The Patient Project

For the past six months Michael’s family was involved in the “Patient Project” through the Penn State University College of Medicine.  During that period two first-year medical students spent many hours interviewing and videotaping Michael and his family about life with his son Matthew, who lives with severe intellectual disabilities and autism.   The Project’s purpose was to come to understand in a deeper and more intimate way what it is like to live in a family with a member who has a chronic and life-altering condition.  This is a wonderful Humanities requirement for all PSU medical students in their freshman year.

The students were given complete access to as many aspects of Michael’s family’s life as was possible.  They saw all the adaptations Michael’s family has had to make over the course of the last 24 years and they heard countless stories of the impact Matthew has made on each of them.  They heard about the blessings as well as the burdens, the doors that opened to them and the doors that were closed to them, and the many things they learned and the many sacrifices they have had to make with Matthew in their lives.  The concrete result of this six-month interaction was a video that was produced by the students about Michael’s family’s life.

The more important result was what the students learned from their time with the families.  They learned to see patients and their families as people – with real concerns and fears and feelings and lives outside of a clinical setting and even beyond their diagnosis.  They learned to look at the patients and their families not as people with a condition, but as people who are multi-faceted and who are dealing with many more and complex issues in addition to their specific health concerns.  They learned to appreciate them in a much broader, more holistic way.  They grew to respect them and value them and came to understand that they could learn so much more from them than they ever imagined – because they were able to take the time to listen to them and see them in the larger context of their everyday lives.

For Michael and his family – and surely for most of the other families involved in the Patient Project – the time they shared was nothing short of a privilege and a joy.

We believe that there is so much in life that is beyond our direct control.  So much of what happens to us is not of our making or doing, but of circumstance beyond our reach.  But we also believe that what we can control much more is how we react to what happens to us, that our attitudes about our circumstances make a huge difference in the amount of contentment and joy we experience in life.  Michael and his family could not control the fact that Matthew has major disabilities.  But they can – and do – control to the best of their ability the way they respond to their challenges and limitations.  And they believe they can use their circumstances and their story to help others to find contentment and joy with their own unique stories, too.  They agreed to be part of the Patient Project to help young medical students to learn a very valuable and meaningful lesson, right away in their training.  They hope that it is a lesson the students will never forget. 

And if these wonderful students can remember what they learned from Matthew’s life and from all the other lives of the families they shared their time with, just maybe they will become doctors who practice not just medicine, but compassion and understanding and grace that leads to a greater healing.  A healing that cannot be measured in quantitative statistics, charts and analysis.  But a healing that is measured in a greater human quality of life instead.