Triumph – MayDay 2014
It was an experiment.
To fly across the country. To participate in the MayDay2014 protest outside of the IDSA in Arlington VA. My mother offered to take me down from New Jersey to the protest, and my Aunt Penny from San Diego would be joining us too. My daughter Arielle lives in DC. Three maternal generations would be there! For months I had been looking forward to attending this event. MayDay Project was something I could do that was constructive in this war on Lyme. And I was looking forward to meeting my East Coast Lyme Facebook friends.
On the morning I left California, I had serious second doubts whether I could go at all. I had a serious hangover (from Lyme – I don’t drink), I was shaky, lightheaded, and exhausted. My husband Scott did as much as could for me to get me ready; he made breakfast, packed snacks, got the house ready and helped pack. We said goodbye to our doggies, Samson and Earl.
We flew United on earned miles. All the United air crews and ground personnel were great. We used wheelchair assist and that worked fine because I couldn’t have walked between the terminals without taking frequent rests and risking a heart event. But the hours of sitting up on the plane exhausted me. I can’t sit in a regular chair for more than ten minutes, and even that is uncomfortable.
We visited family in New Jersey, and attended my mother’s retirement party from Cook College, Rutgers (she will never retire, she exhausts nine year old children with her drive and her curiosity). We stayed with my mom on the farm – it was so beautiful! It felt good to be back in New Jersey surrounded by family.
My son Josh went hiking with his Uncle Jim and his cousin Brian. He came back with a passenger. A little tiny tick on his upper thigh. I collected it in an empty medicine bottle with a damp cotton ball to send it to be tested. We called our doctor and set up an appointment. Josh was returning with Scott earlier than me. The next day Scott was walking around the farm woods and came back with a tick as well in his groin region. They apparently didn’t believe me when I said to put tick protection on. I collected that one as well and sent if off to UMASS.
UMASS has a great lab, it is easy to sign up online. One tick was positive for Bb and Babesia, and one tick was negative. They tested for three things. They catalogue the ticks and store them. There was a long list of add on tests that we can order later. I sent my boys home to see our doctor in California.
Girls trip to DC. My mom, my Aunt Penny, and my daughter. We brought my wheelchair down with us. We stopped at a rest stop on the Turnpike and bought Lime green hats.We checked into an Arlington hotel just up the road from the protest and headed over to the planning meeting. Quite a few people had attended the protest before, and a few people were organizing the event. Melissa Ann, Jules, Lisa, Allison, Sabe Mo, Bruce, and Josh. Other people were instrumental to the protest but they just couldn’t make it.
Josh introduced the strategy . Recognition, research, revise the guidelines. We were not advocating long term antibiotics treatment. Because the IDSA characterizes us as Lyme loonies, we had to come off as serious and respectful. Josh and his team had worked closely with the local police to make sure we were following the local laws. They appointed my mother and my aunt as marshals, along with other volunteers. They had ready at hand lime green poster boards and sharpies; we made signs. Several people invited me to go with them to get a late dinner. I was happy they invited me and I wanted to get to know them, but I was too exhausted.
The next morning was a bright sunny morning. There were fears that it was going to rain but it was a perfect day for a protest. You couldn’t miss it – a throng of people dressed in neon lime green holding lime green posters; it was a beautiful sight. I was nervous but determined. We parked ourselves on the corner and quickly joined the protest. Such energy, such camaraderie. People were in wheelchairs, people with walkers, people with IV poles. Quite a lot of people knew each other from other protests. Newcomers were made welcome including me.
It was lovely to be there with my family. My daughter, my mother, and my aunt quickly made friends (that is my family!) I felt loved. Lots of people had to lie down during the day from exhaustion. I had to too even though I was in a wheelchair. I just couldn’t sit up anymore. It felt safe around people that understood without asking questions.
We gathered lots of attention. Passersby were curious and empathetic to our cause.
We shut down the IDSA on the second day. They sent out two times personnel to talk Josh, one time, and the other they let at Allison and Josh go in and address what the protest was all about. They said “We hear you.” That felt like a triumph. In all these years that Mayday protest has been going on, they never gotten feedback like that. You could feel the vibrance, relief, excitement, hope.
Reporters started showing up. One TV reporter was great! He constructed a thoughtful piece and MyFoxDC aired that night!
Afterglow. I completed my trip by resting at my sister Jeanne’s shore house in Ocean City, NJ. I crashed for three days. I only went to the beach once.
I flew home alone. It was amazing. United made me feel safe and attended to.
I was glad to get home to my love and my doggies and my couch. I felt satisfied. I made it across the country to connect with family, and to do something constructive. I made it back home! The experiment succeeded beyond my expectations…
lyme lifescapes with caroline 
