He always seems to like getting his picture taken.
To say my first visit with David was awkward is about as severe an understatement as one could make. He didn’t know who I was or why I had come to see him. I knew only two things about him, one of which was his name. And, oh yeah, he couldn’t speak. Have you ever tried to get to know someone who can’t talk? It’s a challenge.
But it was a challenge I was up for, as I’d been thinking about this stranger for several weeks leading up to that first visit. I had seen David at the nursing home where he lived one sunny Sunday while I was there with my family on behalf of our church. The only interaction we had was when I pushed him in his wheelchair from the lobby where he was gazing out the window into the multipurpose room where our church’s praise band was putting on a concert. We left an hour later, but my mind and heart somehow stayed with this guy. Perhaps he stood out because he was so young, surrounded by those generations ahead of him. Whatever the reason, I couldn’t shake him, to the point where I thought, ‘There must be something to this. Maybe I’m supposed to help him.’ It was such a supremely egotistical notion, even cloaked under the guise of Christian love and service.
Turns out I had it half right: We were supposed to meet — so he could help me.
I tracked down a phone number for the volunteer coordinator at the nursing home, a friendly woman named Andrea, and I called her. “This might sound weird, but…” I began, trying to describe who I was and why I was calling without sounding as crazy as I felt.
“I know exactly who you mean,” she laughed. “That’s David.” Privacy laws prevented her from telling me anything about his affliction or personal life; the only detail she disclosed was that he loved to play video games. My heart sunk; I don’t play video games. I’ve never played Wii or Xbox. Hell, I’m not entirely sure I ever played Nintendo. But I was determined to follow this through, so I spent a few weeks trying to coordinate a visit with David, myself, and a few teens from our church who I know like video games.
When I had my ducks in a row, I made an appointment with Andrea so she could meet me face to face and see I wasn’t as suspect as I probably sounded over the phone. We sat down, exchanged pleasantries, and I told her how I had rounded up some volunteers to come play games with David.
“Oh,” she said with a sad smile. “David has actually gone downhill in these last weeks to the point where he really can’t play anymore. I’m sure he’d love to watch though.” That, to me, sounded well intentioned but cruel. I asked if she could introduce us instead. She smiled and stood up. “I’d be happy to.”
David was sitting outside staring at the parking lot; he looked up when Andrea introduced me but I couldn’t tell how much he understood about why I was there. Frankly I’m not sure any of us understood it.
Showing me his Waldo shirt, which reads “You can’t see me.” Yes we can, David.
Then she left, and I was alone with a young man I didn’t know who couldn’t talk to me. Luckily, he was wearing a Penn State T-shirt.
“You like Penn State?” I asked, pulling up a chair alongside his wheelchair. He made a noise I guessed meant “yes,” so I continued. “I’m a proud Penn Stater. Graduated from there a looooong time ago.”
I continued to make small talk, telling him about my boys, talking about the weather. I tried to explain who I was again without sounding batshit crazy or like some type of pitying do-gooder; I’m sure I failed miserably. He mostly looked down, lifting his face to lock eyes with me once in awhile, then look away. At some point he reached for a burgundy hand towel to wipe his mouth, and I recognized the image on it immediately.
“Ohhh no,” I said with a sigh. “You’re a Redskins fan? Really? The REDSKINS??”
He looked up at me. “I’m a Bills fan,” I said flatly, and his face lit up in the way that can’t hide pride. “I’m not sure this is gonna work out.” My sarcasm made him smile, and he knew I was thinking the opposite.
When I left that day I asked if I could see him again sometime. “Uhh,” he said. Really hoped that meant “yes.” Then he reached up his shaking, bony arms and waited for a hug. I left elated.
That was several months and many visits ago. We are now friends, good friends, friends who have memories and inside jokes, friends who have watched many (terrible) movies together. I can say with conviction that there is no greater proof of how much I love David than the fact that I’ve watched “Alvin and the Chipmunks: The Squeakquel.” Not to mention “Ghost Rider.” And “Ghostbusters II.” (Scratch that, “Ghostbusters II” is actually kind of awesome.)
In my entire time with David, I have heard him utter three words: His usuals are “oh” for “no” and “uh” for “yes,” both barely audible but telling, as he prefers to make these sounds rather than nod or shake his head, which on some level would be easier for everyone. The only other word he has tried in my presence came the day early on in our friendship when I showed up unannounced (the only way I’ve ever shown up) and challenged him: “You don’t remember my name, do you?” I teased, not actually sure if he did.
His eyes got round and so did his mouth, and there was about 5 seconds before anything came: “Rah” was all he could manage, but it was about the most beautiful way I’ve ever heard my name called.
David has an electronic communication board that helps him “talk,” but it has only been working for two of our visits. In those few hours I tried to learn as much as I could without exhausting him or demanding too much. He went through many of his preset words and phrases with me, pushing the buttons and watching as I leaned in to hear the same voice as my neighbor’s old Speak and Spell say things like “My brother is Warren” and “My father is Robert” and “My mother died 42.”
