Aug. 19, 2013
TOPIC: Patients & Members
Posted by Aileen Tobin
Quotes, mottos, and poems can be a source of motivation for many people. Speeches are often capped off with a quote from a retired world leader, actress, writer, or extraordinary mind. Usually we don’t know the context in which these words were spoken, but being removed from the quotes gives us some flexibility in our personal interpretation.
For the rare disease community, the motto “alone we are rare, together we are strong” has created solidarity among rare disease patients and supporters around the world. With a community that is 30 million members strong, there is no doubt that we can move mountains together.
The poetry of Shel Silverstein is a source of inspiration and motivation for me. Although his poems are meant for children, they can provide a good laugh or cry for anyone who chooses to indulge. A departure from his typically cheery style, this poem resonated with me in regards to rare diseases:
“She had blue skin,
And so did he.
He kept it hid
And so did she.
They searched for blue
Their whole life through,
Then passed right by-
And never knew.”
This poem made me think about how far the rare disease community has come. You no longer have to search for other people with “blue skin” all your life, because there are already blue-skinned communities out there waiting for you. Rare diseases are notoriously isolating, but thanks to the internet and the efforts of the community as a whole, they don’t have to be. Many groups have emerged both inside and outside of NORD that bring rare disease patients and supporters together.
Words are powerful. They can make us think, as well as motivate us to push ourselves and beat the odds. What words have been sources of motivation and inspiration for you?
Aileen is a part-time intern at NORD. She is an undergraduate at the University of Connecticut, with a major in marketing.