One Fall Day

My God it’s beautiful outside today. About 65 degrees, no clouds, and so bright that when I close my eyes, I can still see the brilliant-colored trees behind our house. The sunlight has such a warm glow, God must be gazing directly upon our tiny speck of Midwestern prairie. And yet the air is crisp, like the first bite of a freshly picked apple. A slight breeze delivers both the smell of fallen leaves, and the brittle rustling sound of those who still cling to their branches.

Fall has long been my favorite season. Always a few weeks too short though. Never as picturesque as I imagine, the chorus of color never quite perfectly timed. Fall usually puts me in a slightly melancholy mood too, triggering a deeper search for metaphor and meaning in the change of season. For the past three years, fall has felt bittersweet. Beautiful as ever, but tinged with notions of decay and impending loss. I am like the leaf, clinging to life on my branch, trying desperately to reveal my true colors before the inevitable gust of wind arrives and forces me to move on.

But learning to live amidst life and death has been a key part of my path to acceptance of both ALS and my mortality. I’ve realized that imperfection can and should be embraced. Death and decay are a natural part of the landscape. To ignore them is folly, to merely acknowledge them is reckless and myopic. So this year I’m learning to not only savor the beauty of radiant trees, but to delight in the barren ones as well. I’m choosing to revel in the juxtaposition of good and bad in the landscape of my life. Besides, fall isn’t really about dying. It’s about making way for rebirth. In that spirit, I intend to be battling ALS while still basking in the warm glow of sunlight with our new baby next spring. Much like Eva and I are doing on this fine fall day.

Special Note: Two friends of mine are currently fighting to stay alive with apparently incurable cancers. Ken and Mike, here’s to the three of us living another gorgeous day, still clinging to our branches.

Vegas; Baby

Three grandparents, a toddler, a pregnant lady, and a guy in a wheelchair travel to Las Vegas for the Jerry Lewis MDA Telethon. A new reality TV show coming this fall on Fox perhaps? Tune in next week to see who’s voted off! Tribal council says: so long “guy in a wheelchair!” Sounds more interesting to me than America’s Next Top Pathetic Excuse For Primetime. Or at least it would if I wasn’t said wheelchair guy.

Anyway, we had an absolute blast at the telethon. What an incredible production. It's how I imagine MDA summer camp: a hugely intense, surreal experience, far from home, meeting tons of great people, feeling a range of emotion and becoming friends with virtual strangers, and before you know it, you're on a plane back home to everyday life. We're still going through a bit of withdrawal. Where else in the world are people in wheelchairs treated like royalty?

At first it seemed odd to me that the telethon would broadcast from Las Vegas. I mean, Sin City and Jerry’s kids? But after being there, it made perfect sense. Not only because of the entertainment connection, but because at its best, Vegas is about hope. Maybe it’s a little desperate and misguided, but many people go there with the hope of making their lives better. Just like we did.

Oddly enough, we already had some hopeful news to share. If you happened to miss our profile and interview, you may be unaware that we announced Kirsten is pregnant. That’s right. P-R-E-G-N-A-N-T. As in expecting, with child, in a delicate way, knocked-up even. So let’s dispense straight away with some of the questions you may have. No, it was not an accident. If you know us at all, that one is a no-brainer. Yes, we did it the old fashioned way. I may be disabled, but it’s simply a matter of logistics people. And yes, we are indeed a bit crazy. But that’s nothing new. Life had just become a little too boring and unchallenging lately.

That isn’t to say we didn’t struggle with our decision. We’ve been grappling with it for the past three years, for all the obvious reasons. But as with most people who decide to have more kids, love overcame rational thought. Family is what we live for. And whether I’m around or not, we want our children to have a strong sense of belonging, a base from which to build their lives, and someone to rely on for unconditional love. I read a quote not long ago that helped me see things more clearly: “Bringing a child into the world is the greatest act of hope there is.”

But hope does not require justification. In fact, this is the last time I will offer any. We expected varying reactions to our news, and we got them. Some confused, some hesitant, but overall very positive. Just as I prefer people to laugh at my morbid humor, we’d prefer people be happy and excited for us. Frankly though, we’re a little nervous and scared too. Ultimately, this is our way of refusing to let ALS dictate how we live our lives, of keeping our hopes and dreams as a family going. Indeed, hope often feels like the only way forward.