Living with MS: My Journey and How It Shaped My View on Accessibility

It was just another morning after an ice hockey game in 1999 when I woke up with numbness in my feet. Little did I know this seemingly minor discomfort would be the first step in a life-altering journey with Multiple Sclerosis (MS).

At first, I brushed it off as a pinched nerve, visiting a chiropractor for months. When the numbness persisted, I finally saw my GP, who referred me to a neurologist. An MRI later, I received my diagnosis: Multiple Sclerosis.

In those early days, I hardly gave it a second thought. MS hadn't affected my daily life, and I naively believed it never would. The doctors started me on Rebif, an injection I took three times a week. Life went on, or so I thought.

The Gradual Decline

As years passed, my body began to change. The heat became my enemy. If my internal temperature rose enough to make me sweat, it was as if someone had pulled my energy plug. I'd become dead weight, utterly drained.

A limp crept into my walk, and I started losing function in my right arm - a cruel twist for a right-handed person. Suddenly, simple tasks became herculean efforts. I needed a scooter for longer distances, and my car required adaptation with hand controls for acceleration and braking.

Accepting New Realities

The progression of MS forced me to confront new realities. Driving, once a symbol of independence, became a risk I couldn't take - for my safety and others. I transitioned to a power chair and a van with a ramp. My world was changing, and I had to change with it.

Now, my mom is my caregiver. I use a power lift to get in and out of bed, and I work from my bed to manage edema in my legs. It's a far cry from my hockey-playing days, but I've tried to maintain a positive attitude, focusing on what I can do rather than dwelling on what I've lost.

Personal Life and MS

MS hasn't just affected my physical abilities; it's reshaped my personal life too. My marriage ended in divorce, and dating afterward has been challenging. Travel, once a joy, became complicated by the need for specialized equipment like power lifts and shower chairs.

However, I've recently discovered that these are manageable obstacles. With planning and resources, travel is still possible. It's a reminder that our perceived limitations can often be overcome with the right mindset and support.

The Emotional Toll

Living with MS is an emotional rollercoaster. There are days when I feel frustrated by my dependence on others. I know I should be more appreciative of those who do so much for me, and it's something I'm working on.

But I still have my sense of humor. I'm still quick with a sharp-witted comment when needed. Laughter, I've found, is a powerful medicine.

Lessons Learned

If I could advise someone newly diagnosed with MS, it would be this:

1. Explore all options, both conventional and alternative. What works for one person may only work for one person.

2. Preserve your mobility as long as you can. It's a struggle, but it's worth it.

3. Maintain a positive attitude, but allow yourself to feel frustrated sometimes. It's okay to have bad days.

4. Don't isolate yourself. Even if mobility issues make socializing difficult, find ways to stay connected.

5. Be open to adaptive technologies and lifestyle changes. They can dramatically improve your quality of life.

A New Perspective on Accessibility

Living with MS has wholly transformed my accessibility view. What once seemed like minor inconveniences - a small step, a narrow doorway, a high counter - now represent significant obstacles. I've become acutely aware of how our world is often designed without consideration for those with disabilities.

But I've also seen progress. More businesses and public spaces are embracing universal design principles. Technology is advancing, creating new possibilities for independence. And importantly, conversations about accessibility are becoming more common.

My journey with MS has been challenging, but it's also opened my eyes to the importance of creating a world that's accessible to everyone. It's shown me the resilience of the human spirit and the power of adaptation.

As I continue on this path, I remain hopeful. We are confident in advancements in MS treatment for a more accessible world and optimistic that by sharing our stories, we can increase understanding and empathy for all those living with disabilities.

Remember, whether you're living with MS or supporting someone who is, you're not alone on this journey. There will be tough days, but there will also be moments of joy, discovery, and profound connection. Embrace them all - they're all part of living a whole life, MS and all.