When I began my graduate school career just over a year ago, I never imagined that this is where I would be today: discussing the disease that I have fought my entire life (and will continue to fight) as an outside observer.  Many scientists study aspects of disease without ever having experienced them themselves.  Many doctors treat patients without ever having had more than a simple cold.  Scientists and doctors have to distance themselves from the patient, from the disease, so that they don’t get too involved, too invested.  So that when their patient dies, they don’t feel like it was their own child.   So that when their experiments don’t work and their clinical trial fails, it doesn’t feel like a life-and-death situation.

But I have the privilege to have the unique perspective of working on the disease I have.  That means that I have had to be more vocal about why I am motivated to do what I do.  That means that I can’t hide behind empty words or simple meaningless phrases telling people that I’m okay or I just have a cold.  I have to be honest.  Yes, I know people with CF and that’s why I’m motivated to do what I do, but it’s also because I do too.  And that makes being a scientist working on CF and CFRD infinitely easier, but also infinitely more difficult too.  It means that the experiments are personal, the end goal is personal too.  The failure of an experiment is more difficult, the success of one is more elating.  But more than anything, it means that I care.

I’ve said many times before that I do what I do for others, for the generations to come, for someone else to have a better quality of life.  And I do.  But it makes being a scientist working on this more personal.  It’s hard for me to talk as an outsider about CF to my colleagues, because I’ve lived it.  It’s hard for me to separate my work from my life because I work on my life.

But I think it makes me a better scientist, a more honest person, and a more motivated woman (and therefore intimidating).  I think that God has uniquely blessed me to have CF, to be where I am right now doing what I’m doing, to be healthy enough to do what I love, to be in contact with families and friends whose lives have been affected by CF, to teach, to love, to care about so much and so many people.  I have been blessed.  🙂