I remember being taught as a young girl that the word “hate” was very strong, being encouraged to not use it describing how I feel about a person. I think that’s fair. But over the past number of weeks I have felt a lot of hate. It’s a feeling that I have never felt before, not toward a person, or even a thing.
I have spent some time writing and sharing stories about living with and being married to someone with CF. I try to be positive, optimistic, hopeful, and funny (not sure I’ve succeeded on this last one). Eamonn and I genuinely try to live our lives with these attitudes in defiance of a situation that would seem very bleak. But right now I feel hate because I deeply, passionately hate CF.
I very consciously have not shared much about Eamonn’s older sister, Kate, who also had CF, out of respect for her privacy. However, she was a big influence on how we have learned to cope with the disease and having it motivate us to really live, rather than dragging us down. Kate has been our brightly shining example of living rather than surviving.
I didn’t ever tell her this, but Kate was truly one of the best people I have known, and ever will know. I remember feeling intimidated the first time I met her because she and Eamonn were talking about Star Wars, quoting movies I had never heard of, and I knew right away that she was someone who I really wanted to like me—and not only because I loved her little brother. Her laugh was contagious. Her smile was the brightest thing in any room, and would only make you smile back. She defined what it meant to be a genuinely loving person. But most of all, she was one of Eamonn’s first role models as his older sister. They shared many bonds, one being that they both had CF. For most of his life, Kate was mainly a role model for how to live with exuberance and bring joy to others’ lives. As Eamonn got sicker, her role developed, and she taught him how to overcome challenges, not letting them keep him from living the way he wanted. Simply put, Kate was our hope.
I hate CF, and always will, but that hatred can only go so far. As much as I detest the disease I also know while it never defined Kate and Eamonn, it shaped them as human beings. It’s a part of what makes them such powerful, strong, courageous, and brave people. This world is a little less bright without Kate in it, and it’s hard to imagine our lives without her giggle, her random Facebook posts, her excitement for all things “mini,” and her endless positive spirit. But I know that despite her not being here, Kate’s influence on all of us will last forever.
May is CF awareness month. For the past 7 years, Eamonn and I have organized a team of family and friends to walk in the annual Great Strides Walk. This year, I cannot be there with my team, but they are still walking tomorrow! Please do your part in supporting the CF Foundation by joining team Rock-It-Lungs tomorrow, May 18th at Soldiers Field Road (sorry this is last minute), or donating to our team here.
But don’t just donate because Kate died, or that you hate CF—donate because you don’t want this disease taking one more incredible life.