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Wheels

7/27/2022

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​Eric grew up around bikes. He was a bike mechanic and a bike racer. He was really into bikes in the past, and still likes to ride them and read about them. When he came across an assisted-motor tricycle built for people with disabilities, he immediately thought of me. The company, Utah Trikes, is small. They import parts from Germany and build them according to customers’ needs. He contacted the owners, and bought it thanks to the aid of generous friends. After the brain was no longer exposed, I started trying it. Eric thinks that once I get the hang of it, I’ll be able to visit friends in the neighborhood and go for rides on Madam Brett and Beacon’s rail trails with him and Nathan. Still, the trike is too wide to cross doors, and if I got in I’d have to transfer to a chair, which isn’t that safe. This means that I’d feel uncomfortable going to stores or coffee shops. So, I couldn’t go anywhere by myself – I still need help to move around.
            But when Kelly came, she said something that totally surprised me: wheelchairs could be changed every five years, and my wheelchair (manual, and therefore hard to maneuver with just one good arm and hand) was getting close to five years of use. So, it could be changed to an electric wheelchair, and the health insurance company would take charge of the cost. I envisioned all the things I could do with an electric wheelchair and was overjoyed. Imagine that! It was small enough to cross the threshold of coffee shops and friends’ houses; small enough to let me move around the aisles of stores; and I wouldn’t need to transfer to a chair: it was a chair itself!
When I eventually have the two vehicles, I’ll be able to do lots of things. Not only will I go visit friends in their backyards and bike trails with Eric and Nathan; I will also meet with friends at coffee shops and go to stores to buy medicines or other things I may need. By myself!
The two vehicles will give me a sense of independence. They will make me feel free. But I will need to overcome the fear that independence will cause: the protection that dependence offers (the boundaries it draws that I’m unable to cross) will be gone. I will be able to go everywhere I don’t want to go…
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Singing

7/16/2022

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​These were Ellen’s, my cantor friend, last Friday services at the synagogue. The tables were packed. There was a lot of yummy food brought by the members. When we finished eating, it was time to celebrate. Everybody opened their prayer books; Eric and our drummer friend took their drums and sat, prepared to start drumming; and Ellen began leading and singing.
Before my injury, I would sing and find pleasure in singing. Eric and I would go to all Musical Shabbat services because we appreciate music. For a secular Jew and a non-Jew, music is the single and best connection with Jewish religion. I love hearing and singing old and known songs: cherished memories come back to me, and I feel at home in a foreign country. Hearing and making music, beautiful music that is an appeal to a god, as well as hearing Ellen’s powerful and gorgeous voice, touches Eric’s feelings. That’s why he wants to attend services. After the injury, Eric’s and my connection with Judaism has still been music. So, we both went to these services.
That night, I experienced a pleasant surprise. As I’ve told in a previous chapter, the bleeding over my brain stem changed my voice: I speak and sing at a softer volume, my pitch is low, and I have a limited range. So, when I joined the members’ voices in singing, I knew that mine couldn’t stand out in the group. Yet that had a good rather than a bad effect. In the past, I would take pleasure in singing, but also in hearing my voice sing. Every time I sang I could confirm the “beautiful” sound of my voice. Now, because my voice was no longer “beautiful,” I could delight in singing and in hearing others sing – especially Ellen and her gorgeous and moving voice; I could delight in hearing the others’ buoyant voices, and feel at home.
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New Surgery

7/9/2022

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​ After all the long wait, after Eric’s careful and repeated shaving and washing of my head, after the neurosurgeon approved of the pictures of my scalp and the plastic surgeon saw it and gave the green light, a date for the surgery was set. Eric had to shave my head and wash it with an antiseptic shampoo a few days earlier. Then, I had to get a PCR test, and it had to be negative; I had to eat my last meal at midnight; and we had to get to the neurosurgery floor at 6 AM for pre-operation.
I was anxious for the entire time. What if we did something wrong? The surgery could be a disaster. I could have an infection. What’s more, there was another cause of anxiety. I had to go to the very same hospital where they’d done all the previous treatments: surgeries, intravenous antibiotics, anti-seizure meds, emergency surgeries, and potential emergency surgery that ended up in discharge, they all had been accompanied by hospitalization and an IV.
We arrived promptly at 6 AM. They weighed and measured me and changed me into a robe.  They put me on a stretcher, placed an IV in my arm, and rolled me into the operation room. I was very cold. They put a lot of warm covers over my body and took off my glasses. Minutes later, I was asleep.
I woke up feeling drowsy. I was outside the room, and Eric was holding my hand. He left, and I was moved to the ICU. I hated it; it reminded me of the recovery room, where I’d spent two long days after the previous surgery. There weren’t fake walls and glass doors covered with curtains, as in this one. And you could hear constant yells and moans there, while a calming silence reigned here. But the atmosphere was just the same. I was relieved when they moved me to a regular room.
I spent my last and best three days there. No EKG cables, no Oxygen monitors, no pressure cuffs, no constant sounds, and three very kind and efficient male nurses. Once the blood stopped coming out of the drainage, the plastic surgeon cleared me for discharge. I could go home, hopefully for good! I hadn’t infections or nightmarish complications. Despite all my fears, nothing had happened to me. I could go out after a mere four days of stay – a dream come true, and a surprise to me.
I’ve been home for a month. The only effects are tiredness, low blood pressure, high heartrate after exercise, and a difficulty reading that tires my eye. And probably they will go away over time. Every now and then, I think how mild they are, and I marvel at the lack of fulfillment of my worst fantasies. And I smile.
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