(Essay originally published in Schwa Fire in Dec. 2014. Photos by Max Cooper.)
When I met Wally just after moving to Asheville in early 2012, he was still deeply engaged in media reform advocacy, his life’s work. The nonprofit he ran was a unique blend of Internet service provider and progressive local news source for western North Carolina.
In the help-wanted ad I’d read, Wally described himself as a handicapped writer. He was seeking someone to help him with his work—writing articles, supervising the radio station, applying for grants—as well as with daily needs like meal preparation, cleaning, and dressing. While I had no particular interest in being a caregiver, I needed a job to pay rent while attending grad school and was intrigued by his desire for a helper with “superior” verbal and critical thinking skills.
Part of my routine as Wally’s assistant was to help him walk outdoors to a park bench to keep up his mobility. Sitting on the bench one day, as we talked while he rested his legs, I was surprised to notice the vibrations of his voice traveling into my back through the wooden boards behind us. I had never noticed the vibrations of anyone else’s voice through a park bench before. And Wally wasn’t speaking particularly loudly, so why did his voice reach out to me like that, just then?
I do know that voice has always been important to me; I’m a singer-songwriter and an independent radio producer. As part of the interdisciplinary MFA program I was in at the time, I was immersed in audio work and readings and experiments on body awareness. I may have been more sensitive to sound since I’d recently come back from playing and teaching music in West Africa. Or maybe the fact that we were in Asheville, said to be located near energy vortices that make it a place of heightened spiritual power, had something to do with it. No matter what the reason, the vibrations of his voice called out to me to pay attention.
If you’d heard Wally’s voice when I met him, you wouldn’t have guessed that he’d been diagnosed with Amyotrophic Lateral Sclerosis (ALS) a year and a half earlier. The disease has been in the public eye recently, thanks to the Ice Bucket Challenge. It’s classified as a neurodegenerative disorder, but at a cellular level, one might also call it a communicative disorder: Motor neurons, vital communication links between the nervous system and voluntary muscles, become unable to send impulses to muscle fibers. Muscles don’t “hear” the brain’s messages to get working, so they wither away from lack of use. This communication breakdown is mirrored in patients’ lives: In later stages of the disease, speech usually becomes slurred or nonexistent.
My grandfather died of ALS before I was born, and I’d heard stories of how he had to rely on others tracing their fingers over an alphabet card to communicate; he’d respond with a blink or raised eyebrow. My missed connection with my grandfather from this same illness was an added pull for me to take the job as Wally’s assistant. But Wally seemed far from this stage when I met him; his voice was still strong. His speech, though Southern-accented and slower than I was used to, was driven and alive. Also thoughtful and kind. “Bless your heart,” he’d say, and mean it.
It was Wally’s arms, and to a lesser extent his balance, that revealed that something was wrong. He couldn’t use a fork, for instance, or button his shirt. One day, my job involved setting up his head mouse, which he used in conjunction with a microphone and voice-recognition software to navigate and type on his computer without the use of his hands.
Most ALS patients die within three to five years of diagnosis. But rather than dwelling on where he was headed, Wally was always thinking positively and staying in the present moment. When I arrived at the back door of his house for my interview, I remember his cheerfulness and the unabashed way he reached out for a handshake with his left hand, the only one he could still lift. He felt blessed, he told me later, to have lived a very full, active life. Still, there were things he missed: photography, writing with a pen, waving hello to his neighbors.
Wally and I got along extremely well. I gained a deep appreciation for his work, and the more mundane tasks of tying his shoes, buttoning his shirt, and helping him stretch were perfect backdrop to great conversations. With my graduate studies often serving as a starting point, we spoke of ideas, books, and experiences. He’d been an avid contra dancer; I’d done an ethnography on the dance. He knew Morris Berman, the author of the most influential book I’d read that year in my investigation of the mind-body split. We both had an interest in intentional communities. As our exchanges circled deeper, I felt a pleasant warmth spreading inward.
