Our patients face many challenges when experiencing life with a new disability. We have all seen individuals with a similar diagnosis respond to their circumstances differently. What determines whether someone will thrive and flourish despite these very real challenges is an interesting and critical question. Gaining insight into this question has implications for those we care for as well as in our role as competent compassionate practitioners. Taking it one step further there are potential public health and societal implications. Our focus has predominantly been on measuring clinical outcomes in terms of very specific medical metrics of success that includes functional outcome for our rehab community. What is given less importance is the psychospiritual dimension. This dimension is a critical part of the human experience. Beyond the intrinsic importance this dimension holds for each of us, there is evidence that our psychospiritual wellbeing does impact the other dimensions of health, function and in turn is represented in clinical outcomes. As health care evolves with a growing focus on technology and the digitalization of medicine, we are offered both a challenge and an opportunity to recognize and integrate this knowledge into our health care system.
As a physician practicing for over 30 years in the field of Rehabilitation Medicine I have witnessed the transformation and healing that my patients go through when cure is not possible but a new and different version of their life is. A few years back I read for the second time the extraordinary book Man’s Search for Meaning by Dr. Victor Frankl, a preeminent neurologist, psychiatrist and holocaust survivor. In this book he illuminates humankind’s ability to face adversity even at its most extreme and still find meaning and dignity in one’s life. His work remains an important resource for practitioners and patients working with challenging medical conditions and has informed my work in the development of an exciting new project.
I am the Founder and Director of Our Heart Speaks, Inc, a nonprofit that is supporting a new initiative involving patient stories. ourheartspeaks.org We are developing an online platform to give voice to individuals who despite a new disability have been able to find both meaning and purpose in their lives.
This is an international project which will include submissions from around the world. Although the first person narrative will be the primary format, there will be an opportunity for caregivers and others who can speak to a patient’s experience to relate their loved ones story. We are encouraging the submission of stories in other art forms such as poetry, the visual arts/photography/video and music. The written language may not always be the best medium for some to communicate their heartfelt story and message of hope.
This project will give voice to our patients who have been successful in engaging with the existential questions that a new disability offers while inspiring and educating other patients, caregivers, and health care providers. There is evidence of the therapeutic power that patients derive from sharing their story. The website will be a dynamic vehicle with its own power and potential to support material for future publications, conferences, research and workshops. Our Heart Speaks is fortunate to have a growing creative team who share the vision while representing the arts, humanities, the disability community and the field of medicine.
At this time we are actively seeking patient stories to be considered for submission.
We are developing partnerships with organizations and individuals. In order to develop a project with worldwide reach we welcome collaboration and are open to opportunities to work with others.
It is a big undertaking and early on it was decided when creating Our Heart Speaks to make this a public charity to facilitate funding and the financial support needed to develop a model online international platform that gives voice to those living with a new disability and to provide a means to achieve our educational and research goals.
To learn more about this project please visit ourheartspeaks.org
If you should have any questions or wish to reach me directly, please feel free to contact me at
Keith W.L. Rafal, MD, MPH