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Commentary: Facing death taught him to embrace life

This article first appeared in the St. Louis Beacon, Aug. 3, 2009 - Eight years ago, a brilliant young financier, Jack Lampl Orchard,  was diagnosed with amyotrophic lateral sclerosis -- ALS, often called Lou Gehrig's Disease. When he died, he left behind an extraordinary letter for his family and friends. In it, he said the disease stripped him clean of all ambitions but one: to know his life meant something. This document is reprinted below. It was read by his friend and John Burroughs School classmate, John Lemkemeier, at a memorial service for Orchard at the school on July 26.

Well, at last here we are, together again on a day we all knew was coming, but one we wish we could have put off a little longer. Since I have never been particularly sentimental, now seems like an especially poor moment to start. Instead, I thought I'd take this opportunity to sink any thoughts you might harbor about how my life in the last eight years may have been unbearable, or that my death is a tragedy.

There was certainly a time, the year around my diagnosis, when I couldn't find pleasure in anything. But once I accepted my predicament, suddenly I found joy in all its usual hangouts and in a few new places. I began exploring my new reality and you said you'd support anything I wanted to do. Seeking a new source of meaning in my abbreviated life I launched a charity with your help. Newspapers and TV stations wanted to cover my work. Big corporations gave me awards. Countless girls came over to my house, which, in the immortal words of Paris Hilton, is hot. And yes, there has been humor too. I've enjoyed making you laugh by poking fun at my disabilities. Don't get me wrong - ALS definitely sucks, but it's not all terrible.

One of the best outcomes of getting ALS has been the way it has stripped away all the varnish that used to cover the real Jack. When I was a teenager I wondered who I was deep down in my core. Maybe I'm adventurous like young Jim Hawkins, setting off across the seas looking for Captain Flint's gold on Treasure Island. Or maybe I'm a dutiful son like Telemachus, eager for a shot at earning the pride of his heroic father Odysseus. Or perhaps I'm just scared of the future like Holden Caulfield so I go on a bender in the big city to put it off another night. It didn't really matter which I chose because the ALS monster didn't much care for any of them.

First it stripped away confidence when I could no longer rely on my hands to work properly. Then it scraped off ego when I needed more and more help to eat, go to the bathroom, and bathe myself. And then it sanded away every last trace of vanity as my muscles withered away.

Beneath it all there was the real Jack, a guy who wanted nothing more than to know that his life will have meant something. With the benefit of such extreme clarity I realized I had an awful lot of work to do in very little time if I wanted to achieve that sense of fulfillment. It gave me terrible anxiety day after day before I dreamed up the concept behind my charity, Extra Hands. Now I wish I had started searching long before I was sitting in a neurologist's office. It would have saved me so much pain.

Another very good outcome of getting ALS has been the way it has shown me how connected we must be to each other, and how powerful we become when we join together. Before I became dependent on others I saw myself as a mountain - strong and solitary, formidable and forbidding. What a load of garbage!

It took just six months before I couldn't turn the keys in my car, six more months before I couldn't hold a fork, and another year before I couldn't get out of a chair. I felt so diminished by ALS. What am I going to do if I can't earn a living? Who am I if I can't feed myself?!

Independence is such an important component of our self-identities that as soon as we lose it we're crushed like an old soda can. But it doesn't have to be that way. It took me years to realize that my identity doesn't have to be built on my physical capabilities.

I can be a mountain if my bedrock is made of my connections to others. To one person I'm an old friend who loves to shoot the breeze with him. To another I'm a fellow patient who needs help breathing. And to another I'm a stranger she saw on the news who inspires her. We are social creatures regardless of the myths we tell ourselves about how we can forge untrekked wilderness on our own. We need each other, it's that simple.

And as our world shrinks because of 24-hour instant news and twittering celebrities, we have no choice but to embrace our interconnectedness. The more we do so, and the more we enrich the lives of the people around us - our families, our friends, and our communities - the greater we become. As I write this I am almost completely paralyzed, but I've had time to touch thousands, so I've never been stronger.

Yet another magnificent outcome of getting ALS has been the way it has deepened my friendships and introduced me to some amazing people. Before I got sick I had plenty of friends but we rarely talked about anything important. Dude, you want a beer? Hey, pass me the remote. Wow, your sister is really hot ... ouch that really hurts! But ever since the day I announced my diagnosis eight years ago it's been different. Jack, I'm glad you've been a part of my life. Jack, this thing stinks for me, too. Jack, you mean a lot to me. I would trade this disease for just about anything, but not if it meant I'd never hear that. And I wish I had told you the same things long before we both felt we were running out of time.

Just as life with ALS has had very real joys, death at my age doesn't have to be tragic. It's tragic when someone dies before he's ready. I certainly wasn't ready eight years ago when my doctor explained his diagnosis. I wasn't ready four years ago when I met Kristen, the love of my life. And I wasn't ready when I got pneumonia two and a half years ago and needed a tracheotomy to survive it. But going through with that operation changed everything. Above all, it made it possible for me to be kept alive indefinitely. That may sound alluring. In our advanced medical culture we prize longevity so much that it's easy to forget that the quality of our lives is just as important as the quantity of years we get. In my condition, with so many of life's simple pleasures out of reach, quality has become much more important than quantity.

