I have found that the limits cystic fibrosis imposes on my life are a bit like weather forecasts -- open to unexpected changes. Whether by hard-fought scientific advances, thoughtful (personal) planning, creative thinking or sheer luck, many of the limits of CF now come with beautiful possibilities attached.
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Starting at 6 months of age, I began my daily journey battling my chronic illness, cystic fibrosis. And now, at 28, my heart is heavy because one of my nearest and dearest caregivers passed away unexpectedly … my father.
Hollywood often portrays people with serious illnesses as brave, inspirational characters. I don't always feel that way, and sometimes the real "fight" is facing that fact.
There are no easy remedies for the perpetual dance that the parents of a chronically ill child do to deal with the painful and enduring isolation. And personally, I found a sense of hopeless defeat.
Some days, the biggest struggle I have is accepting that I have CF.
Although my lung transplant was the end of one story, it was also the beginning of another, more difficult story.
There are a lot of misconceptions about illnesses. For one, you're supposed to look sick -- or like other people's perception of a sick person. Once I started to doubt myself and the gravity of my illness, I began internalizing a whole lot of guilt.
March on the Hill brings a mix of new and familiar faces to Capitol Hill every year. The connections and stories that our advocates share with their elected officials are making lasting impressions that impact the entire CF community. And as this event has grown, so too has the cystic fibrosis story.
One of the questions that we ask our representatives during the Foundation's signature advocacy event, March on the Hill, is to join the Congressional CF Caucus. Here is my story of what happened when I (accidently) asked a senator to join that caucus.
Watching a Bruce Lee movie inspired me to live my life on my terms.