My 24-Year Journey with MS

By jkeith

2 min read

Twenty-four years ago this month, I woke up to a brand-new reality. MS gripped me like a pit bull shaking a ragdoll, and it felt like it shook the stuffing right out of me.

In some ways, it feels like lifetimes ago, and in others, it feels like just yesterday. But whether it seems distant or recent, MS has marked my life in ways that are hard to reconcile with the identity I had for my first 40 years.

Surviving over the years with MS

Looking back, I see clear lines. My first 40 years without knowing I had MS. The next seven, living with the certainty of the diagnosis. And the last 17 years, on an effective therapy that has stabilized, if not subdued, this disease.

Once I regained some functionality, I put my head down and worked, driven by the fear of leaving my family in financial straits if the disease took over again. That focus gave me the resolve to slog through the fog and mud of MS every weekday, always looking toward the weekend, where I’d finally unplug and collapse for a day or two.

While this kept me moving forward, it also distanced me from my family. All my energy was poured into survival, leaving little for my wife Liz and our two youngest daughters. Liz has been my rock, and my daughters grew up and flourished—but they did it largely without me.

Embracing a new beginning

I’m ready to draw a new line in my life. A line that marks the start of being truly present for my family. My four daughters are grown now, but I have 11 grandchildren ranging from 3 to 24 years old, and I want to enjoy them and hopefully be a positive influence in their lives.

The challenge now is figuring out how to do that. How do I set aside the coping mechanisms that have kept me moving for the past 24 years and shift to a new way of living?

That brings me to my "year 24 wisdom": Just because something works doesn’t mean it’s the right path forward. I wish someone had told me that even though I thought my life might be cut short, I should’ve planned beyond what I could see or expect—focused on what truly mattered in the end.

By year 25, I hope I’ll have succeeded in shifting the paradigm of my life.

Here’s hoping that you get a 24 (or 5, or 10, or 20) year jump on me as you weigh the value of being truly present in your life.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Kim Dolce Moderator & Contributor
<inline-mention username="jkeith" user-id="3951445"/> I get that 😀 This November will mark my 26. It hit me at age 41, on the heels of a severe upper respiratory virus. The terror that came out of that full-blown onset in late 1998 dissipated 3 years later, after I duly noted that I did not die, and had, in fact, thrived. The ensuing years brought permanent disabilities that did not prevent me from working for 9 more years. But I only had myself to consider. I was divorced and had no children. Still, my hindsight has produced regrets. I wish I had been more productive. I let a project fall by the wayside for 20 years. Now I'm picking it up again. At 67, this season of life has produced an urgency to get as much accomplished as possible. I have fast laid my regrets to rest this year and forged ahead. I make notes on what to accomplish, moment by moment, day by day, week by week. Your resolve to shift the paradigm will make the plan materialize. You sound highly motivated to make it work, and I'm a big believer in people who have that kind of goal. Ambition is the mother of invention, in my book. Wishing you well, Kim, moderator
CommunityMembera1c07e Member
I was diagnosed at age 36. What a surprise! I was working in NYC on Wall Street as a medical case manager. I was advised to go home and rest. At this time research had not been done with the standards and medical services of today. I then moved to Dallas where my Mom lived. I also met my husband here. Alot has happened and I have mobility issues as well as other issues related to MS but I need to keep going.
icyrock Member
Pre MS diagnosis, my goal was to reach 25+ years of marriage. Both our set of parents had gotten divorced, and we each were on marriage number two. Post-diagnosis changed my reality. My older siblings were my mental health mentors who helped me navigate my condition after I too was diagnosed with ones. But the only other people in my family who had MS didn't make it to 60, so I had no contemporary MS mentor. One of my cousins who had a parent with MS told me what it was like for that parent and how the parent was able to pivot.
1. Doreen H Community Admin
 <inline-mention username="icyrock" user-id="6777782"/>, Thanks for taking the time to share with us. It's incredible how an MS diagnosis can cause such a shift in perspective and way of living. I'm glad to hear you have a great support system with your siblings. Sending tons of positive thoughts your way, Doreen (Team Member)