The TOS daughter and I went to artprize, a city-wide art competition where people vote on their favorite art on display through out the city at several different venues. Lots to see and lots of waking.
We both began our day excited about all the new things we were going to see, feeling energised and prepared for the day ahead.
As usual, we thought ahead about what to wear, light layers-nothing heavy that would cause symptoms to flare.
Walking around with hands in pockets is pretty common for both of us. We noted to each other partway through the day that our necks hurt. We had both been putting our hands in our coat pockets to avoid walking with them hanging down-which surely causes neck and upper trapezius tension. But the weight of our hands in our coat pockets pulled our coats down on our necks and had the same result-neck pain.
TOS daughter said she tried walking with her hands in her pants pockets, but that just made her have to pull her pants up more-which caused arm and neck strain, so it was a no-win situation with the pockets today.
(photo of the breathtaking exhibit Intersections, by artist Anila Quayyum Agha.)
One problem for TOSers with being out and about when there are alot of people is that there are social requirements-like holding the door open for the people behind you. Many of the artprize venue doors in downtown Grand Rapids are very heavy and difficult to pull open. I try to use my foot to help open and to hold doors as much as possible.
It wound up being easier to just open the door and let people entering behind us to go ahead instead of awkwardly holding the door with one arm from behind while still walking forward...really hard on a TOSer arm.
TOS daughter said she was perfectly fine with the fact that the shoes she wore to walk in all day made her feet hurt, because her aching feet distracted her from the pain in her arms and neck.
Also, several art pieces were hung up very high. TOS daughter wanted to lay on the floor to look at some intricate ceiling detail. We both had to just stop looking up at things because we were going to both wind up frozen, unable to move, looking like one of the exhibits! It's funny to us that we can commiserate about the same quirky, TOS way of handing things; we get it, but nobody else would.
It was a rainy, windy, and chilly day for walking around the city all day. The weather alone was enough to make muscles tense up and cause TOS pain to flare; you know how TOSers are living barometers! We both forged ahead through moderate headaches all day.
Though we had our TOS things to be mindful of through out the day, it was an AWESOME day!
SO much gorgeous, lovely, fun, thoughtful, heartbreaking, beautiful stuff to see. My personal favorite piece was a glass mosaic, Into the Autumn Woods, by artist Sandra Bryant. Wow.
I was captivated by artist Christopher Capozziello, and the photo exhibit of his brother who has cerebral pasly. Christopher asks some pretty raw questions that people who live with, or who watch loved ones live with painful physical conditions ask. "I want answers. I want explanations for why some suffer and others do not." The last frame of his exhibit is of his brother hugging their mother, with a thought about how he has personally learned how to live by watching his brothers life.
Another touching piece, by artist Eric Staib, is a painting that depicts the downward spiral of questioning, suffering, and some of the very real thoughts and emotions of those who suffer.
I kept thinking today how the world and life is just like the art we saw all day; sometimes so incredibly
moving and beautiful, and sometimes so horribly sad and dark.
If you have TOS, or a related physical challenge, I encourage you to get out and take in life. Even though you have TOS as a thing to manage, don't miss out...go see and do and live!
We know it's not easy, living with TOS pain can be a depressing hassle. Even with all the things we TOSers have to stay mindful of just to function, we still can, and should, live well...even with TOS.