Rewriting the rules of tennis … MS style

I can be a stubborn son-of-a-bitch when it comes to staying active. Tennis is a perfect example. In 2008, if you looked at my physical ability to play a racquet sport, you would probably say the closest I should’ve been to a tennis court was a Wii and wide-screen TV. I couldn’t run—or even jog for that matter, my legs were just too sloppy—and when my body warmed up from activity, my eyesight vanished like a hot dog in front of Kobayashi. Picture it. Within five minutes of getting on the court, there was an immobile blind guy holding what might as well be a flattened pasta strainer in his right hand. And yet I could still compete, even take the occasional set, from my wife, a capable tennis player. How? By rewriting the rules, MS style.

First, she had to make an honest attempt to hit the ball at or near me. Second, she had to play double lines. Third, I got as many bounces as I needed to give my eyes a chance to pick up the ball. Now you might wonder if this was fun. Absolutely! My solid forehand and respectable backhand kept her running from side to side. Even though I only picked up the ball in splotches, I rarely missed completely, watching Laura swing and using muscle memory to gauge when and where to swing the racquet. Although I served flat-footed—jumping was like running, it wasn’t happening—my first serve was better than my pre-MS second serve ever was. I even scored a couple aces a set.

Today, even though just walking with a cane is challenging, I still get out on the courts. How? Forearm crutch (more stability) in the left hand, tennis racquet in the right hand, a walker parked nearby (on court), a bunch of balls at the ready, and a very, very patient spouse. Laura hits the ball to my forehand and I fire it back. Rallies are short and a couple cans of balls last only a few minutes, which works out strangely well: I rest on the walker each time we run out of balls and she gets her exercise chasing after them.

Even though we may have mountains to climb to do our active passions, by using enough ropes, a little ingenuity, and, well, bending the rules, at least we’re on that mountain, dagnammit. It might not be pretty, but it’s darn beautiful.

Originally published in part October 22, 2008. Edited for clarity and expanded.

Life can be unfair, with or without multiple sclerosis

Bryan Jack could have been a cliché. Tall, lanky, and slightly awkward, he was a mathematical genius who drove quirky Saabs and sported haircuts that never seemed to be just right. When I lived with my parents in Alexandria, Virginia, he was our next-door neighbor. The neighbor who would rescue me from a missed Metro bus, the neighbor who would treat me for bagels at Chesapeake Bagel Bakery, the neighbor who would drive me back to college with a load of freshly laundered clothes after a visit with Mom and Dad.

As the budget analyst/director of the programming and fiscal economics division for the Defense Department, Bryan worked at the Pentagon, where he had commuted almost daily for the past 23 years.

But on September 11, 2001, he was not working at the Pentagon. No. Instead he was looking over his notes, preparing to give a lecture later at the Naval Post Graduate School. He was on a nonstop flight to California. American Airlines Flight 77. The flight that hit the Pentagon. He was 48.

Life with multiple sclerosis can be unfair. But life can be unfair for a lot of reasons.

Staring a multiple sclerosis relapse in the face... and blinking

It took two and half years from my first attack, which numbed the entire right side of my body in the fall of 2005, for the second relapse to strike. With relapse remitting multiple sclerosis, that second attack was almost certainly going to happen. So it was odd that I didn’t see it coming in March of 2008. I had just snowboarded a full day in Telluride. I went shoe shoeing for two hours the following day (picture of me and my wife Laura at left from that day). I was guessing I must have overdid it. That's all.

Okay, so my right leg was A LOT weaker. Going from the couch to the fridge to get a beer was an ordeal. And lifting said beer with my right arm actually required serious effort. It felt so stinkin’ heavy! And then there was that burning sensation all over my body. As the wave of new symptoms slowly rolled in, each swell eroded my confidence. I wasn’t prepared mentally. I guess who really is?

A couple nights later when Laura was away, my right leg screaming at me, I realized I didn’t have the strength to stand and do a measly few dinner dishes. So I just sat down in the middle of the kitchen floor. And cried for five solid minutes. I hadn’t cried about my MS like that since I was first diagnosed, but I needed that release. The following day I caved and called the neuro to give them an update. Come in the next day, they said. Two days later I was getting my first of three 1,000 mg steroid infusions in the hospital, all the while stubbornly still going to the gym despite barely being able to walk.

A week later, I was back to my relative “normal” self—the burning was gone and most of my strength had returned. Even though I put on airs of nothing-gets-me-down super ActiveMSer guy, my kryptonite experience in the kitchen—which my wife heard about for the first time reading this blog (sorry honey)—served as a reminder that this disease can, at times, be impossibly hard to cope with. (And I fully realize I had it relatively easy!) But cope we must. Tomorrow always dawns another day… and renewed hope.

Originally published March 7, 2008. Edited for clarity.