In 2008 I got very lucky - I joined the Coast Guard Historians’ Office as the Coast Guard Museum Curator and am one of two curators for the Coast Guard Heritage Asset Collection. I’ve been a curator for 30 years and have worked for the Coast Guard for twelve years this November. I am the only staff member responsible for a collection of over 7,000 items, which includes Douglas Munro’s Medal of Honor and Joshua James’ medals. I do the work that, in an average museum, would be five jobs: director, curator, collections manager, exhibit designer, and educator, so my job changes from day to day. We just launched a wall-to-wall inventory of the Heritage Asset collection held in custody at the Academy.
I also have early-onset Parkinson’s Disease. Shortly after moving to New London, Connecticut I began experiencing muscle weakness and spasms and loss of coordination. Doctors tested me for everything from ALS to nerve damage. I was finally diagnosed at the Institute for Neurodegenerative Disorders in New Haven, CT.
For the first few years my Parkinson’s was kept under control with medication. By 2014 my symptoms escalated rapidly. I lost control of my legs and spent most of 2014 and 2015 in a wheelchair. After I was hospitalized in November 2014, it was decided that I needed to have bilateral Deep Brain Stimulation surgery if I was going to improve my quality of life and keep working. In May 2015, I had the first of two successful brain surgeries. The Parkinson’s is still progressing, but the surgeries have helped me stabilize and keep some of my independence.
I’ve learned a lot in the ten years since my diagnosis. I’m still scared of what the future holds, but I will keep doing the work I love to do as long as I am able. Three of the things I am most proud of happened during these ten years: 1) 2012 renovation of the USCG Museum, 2) 2013 overhaul of the Officer Candidate Coast Guard History Class, and 3) my participation in the Progressive Parkinson’s Markers Initiative clinical study.
The toughest lesson I had to learn was that accepting help from those who offered did not make me a burden to others. I learned this thanks to the Coast Guard community who showed me I belonged to something larger than myself and offered an outpouring of support and encouragement. Simple acts of kindness kept me going.
As a curator I get to meet a lot of Coasties through tours, programs, and classes - many reached out to me with prayers, notes, and well-wishes. The Academy Public Works staff offered to adjust the brakes on my wheelchair and others checked in to ensure I made it into work on snowy or icy days. Then there were acts of generosity that took my breath away. A group of Coast Guard Academy DCs volunteered their time and labor to make my first-floor bathroom handicapped accessible. Fellow Coast Guard civilians donated an astronomical amount of leave allowing me to recover fully from both brain surgeries.
The most memorable act of support I received was at a Coast Guard Academy morale event where members of the Coast Guard, NOAA, old friends and family came out to watch the Academy barber shave my head the Friday before the surgery. It probably was the weirdest event ever held on campus, but it was exactly what I needed to get through the surgery. One of my old friends stated how amazing it was to watch the Coast Guard save someone from drowning on dry land.
This is ultimately why I decided to write my story for NDEAM. Any chronic, progressive disease will take as much an emotional toll as a physical one. It can make you isolated, despairing, and worst of all, without hope. I honestly don’t think I would have made it these past ten years without the friendship and support of people in the Coast Guard. There are far too many to name, but I especially want to thank the CGA community and my colleagues in the Historians’ Office (CG-09223). They have been on this journey with me since the beginning. I can’t thank you all enough for giving me a reason to keep going.