A few years ago I was walking through a local mall with my daughter and saw a kid about her age wearing a backpack and holding hands with a young woman. He was a gorgeous little boy, with black hair and huge black eyes. His eyes reminded me of my daughter’s. There was a name tag on the backpack. The last name was unusual but one that I recognized as that of a guy I grew up with—and this little boy looked just like him.
So I politely asked the woman if she was D’s wife. She laughed and introduced herself as a family friend. My friend D and his wife were in California getting her cancer treatment.
I’d heard that D’s wife had been diagnosed with cancer shortly after giving birth, but I hadn’t really seen D in years. He was one of the nice kids in the neighborhood, brilliant but not overly nerdy, kind, and not into torturing other kids. I figured he must have married a wonderful woman. And I was right.
I’m not sure how we all became friends, but somehow we did. My wife and his hit it off immediately. She was never “our friend with cancer” but just our friend. Still, there were reminders that she wasn’t entirely well. A couple of years ago, she started to experience a cough and some pain in her side. Despite this, we went to a side-splittingly funny movie where she alternately laughed and cried. We found out a little later that she had broken a rib.
My friend has been in the hospital for a while. It’s a long story, and not a good one, so we’ll leave that be, but it’s given me an opportunity to spend a lot of time with her. And while I’d rather hang out at their pool with the kids eating Chinese food, this time together has been remarkable.
Despite what the Lifetime network would have you think, illness isn’t pretty. Our tendency to glamorize illness (perhaps to gain some control of our fears) has not made it any less unpleasant. The Victorian era saw a glamorization of consumption (tuberculosis) in literature. In one of his first stories (Metzengerstein), Edgar Allen Poe wrote:
The beautiful Lady Mary! How could she die?- and of consumption! But it is a path I have prayed to follow. I would wish all I love to perish of that gentle disease. How glorious- to depart in the heyday of the young blood- the heart of all passion- the imagination all fire- amid the remembrances of happier days- in the fall of the year- and so be buried up forever in the gorgeous autumnal leaves!
This may have seemed a better death than many others available at the time, but for whatever reason, tuberculosis came to embody tragedy and beauty, soulfulness and sadness. In the U.S. and Europe today, tuberculosis is rarely fatal. Cancer seems to have taken the place of tuberculosis, with innumerable books and movies depicting the beauty and dignity of suffering from cancer.
While there is a great deal of dignity to be found among those who are ill, there is little beauty in suffering. What I have enjoyed about my time with my friend is her humor and love; her husband’s intelligence and kindness; her friends’ devotion. That is where the beauty is, not in her disease. The disease is the nasogastric tube, the nausea, the abdominal pain. The disease is wanting a piece of pizza you can’t have, wanting to watch your child grow up but being uncertain if you will even see his next birthday.
It’s not just the patient who fails to see the glamor in suffering. Friends and family aren’t so enamored of it either. It’s common for people to find themselves alone when they are suffering the most. It’s no fun to watch someone suffer, and many times friends will stay away to protect themselves.
But spending time with someone who is ill is a privilege. As a physician I am allowed to share in the intimacy of illness and dying. As a friend I am allowed to share it in a completely different way. If she weren’t ill, I would never have this much time with her and her husband. I would never have this much time with her other friends. But I would trade every minute of this time for another summer by the pool, another side-splitting laugh at the movies, or a play date for our kids. There is no glamor in her illness, an illness which she fights with humor and dignity. The beauty is in her, and in her family. It is in the love they share with their friends, in their willingness to continue to open their hearts when most of their energy is spent fighting this bastard of a disease.
There is no beauty in disease. The beauty, such as it is, is in the time spent together.