A few weeks ago, I had the chance to visit Whitney again. This time, he was going to the hospital to have his jejunostomy tube (“J-Tube”) replaced. Whitney can no longer eat via his mouth, esophagus and stomach; but his J-Tube allows him to ingest liquid foods delivered directly to his small intestine.

To tolerate the trip to the hospital and the procedure itself, Whitney is administered IV Ativan, a drug that temporarily opens up what is otherwise a keyhole of an existence. He can take it only but rarely. Otherwise, he would habituate. As I wrote in my last piece:

Many people with ME have some degree of sensory processing difficulties. Like many with autism, they may find it difficult to tolerate light, sound, vibration or touch. Whitney’s sensory processing challenges are especially severe, but the Davis-Dafoes found out several years ago that the seizure drug, Ativan, allows Whitney to temporarily process sensory information in a more manageable way. This meant that while Whitney is on Ativan, he can use a form of signs and gestures to communicate his thoughts and needs, and be signed to in return. I call it WSL: Whitney Sign Language.

(To understand all that communicating with Whitney entails, read “Meeting Whitney.”)

I arrived at Whitney’s house at 10:30am. The EMTs were waiting to take him to the hospital, but he was refusing to leave until his dad, Stanford geneticist Ron Davis, had found two things: his beloved iPod, circa 2004 or 2005, which had been sitting disused in the basement for years, and a pair of cables to charge it.

Whitney, due to his very severe ME, is too sound sensitive to listen to music. Even if he were not sensitive to the volume, his sound sensory processing challenges would make it impossible to listen to something as complex as a song. Why would he need an iPod?

His parents were perplexed. “Sometimes, there are these things that he gets fixated on…” his mom, Janet Dafoe, trailed off. It didn’t make sense. Even if they found the iPod and they found the cables, he wouldn’t be able to listen to the music. But Janet has long grown used to things not making sense. “This disease!” she said.

Janet emerged from the house with the iPod wrapped in a brown towel. Precious cargo. At this point, we were running an hour late. Janet usually rides with Whitney in the ambulance. “He wants you to ride with him,” Janet said. So I did.

Watching Whitney leave the one room where he spends nearly every minute of his life for these quarterly trips to the hospital is to see, perhaps, how we would all encounter the world if every time we went outside was a miracle. He closed out his eyes and stretched out his arms, the better to soak up the warmth of the sun. He ran his fingers along the hydrangeas he planted many years ago, now stretching so high, their tops kissed the gurney.

When we got to the hospital, they brought Whitney into a special room. One of the first things he asked was that his iPod be charged. Janet carefully handed me the brown towel. I carefully unwrapped it. Whitney motioned to us to be careful. “Don’t worry, we’re being careful,” I said. I started digging around in a duffle bag until I found a pair of brand new charger cables.

“The last time he had Ativan, he asked Ron to order these cables on Amazon,” Janet explained.

Wow. Just to be clear, this means that several months ago, the last time Whitney was on Ativan, he asked for charger cables for a 15 year-old iPod so that the next time he was on Ativan, a few months later, he could ask someone to charge his iPod. There is Whitney Sign Language (WSL) and there is Whitney Time (WT), I thought.

When the iPod had charged, Whitney motioned to it, signaling I should bring it to him. I did.

A few minutes later, he motioned to Janet to leave the room. “OK, OK, I’m leaving,” she said. She later told me she thought it was wonderful that her son had made a friend, that there were things he’d want to share without his mother hanging around. I could only smile. That was part of it, but it wasn’t all of it.

After Janet walked outside, Whitney held his iPod in one hand and traced out the letter “A” on his hospital sheets.

“A?” I asked.

He nodded his head, “Yes.” I had no idea what he was talking about.

He then pointed the iPod menu.

“Artists?”

He nodded his head again.

He traced out more letters.

“L…E…?” I asked.

Again, he nodded his head. He tried to start scrolling through the list of artists, but it was too much for him to look at the screen, scroll through the options, think about what he wanted, read what was there, and push a button, all at the same time. We don’t think of these as separate functions requiring multiple parts of a well-oxygenated brain, metabolizing energy, releasing neurotransmitters, regulating blood flow, and talking to each other, nearly at the same time, but they are. For people who are well, it’s a fluid experience. For people like Whitney, each piece requires effort and coordinating them all at once is impossible.

He motioned for me to do the scrolling for him so I did, holding the screen outside his field of view so as to not make him dizzy.

“Led Zepplin?” (Ha! Led Zepplin probably isn’t even on Whitney’s iPod but I guessed a few artists that were not the right answer the first one or two times.)

“Leonard Cohen?” He nodded his head vigorously. Success!

He traced the letter “A” again.

“Album?” I asked. He nodded his head.

“S…O…”

Songs of Love and Hate?” I asked. He nodded is head. OK, I get where this is going.

In this way, Whitney used his iPod to relate to me six songs. Six songs that I think he must have thought about very deeply in between Ativans, that perhaps he listened to in his head in those long nights spent alone in bed, although I imagine even playing back a song in his own mind could be too much for him. Sometimes, he couldn’t remember the name of the album or the song, so he would use Whitney Sign Language to help convey the hook or a lyric he recalled. I would guess and guess, and Google and Google until I stumbled on the right song. I’d read him the lyrics and he’d indicate, “Yes, that one.” Or “No, that’s not right.” Sometimes he’d ask me to keep reading the words out loud, like a poem, so (perhaps) he could better remember what the song he had not heard played out loud in years sounded like.

He told me to take these six songs and make a playlist on YouTube. He wanted me to share that playlist with our community, I think to give patients hope but more than that, to express to the world something of what Whitney loves and what Whitney feels. He is, after all, an artist. And a well-curated playlist is its own work of art. He’s been curating this one in his mind for years.

He told me to tell you do not watch the music videos. That would introduce an element to the songs that he does not intend. Listen to them, all the way through, maybe with your eyes closed.

I asked him if he wanted me to tell you what they mean, a sort of Artist’s Statement. It was clear he had a specific intent. He said no, it is for you to feel and interpret for yourself.

“Why,” I asked. “Because it’s art?” He nodded. “And Art is to be shared and experienced, not explained?” I asked. He nodded.

“But…tell them my Dad is Superman,” he signed, flying his hand through the air.

Here is Whitney’s playlist:

PS––Whitney is taking Ativan today, Monday, July 8th. I can’t be there but I am sure he’d love to hear what you feel when you listen to these songs. Post a comment below or on social media #WhitneysPlaylist. I’m sure he’d love to hear from you.

#1

Leonard Cohen
Songs of Love and Hate
“Avalanche”

#2

Radiohead
Kid A
“How to disappear completely”

#3

Jonsi
Go
“Tornado”

#4

The Flaming Lips
The Soft Bulletin
“Waitin’ for Superman”

#5

The Velvet Underground
Loaded
“New Age”

#6

David Bowie
Heroes
Heroes”

Maker of @unrestfilm. Plotter of revolution @MEActNet. Wife of @owasow. http://jenniferbrea.com