Beauty, Life, and Disease

“And all that beauty, all that wealth e’er gave,

Awaits alike th’ inevitable hour…”

– Thomas Gray

She was brought into my office by a pair of very concerned parents.  Literally carried in, because she was not able to walk without help.  A few days prior to her visit she was a very accomplished soccer player, Pom Squad member, excellent student, and devoted (sometimes trying) daughter. In addition (I know I might get in trouble for saying this, but it’s an integral part of the story): she was beautiful. One day, without any warning, she could not get out of bed and walk to the bathroom on her own.

The girl who had it all overnight was served with a very harsh and premature lesson on life. The one about how we can never take anything for granted; how we need to enjoy our precious moments  and make the most of them. Most adults have a hard time when presented with this reality. It is beyond unreasonable to expect a 14-year-old to accept it.

The diagnosis was rheumatoid arthritis. Just about every joint in her body was swollen and tender. The patients with severe RA have a positive blood test in the hundreds. Hers was in the thousands. Every indicator pointed to the strong likelihood of a stormy course with a poor outcome.

I asked her parents to bring her to the medical school teaching conference.  Maybe one of the professors would have an idea; a new insight; a drug in development that they would want to try on her. No such luck. All of the attendees were impressed with her findings. None was interested in following up with her. As I left the conference room one of my former mentors took me aside. He put his arm around my shoulders in a gesture of sympathy. He looked down, as if he did not have the courage to look me in the eye.

“Those kids don’t do well, Paco.”

Nothing I did not know. Back in my office I met with the girl and her parents. I explained in detail the nature and course of the illness. That I would need to use large doses of potentially toxic medicine. That she would likely lose her hair, and gain weight. That there would be the need for frequent visits and bloodlettings. That I had no information on whether she would ever be able to have children, because there were too few case reports on this matter.

To my great surprise, everyone was “all in.” There were very few tears and even less “what if” comments. That same day, she started her complicated regimen, and we began a long, sometimes epic, always entertaining and surprising relationship.

It took a while, but she improved. Not to the point where she could be a competitive soccer player, but enough so that the casual observer could have never guessed that she was seriously ill. None of the potentially bothersome side effects materialized. Her parents made sure that she took her medicine and that she showed up for her visits and tests.

When the time came for college I took a deep breath. I have three daughters; the youngest was the same age as my patient. I knew all about the parties; the drinking; what we euphemistically call the “exploring our boundaries (meaning staying up late, not getting enough rest, sexual experimentation…).” I could not bear the thought of having all the work that we had put in be destroyed by irresponsible youthful behavior.

We had many talks. Quite a few arguments. At the end of a particularly vigorous (to put it mildly) discussion on drinking and its deleterious effects on the body (made worse by the medicine she was on) she announced that she would just stop taking the medicine on certain weekends. You could hear my scream in the next exam room. It was then that I realized that I had “adopted” this young woman. I was reacting the same way I would had I been talking to one of my daughters.

It was time to take a step back. Look at the whole picture. I realized that we had come a long way, and that she had been a model of restraint and cooperation throughout. Her academic achievements were significant. She had numerous loyal friends. Her parents had no complaints. Despite the medicine and its potential for side effects, she had grown taller, and her little girl pretty looks had evolved into a striking portrait of an attractive woman. I had to face the fact that we were winning, and that maybe my desire for perfection in the medical regimen was interfering with her ability to grow emotionally, and make decisions about her life.

I shut up. I told her that as long as she knew the risks, it was her decision to make. As it would be with staying up late, or picking the right mate, or finding a good career. That I would be there for her no matter what, and that I would never judge her, or try to punish her for any mistakes she made.

That was all it took. Heavy drinking never materialized; neither did any of the other unsafe behaviors. Once it became her choice; once she was sure that my caring was not contingent on her making a mistake, we did well (I say “we” because I still feel that I have adopted her, so I take a little bit of credit for what she has accomplished).

She won a scholarship to study in Paris. I made plans to fly to France in order to find her a competent doctor and fill her/him in on her clinical course and lab studies. Fortunately, through some of my med school mentors, I found the right person on one of the first days that I used the internet.

She met a young man. Different nationality; much different religion. An aristocratic family that had no intention of welcoming her as one of theirs. I kept quiet, but I was bursting with apprehension. They grew apart after a while.

There were many other ups and downs. There were months that she was a handful, followed by weeks that I felt that she would do well. Her disease went into remission (a very unusual occurrence when a patient starts out as poorly as she did), but I did not stop worrying about her.

She is now well-established as a successful professional. She has a devoted husband and two brilliant, charming, well-behaved kids. I attended her wedding. As the couple left the church I took her new husband aside.

Take good care of her. I know someone that can hurt you.

He gave me a look of astonishment. Then we laughed together. I hugged both of them.

Her disease still requires strong and expensive medicine, but there have been few complications and no poor outcomes. I am proud of her.

A couple of comments about her case. Years ago, she was working her way through college. She found a summer job at a fashionable women’s apparel store. One Saturday a semester, I took my daughters shopping for clothes. I decided to introduce them to my model patient.

As we walked in, I saw her tending to a customer. I waved at her. She let out a small scream, ran to me, leaving her customer stranded and bewildered. She almost jumped into my arms as she hugged me. Her customer smiled.

After she met my daughters she went back to her job. As we left the store my prim and proper daughter was a bit disturbed.

“WELL! If I see my doctor in the mall I certainly don’t go running to him to hug him.”

Another daughter, the practical one, responded.

“You would if he had saved your life.”

I have not saved her life, and she has done all of the hard work .But there is something to be said for open communication with your doctor. She was just being herself, which is why our relationship had worked so well. I allowed her to be who she was, and for the most part she followed advice.

About the beauty. Yes, it is unfair and demeaning to judge people by the way they look. Yet society still places a great deal of value on “looking good.” I dressed well to go to my office, and I do not think that my patients would like it if I did not. You do not show up for an interview in your pajamas. Do not get me started on what some people decide to wear to go to church.

Doctors deal with this problem more than anyone, because disease (and the medicines we use to treat it) so often makes us look unattractive or deformed. The damage to patients’ psyche is serious and significant. We should NEVER tell our patients that looks are not important; that true beauty lies within the soul, or any of those platitudes. We should always acknowledge the feelings of this soul that we are trying to counsel and help. We should express the same concern for their looks that they manifest. It is their body: a big part of our treatment goal should be to help to minimize the self-consciousness they feel if their appearance changes.

Today’s blog is a tribute to this strong, determined, kind, funny, brilliant, successful, and yes, beautiful young woman. It has been a long road, and she has worked very hard, and we do not know what the future has in store for her, or for any of us. But for now, I want her to take this day off from the hurry and bustle of being a professional mother and wife. I want her to lie back, do nothing, drink maybe one beer too many, and congratulate herself on her incredible escape from a life of slavery to illness. She deserves all the credit in the world. Soak it all in.