My mom came to visit this week. It was good to spend some time with her and the kids in the family and all that, Yada Yada yada. We did a lot of touristy things. Last Sunday we had a big day in Prospect Park. We did the food truck rally, the kids got on a paddleboat for an hour in the lake. We actually walked in entire loop and we were out there for five or six hours. It was a great afternoon, one we are all going to remember.
But that evening in the shower I realized I let something happened that by today's medical standards was terrible. I had a little sunburn. [Oh no, no, no, cancer, cancer, melanoma, cancer!] I just wasn't gonna let that bother me. I've been through it. I spent the week being asked on a schedule if I could breathe or if I was incontinent. I've had four EMG tests, and about the schedule another one. I had a tube put in my carotid artery so that my blood can be filtered. I already had chemotherapy.
I actually embrace the pain and started singing in the shower. I misremembered the lyrics to this Warren Zevon month song. I started singing.
"I went down to the Louvre to bang my head on the wall. Because I'd rather feel pain than nothing at all."it is actually...
I really started to embrace that mild sunburn pain. Every time I felt it it reminded me that I had gone outside. I had a great day. I was outside, alive, not dead.
As long as we are talking song lyrics. I came up with a motto for the week. I didn't realize until I googled it but Frank Sinatra made it famous.
I'm Gonna Live Till I Die
Two other things past my fielded of vision this week that kind of relate to what I've just been talking about. You see, for me I enjoy life by experiencing all of it. I am okay being cold or sunburnt if it gives me a chance to do what I want to do. I don't mind being uncomfortable or even in a little pain if it means doing or experiencing what I want.
I also took my mom to my gym and she seemed very concerned that I would hurt myself or get tired. She did understand that that was my goal. There will be some pain. I plan on exhausting myself. We also went to the newly built Whitney Museum. On the top floor they had a café and a giant outdoor terrace. The view from that terrace was a work of art. By only turning your head you can see Jersey City, the Statue of Liberty, the World Trade Center, 40 Wall Street (a Donald Trump owned building that he said was the tallest building in lower Manhattan on September 12, 2001), the Woolworth Building, the towers of the Brooklyn, Manhattan and Williamsburg bridges, the Con Ed Building and the friggin Empire State building. You could also look down at the Highline and the playgrounds on the rooftops of the lowrise buildings around us. My mother didn't want to go outside because she would be cold. I didn't understand her response. Cold.!? I can understand why she wouldn't go out, "sowhat, you'll be called for 30 seconds" I thought. But I didn't say that out loud, then I suddenly realized something; my mother is not me.... While I am okay being cold and wet in order to enjoy a view, my mother didn't think of you was worth giving up being warm and dry.... And that's okay, it's not up to me to define what makes my mother happy.
And I got this comment from a fan on Facebook. This is the question I was asked to answer: How do you make someone [who has GBS] go out and do things? Do you push? At what point do you just say F it, do what you want, which is nothing. I hope I made sense my thoughts are always in a jumble.
Linda, my wife doesn't make me do anything. She helps me do what I want to do. If I wanted to sit home and eat ice cream all day she would loosen the lids on the Haagen Daz and clamp a spoon to my hand before she went to work.
GBS changes people in many ways. Maybe your husband doesn't want to go out? Maybe wants to stay home and be comfortable? Your husband is not your child, he is not you, he is not me. I don't think you could assume that what used to make him happy will still make him happy. Don't just say 'fuck it do what you want', maybe ask him what he wants. I hope this makes sense, my thoughts have always been in a jumble.