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Saturday, August 28, 2021

Life's Lessons - Who taught me what? (10)

 Lessons learnt from children (patients)

There are so many lessons I learnt from children, their parents, and their families I do not know where to begin and which ones not to include.

One of them had a severe illness affecting many parts of her body from the age of 15 months. The way she has fought that disease and all the things she had accomplished in her adult life are inspirational. She taught me, like many other children, about resilience and motivation. She, like many other children with similar conditions, did not give up. She did not let chronic illness control her life completely. Her experienced showed me that resilience is partly built-in and most of it depends on the family. She also helped her own parents and helped other children with similar conditions.

These attributes are true for most of the children with chronic illness. They planned for their lives ahead, not just for the disease, although they had to modify their goals and day-to-day planning. Some had to modify their career goals and field of study. Families learnt to plan for an alternate activity if the disease should flare on a day with specific plans.

All of them showed me how important family support is and how their positive approach came from their families. They taught me that one way to overcome adversity is to help others with adversity. Families of children with chronic illness were the chief movers behind American Juvenile Arthritis Organization, locally and nationally.

Another young lady had an illness associated with daily fevers going up to 105 degrees for months on end. We had very few treatment options available those days. She was the earliest one who showed me how one should plan for life and not for illness. That is what physicians also have to do - help them plan for life without minimizing their realities or giving false hopes. She did not miss school because of fever. She wanted no excuses and did well in school. She went to college, obtained a Master’s degree and became a manager. She even had energy to raise funds for arthritis research.

Then there was a 12-year-old boy whose legs never worked right. Once he told me: “Doctor A. My legs do not work. They have been working on it for years. It is still no better. But my hands are great. No one is working on them”. That is when I learnt that physicians are taught primarily to look for defects and treat them. That is as it should be. But  defects cannot always be corrected fully if at all. Physicians must also  look for strengths in patients and their families and build on them. We can prop up defects. But can build only on strengths. That was the lesson this young boy taught.

There was this 6-year-old girl with a bad disease. She and her family had a rough time. But what helped them get through was the mother’s great sense of humor. She was very funny. I realized that humor is one of the antidotes for the stresses of chronic illness. (In some, humor may be a cover-up for the internal struggles. There will be some clues such as sarcasm or inappropriate laughter)

One girl with a disfiguring chronic illness I had the privilege of caring for and, her mother taught me several lessons. They were from a very poor neighborhood.  The mother had very little education. But she gave something special to her daughter. I cannot describe it in words. It is my intuitive understanding of the way she took care of her daughter with a severe disability, which made this girl thrive, grow and, become independent. This mother also showed me that the special feelings and attitude associated with "motherhood" have nothing to do with wealth, intelligence, and education. It is a sacred feeling, only mothers can have.  

When she was 12 years old, this girl requested that one of her legs be removed. She asked on her own even though the mother was sitting there and said it with a smile on her face. She said “ Doctor Athreya. Let me have a new leg because I want to dance like other girls”. I did not know how to respond immediately but told her that I will get back to her and her mother. Her request and the way she brought it up made me think very hard. The conclusion of this episode was a happy one. She got her request and the smile on her face after her first dance with a new leg was one to remember forever.

Indeed, this episode taught me how to think through complex issues and became the template for future challenges I faced in medicine and in personal life. I was moved to share what I learnt from this experience with future generations and therefore included it as an example in my book on Thinking Skills for the Digital generation.

She went to a local college with help from our team of nurses and social workers and, also found a job – all on her own. Few years later, I was sad to learn that she contracted “flu” during the “flu” season and died. Even after her daughter's death, this mother showed her grace and nobility confirming my earlier opinion about her as a special kind of mother. 

This mother and her daughter were equivalent to a whole book on graceful living for me.  

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