Don’t Sweat the MS

Don’t sweat the small stuff. That’s how the saying goes, right?

But what if the seemingly smaller aspects of your life are actually the ones that drive your engine and spirit?

Life with multiple sclerosis is not easy. Energy needs to be rationed. The odd and sometimes agonizing sensations never cease. Pain is constant. The quantity and quality of vision and mobility is negotiated on a moment-to-moment basis.

I once had a bad relapse that caused foot drop, prohibiting me from walking straight because my left foot dragged behind me. Blurred and limited vision is a regular occurrence. Vertigo surprises me often. These ailments were and are incredibly difficult to cope with, but I feel oddly energized to fight them and continue on.

A fear of a life-altering relapse is certainly real, but it’s the seemingly more benign day-to-day sacrifices of MS that are the hardest to make peace with:

• When my children play make-believe, the “dad” character is often resting or napping, as opposed to working or going out for a run.
• I’ll never return from a day at the office to be greeted with smiles and elation from my wife and children because I’m always already at home.
• As for my career, when I “medically retired” in 2010 there was no farewell party. I just disappeared into thin air. Many of my co-workers were unsure of why and where I went. All the years I spent earning my stripes and building my brand literally vanished overnight.
• There is never an extended period of time without doctor appointments, treatments, medical tests, phone calls or paperwork, each one a reminder of my chronic disease.
• When out with my wife or friends, it’s embarrassing to be the one that needs the open seat since standing on my leg causes so much pain.
• If I’m not overcome by vertigo at a grocery store, I’m usually tired out halfway through a shopping trip with the family.
• Most weekends, trips, holidays or large events are strategically planned with my health limitations in mind.

This small stuff stings the most. In each, I feel like little parts of me – my essence – have been stolen away by MS. 

I loved to work. I enjoyed interacting with others, providing value for great companies and was proud of my accomplishments. And it saddens me that I can’t teach my children the value of a hard work ethic within a career setting.

My career wins weren’t quite the same as Michael Jordan’s or Peyton Manning’s, but similar to a retired athlete, my children have to hear about my former “playing days” instead of seeing it in real time.

When we started a family, my goal was to raise our children in an active setting. School came first because getting a solid education is paramount. But to me, being a well-rounded person is even more important.

I want my children to be ready to fly when they leave the proverbial nest. I wish for them to excel at schoolwork, and to thrive at oral and written communication, the arts and athletics.

I dreamed of running with my kids, coaching their teams… leading by example. My drive to be active remains – but instead of going for runs or playing racquetball, it’s going for walks or a swim.

I dreamed of being the kind of father whose kiddos viewed with awe – one that drove away to that mystical office for the day but then came home at night and helped them with their schoolwork, coached their teams and attended their activities. Each weekend would be packed with an abundance of activities and loving memories together.

As a husband, I desired to be a provider, protector, comic, part-time cook and although I can’t put a nail through wood, I’d compensate by calling a handyman instead, all while helping to carry the load in household planning, chores or errands.

Like anyone, I wanted to have it all.

Living with MS, you realize “having it all” is no longer some grandiose vision but is found in the small stuff, like any moment when I can see clearly and walk strongly over to one of my kiddos and give them a hug.

So, I’ll continue to sweat these small things. Some days they sting more than others, but I can’t let them diminish my spirit because – in the end – I refuse to sweat the MS.