He tried. He really did. But, he already knew his answer before she called. He knew she was only trying to help him, so he listened politely and uttered kind responses close to what he knew she wanted to hear. He knew she meant well and had his best interests in mind. He knew she cared for him deeply as they had developed a strong bond over the years. It just wasn’t going to happen. Not now. Not yet, at least. Maybe soon. The mountain seemed tall before him. He hoped that she knew that.
During it all, I sat on a nearby couch and listened with interest. I silently hoped she could convince him, and occasionally nodded and expressed background support to her efforts. But I, too, knew the answer before it happened, because I’ve lived the reality every day over the past couple of years. It’s a conundrum. It's emotionally and physically complicated. One side trying to convince. The other side hoping they would listen. One side thinking long term. The other side thinking today. I could see both sides.
Lurking somewhere in plain sight, Duchenne cared less. If I listened closely, I swear that I could hear the monster smirking, if not laughing outright.
So it was yesterday afternoon in Alex’s sun-filled, second-floor bedroom. Alex lay on his incline bed, as he has continually for the past four months. I stood alongside after repositioning him higher in his bed. We heard locusts resonating in the trees outside the windows. We heard neighborhood kids running somewhere in the distance, calling to another with utmost importance. We heard a distant lawn mover cutting the grass. Typical everyday life sounds we have come to know and accept.
Inside, we heard our watchful guard dog, Toby, barking downstairs at the very real threat of someone walking by our home. We heard Alex’s PlayStation 4 humming in wait for our monumental decision of which movie to watch. Today, was to be a father-son movie afternoon. Alex’s Batman – Arkham City video game paused frozen on the television while we discussed our options.
Then, Alex’s cell phone flashed an incoming call and played its Star Wars ringtone. I curiously glanced to the screen and wondered who would be calling on this beautiful afternoon, and saw a familiar number that belonged to the Neurology department at Cincinnati Children’s Medical Hospital. I suspected they were calling to check on Alex’s back pain and to find out if he planned to attend his semi-annual Duchenne clinic day scheduled for Thursday.
I told Alex he needed to answer the call and quickly draped his left arm above his head so he could then balance the phone on his chin, as he does to talk into the speaker phone (side note for perspective: This is how Alex positions his phone because he cannot hold the phone to his ear. If he needs to dial, he uses his tongue because he cannot reach the buttons from his hand hold and cannot raise his right arm/hand to type – it’s effective, for now, and a work in progress).
As the Star Wars theme continued, Alex glanced to me and smiled feebly. Great, he visually expressed. He knew why they were calling, too. He probably expected it as I did sometime that day. Alex sighed before sticking out his tongue, touching his cell phone, and giving a quiet greeting.
The call itself was innocent. Beth, a cardiology nurse whom we have known for over a decade, had called to express her support for Alex’s visit. She knew of his pain and fear of movement. She knew Alex had not been out of bed since early June and once since April. She knew Alex had been anxious about the long clinic day and his endurance. But, Beth also knew the Children’s cardiologists needed an update on Alex’s heart condition so they could effectively treat and ease his progression with Duchenne. She knew the Children’s pulmonologists needed to listen to Alex’s lungs and see him breathe in person so they could effectively regulate his sip ventilation and BiPAP settings. His clinic attendance was important to them and vital to us.
I sat down on a nearby couch and listened, letting the two longtime friends reconnect.
Beth started by telling Alex how much she missed him and couldn’t wait to see him. She told him how EVERYONE in the Duchenne clinic asked about him in their staff meeting that day, when they heard Alex was on the Thursday schedule. She said Courtney, a nurse in neurology, couldn’t wait to see him and laugh together as they always do. Beth said that Mark, a social worker who had been calling Alex over the previous couple weeks to help his anxiety, couldn’t wait to see him in person and continue their ongoing Star Wars conversations. She said Kenny-Benny in cardiology check-in looked forward to catching up with Alex, share movie reviews, and extend fist bumps, as they always do. She added that doctors in cardiology, pulmonary, neurology, endocrinology, physical therapy, rehab, and palliative care all voiced their desire to see Alex - not just to check on his health and well-being, but to see is smile and share his laughter! Beth told Alex the entire Children’s staff considered him family and would give him a big cheer when he arrived because they knew the difficult time he’s had with his back pain. Most of all, Beth told him she couldn’t wait to give him a hug.
Heck, she had me fired up for clinic day!
But, knowing Alex’s severe back pain, I didn’t think a clinic visit would happen anytime soon. Alex had expressed reservations for months as the clinic day approached. The closer the day came, the more resistance Alex subtly provided. Still, because he knew of the clinic’s importance, Alex left open the possibility of him getting out of bed and traveling to the hospital. And, honestly, after hearing Beth’s enthusiasm, I wondered if she maybe tipped the scales towards a visit. Alex’s smile while talking with her seemed to indicate her success. I sat astonished and thrilled!