That day I found out David has Juvenile Huntington’s, a genetic disease passed down from his mom, who died of Huntington’s five years before in the same facility where David now lives. She died just after he moved in there with her.
Banging on the nursing home’s piano made him smile about as big as I’ve ever seen. Something about giving a voice to the voiceless…
Everything I’ve read says life expectancy for those with Juvenile Huntington’s is about 10 years after diagnosis. David was diagnosed at 16, and he turned 30 in June, which means he already has beaten the odds. It often doesn’t look like much of a victory. Juvenile Huntington’s is a neurological disease that lays waste to certain areas of the brain, battering the patient with a series of symptoms that put him in a never-ending state of decline. David lost his ability to walk; his legs have become stiff. He has trouble swallowing. His teeth are broken and decaying.
All the articles I’ve read online talk about dementia and depression, but David has remained remarkably alert, attentive and outwardly focused. The thing you notice right away is that everyone knows him. When I push him down the hallway or when we’re sitting in one of the facility’s common areas, he raises his head and grunts in the direction of anyone and everyone, and they all answer him by name. “Hey, David!” “Who’s your friend, David?” “Hi, David!” His popularity used to surprise me, but it shouldn’t have. I was drawn to him myself; there’s something about him that you notice, something that stays with you.
I figured out what that was the second time his communication board was working, when I asked him to show me a screen with several preset emotions. “Are you feeling any of these right now?”
“Uh” he said, and then stared at the screen for an eternity, lifting a rigid finger and then putting it down so many times I began to worry that perhaps he could no longer read the words. I stared at them with anticipation and dread, wondering what he’d pick and what my reaction should be, as they were almost all pretty heavy: Afraid. Painful. Depressed. Disappointed. Embarrassed. Hungry. Confused.
Finally, with great effort, he made his choice, and we both listened and smiled as the robotic voice said, “Healthy.” It was the one word on there I hadn’t even considered, and the awe has never left me.
I have seen the days David isn’t feeling “healthy,” when he is so wracked with pain he spikes a fever and moans and flails. I asked a nurse once where he hurts, or how. “You know what a charley horse feels like?” she said. “I’ve been told it’s like that, but over your whole body.”
When he’s like this I hold his hand; sometimes I get up the nerve to pray over him. Once I put my headphones in his ears and played song after song from my phone; I think he liked The Weepies best.
Aside from the movie watching and football trash talking, nothing about my friendship with David is normal. We didn’t meet under normal circumstances. We don’t chat in any sort of “normal” way. When I arrive, there is no small talk about what he did last week or where he’s heading next weekend. If I think about that, and I do quite a lot, I get incredibly sad. His brother, Warren, recently told me he used to take David to a store once in awhile, to let him pick a new game or movie (so I have Warren to blame for those Chipmunks…), but the last time they went David got so upset when he had to return to the nursing home, that Warren said it was too hard on both of them; he had to stop taking David out.
Sometimes I think David does more waiting than living. He waits for someone to help him, change him, feed him. He waits for another day to pass, for the pain to subside, for another movie to start. He waits for a visitor, or just for someone to meet his gaze for a moment in the hallway, to call his name. Without a choice, he waits for what’s to come.
I think about David when I’m driving, when I’m playing with my kids, when I’m eating a snack. I think about all the things I’m doing that he can’t. And I think just as often about all the things he’s doing that I wish I was there for. I imagine him sitting in the hallway or lying in his room; I think of him in pain or just bored. I can see him laughing at the same parts in a movie he’s watched a thousand times.
My friendship with David has caused me to compare and contrast our time inside his little room with my life outside. In a world where I focus a lot of my energy on tuning out – whining kids and barking dogs, annoying commercials, political rants, financial worries and nagging insecurities — David has helped me learn how great it feels to really tune in, to focus everything on a simple movement, a single “uhh.” He quiets my world and centers my soul.
David is the stripped down version of life. He is that part in the show when the drums fall silent and the crowd sits and the singer steps into a dusty spotlight and you watch and listen to his thumb strike every string, and in doing so you hear the chord, the lyrics, the song for what it really is, maybe for the first time.
Holding someone’s hand feels pretty powerful when it’s really all you can do.
David is my acoustic set. What might be background elsewhere, he makes the melody of our friendship: Holding hands. Spoon-feeding him ice cream. Working together gingerly, patiently, to use a TV remote control.
I see people all around – myself included – constantly trying to prove their worth. David shows me we are not who we are merely because of what we say or do. We simply are, and there is no less value in just being. It’s great to have ambition, to hone skills and try new things, to tell people all of what’s inside you. It’s more than great; it’s a privilege.
David has been almost completely stripped of any real voice in this world. Cruelly, he is only capable of making inconsequential decisions – what shirt to wear, which movie to watch. He appears helpless. But his smile shows a strength many others I know don’t come close to possessing. He is brave beyond measure, and I have gained, both by watching him and by loving him, an immeasurable kind of clarity about what it means to live.
David’s song is a whisper, but his heartbeat is deafening.
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