Sunday, August 18, 2024

August 18: Maybe Polar Bears Leave the Pineapple

Polar bears don’t get headaches. Or, if they do, please don’t tell me. I have still been getting headaches, as if I hadn’t done my rescue remedies at all. Maybe somehow they only work if I suffer for several weeks first? Not only have I still been getting cluster headaches, but my hope and faith in what I believed was the solution is gone. My doctor has assured me that we can try again and if that doesn't work we can do Emgality, which would involve going into to get three large injections into my belly, rear, or thigh. Emgality was something I previously thought I might try and it sat in my fridge waiting to be administered by me or Carl, but every time I even considered it I imploded with panic. Anyway, this is a long way to get back to my first premise that polar bears don’t get headaches. Last summer when I studied with my Alexander Technique teacher Bruce Fertman, he led my group through various exercises involving animal imagery, and it was impressively impactful with changing how I felt and moved. The polar bear was the animal that was most helpful to me and it continues to help me now. I can’t simply tell myself that polar bears don’t get headaches. I have to build myself as a polar bear with my imagination to really shift my perception of how big my body is and how strong, fluid, and relaxed. I also bring in other animal images from Bruce that help me breathe, and notice when I have been holding my breath. All of that has been extremely helpful, and it was also not the instant magic answer to all of my problems as I had hoped it would be. 

Maybe polar bears also easily leave the pineapple on the plate. As I do not. To back up… Sarah helped me get groceries last week and asked that I get a pineapple. I did, and then one day I served pineapple chunks with a meal that she ate readily and easily. The next day I served pineapple again, and Sarah was having none of it. When she whined that she didn’t want the pineapple, I said she could just leave it on her plate. Instead she started throwing chunks off of her plate. Amy and I both got upset with her. Later, as Carl and I processed the whole occurrence, I realized that the girls and I could use practice with literally and metaphorically leaving the pineapple on the plate. Just as Sarah could have left hers alone with peace and equanimity, ignoring the fruit as if it had naught to do with her, Amy and I could have ignored Sarah’s upset and left that metaphorical fruit on the plate of the moment, as if it had naught to do with us. This is not so easily done for me, but maybe polar bears have an easier time.

Do polar bears have trouble with digestion? I don’t know. And if a polar bear is my answer, maybe Sarah needs a different animal, such as a fox, as her guide. Her digestive system has been having some difficulty for the past month, off and on. This past week was our week to have a relaxed summery time with beach days and not much going on, which was good since Sarah needed lots of nap time, fluids, and home facilities. I felt extremely stressed many times because just as I would think she was better then she would say she needed to hydrate or that she was feeling better, but that actually seemed to indicate that she was not feeling good. I always feel so responsible to have figured out what she needs yester-minute or as if it is my fault for the situation at all because if only I fed her differently or made sure she drank more water maybe things would be different. We have an appointment in early September to see her GI doctor to get more answers and guidance. It is hard enough to take care of one’s own body, never mind the body of someone else whose sense of time and conveying of information can leave me feeling like I’m navigating an Escher print. Add to this that Sarah started her period, and I’m about to start mine so instead of us always having soft snuggly care between us, sometimes my response to her upset and malaise was harsh, brittle, and loud. So then I got to feel like a doubly bad mom. It’s been a bit rough, even as we have also had many wonderful, joyful moments. 

The joyful moments have included me going on an outing with the girls to get a wheelbarrow, receiving help from a stranger in the parking lot who saw our plight as we tried to get it in the car (while I considered that I might have to leave Amy by herself at Lowe’s while I took the wheelbarrow and Sarah back to the house - but didn’t have to because of the help), getting Sarah-friendly ice cream despite set-backs of places advertising it but not actually having it, and finding a playground with swings that even worked comfortably for a grown-up. Another day we set out to do one small errand and ended up going to a Goodwill where the girls and I found some astonishingly wonderful things. I got some striped bell-bottom jeans, Amy found mermaid-scale leggings that somehow are an exact match for a jacket she found at a thrift store months ago in a different state, and Sarah found multiple pairs of perfectly Sarah-ish shorts. Amy also found many shorts and skirts, which is timely because she was down to basically one pair of shorts that really worked with her scoliosis brace.

Speaking of scoliosis braces, Amy and I had a zoom with the makers of the Whisper Brace and now that team of people is reaching out to Amy’s doctor and orthotist just as I am so we can get her the brace. If the Pittsburgh people who have taken care of Amy thus far in her journey don’t want to be trained in the new brace, then we will travel to Philly to make it happen, but hopefully we can usher in the start of a new option for bracing in Pittsburgh. The people who make the Whisper Brace would travel to Pittsburgh to train the orthotist and would return every three months to reassess the fit and continue the training. It’s a pretty amazing offer. 

We had Amy’s bestie and her parents stay with us at our mountain house for a few days, enjoying the beach together, playing games and music, laughing, eating, and relaxing. One night we played ping-pong, skeeball, and darts in our basement. Sarah eagerly wanted to try the darts, standing a few inches away from the board, moving her hand back and forth to aim, and then earnestly, sticking the dart directly into the board - but never giving herself the bullseye. Yesterday we went to the beach and a Bluegrass Festival. Sarah loved the festival and was extra excited when she realized we had purchased a carved wooden fox. She greeted the fox with delight, chin-presses, and kisses. Then last night she helped Carl fill the wheelbarrow with gravel and spread the gravel to new places in our driveway. 

While Amy has had her moments of being extremely frustrated with Sarah and feeling so mad there is no room for any other feeling, Amy has also been her usual incredibly wonderful self. On the day we were getting ready to leave for this vacation, I was out doing errands and Carl was working from home. We thought that meant Sarah wouldn’t end up crying outside on the corner for me, but we were wrong. Amy was at her bestie’s house right across the street and heard Sarah. She promptly went out and walked Sarah home with calm kindness. When Amy and her bestie enjoyed a day at the beach but Sarah missed most of it due to not feeling well, Amy ran over to greet Sarah when she did arrive. Amy even came up with a song for her sand ice-cream stand, mimicking Mink’s ice cream stand and song in the Frog and Toad shows that Sarah loves. 

Also, the best news ever . . .  Sarah will again have her beloved bus driver that she had last year!!!! 

Lots of love to you all. May you have an easy time leaving the pineapple on the plate.

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