Bucket List

I am angry with this thing called Cancer. Most of us are. We often hear it said that Cancer has “touched everyone’s lives” in some way. This is true. And it’s natural to hate the thing that causes loss.

But that’s not why I’m angry with Cancer. I’m angry with Cancer because I’m jealous of it. I have been for years. It’s infantile, I know, but I have wished it upon my family. “Cancer,” I have thought, “would be better than this.”

Let me tell you why.

Nine years ago, I got a phone call from my parents. Three letters came up: “A – L – S.”

Ah. Now you see where this story is going, don’t you? I’m glad.

I was just days away from a high-stakes exam, and my parents chose not to worry me with details. The diagnosis was not conclusive. It might be something else, which is treatable. Or it might be this disease, which is… not. Best not to worry about it until the results are clear.

The next morning, at work, in a rare few minutes of downtime, I idly plucked these three innocent letters into my search engine. You’ve done that, haven’t you? “What was that thing again? Oh, I’ll just do a quick search. It’ll only take a second.”

Yes. It only took a second for me to read those four damning words: “Three to five years.” Three Christmases, or four summers, or, if we were lucky, five Thanksgivings more. That’s all that would remain if these three letters, A-L-S, entered our lives.

My stomach turned into a rock. My vision blurred. Three to five years, three to five years, three to five years. Three to five years, and he would be dead.

Somehow I continued teaching, and studying, and functioning, even with these three demon letters dancing before me. What did they stand for? The words – Amyotrophic Lateral Sclerosis – were unhelpful. Medical terminology did little to explain the effects these three letters were having on my dad’s body. It was all a lot of jargon. But these words – three to five years – these I understood. The letters A, L, and S are a death sentence.

This death sentence is irrevocable. There is no pardon. There is no parole. There are no weekend passes. There are no appeals. You read the letters, and the clock begins to tick.

The body of the person you love begins an immediate, extended descent into complete paralysis; the brain of that person remains agile and limber to the end. This encaged mind will have three to five years to watch the executioner’s approach, enduring every moment with a cursed alertness.

Each day, this living mind controls less of the body than it did the day before. Each day, the body is capable of one less thing. Driving. Shaving. Dressing. Holding a telephone. Swatting a fly. Scratching an itch. Turning a page. Nodding. Chewing. Speaking. Lifting a finger. Swallowing. Breathing.

ALS can be defined as a progressive neuromuscular disease, but that’s not what it really is. It is a fixed, three-to-five-year trajectory from conscious mountain climbing to conscious blinking, and then death. That’s all.

So why am I jealous of Cancer? Cancer, too, brings conscious suffering and death. It’s awful to watch. It’s awful to experience. It’s awful to remember. There is, you would think, nothing to envy about Cancer.

But there is.

If you have a conversation about Cancer, you will hear words like chemotherapy, remission, blood count, survivor, and even Cancer-free. These words will not enter an ALS conversation. ALS cannot be zapped, shrunk, or severed from a person’s body. Ever. No blood test will indicate an improvement, or even a fluctuation. Ever. There is no remission. There are no survivors. There is no such thing as ALS-free. For most of us, that means there is no hope.

If Cancer had been the word spoken into my telephone nine years ago, I could have hoped. It might have been “caught early.” There might be “treatment.” However horrific, there was always that possibility that it might be an interruption rather than a termination. But instead of Cancer, my family got three letters spelling death.

“Oh, but surely there’s some form of treatment! Surely they’re doing research!”

This brings me to my second beef with Cancer. Cancer has pink ribbons, Movember, and Run for the Cure. Everyone has been “touched by” Cancer, so Cancer has lots of donors, lots of researchers, and lots of hope. Everyone has heard of Cancer. No one needs to Google Cancer on his or her coffee break to find out what it is. Cancer has an army.

What does ALS have? Some fiercely devoted mercenaries, no doubt. Some researchers, making some progress in some cases with some combinations of drugs. Some friends and family members quietly collecting pledges for Hikes and Walks. A few specialists, in a few cities. A quiet remnant.

“Why doesn’t ALS get the attention or research dollars that Cancer gets?” I asked, nine years ago.

“Partly because it doesn’t affect as many people,” was the response.

“And…?”

“And partly because ALS enters and leaves people’s lives in such a short timespan that they lose hope that anything can be done in time to save the patient.”

Three to five years. That’s not enough time to find a cure. And after three to five intensive years, ALS has killed off the fundraising energies of many of its victims’ caregivers.

“That’s horrible!” I thought. “How selfish of those people to let me down. They are supposed to be finding a cure for my dad, even though their dads are already gone. I can’t believe they’d just give up.”

Nine years later, where do I stand? ALS left my family six years ago. Those three letters still pain me. But I have not translated that pain into action. I am letting down all those women whose dads have just been diagnosed. In three to five years, they, too, will be too tired to take up the fight. We are so few, and so weary.

And then came the infamous “Ice Bucket Challenge.” Everywhere, people are challenging each other to either donate $100 to the ALS Society, or have their heads doused in ice cubes. Prominent celebrities are in on the game, and it’s all being documented on social media for the cyber world’s amusement.

The Ice Bucket Challenge is generating all sorts of attention – and all sorts of criticism. What good are a bunch of chilly videos if no one has to make a donation? Even if they do make a donation, what good is that if neither the subjects nor the viewers know a thing about the disease itself?

I’ll tell you what good it does. These three letters that I had never heard of a decade ago are now on everyone’s TVs, computer screens, and phones. Newscasters and bloggers are explaining that ALS is also called “Lou Gehrig’s Disease,” that it kills thousands of people every year, and that it has no cure. Even if nothing more than that is accomplished, something has happened. The drums are beating. People are stirring.

But more has happened. Since the campaign began earlier this summer, $60 million has been raised for the ALS Association in the US alone – thirty times more than in the same time period in 2013. People are talking about the disease. The mercenaries are raising the beginnings of an army.

If this campaign – which has been dubbed by some as wasteful and irresponsible – alerts even one potential researcher to take this neglected disease under his or her wing; if it inspires enough donors to support that one researcher’s inspired project; if it brings that researcher one step closer to bringing these three letters to their knees; and if it does so using the momentum of social media rather than the limited advertising dollars of previous donors; if it does even one of these things, isn’t that something to applaud? In three to five weeks, more has been done to promote this cause than in the three to five years that most families spend watching their loved ones die.

And do you know what? Even if none of these things happen, and the campaign does nothing more than speak these three deadly letters, day after day, into the homes of the healthy, then something has still been gained. People like me, who receive a devastating phone call like the one I received nine years ago, will know that these letters exist. They will know that people care. They will know that they are not alone. In short, they will have hope.

Please, don’t sodden this hope with your criticisms that charity dollars are being diverted from other (more worthy?) organizations, that water ought to be used responsibly, and that past research has met with little success. No one would say that daffodils and pink ribbons are being wasted at the expense of other causes; please, just let these viral ice cubes have their day.