The bottom line is that the operation placed on my shoulders the responsibility for choosing when too few pleasures remain, when I've done enough, when to end my life. What an opportunity that is! With good care I could eliminate surprise from the process of dying, and I could plan it down to the smallest detail to preserve my dignity, to give you a sense of the serenity I feel so you never have to wonder what I was thinking in my last months and weeks and days. But on the other hand, what a burden it is to stage-manage one's exit! I felt compelled to explain my choices to family and friends, to involve the people who love me at an emotional level I had never before let them see. I felt obliged to use my time well, and to set aside self-pity. I accepted these responsibilities completely and I've tried to live every day since then deliberately and purposefully, to squeeze as much life out of this broken body as I can. The result is that I've arrived at a very peaceful place, a magnificent and beautiful place where I'm entirely satisfied with my lot. That is a triumph, not a tragedy.

Death can also be tragic when someone misses a chance to experience something. As for me, well I've seen every place on earth I ever wanted to see, and plenty more I would have preferred to skip, like the charming Russian village of Muroam where I found out the hard way in the depth of night that my room at the bed-and-breakfast was the communal bathroom.

I have experienced thrilling adventure, like when I went running with the bulls in Spain with more booze in my veins than is advisable. Maybe that's why it seemed like such a good idea at the time.

I have experienced immense challenge, like when I tried building a charity from scratch while losing my voice. Extra Hands seemed to gather more momentum the less I spoke, a very curious correlation that didn't escape my notice.

I have experienced great joy, like when I stood on my skis atop a giant, glistening mountain in Switzerland with the Matterhorn behind me in the distance and 500 meters of moguls in front of me. And I have experienced miserable defeat, like when I reached the bottom of that slope face first.

I have experienced unbridled victory, like when an Extra Hands volunteer so shy and quiet that we wondered if we should let her visit a single mother with ALS came back three months later and said confidently, "to see how determined my patient can be has really made me realize how determined I can be with everything I do too."

And I have experienced love with Kristen like I thought didn't exist outside of Hollywood movies. We have laughed so hard together that I thought I should wear Depends. She has cheered every time my name made it in the paper and then announced it proudly to everyone she knows. She has saved my life so many times I've lost count. She's my Aphrodite, my Bacall, my Isolde. She is impossibly wonderful and has made me impossibly happy.

I've studied under Nobel Laureates, hung out with the great Hank Aaron, and beaten a pair of KGB sharpshooters at a shooting contest. I've stood on the bank of the Columbia River taking in the same view of the Pacific as my eternal hero Meriwether Lewis. I've dined on champagne and caviar until I couldn't stand another bite, and I've satisfied every bleeding heart's wildest dream by giving hope to legions of the hopeless. In other words, I don't just feel fulfilled. I feel that I've lived more in 41 years than most do in double that. Since my diagnosis I've made one hell of a silk purse from the sow's ear I got handed, and I'm damn proud of it.

Death can also be tragic when someone dies without friends. When Lou Gehrig retired from the Yankees he said he felt like the luckiest man on earth. At a moment like that you might think he should have said the unluckiest, but he was talking about how fortunate he felt to be surrounded by devoted family, friends and fans. In the same way I have been lucky all my life, not just when I needed to be. When I first understood that my life would be shorter than I expected, I felt all the shock and depression you might imagine. And were it not for you I might still be drowning in despair. Of course we all knew the odds of finding my miracle cure in the nick of time were infinitesimally small, but nevertheless you were there for me, and I cherish that.

Those of you who know me best know that in matters of spirituality, I am a thoroughly secular humanist who believes that to build meaning in life one must bring out the best in others so everyone can have the best that life has to offer. Does that not sound like the most ridiculous bit of Pollyanna nonsense you ever heard? Well, you are the ones who financed the building of Extra Hands which brought out the best in young people so people like me can still have the best in life. Sure, it's dreamy. It's bright shiny things on gossamer wings. But it worked thanks to you.

In the last few years I have often felt I could never repay the generosity and affection you have given me. But I have some thoughts to share with you today that, I hope, even the scales a little. First among them is the secret to achieving the peace you've helped me find. In the hopefully distant future when your time comes you'll want to feel ready, as I do. You'll want your life to have meant something. Building meaning in your life is no simple feat you can achieve in an afternoon. Maybe you'll do it by raising great children. Maybe you'll do it by serving God. Maybe you'll save the whales, or join the Peace Corps, or fund a scholarship, or ask what you can do for your country. No matter what you find fulfilling, don't wait until you're in a life crisis to do it. Get started building meaning in your life the minute you leave here and keep doing it the rest of your days.

Second, connect with people around you, not just your families and friends but also those in your community. Our connections with other people are all we have that are worth anything, and the only things we can take with us when our time comes. For me nothing feels as good as when strangers ask how I've addressed some problem arising from ALS.

Maybe they got my email off my website or a patients' chatroom. Maybe they're in pain. Maybe they're lonely from being homebound. I'm just as needy as anyone writing me but it makes me feel a mile high to share a few tips. I daydream about the impact I could make if I could magically get out of my chair and fly around visiting others to chat about our issues. I'll grant that it's not the sexiest fantasy ever but it works for me. I promise something like it will work for you too.

And third, when someone dies in middle age I think it's a message in bright, blinking lights that life is fragile and fleeting. Your time, every moment, is unfathomably precious. Yet, during rush hour when you're stuck in traffic on the way to a job you don't love, you could squander it so easily. It would give me great satisfaction if I could give you back an enduring awareness that your time is something to be treasured, never just passed. I challenge you not to waste another second, and I wish you well knowing the time I spent with you was time well spent.

With undying love and admiration,