At first, knowing how serious ALS was, I was reluctant to acknowledge what my body was telling me. But there were so many uncanny connections in our thinking and our past histories that kept being revealed, the resonant frequencies of our intermingling voices wearing down our outer layers as a river erodes a bank. After years of searching for a sense of belonging in other cultures, in Asheville I’d finally stumbled upon a feeling of everything coming together. I realized that Wally was at the core.
Over email, Wally and I discovered that our growing feelings for each other were mutual. And just two months after meeting him I had a vision (the first of these in my life, too) of us having a child together. Skipping over the obvious impracticalities of this plan—his illness, the reaction from some of my family members, and the challenge of shifting from employee to partner—I will say of this only (in serendipity-infused local style): “And so it was, y’all.”
Within a couple of months, I was pregnant.
Wally was a natural father, exuding warmth and affection to our baby even though he couldn’t pick her up or change her diaper. Soon after June’s birth, though, his speaking ability began to decline rapidly. By the time June turned one earlier this year, just as she was starting to say her first words, it was hard for a lot of people to understand Wally’s speech.
As his intelligibility began slipping away, he began having a harder time writing, too. In the past he’d use his head mouse to move a cursor around his computer screen, at which point he’d simply talk into his microphone, and the voice-recognition software would type his words for him. But the software could no longer understand him, so now he had to use the head mouse for both navigation and typing. He’d move his head slightly, and the camera attached to his laptop tracked his movement by focusing on a reflective dot stuck to the bridge of his glasses, gliding the cursor over letters on an on-screen keyboard. To select a letter, he stepped on a switch that was Velcroed to his wheelchair’s footplate.
This hunt-and-peck method was very time-consuming, not to mention tiring. Wally often preferred assistance from somebody else to type things. Up until a couple of months ago, I could usually understand quickly what he wanted to write, even when the software was befuddled.
“How does your voice feel?” I asked him one day last February, after helping him type up an explanation of a recent, frightening episode of shortness of breath to present to doctors at an ALS clinic he would visit later that week.
We’d heard that speech therapy isn’t recommended for ALS patients. Unlike with other illnesses that affect oral communication, exercising the muscles used in speaking could actually make Wally’s symptoms worse. At the clinic, I asked the speech pathologist to explain.
It seemed that there was nothing we could do about Wally’s declining speech. And nothing we could do about the strain that his increasing needs were placing on our relationship, either.
Wally needed my help to turn over at night; June would also periodically wake up crying and need to be soothed or nursed. Dinner was another juggling act: I would reach over a nursing or squirming June to feed Wally, while also trying to maneuver some bites of food to my own mouth. His increased difficulty with talking meant less conversation, and, with the exception of interacting with June, fewer possibilities for resonance or connection between the two of us.
Around this time, we heard a segment on National Public Radio about an ALS patient who had done some voice banking, recording his voice so he could use the words and phrases later, when he couldn’t speak. Later that day, Wally asked me to get out my audio recorder so we could record some phrases that might come in handy later on.
We did this once, for about an hour, Wally improvising things that seemed important off the top of his head. When he ran out of phrases, we slipped into conversation. I thought I’d recalled him worrying that June might imitate some of his new speech habits and strange noises, like grunts, coughs, or an animal yell that emerged when he yawned. But when I asked him about it, he said he wasn’t concerned about June picking up bad habits from him. She’d have enough models of proper speech from which to learn.
“Are you concerned?” he asked me.
“Junebug,” Wally calls affectionately to one-year-old June. “Dada,” she responds in a charming soprano.
“Junebug,” he repeats, whispering. “Dada,” June whispers back, mimicking his modulation without skipping a beat.
Their familiar call-and-response game soothes and connects father and daughter, when Dada can’t hold her on his lap or read her books as he’d like. The joy of this exchange also lifts for a moment the weight I feel pressing down on me, the weight of a hundred things to do, a hundred needs to be met, but never my own.
