An Advent Calendar - 10. Door#10 - The First Noel

The First Noel

I hit ‘send’ and stretched my arms over my head with a loud groan while the email containing my monthly productivity report made its way through cyberspace to my supervisor. I knew I’d hear about it the next day if I didn’t get it sent, so I had stayed late, despite already working my full shift.

I shut my computer down and grabbed my lunch cooler and briefcase. It was after seven o’clock, and I was more than ready to go home. It was Halloween—one of my favorite holidays—and I hoped I hadn’t missed too many trick-or-treaters. I knew that Will would be holding down the fort, but I loved seeing the costumes of the children that frequented our house every October thirty-first.

I couldn’t stop the scowl that crossed my features when I turned around to see my supervisor at the door to my office. What the fuck couldn’t wait until tomorrow?

“Sorry, Henry, but I really need you to do an intake before you go. You know how crazy it gets on Halloween. I think this guy will definitely need a swallow eval.” My supervisor actually looked sorry he was giving me more work. That was a first.

I sighed. Doing the intake tonight would save me time tomorrow, and if the guy had dysphagia it was important to see him immediately. “Yeah, OK. I’ll head right down.”

He squeezed my shoulder as I headed out the door, which I found strange. I looked at him and raised an eyebrow. Why was he showing concern for me now? He never had before. “Thanks, Henry. I appreciate it.”

“No problem.”

It only took a couple of minutes to reach the ER. I approached the charge nurse, who was behind the main nurses’ station with a chart in her hand. “Hey, Sheila. Tim says you have an intake for me?”

The look of concern and pity on her face had me immediately alarmed. She walked over to me and took my arm. “Forget about the intake. We’ll have someone else do it.” She paused and looked me in the eye. “I’m sorry no one told you, but he just came in…I’m sorry, Henry.”

My heartrate increased dramatically, and I started sweating and trembling. Sheila led me to one of the ER stations and drew the curtain. My worst nightmare lay before me. A team of nurses and physicians were working frantically around Will—squeezing a bag attached to an endotracheal tube, applying wires for vital signs, and administering medications through an IV.

“It looks like he’s had a massive stroke. Once he’s stabilized, they’ll send him up for an MRI and CT scan.” Sheila squeezed my arm.

I nodded, numb with shock. Fifty was too young to have a stroke. It wasn’t long before Will was being wheeled upstairs to radiology, and I was ushered into a waiting room. My co-workers all shot me looks of pity when they went by the door, and a few stopped in to offer support and words of sympathy. I called our friends and family and soon had a waiting room full of loved ones.

I was in my twenty-fifth year as a speech-language pathologist working with people with acquired neurogenic disorders—traumatic brain injury and CVAs (cerebrovascular accident, the fancy name for stroke) for the most part—and degenerative diseases such as Parkinson’s and ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease). I routinely saw people on the worst days of their lives and worked with them to help them regain both their ability to speak and their ability to eat food safely.

I tried to be a sympathetic therapist and deliver bad news with grace and empathy, but I was now thrown into the opposite role and realized that my life and the way I dealt with patients and families was forever changed.

Will was discharged to a rehab facility a month later to undergo intensive speech, physical, and occupational therapy. His recovery so far was remarkable. He was off the ventilator and thankfully hadn’t needed a tracheostomy. His feeding tube had been removed, and he was able to eat pureed solids and liquids thickened to a honey-like consistency. Both his speech and ability to swallow had been significantly impaired and, despite therapy, remained so. He also suffered from right-sided hemiplegia, which meant that he couldn’t use his right hand or leg.

Will was not handling the impairments well. He liked to be physically active, and being confined to a wheelchair was not something he was interested in. He was also extremely frustrated by his inability to talk. He suffered from Broca’s aphasia and apraxia of speech, which meant that he understood people just fine and knew exactly what he wanted to say, but the connection between his brain and mouth had been disrupted, so he lacked the ability to get the words out correctly.

How many times had I given that explanation to patients and their families? Living with it firsthand was so different from working with it professionally. My professional side wanted to correct all his speech errors and work on oral-motor exercises to help improve his swallowing ability, but I tried to be the supportive spouse and limit the amount of time we spent on therapeutic activities.

Not that I had much choice in that regard. Will was dismissive and rude to his therapists and showed little inclination to complete his exercises. I felt bad for his speech therapist, who was relatively new to the field. I think she was intimidated by my years of experience, and I did my best to put her at ease. She was doing a good job with a difficult case.

Trying to find a balance between work and being with Will was frustrating. I had taken some time off to be with him during his recovery in the hospital, but now I was back full-time and spending my evenings with Will at the rehab center until I went home and collapsed onto my lonely bed. Trying to maintain a positive attitude while being cursed and scowled at by the love of my life was becoming harder and harder to do. Something had to give.

