I Am A Person

Paul Kalanithi’s beautiful book When Breath Becomes Air will move you long after the closing pages. There is one small story, however, that continues to live with me since reading it more than a year ago. It’s actually just an anecdote to support another point, but it stands out among others in the book for me:

“I thought back to med school, when a patient had told me that she always wore her most expensive socks to the doctor’s office, so that when she was in a patient’s gown and shoeless, the doctor would see the socks and know she was a person of substance, to be treated with respect.”

The sentence could very well have stopped at “… and know she was a person.”

For weeks leading up to the spring of 2015, my home was the fine hospitals of Birmingham, Alabama, where I fought to regain my life (or really to maintain it at all, as I would come to understand later) from what was described as a myasthenic crisis. The term myasthenia gravis had only entered my family’s vocabulary a few months earlier, and a December thymectomy to remove the gland and its tumor (thymoma) had been successful. But when whatever went wrong did, I found myself going from unable to swallow and barely able to speak to unable to hold my head upright or, eventually, to breathe. I literally walked into the neurological intensive care unit under my own power (the nurse said that was usually not how her patients came in) and in a matter of days was on a ventilator.

Various types of treatments (IVIg, plasmapheresis, oral and intravenous medicines) brought me to a place where I was ready for inpatient rehab. I was moved to another floor of the hospital, finally out of ICU after several weeks, and into a unit where the work would begin.

Speech therapy helped me start swallowing and speaking clearly. Physical therapy helped me walk and gain strength in my arms. But it was the occupational therapy that brought me face to face with my humanity.

The first day of these efforts, nurses wheeled me into a large room where several other patients were already at work with techs at various stations, sliding folded towels back and forth across smooth table surfaces, moving small objects around in their hands, and other helpful but otherwise pointless exercises.

There was an old man who had little to say and moved slowly. Another who had too much to say but seemed happy in his struggles. A woman was regaining use of her left leg following a bad traffic accident.

And then there was me. No car wreck put me here. I wasn’t working to overcome the ravages of age to return a little function to my final years, or months. I was in this room with these characters from a play I had never imagined because a year of symptoms and searching had introduced me to a rare disease that was now trying to kill me.

The tech brought various exercises to my station that day. One in particular featured a frame of small pegs and a pile of metal washers. My mission was to stack washers on various pegs, take them off, move them to other pegs, etc.

This is about the time my wife walked into the therapy area. She had taken the opportunity to have some breakfast when the nurse wheeled me away that morning, but she didn’t stay away long because she wanted to come see what and how I was doing. She would later tell me that her heart broke when she saw me from a distant, and that it was a struggle to hold back the tears and compose herself before coming over to where I sat, wheelchair bound, moving flat metal disks between wooden sticks.

She couldn’t block the thought in her head:

“Is this what his life will be like from now on?”

I had been reduced. To this. No notebooks filled with big ideas, no phone calls with clients, no meetings with employees, no stacks of books, just a man in sweatpants sitting in a wheelchair playing a child’s game.

What she didn’t know was that this morning brought a similarly stark realization to me as well. As I had gone about my assigned tasks, I observed the circumstances of those around me and thought, much like the woman in Kalanithi’s book, “I am a person of _____,” filling in the blanks with all those things I imagined made me who I was. The knowledge I had gained, my accomplishments, the people whose respect I had earned.

And that’s when I realized I was, in fact, no different than any of the others. At all. We were all just people.

In a way, a rare disease is like a reset button. Some conditions bring about a harsh ending, such as Kalanithi’s. Others, like mine, strip a person down to nothing and give them the opportunity to begin again learning who they are.

I am blessed. I fought for my life and I won. With medication and monthly IVIg infusions, I enjoy a relatively normal life, albeit by a different standard than before. I’ve taken trips with my wife, took part in my son’s wedding and watched my daughter take on new career adventures. I’ve had new ideas, met new people and continued to build our business. I’ve played with my dogs, enjoyed live music and read good books.

Though sometimes I lose focus, I try not to forget perhaps the greatest lesson MG has taught me. I am not these things. I am not the sum of the things I’ve learned, the people I’ve met or the tasks I’ve accomplished.

I am just a person. But I am that person. And what I choose to make of this person is up to me.