Skip to main content

We must believe in the cure

Yep, I’m still cleaning out the office. I think I could make a career of cleaning out the office. I’m such a pack rat! I found something I’d torn out of one of those inspirational calendars back when I was still an editor at EXPO! It was another quote that had such meaning for me.



“To accomplish great things, we must not only act, but also dream; not only plan, but also believe.” - Anatole France


Anatole France was a Nobel prize-winning author and a journalist . Honestly, I don’t know much about him. He wrote some popular novels and won a bunch of awards in the 1800’s. I really like the quote, however.


Sometimes in our quest for the cure – okay perhaps more than sometimes – we get bogged down. We act, but we forget to dream. We work all day at planning, but lose heart in our gut when it comes to believing.


In my college and young adult days I was extremely active with the National Federation of the Blind. I attended some retreats the NFB had for young adult leaders in the group.


At one such event, we were discussing discrimination issues and some thoughtful person posed the question – how will we know when we’ve achieved equality? What does that really mean? What does it look like?


I was thinking the other day, how will the HPS Network change someday when we find the cure? I have to believe we will do it someday. Otherwise, why are we working so hard? What will that look like?


Of course that day will be such a glorious day. Our focus would likely change from diagnosing and research, to simply identifying people with HPS.


Someday, as has happened with other diseases that have found their cures, having HPS won’t be a big deal. It will simply be something to treat. Our stories, our hard work, will likely be forgotten when no one has to worry about bowel issues or pulmonary fibrosis.


It put a new spin on the cure for me.


We work to build a no-ego culture in the Network.


Imagine, our goal is that someday no one will remember our fight, no one will remember us and no one will think HPS is a big deal. They won’t have to even think about such things. That’s what the cure will look like.


Comments

Popular posts from this blog

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.


Just waiting: A continuation of my transplant story…

Photo: This is me the week before the transplant. The one with the roses was taken on Valentine's Day. My sister-in-law gave the roses Ryan had brought her to me.

To be honest, I don’t remember much about the time I spent in the hospital before my transplant. I’m not sure if that’s because it was pretty boring and routine, so there’s just not much to say – or if it is some kind of self-preservation maneuver my brain has done to shield me somehow.

After the big rush to get to the clinic early, we spent several hours in the waiting room with my luggage as if we were waiting for an airplane at the airport. It turns out the big rush was due to a hospital policy that the clinic couldn’t request a bed for me until I was actually there. The hotel Inova Fairfax Medical Center was packed to the gills, and they wanted my name on the waiting list. It was late afternoon before a bed became available. Looking back, I’m amazed at how calm we were sitting there. Perhaps we were compartmentalizing…

Family hunting

I’ve always had an interest in genealogy. I haven’t done anything about it really. Never had the time I guess. Perhaps it’s because I’ve always been a fan of studying history. Finding ancestors somehow feels like a personal connection to the past, as if the DNA populating my cells has some sort of time travel awareness of what has gone before. Of course that’s crazy.

When I was diagnosed with Hermansky-Pudlak Syndrome my interest in my roots, especially my Puerto Rican roots, intensified. Maybe it was the realness of mortality or the connection between my newfound fascination with genetics and how it connected me to my family history.

For years I’ve thought about whomever in my family tree might have had HPS. They would have lived so long ago that they wouldn’t have known what HPS was. It wasn’t really identified as such until 1959. My grandma Cockerill, whose father was from Puerto Rico, talked about relatives in Puerto Rico she heard about as a child that had died of tuberculosis. C…