Disease and the Soul
When we are no longer able to change a situation, we are challenged to change ourselves.
Victor Frankl
Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way. What is to give light must endure burning.
She was brought in by her anxious mother. A once “normal” 18-year-old youngster was besieged by fatigue, muscle pain, and inability to concentrate. What we call “brain fog.” Her primary doctor had ordered the “right” tests, but once the results came in her mother was asked to bring her to me. No further explanation was given.
My new patient is tall; slender; very elegant. Many teenagers these days wear torn blue jeans and multicolored blouses to demonstrate nonconformism and fashion sense at the same time. This young woman wore a more traditional outfit, yet nothing that took away from her youth and natural good looks.
She will finish high school soon. She will attend community college until she is ready to make further decisions on her life. As the interview progressed, I noticed the quiet yet strong bond between her and her mom. I sensed nothing but support coming from the elder woman. I saw nothing alarming when I examined her. I had her come off the exam table. I keep a chair on the right side of my desk. Even with the computer screen facing me, I can still look straight into a patient’s eyes, and feel that we are communicating just like in the old days.
You have lupus. The blood tests are definitive. You have been fortunate that your symptoms have been mild. I will do my best to keep it that way.
There was a relatively long period of silence. I realized that they wanted me to say more, probably because they were not as familiar with the diagnosis as I thought they would be.
Lupus is an immune disease. It is not unusual in young women. By a mistake we do not understand well, your immune system begins to react against your system. It can take numerous forms, depending on which organ your body attacks. In your case, so far, your muscles and your brain have been involved.
“So far?”
I have no way to tell if more organs will become involved. The medicines we have may keep you from getting worse, but they are slow-acting, and they do not always work.
This is always the worst part of my conversations with the numerous young women that I have treated.
At 18, if parents are lucky, a child will have a fairly accurate view of what he or she wants to do for the next few years. Being young, we assume that this future is set in stone. It rarely occurs to anyone, at age 18, that their situations may change. Never mind change in significantly disruptive ways.
There was more silence. I understood that I was not getting through; that mother and child were still digesting their new and uncomfortable reality. I had to make this conversation about my new patient,
not her disease.
What do you do for fun?
“I like to do art.”
Paint? Sculpture?
“I have not tried sculpture yet. I use different colors to depict the same person.”
Do you have any photos of what you do?
Almost immediately out came her phone. She showed me dozens of pictures of her work.
Are these canvases?
“Yes.”
This is extraordinary. You can change the mood of the subject by manipulating the colors of her body and her surroundings.
She smiled.
Have you sold any of these?
“I mostly give them to my friends.”
How much would you charge for one?
“I don’t know. I guess 25 dollars.”
That will barely pay for the canvas.
“She does not pay attention to that,” her mother hastened to add. The first indication that this child has the same blind spot to all her parents do for her as most of her peers.
I will start you on medicine today. I will see you in a few weeks. Be sure to bring me pictures of any paintings you still have. I will buy one. I must add they are worth more than 25 dollars.
Both smiled.
You are young. It is awfully unfair that you have become ill. My job is to supervise your medicine, but I also have an obligation to help you accept and manage your new reality.
Again, silence ensued.
Your disease will not define who you are. You will be the same person you were before you walked in here today. You will paint, laugh, and love. None of that will change. Your illness may or may not change what you look like, but your spirit; your soul; remains. I want you to hold on to that truth. Even if you had remained healthy, challenges would have come up to meet you at some point. Your happiness, and what you accomplish in life, will depend on how you react to these changes. If you decide to continue to paint, and to study, and to love the people and the places that surround you, you will be OK.
Your life is important: it means something. That will never change.
I saw a couple of tears in her mother’s face. She understands. With time, her daughter will.
We do not know what the future holds for us. In a way, being ill narrows our options, but it also decreases our uncertainty. Few people are unlucky enough to come down with two disasters. Some bad situations are avoidable (such as an abusive relationship). When we cannot help changing what has happened to us, we must choose to adapt and somehow endure. There is honor and meaning in
suffering.
What is to give light must endure burning.
