Sunday, February 14, 2016

What to say, and when to say it



There is something I turn over and over in my mind. It holds me back from blogging sometimes because I never reach a clear guideline about it. How much do we say about living with HPS, and when do we say it?

My background is as a journalist. Telling the story is just in my DNA (sort of like HPS – grin). Is there ever a down side to telling the story? Most of the time I don’t think so, but there are times I question myself.

What motivation does anyone have to find a cure if they do not truly understand the consequences of not finding a cure? Unfortunately, by the time we HPSers start to more fully understand the consequences of not having a cure, we are often too ill to do much about it. We need those who are not struggling with lung disease, bowel disease, or bad bleeds, to be our alleys and help us do the work it takes to find that cure.

It takes a lot of work. Few people, even people very involved in the HPS community, truly appreciate how much work it takes.

The world is full of causes, however, that take a lot of work. So, how do we compete for the hearts and minds of supporters both from within, and from outside of, the HPS family?

Other health-related charities do it with stories. It isn’t exactly a new concept. Think about the commercials we see on TV for children’s hospitals or for other more common disorders. The commercials are not full of people who are doing just fine and appear to need nothing. They are full of images that pull heart strings, and thus, pocket books, wide open. They are personal stories.

It is no accident that our members’ transplant funds are far more successful fundraisers than the fundraisers of average members not in a crisis. We are glad of that. I’m glad of that as I am one of those needing the help of a lung transplant fundraising effort. But, I can’t help but think it is a shame that we as individuals, and our surrounding circles, don’t feel a sense of urgency about HPS until it has come to a life and death crisis. Wouldn’t it be better to never reach that point? Wouldn’t a treatment, and someday, a cure, be so much better than trying to figure out how to fund a lung transplant? That isn’t possible, however, without involvement before we are so ill.

There is a flip side. When I’m deciding what to share here with the entire world, I never know who is going to read it. Sometimes it is someone newly diagnosed and frightened. Will they read something here that pushes them to avoid the HPS community instead of embrace it? Would they fear the HPS community is just too depressing to be a part of, and thus never get to know us? Sometimes it might be a young person with HPS. Parents like to think they can control how much their youth affected by HPS know about the disease, and when they know it. The reality is our teens with HPS are not stupid. They, like millions of other teens around the world, are very adept at using the internet to get whatever information they wish. If they want to know, and they don’t feel they are getting questions answered, they go searching for those answers. What if they happen upon my page when I’m having a bad day? What if they gain such a sense of dread or certainty about life expectancy or likelihood of illness that it affects important decisions in their early lives? Would they truly appreciate that their futures can look very different than my present – especially if they get involved and help make that new and better future?

I can’t tell you how many hours I’ve spent thinking about these things, and talking about them with a few of my HPS friends.

In the end I think we have to tell the story – all of the story. The good. The bad. The ugly. And, even, the gory and horrible. It must, however, be done with a respectful understanding of the above mentioned concerns.



We have to tell the HPS story mindfully. As any writer will tell you, it isn’t just the story; it is the way it is told. I hope that I can temper some of the scary aspects of HPS with all of the hope that is out there for the future. I hope I can temper sadness with humor. Most importantly, I hope that I can loosen up enough to start telling this story again.

P.S. I honestly would appreciate feedback on this balancing act. Any thoughts? Please share. 

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