The weather, the music, and the pure joy that surrounded us made me happy. For days on end, when I felt down and frustrated, I would remember my birthday, and feel grateful – for the friendship, the songs, the sun, the enjoyment, and the love; especially the love.
In August, my mother-in-law and a friend organized a birthday party for me. First, my in-laws arrived with a bag full of presents. Then, the next evening, friends showed up with gifts, food, and various instruments. On the deck lay a table covered with a tablecloth and full of serving plates with food and cakes. Luckily for that time of August, the day was mild. People sat on chairs and benches under the sun. Everyone was talking, including me. When evening came, guitars, ukuleles, and percussion instruments came out, and we sang, one song after another.
The weather, the music, and the pure joy that surrounded us made me happy. For days on end, when I felt down and frustrated, I would remember my birthday, and feel grateful – for the friendship, the songs, the sun, the enjoyment, and the love; especially the love.
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Yesterday I had a Whatsapp video-call with Elizabeth, a friend who’s both an artist and a specialist in Alexander’s method and has been incredibly helpful. She had told me that she had an idea that she wanted to share with me, so we’d agreed to talk on Whatsapp on video. When we were on the phone, she told me that her Alexander teacher had suggested a system to treat a tight muscle: asking the body where was softness in it. Elizabeth thought she could apply this method to get a part of the body to move.
We tried it, and I could lift my left arm. I felt and saw it moving upward! Tears came to my eyes. I was shaken and nervous at the same time; I thought I’d start having a seizure. Luckily, Elizabeth calmed me down. Then, we chatted briefly (husbands, children, and so on) and signed off. I wondered if I could lift my arm ever again, but a couple of hours later, when I told Eric what had happened and reproduced the movement for him, I started tearing again. And when we had a telehealth appointment with my neurologist and I repeated it in front of him, I still could. Since then, I’ve been pedaling the bike with my arms and lifting my left several times. Seeing my arm move just because I think I want to lift it no longer affects me. And who knows. If I keep focusing and practicing, maybe I’ll start moving my fingers next time… (joke) When I was coming to the facility as an outpatient with Eric and a nurse aid, we would have lunch in the cafeteria during the break between therapies. We would choose a table close to the window to enjoy the view of the lawn and the river, and sit to eat our lunch. While we were eating, I would look around myself and watch other guests eat and drink. There were bottles of clear water on their tables, and they’d serve it on their glasses. You could hear the sound of gurgling liquid. And I would think, ‘I wish I could drink that.’ But, so far, I wasn’t able to drink thin liquids; I had to stay with the nectar-thick ones to avoid aspiration and have someone be there, just in case. And I had to use a sippy cup to drink water, as toddlers do, and turn my head to the side so it wouldn’t go to the other pipe; or use a spoon or a straw, and swallow very carefully.
But my new speech therapist told me that I was penetrating, not aspirating, and showed me images that I couldn’t understand. And she added that, in any case, I wouldn’t get pneumonia (the biggest of doctors’ fears). Then, she dared me to take a big mouthful of thin liquid, and swallow it – “No guts, no glory,” she said teasingly. She explained how to push the liquid with my tongue and use the swallowing apparatus to shove it down the pharynx. And she made me practice, first with a shot glass, then with a larger glass. When Eric and I were back home every day because of the hiatus, I started following her directions every day with the help of the nurse aids. At first it was very hard – I felt the need to cough, but I couldn’t, and I had to practice many times to swallow fast. Nevertheless, I practiced; and practiced; and practiced some more, while using a spoon or a straw to drink coffee at the coffee shop: I was still scared of aspirating – I’m sorry, penetrating. After a few practices, I started drinking coffee directly from the glass. The key was pouring the water very slowly so that I pushed very little liquid with my tongue (which I would do inadvertently) to avoid coughing; if I got distracted, I’d start coughing right away. After a good while, I was swallowing the water without choking. Then, I mastered the way of controlling the liquid that came into my mouth and pushing with my tongue while using my swallowing apparatus. I’m still coughing if I forget to pay attention, and can’t avoid it, but coughing beats not being able to drink water hands down. Recently, I received a Kindle. There are very practical advantages to it. First, it’s light and small, so I can keep it on my lap when I’m in bed. Second, you can turn the pages by sliding your finger. That saves me from holding the book (trying not to lose the page I’m in) and turning pages with the same hand. Third, you can enlarge the font simply by sliding your thumb and finger on the screen. For a presbyopic woman with an injured brain stem who needs to keep her glasses to read because they are patched, an enlarged font is a plus. Finally, it has a light that’s not harmful to your eyes.
