The ALS ice bucket challenge has flooded my Facebook newsfeed. At first it was just a friend of a friend, so I didn’t pay much attention. Within three days about fifty of my friends accepted the challenge, so I finally figured out what is going on across the country.
Every week something new is trending on social media – a video of cats doing something “extraordinary” or a baby doing something ordinary, a poignant or provocative blog post, links to breaking news and scandals. Some of the trends are funny and uplifting, some controversial, and others downright deplorable. The phenomena of all these people dumping an ice bucket over their heads to raise awareness and/or money for ALS is one of the better trends. According to The Huffington Post, they’ve raised over $160,000 in a 10 day period. It’s amusing to watch my friends and celebrities douse themselves, but whenever I see the letters ALS, I think of images and challenges that make a bucket of ice seem as intimidating as tossing a grain of sand into the sea. I think of the day I met Hank.
Many years ago I did a chaplaincy internship at a large suburban hospital. Our staff of chaplains worked hard to meet the spiritual and emotional needs of thousands of patients each week. One day while on call, I was paged to spend time with a patient whose family was out of town. The RN told me her patient’s name was Hank, that he had advanced ALS and he was having “a rough day.” I’d heard of ALS, of course, commonly known as Lou Gehrig’s disease, but at that point I knew more about the baseball player than I did the disease, and that is saying something. I had no idea what to expect.
I heard Hank moaning before I reached the door of his room. When I entered, I saw a man slumped in the raised hospital bed, the side of his face smashed against the plastic side rail. His eyes were open but they didn’t move. I approached the bed slowly, greeting Hank by name and introducing myself. With a frozen jaw and his lips and tongue only twitching, Hank groaned out a short sound. It wasn’t what I would normally call a word, but it had enough force of breath to let me know that Hank was trying to communicate with me. He repeated himself many times. I asked myself over and over: what did Hank need? What could I do? Unable to understand him but sensing his distress, I felt helpless and uncomfortable and wanted to run out of the room.
Eventually, I figured out that Hank was saying. “Head, hurt.” – and no wonder, smashed up against the railing like he was, unable to move. I wanted to kick myself for missing the obvious. It took me ten minutes and four requests to get a nurse to help me get Hank in a comfortable position. He groaned loudly the entire time but stopped as soon as we got him better situated. By that point, I was sweating and holding back tears. I pulled up a chair and sat down where Hank could see me, not knowing what else I could do.
Hank was so fragile. He wasn’t much older than my father but he looked decades older. He couldn’t move his limbs or his head and when I held his hand, his fingers were stiff and still in mine. I imagined that he must be a shadow of his former self, a fact confirmed when a woman stepped in the room.
Marge introduced herself as a friend of Hank’s from high school. She told me that she wanted to come visit even though she hadn’t seen Hank in years. She gave a smile that was more like a grimace and she stood in the doorway, nervously wringing the cardigan sweater she held in her hands. Her eyes darted to Hank lying in the bed cocooned by six pillows and a blanket. I invited Marge to take my seat so she could visit with Hank. She quickly declined, mumbled about coming back on a better day, and left. She was there maybe two minutes max. Her friend’s appearance so startled and distressed Marge that she fled.
I spent a few more minutes with Hank. I didn’t say much because I didn’t know what to say. I prayed for his comfort. I briefly held his hand and when I left I made sure one of the many CDs stacked by his bed was playing. I was shaken. As a chaplain it was one of those defining moments when I felt utterly inadequate to my task. As a human I felt ashamed and embarrassed. Ashamed that I was uncomfortable in Hank’s presence, that I was tongue-tied, that I spent more time worrying about my feelings than Hank’s. I was embarrassed for Marge, Hank’s friend, who couldn’t bring herself to spend more than two minutes with him. Later that week I grew angry – angry with the unit nurses who were too busy to help Hank, and angry with hospital standards that kept too few nurses busy with too many patients and too many protocols.
This is a portrait of ALS and it exposes our real challenge. There are thousands of Hanks in our country, in our hospitals, nursing homes and neighborhoods, hoping we will hear them cry out and come help. Certainly giving money to ALS research and other charitable health care organizations is a tangible way to help. And if you dumped an ice bucket on your head and raised awareness or you followed a link and educated yourself about the disease, I’m sincerely glad. But ten minutes of reading and a fifty dollar donation don’t meet the real challenge of ALS.
You may never know or meet someone with ALS, but chances are in your lifetime that you will know and love someone who will be diagnosed with a debilitating and/or degenerative disease. Whether it is ALS, multiple sclerosis, muscular dystrophy, or dementia, your challenge, if you choose to accept it, will be to offer your steadfast love.
Steadfast love is love that goes beyond sentiment and beyond the doorway. It’s love that moves forward through your fear and discomfort, knowing that your fears and discomforts are nothing compared to the one whose hand you hold. This love makes you pull up a chair, stay a while and come back tomorrow. It prompts you to bring his favorite book and read the best chapter aloud and then talk about what moved you. It inspires you to sing her favorite song through your tears or gently massage lotion on stiff fingers and cracked skin.
Love never treats a person like they are someone else’s problem, like they are a disease, a financial burden, or just a body in a bed. To love is to greet them by name and always treat them as a beloved. Even when they can no longer speak. Or when they’ve forgotten your name. And especially when they no longer sound, smell or feel like the person we once knew.
And when we run away, steadfast love asks us to forgive ourselves, to go back and try again.
This is what ALS asks of us. This is also what God wants of us. It’s a big, scary ask. But don’t forget, we have everything we need to meet it.
Love is the most beautiful expression of our humanity. Treating people as people, being involved in their care, showing them they are loved – until the day they die – this carries the scent of heaven. If we do this, then we offer the best help and meet life’s greatest challenge.