February 2nd, a very sad day for Mandi and me, but neither of us have to endure it alone.
During my twenty-three year relationship with Dora, February 2nd came and went without incident. In the early morning hours of February 2, 2020, however, Dora passed away from amyotrophic lateral sclerosis(ALS). Now, the dete is a huge part of my life.
A few weeks after her death, I joined I AM ALS’ Thank You Squad, a team that writes thank you notes to donors. It is a wonderful, laid back team with lots of laughter, tears and discussion. While serving on this team, I met Mandi Bailey, educator, photographer, ALS advocate, writer and awesome friend.
I came to I AM ALS alone, heartbroken and afraid. This was my first major step without Dora. Who would love me now? With so much of my identity wrapped up in my unworthiness, guilt, lack and uselessness, I took my place on the Thank You Squad and embraced many new friendships including one with Mandi.
“My stepdad died on February 2, 2018,” she texted one day.
“We’re sisters!” I texted back.
When I joined I AM ALS, I was clueless about what I could do as an ALS advocate. Dora lived only 76 days after diagnosis and there was so much we didn’t have. How can I help others? I soon realized being myself and finding my passion was key to my advocacy. Together, Mandi and I served on several I AM ALS teams, collaborated on projects and I felt comfortable sharing my fears with her. For example, during the Ice Bucket Challenge in August 202I, I didn’t have ice, so I used mini popsicle molds to make ice. I was horrified when my ice came out looking like mini frozen penises.
“You have to use what you have,” Mandi said.
In 2022, I decided to submit a poster to the ALS/MND Symposium on behalf of the I AM ALS Many Shades team. In addition to designing a poster on behalf of the Veterans Affairs team, Mandi served as my mentor. Since the symposium was virtual, each poster required a video explaining the project. I had difficulties connecting my audio to my video, Mandi got it done in minutes. At the virtual symposium, I had trouble logging onto the platform. Mandi logged into my poster session until I was finally able to log on.
On a sunny day in May 2023, I watched the blue flags sway in the gentle breeze at the I AM ALS Flag Event. Each year 6,000 flags are planned on the National Mall to represent the 6,000 people diagnosed with ALS each year.
“Katrina!” Mandi said.
“OMG!” I said, as we embraced. This was our first time meeting in person.
After the speaker series, Mandi and I joined other ALS advocates on Capitol Hill to advocate for Veterans living with ALS.
In October of 2023 Mandi received an ALS TDI Leadership award during the ALS TDI Leadership Summit in Boston. The next day, we explored Boston with our friends Caroline, Lisa, Michelle and Mandi’s husband, Chad.
Later that evening, we attended the ALS TDI White Coat Affair. We tore up the dance floor at the after party.
All of my life, I’ve feared the worst. On February 2, 2020, the worst was a reality. The worst was etched into my heart, my mind, my soul forever. I never imagined love, joy and friendship existed for me after Dora’s death. It does exist for me.
February 2nd, a very sad day for Mandi and me, but neither of us have to endure it alone.
I love this! Friends appear when we need them.