This evening I heard the most moving commentary on NPR by a woman remembering her friend who passed away from breast cancer. She remembered her friend’s incredible coping spirit to move on and do what she wanted to do even when conventional wisdom might have suggested she do otherwise. She spoke about the losses her friend experienced as she became sicker. The most painful of these losses was the loss of being able to do “mom stuff” for her eight-year-old daughter – things like driving carpool or baking cookies.
I was moved by the essay, partly because of the story, partly because it was so well written, and partly because although I’m not a mom, I’ve seen similar situations play out in the HPS community and hearing the loss of “mom stuff” brought back memories of heart-to-heart conversations in the wee hours of the morning with friends while their children slept.
Although the essay was for Breast Cancer Awareness Month, it made me think again of our documentary film. I’ve been asked over and over – perhaps to ensure I won’t change my mind later and back out – as to whether I’m really comfortable sharing so much about myself and HPS. The answer is absolutely! Just like the blog, it isn’t a decision I’ve undertaken lightly. Not only do you expose your medical information to any insurance company or future employer that might want to find it, but you also open yourself up to possible judgment and criticism from everyone you know.
I guess I feel I’m in a unique position to help tell this story. It’s a story HPS’ers very much want to share with the world.
When you say “breast cancer” most people know what that is, and they may even have some insight into what that means in a person’s day-to-day life.
When you have an ultra-rare disorder, however, it sometimes feels like you exist in the shadows. No one really knows or understands your story – often not even the doctors charged with caring for you. It can feel so isolating. It can sometimes feel like you’ve been forgotten about – as though your story, your experience, is somehow less important, or believable, or relevant than the stories of those with so many more resources to draw upon.
That’s why it means so much to HPS’ers when people reach out to help us. The help not only goes a long way in a community with so few resources, but it means a lot to be remembered. We feel so honored by those like the group at Mulloy College organizing a fundraiser or the group “J” that has supported us for so many years.
The prospect of a documentary featuring HPS, however, is so exciting because it has so much potential to give us a voice. We are out here too. We are watching our friends, our families, suffer too. We certainly don’t want to compete with other disorders – we simply want to join them on the public radar to fight for better lives, better treatments and more understanding in society.
I was moved by the essay, partly because of the story, partly because it was so well written, and partly because although I’m not a mom, I’ve seen similar situations play out in the HPS community and hearing the loss of “mom stuff” brought back memories of heart-to-heart conversations in the wee hours of the morning with friends while their children slept.
Although the essay was for Breast Cancer Awareness Month, it made me think again of our documentary film. I’ve been asked over and over – perhaps to ensure I won’t change my mind later and back out – as to whether I’m really comfortable sharing so much about myself and HPS. The answer is absolutely! Just like the blog, it isn’t a decision I’ve undertaken lightly. Not only do you expose your medical information to any insurance company or future employer that might want to find it, but you also open yourself up to possible judgment and criticism from everyone you know.
I guess I feel I’m in a unique position to help tell this story. It’s a story HPS’ers very much want to share with the world.
When you say “breast cancer” most people know what that is, and they may even have some insight into what that means in a person’s day-to-day life.
When you have an ultra-rare disorder, however, it sometimes feels like you exist in the shadows. No one really knows or understands your story – often not even the doctors charged with caring for you. It can feel so isolating. It can sometimes feel like you’ve been forgotten about – as though your story, your experience, is somehow less important, or believable, or relevant than the stories of those with so many more resources to draw upon.
That’s why it means so much to HPS’ers when people reach out to help us. The help not only goes a long way in a community with so few resources, but it means a lot to be remembered. We feel so honored by those like the group at Mulloy College organizing a fundraiser or the group “J” that has supported us for so many years.
The prospect of a documentary featuring HPS, however, is so exciting because it has so much potential to give us a voice. We are out here too. We are watching our friends, our families, suffer too. We certainly don’t want to compete with other disorders – we simply want to join them on the public radar to fight for better lives, better treatments and more understanding in society.
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