Walking through the ICU to rangle up some business, I overheard an attending refer to the ALS guy in bed 18.
Bed 18 is a corner room, and the patient contained within was located there, I presume and hope, in order to minimize disturbances from the noisy huff and puff typically found in an ICU. ALS guy was in bed 18.
If you don’t know about ALS, here’s the skinny. Imagine your muscles stop working. The muscles in your extremities, the ones you use to perform all daily human tasks, get weaker. Then they stop altogether. In the meantime, the same happens with the muscles that allow you to swallow, then to breath, then to even move your eyes. Generally speaking, the “end of the road” for ALS is not a sudden stopping of brain activity as seen in a gunshot to the head or a cardiac arrest, but a compassionate one nonetheless.
ALS guy lied there in bed 18. His attentive wife intermittently suctioning his tracheostomy. It smelled bad in there, but ALS guy couldn’t do anything about that. He had ALS.
ALS guy used a fancy computer screen to type out words using his gaze. If you wanted to say hello, he would look at the letter “H”, then the letter “E”, then the letter “L”, and so forth, until “Hello” was spoken in a monotone, digitalized voice from the computer. It worked for him and his wife. He could also surf the web, write emails, play games, and watch TV on the fancy computer screen.
In talking with the nurses who had cared for him over the several weeks or months (whose counting right?) that he had been in the ICU, I learned that his wife attended to him nearly every day and that she even brought their young children to see him occasionally. “He doesn’t need much…just watches TV all day,” one of them told me, “He can get pretty cranky, though, so we generally leave him alone.”
I sat down next to ALS guy and introduced myself as a member of the palliative care team. I described the role of our team and asked if I could do anything for him. “I have ALS…I don’t think you can do anything for me.” His wife suctioned his tracheostomy again. I asked about pain and dyspnea. None of these things were bothering him.
We sat there for a while in silence, watching a baseball game on the TV. “I hear you have kids.” He didn’t respond, but the tracker on his computer began navigating the screen. What developed was a fifteen minute photo slideshow. ALS guy loved his children dearly.
“We just got our youngest a puppy…she’s so overwhelmed by it. She is grossed out by picking up poop, but I think it’s good for her to learn responsibility,” ALS guy carefully typed with his gaze.
I laughed, “I don’t know anybody who likes cleaning up dog poop. Did she give the dog a name?”
“Troublemaker,” his computer voice announced, and his wife laughed as she repositioned his head. ALS guy then went on to share more about his life before the onset of his disease. I learned that his mother also died from the disease, and I shared that I had also lost my dad. We talked about the lessons that our parents teach us even after they pass.
Our conversations continued like this for several weeks. I learned that his sense of smell was still sharp and that he loved the smell of lavender. I also learned that massage felt amazing. I rubbed his legs and feet with lavender essential oils at each of our visits while he carefully typed out his inquiries about life and death.
ALS guy became my friend. I, of course, learned his name, learned about his hobbies, and never once took him for a cranky guy apart from his admission that he frequently found himself frustrated by the medical process of disease: “Doctors don’t know shit about dying”.
At one of our last meetings, he produced a farewell: “Thank you for your time. I mean that. Nobody has had the patience to sit and let me write out my thoughts. I won’t forget you. It means a lot to me to have another person to chat with. I don’t get to do that anymore.”