord (one two vertebrae in length) and a slightly shorter one in the brain stem, along with multiple small lesions in the brain. Essentially, the areas most affected were below the chest, left side, waist, and both legs.

With hindsight, I could trace the initial attacks (as they are known) back to 2015, then again in 2017, and now the significant event in 2020.

I still walk poorly; I can’t run, and I experience a multitude of varying symptoms in both time and severity. I receive a six-month infusion of a drug (Ocrevus) to suppress my immune system. After six months of trying to return to the groove of work as a business owner and light vehicle mechanic, I couldn’t manage it anymore and sold my business at a significantly reduced price for a quick sale.

Fortunately, many years ago, I had set up income protection insurance, which I was able to claim, paying a set percentage of my income based on an average from the years I had it, although it ceases at age 65. My transition to not working has been challenging; family circumstances have shifted, and relationships have been tested.

I quickly became very lonely. The only silver lining was that I could still ride my bike. I struggled to explain my situation to others and wondered if they genuinely wanted to hear it. The old adage of “You’re looking well; you must be feeling better” started to wear me down, especially when I tried to explain and sensed disinterest. So, I stopped trying to share my feelings and simply agreed, keeping all my problems, symptoms, and emotions to myself. This led to negative thoughts and strained relationships; I was not doing well but always put on a brave face.

One friend recognized that something was wrong with me, particularly regarding my mental health. We sat down and discussed many things, clearing up some misunderstandings. They urged me to seek professional help. I did, consulting my GP, who is trained in mental health. He recognized my struggles and started me on antidepressants while

I worked through many issues in my life.

That turned out to be my saving grace. It took a while for everything to settle, but now, my life is starting to head in a positive direction again. I’ve learned to embrace my new normal, accept the parts of life I can’t control, and try not to dwell on what I’ve lost.

I've re-engaged with the local bike community and am training and riding as much as possible. While I'm not participating in any races, sportives, or Gran Fondos, I'm focused on setting personal challenges and goals or simply exploring. I enjoy long, steady rides—like 200k days at an average speed of 20-25 km/h or 8-9 hour days over multiple days. Recently, I completed a 1200k solo, unsupported ride over 7 days, with mostly flat terrain, where I was on the pedals for every kilometre. I plan to continue doing more of this kind of riding throughout the rest of 2024 and beyond.

Reflecting on this journey, I now understand that hindsight can be useful. It teaches us valuable lessons, allowing us to see where we’ve come from and how far we’ve progressed.