Much — both good and bad — has been made of the viral nature of the “Ice Bucket Challenge” in support of the ALS Association over the past several weeks. However, if you’re one of the extraordinary numbers of people to have bravely engaged in dumping buckets of cold water over your head to support this campaign, let me simply begin by saying thank you in the most genuinely heartfelt manner possible in print. I don’t think you can begin to imagine how important your contribution is — both in terms of an actual monetary donation and by helping raise general awareness of ALS — or the impact your simple gesture of momentary discomfort has on those of us in families touched by this disease.
Until by some cruelly bizarre twist of nature and fate my 88-year-old mother was diagnosed with amyotrophic lateral sclerosis in March of this year (it is far more common in 30- to 60-year-old men), I was as unconscious as most are to what this disease is and to how it affects those unfortunate enough to have it. Unlike cancer, diabetes, high blood pressure, high cholesterol, heart disease or deteriorating joints, which affect larger populations and are consequently better-known, ALS is diagnosed in only about 5,600 people annually, and typically only 30,000 Americans (100,000 people worldwide) have the disease at any one time. These are numbers far too small to attract the attention of all but the most intrepid researchers (thank you, Mayo) and altruistic pharmaceutical companies (I’m sure there’s one out there somewhere). Indeed, this fundamental lack of profit potential is pretty clearly reflected in the facts that only one drug is currently available to ALS patients, and that it is only minimally effective in extending life expectancy by 60 days in the minority of the patients who take it. And therein lies a significant part of the problem and the reason your brief romances with cold water are so important to those of us in the ALS community.
ALS is no ordinary disease. It’s not a cancer that can be surgically removed, zapped with radiation or targeted with chemotherapy. It’s not a malfunctioning organ like a pancreas or kidney whose functions can be (albeit inconveniently and sometimes with difficulty) substituted for by routine injections or machine, nor is it a heart, liver or lung that, when all else fails, can be transplanted. It’s not a valve or blood vessel that can be surgically repaired, bypassed or kept open with a stent. It’s not a condition that can be ameliorated by a change in diet or by adding cholesterol-lowering statins or blood pressure meds to one’s daily vitamin regimen. I am by no means downplaying the significance of any of these conditions, but they all have one thing in common that ALS currently does not offer: the possibility of hope.
Increasingly with virtually any other medical condition, there’s something you can try. Some new drug or new procedure arrives almost daily for diseases and conditions that have long been thought untreatable or intractable. Indeed, the ideas that age 60 is the new 40 and that the first person who will live to be 150 is alive on the planet today create a sense of general health and physical omnipotence that are hard not to get excited about. Yet even someone stricken with Ebola — with its 90 percent fatality rate — has more hope of being treated and surviving in West Africa than someone with ALS has in the United States. At present, there are no effective drugs, no treatments, no procedures. Once you’re diagnosed with ALS, you’ll face, on average, a two- to five-year “living death” as weakness, wasting and paralysis of the muscles of the limbs and trunk steadily and irrevocably progress to eventually include those that control speech, swallowing and breathing.
It’s not particularly hard to comprehend this “weakness, wasting and paralysis” at a conceptual level and, as with all diseases, understand that it’s a bad thing that we most certainly don’t want to get. But let me try to make ALS more tangible by sharing a segment of a blog written by Bo Stern, a pastor at Westside Church in Bend, Ore., whose husband, Steve, has ALS. She refers to these as “empathetic experiences,” and they may enable you to more fully experience and appreciate what having ALS is like for those diagnosed with the disease. These are things, she says, that you can do to “walk for just a mile in ALS shoes. If you try one, take a little time at the end to consider that people actually living with the disease have a million miles more to go.” (This list is slightly edited to fit the context and style of this commentary.)
1) Borrow a wheelchair or power scooter and try to maneuver quickly through the aisles at Target, without speaking. Note the way people react to you.
2) Strap 25 pounds to your forearm. Now, adjust your rearview mirror.
3) Strap 25-pound weights to your ankles and climb a flight of stairs, taking two at a time. That’s the kind of strength it takes for someone with even early stage ALS to tackle the stairs on a good day.
4) Pick up a 10-pound weight. Now imagine that it’s your fork, and move it from your plate to your mouth repeatedly without shaking.
5) Indeed, before you eat your next meal, take a good, long look at the food. Inhale deeply and savor the aroma. Now, imagine never being able to taste that — or any other food — for the rest of your life because, having lost your ability to swallow, your meals are injected directly into your stomach through a feeding tube implanted in your abdomen.
6) Put four large marshmallows in your mouth and have a conversation with your friends. How many times must you repeat yourself? How does this make you feel?
7) Install a text-to-speech app on your phone or iPad and use it exclusively to communicate for one day. How unintelligent, inadequate, frustrated and helpless do you feel?
8) Using none of your own muscles, have your spouse or child or friend get you dressed and brush your teeth. Write down some of the feelings you have being cared for in this way.
9) Go to bed and stay in one position for as long as you possibly can, moving nothing. Cross your legs; then, have someone hold a lit a candle under each of your heels while someone else holds your feet so you can’t move while someone else is sticking pins in your toes. Imagining trying to sleep like this.
10) Lay with your arms above your head until they “fall asleep” and you can’t move them. Imagine your entire body feeling like this.
11) Sit in a chair for just 15 minutes moving nothing but your eyes. Nothing. No speaking, no scratching your nose, no shifting your weight, no changing the channel on the television, no computer work. Only your eyes. As you sit, imagine: This is your life. Your only life.
12) Imagine knowing that this is your future and having to grieve the day by day loss of every little ability — to say a word, enjoy a cup of coffee or glass of wine, wiggle a toe, use the toilet, write a note, pull up a blanket — until the only thing you have left is the ability to blink your eyelids.
The point of this list is not to be melodramatic or invite pity. All diseases are bad in their own ways, and all present their own unique impacts on our lives. But, in general, how we experience other types of disease or medical conditions is probably quite a bit different from what these empathetic exercises might lead you to appreciate about ALS. Indeed, we may more often feel the treatment for these diseases more so than the disease itself; with ALS, however, in the absence of treatment there is only the utterly brutal experience of the disease itself and its inevitable end.
So, what’s this all got to do with ice buckets? Simple. The profound impact the nearly $100 million this crazy campaign has raised thus far will have in terms of funding research, developing treatments and supporting the ALS Association’s remarkable outreach is, for many of us, the first real hope we’ve had. Average annual donations to the ALS Association are in the neighborhood of $3 million, so even though it may be years before there’s a useful drug or treatment available, these Ice Bucket Challenge related donations quite literally represent “hope” in its most tangible and immediate form.
Again, thank you for dumping water on your head, donating so generously and raising awareness of ALS. Anyone need ice?
Peter J. Stark lives in Minneapolis.