As I prepare this article in the fall of 2014, Wally doesn’t say too much. Speaking is a struggle for him physically, and what phrases he does enunciate can be hard to understand. His “Junebug,” for instance, now sounds more like “Zhubah.” The effort is such that he saves his verbal communication for only the most important messages.
One-and-a-half-year-old June doesn’t care about his pronunciation. She often looks to her father for approval or to see his reaction to what she’s doing—wiggling her hips to music in a commercial, say, or building a tower of blocks. It’s touching to observe June and Wally communicating frequently with facial expressions and eye movements.
Like June’s current vocabulary, most of Wally’s communication now is nouns: Urinal. Coffee. Speakers. Fan. My arm. Ventilator.
In addition to Mama and Dada, some of June’s early spoken words were book, cracker, bear, milk, apple, bug, window, and bike.
For her, the names of objects and individuals are easier to learn than, say, verbs, as her grasp of the English language system is just starting to solidify. Nouns are, as Dedre Gentner wrote in her natural partitions hypothesis, “highly cohesive collections of precepts.” For Wally, focusing on the nominal terms, with their host of embedded associations, means having to enunciate fewer words to be understood.
As his condition worsens, Wally’s care regimen is constantly shifting and becoming more complex. In the past year, he’s begun using a ventilator machine nine hours per day, up from two hours, to ease the effort of breathing. Through the feeding tube that was surgically inserted into his stomach late last fall, he’s moved from one to three cans of formula—most of his nutritional intake. When he eats real food, he takes at least several minutes to chew a small bite, and sometimes chokes on a bit of it.
“Juice.” says June, hearing him cough, knowing that Wally wants some to clear his throat. Juice is a word in both of their lexicons.
Yesterday, I heard June say her own name for the first time. When the ideas she wants to express are too complex, she invents her own terms for things:
“Dai” means she wants to get up on the chair or couch.
“Boop” means she wants me to turn on the lamp or stereo.
Wally is also having to improvise new ways of communicating. A double blink of his eyes means I should take off his ventilator mask. In response to questions, we’ve agreed he’ll wink his left eye for yes, right eye for no. We’ve also toyed with the idea of learning Morse code so he can spell out words by blinking in dots and dashes.
With his head mouse now nearly too taxing to use, Wally recently acquired an eye gaze device, basically a small camera that connects to his laptop. Sensors track the movement of his eyes and register the position of his gaze, enabling him to move the cursor around the screen and select icons, menu items, and letters by using only his eyes. He chooses a letter by keeping his eyes fixed on it, or by blinking after he gazes at it.
So far, though, the device has been hard for him to get used to. He has yet to feel comfortable with it and hasn’t seemed motivated to practice. There’s the challenge of the initial learning process, coupled with our difficulty calibrating the sensors due to his glasses and hazel-colored eyes (the sensors prefer dark brown).
And then there’s Wally’s endearing but trying optimism, often veering on denial, of not wanting to acknowledge or plan for the next step in this downward slope of illness. Moving him, for instance, has literally become a strain for me and his other caregivers, yet he hasn’t wanted to get a hydraulic sling lift to assist with transfers to and from his wheelchair, preferring to risk injury and rely on the last vestiges of his remaining muscle capacity. His tendency to focus only on the present moment doubles as a survival strategy: For one thing, he has yet to suffer from depression like many ALS patients.
For me, as his partner and caregiver, Wally’s refusal to look ahead, even to dinnertime, or to make plans to cover his future needs, can be extremely frustrating. At the same time, I admire his perpetual ability to look on the bright side and recognize it as a philosophical and spiritual choice.
As for the eye gaze device, I think there’s more to Wally’s reluctance to use it than the steep learning curve and his focus on the present moment. As Walter Ong writes in Orality and Literacy, “Sight isolates, sound incorporates. Whereas sight situates the observer outside what he views, at a distance, sound pours into the hearer.” The eye objectifies. It says, you are over there; I am in here. Fundamentally, blinks and eye movements don’t resonate. Lacking sound waves, they can’t have the same impact as speech does. I doubt that even someone especially attuned to visual stimulation can experience these gestures as viscerally as I did the vibrations of Wally’s voice through that park bench when we first met.
