I entered the patient's room, and asked his permission to turn on the lights. In this hospital, the lights come on at a low level and then slowly brighten, resulting in less wincing and squinting. He didn't sit up for the interview, but he maintained appropriate eye contact and spoke intelligently.
We talked for a long time. He told me that his 22nd birthday was a week ago and not one person, other than his mother, had even acknowledged it. He told me that his mother had told him, a day or so later, that she blames him for all of the problems in her life. He told me that his life is filled with so much pain and heartache that he has found himself fantasizing about hurting the people who have hurt and neglected him, which makes him feel even worse about himself. He told me that he has not left his house in over a year, except for two trips to the emergency room for panic attacks and suicide attempts. He told me that if he could, if he was physically able, he would kill himself today.
He told me that he has muscular dystrophy.
I walked out of the room, maintained a steady pace and minimal eye contact in the hallway, entered the office, and closed the door. The patient's doctor asked me what I thought, and at that precise moment I lost any semblance of professional composure. I, who have never even gotten misty at work before, cried.
No fooling around, my job can be intense and emotionally draining. I've had clients who have touched my soul, my ID badge and my clipboard. I've felt unwanted empathy while speaking to women with late-term miscarriages, and felt the sinking familiarity that comes with certain repeat callers. It can be stressful, and sometimes intimidating. But I'm able to maintain a certain distance, a certain professional detachment, that allows me to get through each case and each day, recognize my own limitations and needs, and shake it off. It's a job requirement, I think, although that's hard to specify in an HR document.
When I first started the job, someone asked me whether there were any clients I just couldn't work with; any type of person that I found particularly challenging or upsetting or inscrutable. I said no. I thought about how some people are unpleasant or vulnerable, and that can create difficult interactions; but I couldn't think of a situation that would just, on its face, damage my professionalism or distance.
I didn't think I would end up sitting at the bedside of a 22-year-old man with muscular dystrophy. I didn't think I would listen to someone describe a life circumstance that is so painful and empty that my heart would ache right up to my throat. I didn't think I would take it so personally.
My sister Mary, who is 16 and one of my favorite people in the world, also has muscular dystrophy. A different type than this patient, but po-tay-toe, po-tah-toe. There were marked physical similarities - an aching thinness and eyes that hold far too much knowledge at the age. And muscular dystrophy isn't the kind of thing that greets you on the morning news on a daily basis, so even without similarities there are inevitable comparisons.
Mary is 14 years younger than I am, and my relationship with her has always been marked by a certain balancing act. Just the age difference alone creates a choice to make: am I an authority figure or a rival? We knew from the start that something wasn't quite right with her muscle development, but it took more than a year to get a diagnosis (nemaline myopathy). That diagnosis did not bring with it a cure, or a satisfying treatment, or even a clear prognosis. The disease is just so rare, and so insidious, and so unfair. And it brought with it a new tightrope to walk: do we protect and indulge her because she's this poor thin weak baby, or do we treat her like any other kid because she's smart and fun and as normal as anyone in my family ever will be?
We've reached a comfortable vibe, I think: we're friends, and I treat her as normally as I can while acknowledging her limitations, enjoying some extras (someday I'll write about the Children's Wish Foundationtrip to Florida), and appreciating the close-up parking spots she earns. My children just adore her, and I have loved watching her grow from a whip-smart and artistic child to a still-smart, cynical and even more artistic young adult.
Most days, I don't even think about nemaline myopathy in reference to Mary. She's just my sister, and I wonder about her latest mosaic project or giggle about our upcoming trip to Paris. Then I think about my sister Sarah's
But every once in a while, something blindsides me, and I end up sobbing in front of coworkers because the similarities, and the complications in providing basic care, and the sheer emotional overinvolvement, all get the best of me.
And I hope, with all that I have, that my sister knows how much she is loved, and appreciated, and welcomed with open arms, no matter what the circumstances. Because life is hard for everyone, and harder when you're faced with the limitations of illness. It's dangerously near impossible when you're dealing with it all alone.
