A loved one passed away this week shortly after turning 100 years old. She really was an unbelievable woman. If she didn’t answer the door, she was probably out in the garden, raking the leaves in the back yard or even shoveling the walk way; truly amazing at 100.  She had a kitchen that was set in the 1930s and lived the simplest of lives; no televisions, microwaves or freezers in her home, just the radio locked in on WRKO.
She connected with everyone she met.  When you visited her, she told stories of the past, showed pictures of her extended family and displayed the many cards she had received since the last visit. She never forgot a birthday and always included a personal note in perfect penmanship.  We all loved to visit her, to hear of her history and what was happening in the extended family.   It occurred to me as I listened to her eulogy how simply she connected with everyone. Yet as simple as these connections were, they were incredibly powerful and long lasting.
I couldn’t help but think about what we are doing with this community and the greater impact we are having on each other. We share stories through meetings, phone calls, email, and pictures and develop friendships; simply connecting with each other.
It is International Rare Disease Day today. Take this opportunity to ‘simply connect’ to a member of this greater rare disease community and feel the power.
Phil,
Your blog is beautiful, and touched me deeply.
How ironic it is that one day after attending the Genzyme Rare Disease Day event, I learned of the sudden passing of a beloved cousin.
He was in his early 60s, and also lived the simplest of lives — no computer or television. He had no interest in fame, fortune, or politics.
History was a passion, and a library was close to heaven for him. He also developed an uncommon passion for the history of New York City, visiting the numerous museums of NY at every chance he had on his very limited, disability income.
He became an absolute expert on the history of NYC — a history that includes people from just about every country in the world. And this was how he naturally connected with the world — in a most gentle but powerful way, sharing his thoughts with others who shared that same interest. I was told at his funeral that all who knew him will never forget him — that there was not a hint of bravado in this man.
Mahatma Ghandi said, “In a gentle way, you can shake the world.”
That reminds me of my cousin’s life, and of what we do, each time we reach out to anyone who is struggling with the discomfort and isolation that rare diseases impose…we gently shake the world.
Thank you Stefanie! Great quote! I like to think that this community, in a gentle way “is shaking the world”. 🙂