On Valentine’s Day, I was assigned to work in the Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig‘s disease clinic. ALS is a relentless and debilitating illness of the motor nerves that leaves patients unable to walk, talk, eat and eventually breathe. And we have absolutely no cure for it, not even a shred of hope at this point. Symptoms can be managed and plans can be made for alternate feeding and breathing options. But patients, caregivers, and treatment teams know the inevitable will happen. Just not how quickly it will happen.
Each patient spend 2-3 hours in clinic. During the course of the visit, they see a neurologist, a respiratory therapist, a physical therapist, an occupational therapist, a speech pathologist, a nutritionist, a representative from the ALS association, a nurse coordinator, and a chaplain, if desired. And on Valentine’s day, they saw me. I tagged along with one patient at a time, sticking around in the exam room while each member of the treatment came in.
Her appointment was in the afternoon. I saw her in her wheelchair outside of clinic, being wheeled off a van and taken into the building. She was dressed in shades of red and pink. Was it deliberate? A few minutes later, I was assigned to room 3, and I found her there, her daughter at her side. She grumbled when asked if it was ok for me, a student, to stay in the room and observe. The first team members came in and I didn’t get a chance to chat with her before learning her story. She was in her fifties and wheelchair bound. She had received her ALS diagnosis less than six months ago. She had recently moved into a nursing home, her daughter’s house unable to accomodate a wheelchair. During the first interlude after the PT/OT specialists left the room, I was about to make conversation when she burst into tears. Tears turned into heavy sobs that soon became full-fledged wails. She fidgeted with her purse, looking for tissues. Her daughter said nothing, did nothing. She couldn’t. She was crying, too. I stepped out to retrieve a box of tissues. I moved the trash can closer to her. I sat back down. In between sniffles, she said that being in the clinic was horrible because it reminded her of her condition, that she had plans and now she would never get to any of them, that she wished physician-assisted suicide was legal. “I wanted to travel. I had so many plans. Shit.”
I didn’t cry, which surprised me. I did feel incredibly present and at peace simply sitting with her and sharing her pain. Listening to her stories – her horses she could no longer ride, her glass bowl pipe she could no longer smoke, how her van driver had preached about the Bible the entire ride down – I was overwhelmed by her willingness to share her life with me, a complete stranger. But it also made sense. I was a witness to the fullness of her life, a life that is so much bigger than a diagnosis. For the remainder of the visit, we chatted in between each team member’s coming and going. I learned a little more about the current state of health and medical options for symptomatic relief and added those facts to my medical toolbox. But more importantly, I learned more about her. We discussed our shared love of Downton Abbey and discovered we had done the same pub crawl in Liverpool and had our picture taken in front of the John Lennon statue. I scribbled a book recommendation for her on my notepad after she told me there was a county library across the street from the nursing home. It was Ann Patchett’s State of Wonder.
Two and a half hours later, the comprehensive team was done and a few changes were made to her treatment plan: a new medication to help with muscle cramps, a common problem with ALS, a note to the nursing home so she could have a glass of wine, and a plan to find a more comfortable wheelchair. I waited for the coordinator to leave the room as to be the last one with her. It might have only been two hours, it felt like a lifetime. I asked her if I could hug her. She said yes, so I did. I pointed her and her daughter to the exit. I watched them go down the hallway to the door and stop. Her daughter, who had been pushing the wheelchair, moved in front of her and opened the door while she wheeled herself out of clinic. Our clinic doesn’t even have an automatic door. What if she had been alone? How would she have managed out of clinic? I almost cried then. Medicine still has a long way to go.
And so went my Valentine’s Day. It was full of love and tenderness and tears and laughter. It was full of life and it was beautiful. I feel so fortunate.