“You know who can’t wait to see you?” Beth explained and then continued before Alex could reply. “Courtney! She heard you were scheduled for clinic tomorrow and beamed with excitement!”
Balanced on his chin, Alex’s cell phone wobbled unsteadily as he smiled. He chuckled with pride. “You mean Sarah Silverman.”
“Courtney.” Alex answered promptly. “I always tell Courtney she looks like Sarah Silverman.”
“Oh! I know, I know! She brags about that all the time! You always make her day!”
Awkward silence followed as Alex struggled to hold his ground and phone, while thinking of Courtney.
“You know, we ALL can’t wait to see you tomorrow!” Beth continued.
Alex did not respond immediately. He knew what she was saying.
Beth waited for any response. Hearing none, she continued hopefully. “So, you’re coming right?”
Alex did not reply. He looked to me and sighed with frustration at the decision point Beth had so boldly introduced. His silence indicated to me that he remained non-committal. Still, I hoped he would agree to go to the clinic and nodded my head that he should tell her so.
Alex held firm and waited for Beth to speak.
Filling the silence, Beth added another line of encouragement saying that Mark in social work told her he has had great conversations with Alex over the past couple of weeks and really looked forward to continuing the conversations in person. Alex just stared at me and pleaded for me to bail him out. I let it ride because we were SOOO close to committal.
“So, you’re coming in tomorrow, right?” Beth pressed again. “We’re going to be seeing you, right?”
Alex tossed his head back in exasperation. You could see him thinking. Why are they making this so hard? Don’t they know I have pain? Don’t they know I just can’t? Doesn’t anyone hear me?
“I don’t knowwwwwww. Maybeeee,” he conceded feebly. You could tell he had hoped she heard his level of enthusiasm and would offer him an off-ramp. She didn’t.
I smiled and nodded my support for him to see all his friends in the clinic. I sat on the couch blindly happy and amazed at what Beth had been able to do – something I hadn’t been able to do for months! The maybe was as much commitment as I had ever heard from Alex. I was as hopeful as anyone when they ended the call.
You see, at 20 years old, Alex is facing a difficult road the doctors know all too well. They’ve seen it play out before and work diligently to delay Duchenne’s advance. They strive to support the young men in whichever stage they may be in, but the twenties are a pivotal period as things get real. The doctors can’t help if they don’t know exactly where young men are along the journey that becomes increasing hazardous and vital with time. Nearly as important, they do not want Alex to give up the fight. At all. Because without that fight, Duchenne is a short road.
But, in my mind, he did it! With Beth and Mark’s help, Alex had started his quest on the mountain before him! He faced his fear and took the important first step forward. I sat energized and waited for Alex to speak first. This was huge!
Then, after the call, Alex displayed emotions I had rarely seen before. His arms had fallen limp by his sides and his phone had fallen onto his chest. His head arched back and his eyes fixed somewhere on the ceiling above. I saw frustration, exasperation, and fatigue of his back pain. I saw worry, concern for the future, and touches of despair. I saw anger and resentment that no one was listening to him. I saw concern he would be letting his doctors down if he did not go to clinic. For the first time ever, I saw doubt in his ability to stay positive. The scene was heartbreaking.
I asked if he was okay.
Alex did not respond and only stared at the ceiling. I saw tears glossing over his eyes.
I rose from the couch and swiftly crossed the small space between us. No need to ask again. No need to use Dad wit to lighten mood. This was clear, heavy, and immediate. This was real! He needed human connection and reassurance for his feelings. He needed support no doctor could give. I bent down and hugged him tight.
While lawn movers continued their work outside and neighborhood kids moved on to another yard, Alex’s eyes clenched and the tears fell fast. He couldn’t speak. He could barely breathe from his sudden and deep surge of emotion. His arms remained limp at his sides, unable to return the hug, though I knew they did. His chest heaved against mine. Our heads pressed together. Our chins rested on each other’s shoulders. Tears poured.
“It’s okay, Bud. It’s okay.” I continually whispered into his ear. “We don’t have to go if you’re not ready. We can just reschedule for another time. It’s that simple.”
All I could do was hold him tight, tell him that it’s okay and that I understood. I assured him I would never let go and that he could always count on Mom and Dad (and Kaitlyn and John). Still, the tears flowed and his breathing quickened and stopped uncontrollably. I reached to retrieve his sip ventilation that had fallen away and offered it to his mouth. He took a few quick breaths and then leaned into me as best he could as the emotions flow. We stayed connected like that for a long while. It was a shared moment I’ll never forget.
