5 Lessons from 5 Years of Multiple Sclerosis

Last month marked five years since I officially received my diagnosis of multiple sclerosis. I turn 45 years old this week, and a lot has changed in my life, my mind, and my body. I wanted to take a moment to share some of the biggest lessons I’ve learned (and relearned) during this period that help me stay focused on what truly matters.

Lesson #1: We can always choose our response to life’s events

This is listed number one because it’s the lesson I wish I had learned much earlier in life. But I didn’t. Better late than never, though.

We love to plan, project and dream. And then life happens. Sometimes, we get what we wanted and often we get something we never expected. Regardless of what life throws our way we get to choose our response. I gave myself two weeks to have a pity party after I received my diagnosis. After that, it was game on. I realized I didn’t want MS to dictate my future. I decided I was going to make the most of the time, energy, and mobility while I still had it. I jumped into research and planning mode. I was going to be proactive in giving myself the best chance possible to live a normal life.

Sure, it hasn’t been easy. Everyone’s journey with MS is different. I’ve been fortunate so far to still be mobile. Other than fatigue and some muscle weakness, I’ve been able to maintain as normal a life as possible. But giving up was never an option for me. No matter what we face in life, we have a choice. We may not like our options, but we still get to choose. I hope when life hands you a situation you’d rather avoid, you choose to take control of the things you can control, accept the rest, and live with as much joy as possible.

Lesson #2: Stop waiting, start doing

Receiving a  medical diagnosis can quickly change our reference point for how long we think we have to live the life of our dreams. All the things on your list which you’ll get around to someday, suddenly either seem insignificant or take on a sense of urgency.

We logically know we shouldn’t put things off. But humans are notoriously bad at putting things off and assuming we’ll eventually have time or conditions will be perfect. It won’t just happen. We have to be intentional and make them happen.

Lesson #3: We are all capable of more than we realize

When we become laser focused on an outcome we want to achieve, we’ll move heaven and earth to get the job done. It’s as if we had this power inside us we never tapped into before.

Once I quit putting things off, like getting in shape, I surprised myself. I was a runner and that was no longer an option for me. So I started doing more weights and indoor cardio exercises. I joined a local Orange Theory Fitness studio. The physical benefits were good for me, obviously. But during their annual Hell Week challenge leading up to Halloween, I pushed myself harder than I thought I was capable of doing.  I didn’t think I could row 2000 meters without dying. I did. I didn’t think I could work out 7 days in a row and still walk. I did.

The scariest part of Hell Week wasn’t the physical exhaustion. It was the realization that if I could do things I never thought I could, what other areas was I shortchanging due to my limiting beliefs about myself and what I could accomplish?

Lesson #4: Ask for help

Okay, so maybe I’m still learning this lesson. I’m not good at asking for help. I never have been. I don’t want to inconvenience anyone. To receive a diagnosis like multiple sclerosis is like the universe punching me in the face and saying, “You better get good at asking for help. You’re going to need it.”

Slowly, I’ve started asking for help. I still wait until the last minute to ask, though. I’ve got a lot of room to improve in this area.

Lesson #5: We never know what someone is going through

MS can be a silent disease. There are days I appear to be fine, with no noticeable problems with my gait or ability to do things. Except I’m exhausted. I could sleep for 12 hours and still wake up with no energy. I often get weird glances from people when I am having an extreme fatigue day and decide to use my handicap placard. I look fine. Why should I need to park in a handicap spot? At first, I thought I was just self-conscious of the situation. But over time, several other people have noticed it while we were out and about.

It doesn’t bother me. I can’t control what other people think (hint: none of us can). I do use it as a reminder, though, that I have absolutely no idea what someone else is going through. They may be just as exhausted as I am and not have the luxury of parking in a spot closer to the door. Or their here life situation could be ten times worse than mine. I’ll never know. So I use these weird glances from people, and any other time I see someone struggling, to practice compassion and do my best to refrain from judging. Yes, I’m still working on this one as well.

Go Live the Life You’ve Imagined

Someone with MS recently expressed guilt that their symptoms weren’t as severe as mine and that they seemed to be doing well overall. My symptoms are not severe in the least, this person had just happened to see me on one of my rougher days.

My message to them was simple: take advantage of every opportunity life gives you to go out and live an amazing life. If you can run, run. If you can bike, bike. If you can build something, build it. Don’t wait.

We never know when the things we take for granted might be taken away.

We never know when the things we take for granted might be taken away. Click To Tweet

Use the gifts and talents you have and live the life you’ve always imagined. It’s a choice. You are capable of more than you give yourself credit for, but ask for help when you need it. And always have compassion for others and help them on their journey.

That last line was written for me. But it could just as well apply to you. 🙂

Much love,
Kevin W Gainey