On occasion I forget that I have ALS. More accurately, I forget that I have significant ALS-related disabilities. A prime example occurs when I try to speak after I have been writing for a while. I open my mouth, fully expecting to speak with the same fluency I have with writing, and I am stymied by the effort it takes to produce a garbled phrase. 

Likewise I have learned to take my time trying to wake up in the morning. Since I am able bodied in dreams, waking abruptly can set me up for quite a jolt when I cannot move my left arm or roll over. 

Mornings are without question the hardest.  My mouth and throat are bone dry from the noninvasive ventilation.  It is impossible to swallow and my lips feel glued to my teeth. My muscles are super stiff from lying in the same position all night, and a spasm from a simple yawn can spread across my entire body, turning me into one big contorted spasm. Suffice it to say that I have a hard time focusing on anything other than my body. I suppose the good news here is that I am totally in the present moment.

I have learned it’s best to take it slow in the morning and be patient.

Gratefully, my day starts with extensive stretching and contemplation. Peter likes to gab while he stretches me out. Deon is generally silent and focused.  

This morning was Deon’s day, so I invited Franz Schubert to join us. I wondered how his music might shake up the challenging routine that starts my day.

Schubert’s Symphony No. 9 in C major, known as “The Great Symphony” is one of my all-time favorites. I have been listening to it since college when I discovered the LP late one winter night in the basement of Andrews’s Library. Forty years later, without fail, I hear something new every time I listen. Subtle trills added to a variation. A clarinet doubling the flute. Trombones for God’s sake.

Schubert wrote the Great Symphony near the end of his life. Sadly he never heard it performed. Despite being treated with mercury for syphilis, he died of typhoid fever in Vienna on November 19, 1828 at the age of 31. Franz Schubert made so little money from teaching music that he wrote songs for the love of his life, a soprano, instead of marrying her.

Orchestra conductors of the day are said to have laughed when shown the score of Schubert’s ninth symphony. Apparently it was audaciously challenging for the violins and far too long for the audience. It took another musical giant, Felix Mendelsohn, to find the score and conduct its premiere ten years after Schubert’s death. Robert Schumann, yet another contemporary great, reviewed the performance, famously lauding the work for its “heavenly length.”

But let’s return to this morning.

Deon opened my Spotify favorites, teed up the Philadelphia Orchestra under the baton of Wolfgang Sawallisch, and cranked the volume to fill the room with sound.

The symphony begins with a haunting solo French horn which today doubled as a call to contemplation, like the ringing of a singing bowl. 

I felt my back and my limbs settle into the bed and observed the exhausting overnight stiffness become the stillness of contemplation. I wondered — could I listen to the music with my whole body?

Closing my eyes I waited for the familiar musical themes to wash over me. The first thing that I noticed was the change in the pesky, constant muscle twitches called fasciculations. Ordinarily I perceive these as the harbingers of nerve cell death they represent. This morning the jumpy muscle fibers were dancing. I think I laughed out loud.

As the symphony continued, I found myself effortlessly moving with the violins, feverishly nailing the whirling counter melody presumed impossible at its conception. I swayed with the conductor, easing the players into a tender mezzo piano. I sat in the audience mesmerized. I felt grateful and happy and free.

I continue to learn this lesson, or discover its truth, over and over. Let go of the heavy darkness, the meanness, the ugly, and the light, the good, the beautiful are always right there. The face of God.