Living with ALS has been compared to existing within a glass coffin. You can see everything, make all the connections to what is going on cognitively, but your body is trapped. Your words, too. Being reduced to his eyes for communication, having his “voice” be vibrationless, will be perhaps the most significant loss of human connection for Wally—and our relationship—yet. At a minimum, it will be an inarguable acknowledgement of the progression of his illness and the growing unresponsiveness of his body, and one more step toward being locked in.
At home one day, in a lull before June awakens from her midday nap, I ask him, “How do you experience your recent communication changes, your increased difficulty speaking? How do they feel to you?”
Wally thinks and eventually says, “A regression.”
“To childhood?” I ask. “To a toddler like June, just learning language?”
Wally frowns and doesn’t answer. There’s such a large disconnect between his cognition, vibrant as ever, and what he can express. Whereas June is just putting together how the words she’s learning connect to things in this world, Wally’s mind already teems with meaningful words, relations, and ideas, many of them trapped now, requiring too much effort to get out.
Back in February, Wally had me record him saying: “My hearing is fine; you don’t have to speak loud.” An old friend who had just come to visit had instinctively raised his voice as though Wally would have trouble hearing or comprehending. Many others have done the same since.
When this first happened, I understood Wally’s annoyance at being addressed as if he lacked capacities that he still had. But I also remember feeling a refreshing twinge of validation at the friend’s booming: “How have you been doing?” The increased volume, after all, was an implicit acknowledgement of Wally’s declined state. Things were not normal, it implied.
“No, this is not normal, and it’s not all right!” My inner voice longed to chime in. The fact that I’d taken on the roles of caregiver and full-time mother knowingly did nothing to ease the strain I was feeling. But for the most part, that voice remained buried. Wally did not like to hear me complain, and who was I to pine after my own ignored needs when I was able-bodied and Wally, so incapacitated, remained cheerful? His friend’s elevated tone was a subtle reminder: Maybe I had reason to be stressed out.
Out for a walk in his power wheelchair one recent sunny fall afternoon, we ran into a neighbor who stopped to chat. After a few moments, my attention distracted by June, who was picking berries off a tree and putting them in her mouth, I looked up and noticed the neighbor’s polite but puzzled expression. “What?” I asked Wally, who responded with a string of hard-to-decipher sounds. “He says he feels like he’s speaking a foreign language,” I relayed. In most of Wally’s encounters these days, I end up translating almost all of his side of the conversation.
When I happen to be alone and cross paths with people who ask about Wally, I assure them that his spirits are good and that, cognitively, he’s all there. I trust that this is true—that Wally’s old self, the person I fell in love with, is still present. But our loss of connection due to his decreased ability to communicate is hard. For one thing, he asks fewer questions now. When I ask a question, I often wait what seems like a long while to get a couple-word response—all he can muster. Deprived now of most of his previous activity options, he often watches television, an interest we don’t share. Seeing him stare at the screen, I feel bitterness slip under my tongue and loneliness gnaw at my belly.
I believe Wally and I will always share an awe of the strength of the mysterious pull that drew us together in such unlikely circumstances. There are moments—affectionate glances as I take off his ventilator mask, an occasional cuddle as I help him off the toilet—that remind us of what was. But without the fire of exchanged stories and ideas to keep us going, it’s pretty clear that our primary connection now is June.
Wally’s deterioration makes June’s perpetual learning of new words and phrases, indeed her very being, stand out as the miracle that it is.
“Hello,” I heard her say yesterday. “Almost.” “Everywhere.” “Bacon.”
“Here we go!” is one of her favorite and most impressive expressions. She’s always ready for a new adventure.
In some ways, I see June picking up where Wally left off. With each new word, I know that she has myriad new connections and understandings with which to interact with the world. As I mourn the loss of the conversation that drew Wally and me together, I take solace knowing that his voice lives on in our child.
