I Find True Pleasures in the Tiniest of Moments as a Person With Multiple Sclerosis
Life-altering events come in various forms. It could be one brief moment or perhaps extend over a week, months or even a year. Sometimes it’s pretty obvious to recognize; in other instances, it might not fully register or become clear until later.
We got married on October 6, 2001, in the Washington, D.C., area. It was only 25 days after 9/11. There was so much uncertainty and worry that, in many ways, it didn’t feel like the right time for a celebration.
Looking back, our wedding reception was more than just about my wife and I getting married; it was about our family and friends finding a reason to smile and laugh again.
My wife and I spent the next week in Aruba, detached from the world (truly detached — this was before smart phones and social media). Within an hour of returning home, I learned my friend Grier had died while we were away.
It was a punch in the gut.
Grier had a heart attack on the highway while driving home from the beach. He was 25. Wherever Grier went, he brought sunshine with him. Our wedding pictures and video are forever graced with his smile and laughter.
Within this one-month period of 2001, there was so much grieving and sadness. I lost a friend, friends lost parents on 9/11, the city and country I had grown up in had been attacked. The world seemed like it had become a darker place.
The following October, in 2002, the darkness took on a surreal feel when the Washington, D.C., area was traumatized by a sniper. For 22 days we crouched down while filling up at gas station, walked in zigzag lines to and from our cars and only left the house if we truly had to, all in fear of encountering an unknown sniper who was terrorizing our area.
Life had become an eerie Stephen King novel, and my wife and I decided it was time to try something new. It wasn’t one particular event, day or loss of life that prompted us, but all of these events bundled together prompted our move from the East Coast to where we now reside: San Antonio, Texas.
We weren’t fleeing our old lives; we just wanted to start new ones. This new chapter in our life had an important preface, written in big, bold letters: Life is precious, don’t waste it.
Six years later, on May 13, 2008, I was in the office of the head neurologist at the Mayo Clinic, hearing the words, “You have multiple sclerosis,” for the first time.
Still in the fog of learning I had MS, I rattled off the first questions that popped into my head:
What is MS?
How did I get it?
What does this mean for my future?
After explaining what MS is and explaining how (although they only have theories — they aren’t quite sure of the how or why I got it), the doctor then addressed the third question:
“As for your future, I honestly don’t know. You could wake up tomorrow and be fine for the next 20 years or you could wake up and be in a wheelchair.”
The time around 9/11 was a cruel reminder not to take life for granted and now this moment brought a new lesson: Never take any step for granted. Ever.
There aren’t many days that I don’t remember his words. Each morning when I get out of bed and feel the ground beneath me, a tiny smile forms on my face.
There have been mornings that I wake up and don’t feel the comfort of my feet touching, and I fall to the ground or my legs have just given out. Never take that step for granted.
It’s not an uncommon sight for my wife to find me sitting or squatting in the middle of the floor of our kitchen, bathroom, bedroom, wherever — in recovery mode after having my limbs give out below me.
As my children’s innocent and curious eyes try to understand why Daddy’s legs give out, the familiar tune plays in my head: Never take that step for granted.
I didn’t fully comprehend the changes as they were happening in our lives back in 2001-02. And being diagnosed with MS in 2008 was a shock to my system. Two separate events that shaped who I am and even where I live today.
I wish we could live in a world where there are no 9/11’s, we don’t lose special people at such a young age and all diseases were cured.
Sadly, there are no genies to make these wishes come true.
So I hope I honor the spirit of those I’ve lost by living my life with appreciation of each new day, knowing they don’t have that same luxury.
I find true pleasures in even the tiniest of moments — a walk around the neighborhood with my son — because I don’t know what MS will bring when I wake up the next day.
Don’t hope for tomorrow, make it happen today.
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