La Jolla Soft Bones National Meeting
How do you describe a rare disease patient meeting? Well, I had the opportunity to write a blog post on it two years ago (link here) and have found that it is always difficult to sum up the whole experience. As my husband Dave and I return from our third national meeting once again I am pondering what to tell others about the bond between hpp patients, families, loved ones and caregivers.
Our friend Sue. I have learned so much from her about hpp!
They say when you find your tribe (community, family) to love them hard. We are doing the best we can to walk that out step by step and day by day. When we watch new patients at meetings we are delighted to connect, listen to their stories and answer any questions they have. They say everyone needs to be fully loved and fully known. I think that’s a huge part of it. They feel more fully known. We feel more fully known. Others who we sit across the table from hear us and say yes that’s how I feel too! Do you know that I’ve come to fully realize? Knowing and understanding why there is pain, why there is difficulty, and what can be done about it is validating and empowering as well as comforting! We may not understand the whys of everything but understanding one or more new facets about your diagnosis can be a comfort. I’m not crazy, it’s not all in my head, there is a reason why I am experiencing this. Then if there is treatment you can hear about and see others that are on treatment and those who are not, weigh out the benefits and risks to make an informed decision about your available options. These moments remind me of a quote from a favorite show of mine, Call the Midwife:
“None of us have ever truly walked this way before
But if there is no map, no route, no arrowhead to follow
There is sometimes a star.
An we do not make our way without companions
As the road unfolds, we travel side by side
And share the shift from darkness into light”
Our friend Sally and I on break! She's a gem!
There is also laughter! Laughter over the things that only a person with your flavor of rare would get. These are your people, family, community, and they really do give you with a sense of belonging. These are the people you talk with when your doctor does not know what to do, the medical professionals don’t know what to do. Often times only you and your inner circle know the hell you’ve been through and yet you meet people who get it when coming to these meetings.
There is also laughter! Laughter over the things that only a person with your flavor of rare would get. These are your people, family, community, and they really do give you with a sense of belonging. These are the people you talk with when your doctor does not know what to do, the medical professionals don’t know what to do. Often times only you and your inner circle know the hell you’ve been through and yet you meet people who get it when coming to these meetings.
Many sacrifice their money to make that one trip, pain in their bodies, perhaps risk a fracture to make that connection, get that education, and be empowered to advocate for yourself and others in your community. Forever changed, never the same, and encouraged to grow to your full potential. Do it afraid, go to a meeting, make the connections, be vulnerable and tell your story, fuel your tank for the journey. It’s not a sprint it’s a marathon. Pace yourself, and keep this quote in your heart:
“Sometimes life is shattered in an instant and all our certainties are savagely stripped away. Questions become our weapons, answers are our only hope. Without them fear engulfs us. Love and each other can be all we have
Love can not always save us but it can be the reason we fight
Then love becomes the wound that bleeds the space to be filled
The emptiness that echoes into silence”
-Call the Midwife
Copyright SHARONNMYLIFE INC 2019 | all rights reserved
Copyright SHARONNMYLIFE INC 2019 | all rights reserved
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