Last week, my senior chemistry students had a discussion in class about drug discovery and pharmaceutical ethics, something with which I am intimately familiar.  

One of the advantages of being me (a PhD scientist with CF and CFRD) is that I can tell my students about real life examples – the Phase IIb clinical trial that I was a part of for Pulmozyme, the research surrounding Orkambi, Trikafta, and other modulators, the cost of pharmaceutical drugs and insurance difficulties (pharmacy benefit manager plans anyone?).   

I don’t mind getting to give my students a glimpse into the life of a patient with a chronic illness.  It actually helps me, to be honest.  It gives them a face to put with a disease, a number to put with a cost of living.  And it gives me the opportunity to answer their questions honestly.  

The one they asked me last week, though, gave me pause:

If there was a cure, would you take it?

It’s not the first time I’ve been asked that question, and it likely won’t be the last.  But I don’t like to live in the “what if” world.  I’d rather live in the here and now, where things can be difficult, yes, but they are real.  I know that CF is slowly stealing the days I have left, that it’s all about stopping the progression of the disease.  I know that the likelihood is that my family and my students and colleagues will say goodbye to me sooner than other people.  I know that the medications we take do not stop the progression, only slow it down.  

But despite all of the hard things about CF (and there are many), there are glimpses of hope and joy as well.  Organizations like Breathe Bravely wouldn’t exist without people like Ashley.  Communities like ours, bonded around a common life experience, wouldn’t be the same.  My own career path would likely have been very different – but I had a motivating factor that pushed me toward teaching and CF research.  

I am who I am because of my CF.  My career is influenced by my CF.  My faith story is wrapped around my CF.  It is intertwined with who I am so closely that to think of life without it is…different.  

Do I wish that no one else had to go through the things we do?  Absolutely.  

Do I wish that I could take away the pain and suffering and difficulty that my friends are walking through?  You bet.  

Would I take a cure if it was offered?  Probably.  But it would depend on a lot of things and the time of my life.  It would depend on the research and the scientific knowledge.  I can be a lot of things without my CF – but I am also more than my CF.  It is not the only thing that makes me who I am.  Sure, it is a big part of my life.  But for me, a cure is more about making the lives of those around me better.  I’d want to see it given to people like you, adults who have made the world a better place because of who you are and what you have overcome, to the kids who still have so much life in front of them.  

But again, I don’t like to live in the “what if”.  Today, I’ll hug my kids and play with them, teach my classes, mentor my students, kiss my husband, and be grateful for the day I’ve been given.  And I’ll do it all over again tomorrow, God-willing.