How did the Path to Basel Switzerland Unfold?
I didn’t know what an ALS advocate did. I wanted to help people living with and or impacted by this 100% fatal disease.
Diagnosed with amyotrophic lateral sclerosis November 18, 2019, Dora, my partner of 23 years passed away 76 days after diagnosis. After her funeral, my friends Patches and Michele took me out for lunch, then me and Patches went to the cigar bar.
The next day, I had no idea what to do. I looked at the beautiful vase of blue and hydrangea arrangement Ann made, then walked the dog. I prepared hot tea. I couldn’t even think of sitting on the front porch. It was just too hard. I took my old folding chair to the small back porch. I sat and looked at the dog and the cat. They looked at me.
The next day, I sat on the back porch and read a spiritual book. Before long, I started listening to spiritual teachers like Caroline Miss and Abraham Hicks. I started learning terms like manifesting and alignment. I started noticing synchronicities. At first, I thought I was crazy, then I realized things were really aligning. The first thing I desired was to be an ALS advocate. I didn’t know what an ALS advocate did. I wanted to help people living with and or impacted by this 100% fatal disease. In four weeks, I was an ALS advocate with I AM ALS. By the end of 2022, I had grown as a person and as an advocate. I learned to let the path to my desire unfold.
At the virtual 2022 ALS/MND Symposium, during the poster session, a participant asked, “Are you attending the 2023 ALS/MND Symposium in Basel Switzerland?”
“Uh…” I’d never heard of Basel Switzerland, never traveled outside of the country. Didn’t even have a passport. “I don’t know.”
In June of 2023, I wrestled with the idea of submitting a poster abstract to the ALS/MND symposium. At the time I served as the co-led of I AM ALS Many Shades of ALS team and I AM ALS Write Stuff team. At a Central Mississippi Buddhist discussion meeting, I listened as Larry casually mentioned that he’d spent time in Basel Switzerland. I was blown away. I’d been with the organization for two years and had never heard Larry talk about his time in Switzerland.
In the meeting, I shared my desire to submit my abstract.
“Do it!” Larry said. “I wlll be chanting for you.”
I submitted my abstract. I also applied for the ALS/MND Patient Fellows’ program. This program provides funding for fellows to attend the symposium and it expands my advocacy community from national to international.
I suffered from survivor guilt. Dora and I wanted to travel out of the country and now I’m traveling after her death.
By August, both abstracts were accepted and I was selected as a 2023 ALS/MND Patient Fellow, but I didn’t have a passport. On the heels of a government shutdown, I was worried that my newly applied for passport wouldn’t arrive in time.
One afternoon, I called my health insurance’s customer care line because I had some questions. The agent was kind He answered my questions, but I didn’t like the answers.
“May. I think about this,” I said.
“Sure,” he said. “Let me give you my number and I wil spell my first and last name.”
With pen and paper in hand, I said, “Ok.”
“It’s BASEL—
“Basel? I said. “As in Basel Switzerland?”
He explained that he was Arabic and his father named him Basel because the word means courageous or brave. I had to have courage to fly out of the country for the first time by myself.
When I boarded the flight from Atlanta to Amsterdam, I had stepped away from all of my leadership roles at I Am ALS. I suffered from survivor guilt. Dora and I wanted to travel out of the country and now I’m traveling after her death. I felt horrible. Money was extremely tight. I accepted help from Flounce donors and for nine days, I had the courage to step out of my world of poverty. I left behind my poorly maintained house, my overgrown yard and my feelings of inadequacy. I was scared shitless. I Stepped into a new world.
Breakfast in a beautiful glass room with natural light, the smell of coffee an array of meats, cheeses and breakfast delights awaited me each morning. People wanted to talk with me - ALS doctors at the top of their field, social workers, CEOs of ALS organizations, pharma representatives, Uber drivers - even those who didn’t speak English.
“I don’t speak English,” one Uber driver who drove me to pick up my posters said. “I’m from Cuba.”
“Cigars,” I said.
And we spent the ten minute ride saying the word cigars and laughing.
At the poster session, I was overwhelmed with people wanting to talk with me about my posters.
I learned a lot about ALS research, the clinician’s role in this 100 percent fatal disease and I learned more about different people living with ALS. I met new friends!
During the month of May, ALS Awareness Month, I will talk more about my spirituality, my writing and my ALS advocacy.