A week after Will was admitted to the rehab facility, I entered the building to find it decorated to the nines for the holidays. There was a large Christmas tree in the lobby and a Star of David lit with blue and white lights on the wall behind the reception desk. The halls were decorated with pictures of Santa, reindeer, and snowmen, and red and green garland graced the upper portion of the walls.

I stopped dead in my tracks, as if I had run into a brick wall. During the past few weeks, time had ceased to have any real meaning. It now struck me that Will wouldn’t be home for the holidays. Thanksgiving had come and gone with little fanfare, but Christmas had always been a big deal for us. I wiped a tear from my eye. I’d have to think of a way to make it feel special for Will.

Christmas carols played on the radio as I passed the common area and headed into Will’s room. He was clutching a pillow tightly and sobbing. I ran to him and took his good hand in my own. He hated it when people saw him display emotion, but my only thought at that time was to offer him comfort. I smoothed his hair back and kissed his forehead. He took some gulping breaths and gestured toward the door. He wanted me to shut it. His mouth contorted as he tried to form the words to tell me, but gibberish came out instead.

“Fuck!” he swore. One thing he was able to do perfectly well was curse.

I rose, and as I moved to shut the door, Angels We Have Heard on High drifted down the hallway. It was Will’s favorite Christmas carol, and I now knew why he was so upset. Will’s favorite part of the holidays was singing Christmas carols. He had an incredible singing voice, and was regularly given solos in our church choir. We had an annual tradition of going door-to-door caroling with our friends, and frequently sang to the seniors in nursing homes. Now Will would be the one being sung to at fifty years old.

I returned to his beside and held him close. “I don’t know what I can say to help,” I murmured. The look he gave me said there was nothing.

“Shit,” he said.

I embraced him for several minutes before my back indicated I needed to sit up. “Would you like some water?”

Will made a face. While he had made progress in regaining his ability to eat and drink, he still needed thickener added to his drinks, otherwise he was at high risk for aspiration—food or liquid going into his lungs instead of his stomach. If he aspirated, then he could develop pneumonia, and in his condition it was potentially life-threatening.

“I can get you that stuff with the lemon or would you prefer juice?” I grabbed the laminated sheet with drink selections on it that the speech therapist had made. Will pointed to apple juice. “OK. I’ll be right back.” I kissed him, then headed into the common area and opened the fridge. The First Noel played on the radio and one of the residents hummed along with it, a smile on her wrinkled face.

I almost dropped the carton of pre-thickened juice and my hands trembled. I couldn’t believe I hadn’t thought of it before! I quickly poured the juice into a glass and hurried back to my love. I raised the bed until he was sitting upright, then assisted him with taking a few sips.

“Honey… I want you to try something for me.” Will looked at me skeptically. “Sometimes people with aphasia can sing much better than they can speak. You use different parts of the brain for speaking and singing. There’s even a therapy technique called ‘melodic intonation therapy’. Try humming with me.”

I hummed a few bars of The First Noel. Will looked at me like I was nuts. “C’mon sweetheart… give it a try. Trust me.”

Will opened his mouth and contorted it as if trying to say the words to the song. He struck the bed with his left hand and exhaled sharply in frustration.

“Don’t try to speak the words, just hum the melody.”

Will frowned and shook his head.

“C’mon… try it. You can do it, honey.”

“Fuck!”

I hummed the beginning of the song again. Will sighed in defeat and closed his mouth. An off-key hum emerged from his throat. His eyes widened as they met mine. I grinned.

“Try it again!”

Will closed his mouth again and this time a few more notes emerged, recognizable as the first few words of the carol. The first genuine smile since his stroke graced Will’s face and brought tears to my eyes.

On Christmas Eve, the residents of the adjoining nursing home, along with the patients in the rehab section, were all wheeled into the common area to listen to the group of carolers who were ready to sing for everyone. Will was seated in the front. He was dressed in a red sweater and wore a headband with reindeer antlers. It made my heart happy seeing my love’s inner child reemerging.

In the weeks since my revelation, Will had made great progress. Since he now had some success with singing, his attitude toward therapy had completely changed. He was walking with assistance and his diet had been upgraded to ground food and thinner liquids. His speech remained significantly impaired and always would, but he was able to get out more words than before.

The carolers started with The First Noel, and many of them grinned as Will’s deep voice seamlessly joined their own. I sat next to Will, holding his hand and fighting back tears. I was so grateful to have him with me after coming so close to losing him. I vowed to care for him for the rest of his life.

The concert ended with Angels We Have Heard on High. The carolers paused at the first chorus and Will’s voice rang out as he sang his solo: Gloria, in excelsis Deo!