Skip to main content

Healing the Heart and Healing the Head

I started thinking about the head and heart while at an American Academy of Dermatology AADA event. After almost 32 years of leading the charge and cheering families and researchers on and sometimes being a shoulder to cry on, I pondered the difference between the older generation and the millennial generation. I noticed at the meeting there was a mix of older and younger advocates and physicians. In many respects we are alike, our devotion to being treated or treating patients with respect and our commitment to finding financial and legislative solutions to the various diseases we are dedicated to supporting. I believe in any generation there is a generalization for the work ethics and moral values that epitomize each one. I also believe there are the outliers that define or change the shift from one generation to the next.

Specifically, in Sturge-Weber syndrome there has been the shift in support and networking people from an all volunteer support system with expensive long distance phone calls or snail mail to staff and volunteers developing content to get information from websites and today the expectation that their should be an immediate reply or access to information 24-7-365. The older generation in general for the most part has been inbred to have self reliance and to do their own sleuthing and communication to obtain necessary care and knowledge. They also are more comfortable visiting in person rather than relying on technology to communicate.  It makes their life sometimes harder and slower but they don’t impede on others to do their heavy lifting. The millennials  in general expect that discomfort and fear need to be “fixed” ASAP and it’s up to someone else to deal with what they need when they need it and how they need to receive it and make it easy to enable them to deal. Take a deep breath…I’m not dashing the Greatest Generation nor bashing millennials…simply stating the generalizations of the two generations. I am lucky to have met and to know some AMAZING millennials and older generations as well as their outliers in both generations!

The level of support and manpower required to meet the emerging 24-7-365 needs of a new generation of patients was taken into consideration at the Board of Director’s recent Strategic Planning Retreat. For example, one volunteer thinks websites are basically old school and the suggestion was to repost information and video medical lectures on Facebook and other social media platforms. Great idea…you can teach an old dog new tricks!  Another volunteer prefers to know ALL the back story first

Patience and open communication are key attributes needed between generations not only in a relationship but with your healthcare providers, school officials, employers etc. There is no wrong and no right way to accomplish this because as you know there are people who like bulleted talking points vs narrative written materials and people who like curves and people who like angles. Our goal as the SWF volunteers and staff is to give it our best effort to create learning materials that meet diverse learning styles, medical needs, cultural differences and so much more…and yes to generate enough revenue to maintain programs and access at your fingertips. We aim to please. We appreciate your participation and financial support. We appreciate your patience and understanding in our service and your reception of those services.

On a personal level, it is our personal responsibility to heal our heart and head. No one else or no organization or healthcare provider can do that for you. You know yourself best and you need to BE at your best to bring a strong advocate to lead the charge for your loved one with SWS. We also have to be cognizant of what our intent and tone are implying and saying whether online or in person. Respect for and tolerance of another opinion or experience are tantamount to safe guarding vulnerable recipients or less knowledgeable providers.

The fight or flight emotions rear their heads at the most inopportune times which is why it’s best to plan your work and work your plan. Sure plans go awry so you need a back up plan and another back up plan and another back up plan! The wealth of wisdom among the generations is your treasure for healing your heart and head. Take advantage of the wisdom as well as their experiences and be sure and leave some for the next generation by being open minded, present and having a presence online or in person. I know you’ll make the right decision to heal your heart and head in whichever particular order fits you best. We’ll forgive each other our unintended transgressions because our mutual goal for our loved ones is the same…quality of life and care and a cure!