Multiple sclerosis meets two forces of nature named Arthur
I was fortunate to grow up in a beautiful, quirky, fun town that managed to be a fishing port and a gay resort; an artist colony and a tourist destination. I can’t imagine growing up anywhere more interesting than Provincetown in the 70’s.
Hanging out on the main street filled with shops, beaches, ice cream parlors, restaurants, bars, and the best people watching imaginable was its own celebration. But we townies were not content to settle for the usual holidays; we had to create our own to kick off the summer season in a big way.
In honor of our fishing heritage, the last Sunday in June was the blessing of the fishing fleet by the local bishop. Since most of the fishing families came from Portugal, linguica, wine, dancing and Portuguese flags filled the area. The days leading up to the blessing consisted of party after party culminating with the main party on that Sunday.
This day also kicked off the swimming season. It didn’t matter if May had been a record filled, month long heat wave or if the Blessing of the Fleet fell during a hurricane. That Sunday was the first day your parents let you in the water- usually by pushing you off the bow of the fishing boat near where they were grilling sardines…
We would have barely settled ourselves when the Fourth of July rolled around. As much as we loved Portugal, we loved America more and so even more parties ensued. Parades, fireworks, barbecues and all things Americana were part of the second summer holiday.
Still hopped up on Portuguese sweet bread, I got myself ready for apple pie. And I wonder now where my sweet tooth comes from.
Our town was so quirky that my middle class family lived next door to a world famous nightclub performer known as Arthur Blake. I guess some would call him a drag queen but he preferred the term impressionist and people came from all over to see his show. I just knew him as the guy next door with the two little dogs.
This was how fun my life was when 1976 arrived and my town was to celebrate the Bicentennial. Mr. Blake had trunk loads of accessories for his shows and so he gifted my sisters and I with hats, pins, and boas all red, white and blue.
As one of the floats with a rock band on it passed by, the super cute lead singer looked at my dressed up self and said, “Now there’s a real bicentennial babe!”
Yes, that was me, a bicentennial babe ready for fun and celebrating and loudness and energy and whatever else it took to properly celebrate something as big as the country where my family came from and the country of my birth.
The only problem with all of this was my grandmother, who lived next to us. Her house and yard were even closer to the beach and the main street where all the action was, yet she had no interest in all of this excitement. She could watch all the festivities from a lawn chair inside her own gate yet we had to push her to do so.
Why wouldn’t she want to take part? After all, she had me, her adorably sweet, perfect granddaughter to help her celebrate. She also had my sisters and my cousins too I suppose, but they weren’t as cute. Yet, for some reason, she would complain about the heat or the noise or the crowds or the lateness of the hour of the fireworks. I couldn’t figure out what was wrong with her!!
Fast forward many, many years, like almost 40. My poor grandmother is gone, as is my neighbor with the cool stuff, Arthur Blake. The Blessing of the Fleet celebration has turned into a four day extravaganza called the Portuguese festival with even more food, more music, more people and more flags.
And I am no longer an adorable kid excited for the events that kick off an awesome summer. I am a woman with MS who is suddenly very, very tired and is having a hard time deciding between standing directly under the hot sun on the comparatively quiet sidewalk verses sitting in the shade under the super noisy tent.
I don’t know what to do, which would be easier for me. I decide to have a glass of Portuguese wine to try to figure it out but with the very first sip I start to sweat profusely. I consider a walk on the beach to cool off but suddenly the beach seems very far away.
Plus, if I get myself covered in salt water I will need to shower when I get home and I absolutely cannot figure out where I will get the energy for a second shower today.
The normally pleasant music is gnawing on my brain and seeing friends means standing in one place to talk to them which is making my legs ache beyond belief. And now just watching the dancers is making my feet start to hurt too. The parade is still hours away.
When did this stop being fun? Oh I know, a nasty life change having something to do with multiple sclerosis might be part of the problem.
But I did all the MS things I am supposed to do before exerting myself.
I balanced and balanced and balanced some more.
I kept hydrated and wore cool clothing.
I actually used my handicapped parking placard and not just to save money this time but to actually be closer to the event. (Our town offers the disabled cheaper parking rates.)
Yet I don’t remember being this tired and this miserable during this very same weekend of my childhood.
True, I’m sure depression over Portugal being booted out of the soccer world cup tournament didn’t help but still…..
I manage best as I can but take it easy on the day of the actual blessing.
And I try not to berate myself too much when thinking about the very next weekend when I will be celebrating America. Strange that taking a pass on that parade does not seem like such a bad idea. Even if I am able to drag a beach chair to the parade route and sit down while watching, the heat and humidity that will surround me don’t seem worth it.
And the fireworks, well, suddenly my pj’s and a repeat Shark Tank seem like fun too.
I realized I had become my grandmother. And I didn’t even have a cute little version of me to try to help me find some energy for the 4th. I worried that if I didn’t participate in the activities I would be a bad American, especially since I had done my best to grin and bear it through the Portuguese celebration.
As I stressed about this a couple of enlightening things happened. First, the USA was also booted out of the World Cup. My two favorite countries both out and hockey season still months away? No wonder I felt deflated.
Then the news people started to talk about Tropical Storm Arthur. Not my old neighbor Arthur Blake who was his own force to be reckoned with when he was on stage, but a real storm named Arthur.
With the communities monitoring storm Arthur, holiday plans shifted and changed and I couldn’t keep up. I didn’t wish for Arthur, the storm, but I took his presence to mean that if I miss the festivities, it doesn’t mean I don’t love America. It only means I love America enough to have the freedom to do what I want on this 4th of July.
Maybe my grandmother was right all along. Maybe she just loved her country enough to know she didn’t have to be pressured into having fun, even if that pressure came from her overly dressed up granddaughter.
And if it’s pressure, maybe it’s not so much fun.
And if you are free, then you are free to be boring, although I don’t recommend it on a regular basis.
So, however you choose to celebrate America, with Arthur or without, Happy Independence Day friends!!!
Don’t forget to pick up a copy of MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis for some laughter filled summer reading. While I might still be resting up from one holiday and not quite recovered in time for a second, I will always have time for a good giggle or two…