Soon, through his tears and chest heaves, came the first words.
“Don’t they understand? Don’t they know how much I want to see them? Don’t they know how much my back hurts? Don’t they know…” he faded in frustration and then cried with conviction. “I just can’t, Dad! I just can’t!”
“I know. I know.” It was all I could think to say.
It’s been a hard couple of years for Alex. He missed his high school graduation last year because of severe back pain. He has missed countless doctor’s appointments for the same reason. He had been out of bed only a handful of times (once since April) over the past year as his back causes him near constant discomfort and pain. His muscles are tight and his bones ache. Palliative Care has prescribed patches, muscle relaxers, and opioids to help control his pain, but these work variably and with unpleasant, mood-changing, side effects. We have tried heating pads, gels, and other ointments to relieve his discomfort. We massage him daily and reposition him often to bring him comfort. But, nothing helps completely. Nothing. The medications only mask the pain temporarily, allowing it to return seemingly at will. It seems, like Duchenne itself, the pain lies waiting to disrupt life whenever possible. It’s enough to drive us crazy and sometimes does.
For Alex, his pain hasn’t affected him to this emotional degree until yesterday. While the pain surely dictates his life and his activity, he has learned to live with it the best he can as life moves swiftly outside his window. Sure, he would love to jump out of bed and run with his friends, peers, and anyone like he sees in movies, games, and television. Sure, he would like to walk, run, jump, etc. like anyone and everyone that surround him. Sure, he would like to visit friends and go places and travel and do anything, because the list is long. Sure, he would love to find a girlfriend and go on dates, picnics, and concerts. Sure, he would love to wrap his arms around someone for a hug.
But, he can’t.
Instead, he lays in bed every minute of every hour of every day, going on four months straight now. He watches television and movies, and laughs frequently. He plays video games and board games on occasion, and enjoys them immensely. He spends every waking hour surrounded by the same walls, ceiling, and windows and never complains. He hears the same sounds outside like locusts, lawn movers, and kids playing, and doesn't let it affect him. He hears Mr. Field bouncing a basketball in the driveway or rolling his garbage cans on trash day or talking with family in the driveway, and smiles. These are sweet sounds to Alex. He enjoys every familiar sound and loves life more than most people we know. He calls for our dogs and cats to jump onto his bed so he can pet them using only his fingers. Though his world is small, his heart is large, his smile is wide, and his love is genuine. I realize many know this, but it bears repeating because we should all learn from his approach to life considering his limitations.
After a while, Alex asked for a tissue. I pulled away, retrieved one from a nearby box, and then placed a tissue in his hand. I knew he wanted to do it himself. I knew his desire to be independent as his mobility decreased. I did not want to take THAT desire away from him. I raised his hand to his face so he could wipe his eyes and blow his nose (see picture above).
A few minutes later, my cell phone rang. It was Dr. Sawnani, Alex’s pulmonologist and all-time favorite doctor. He knew Alex was having pain and, like Beth, wanted to offer his support and encouragement for the next day’s clinic visit. He listened attentively to my recounting of our prior conversation with Beth, and the tears that still followed. He understood completely; he had seen it before. He knew Alex would not be coming in to clinic the next day.
Dr. Sawnani was noticeably worried for Alex, but knew this was not the time to push him. He knew Alex was overwhelmed with worry. He knew Alex needed time and, at another point, some strong encouragement to get the treatment he needs. Now was not that time.
“You know,” Dr. Sawnani continued. “I adore Alex. Like many of the Duchenne kids I see, he exemplifies how to live. He is so positive and upbeat! I just love him! If he needs a little more time, let him have it. He needs to hear that.” I concurred.
He paused before continuing.
“You know, Duchenne is such a horrible disease. I hate it. Sometimes, I wish I did something else because it is so exhausting and so heartbreaking to witness the emotional and physical toll upon these kids and families. Sometimes I wish I wasn’t a doctor so I wouldn’t have to see this progression every day. EVERY DAY. It is so hard.” He paused again as his voiced cracked with emotion, and then continued quietly. “But then I think of the kids and their positive outlook to this damn disease. Please tell Alex that I am here for him. That WE are here for him. Hopefully, sooner rather than later. Assure him we can help him.”
I didn’t respond immediately as I considered the future conversation with Alex.
As if Dr. Sawnani read my mind, he said. “I know it will be a hard conversation. I know Alex is in pain. But, we must see him to help him.” The remaining unspoken words couldn’t have been clearer.
I sighed heavily to the reality. “I know.”
Damn this disease