I have always been an adventurous person. I went to culinary school. Cooking turned out to be more of a hobby than a career path for me, so I began working in information technology. I also taught scuba diving and traveled to some the world’s best diving spots. I live in Annapolis and love sailing on the Chesapeake Bay. I raised two beautiful daughters – Pearl, 19 and Julia, 17. My daughters have been increasingly assisting in my care. We look for humor in the tasks I can no longer do. Putting on socks always leaves us laughing because it’s such an absurd thing with which to need help.
In October 2016, I was diagnosed with ALS. I spent several weeks in a funky sadness, questioning everything I have done in my life. I withdrew from people I loved and spent many weeks staring at the ceiling while lying in bed trying to figure out why this was happening to me. Telling my daughters was one of the most painful things I’ve experienced. They were 13 and 15 at the time. They were in shock and it took several days for them to understand the full weight of what was happening.
However, in late December 2016, I realized that this was an opportunity for me to make some major changes in my life. I decided that living life as best as I can is more important than worrying about what might happen to me in months or years from now. I decided traveling extensively was what I needed to do. Since January 2017, I’ve been to fifteen countries. I’ve met some incredible people along the way and have grown existing friendships into relationships that resemble family.
I am planning future adventures with friends with the help of my new wheelchair, purchased using funds from my BBF PALS Grant. I consider myself a person living with ALS rather than a person dying from it.
I’ve always been told I am a very caring and considerate person, even before I started taking care of my dad.
Being a caregiver is not something I would have expected at such a young age. It has been challenging at times but could also be considered a gift. Every week when I am doing something for, or with my dad I learn something new. In the moment I usually am not as open-minded, however, over time I have recognized myself applying this information into the task at hand. I worry one day I won’t have my dad there to teach me more lessons.
My dad is someone very dear to me. We have always had a very joyous and understanding relationship which we have continued to maintain since his ALS diagnosis. Although he is physically limited, we enjoy spending time together cooking meals in the kitchen where both of our minds and my hands work together to create something new and exciting.