So, I had to give up my love for books (for the touch of their old, worn pages; their smell of paper; and their sepia color) and embrace the practicality of the Kindle for someone like me. So far, the pleasure of reading and researching has won. My library keeps getting emptier, and my Kindle fuller: novels, poetry, essays, philosophy, history. Whenever I feel like reading or need to consult a book, I take out my Kindle and patched glasses, and slide my finger. The sun is good company. These days whose skies are blue, clear skies because spring is approaching but chilly evenings when the sun is setting, remind us that winter still remains. So, I try to get out on the deck as early as possible, right after my exercise routine. I have my glasses and computer or my e-book, or a table with lunch, and spend hours feeling the warm light on my face.
After a few hours in the sun, my mood and energy change. I could leave my e-book and computer, and spend hours watching the shadows on the wooden slits of the deck made by the fence and the trees and their branches. Mickey, our dog, searches for a good sunny spot where to lie down. Then, he stays still while staring at the dry, faded lawn, a remnant of the outgoing season. I listen the voices of Nathan and his physics tutor on the background, while I stay as long as I can to take advantage of the sun. On a sunny Saturday, BHA friends gathered on the deck, and we sang under the midday light. In the fall, I sat with friends to have lunch on the deck or the backyard, and we shared jokes. Never have I had such a sense of contentment. It seems to me that the sun is the best medicine to heal brain injuries. I’m sitting on the deck. The last days of winter are here. Spring is slowly coming – the signs are starting to appear: green grass; buds; and clear, warm days. I look at the remains of the past, when Nathan used to play on the jungle gym with his friends. Summer would still be back. On his birthday party, Nathan’s friends, their siblings, and their parents would show up with gifts. I would cook and bake for days: mushroom, black bean, fruit, and barley salads; couscous with veggies, cranberries, and cheese; brownies, and a moist chocolate cake (later, Eric and Nathan would join me in making a chocolate-and-caramel raw cake, chocotorta, as they call it in Argentina). And Eric would grill chicken, sausages, and veggies. He would set a tent in the backyard, and we’d welcome guests with a tablefull of plates, glasses, and food. The kids would play in the yard with the sprinkler going while the adults chatted.
The jungle gym is back, but its wood is worn, and many of the swings are missing. I recall the summer days with yearning; the summers when we celebrated Nathan’s birthdays, before March 23rd, 2018. I recall while the sun shines on the jungle gym. When June 2019 arrived, it was Nathan’s 13th birthday, his bar-mitzvah. To save me from working to get ready for it, he suggested a climbing place as a venue for his birthday party. It was the first time I could go to one of Nathan’s parties after my injury. Despite the tiredness caused by the anti-seizure meds, I thought I would try to go. Eric was concerned and wanted to take the best care of me, so he urged me to stay. I felt torn. After a lot of thinking, I decided I would do my best to be there. And I felt rejoiced. I could greet and chat with the parents and watch Nathan and his friends enjoy themselves; it was the first time I was doing that after two years away from home. I felt tired after a while and had to ask Eric to take me home, but it was worth it.
All the while I spent at the hospital or the facility, whenever I felt down or I lost hope, there was someone who offered support. When I was still recovering, Argentinean friends texted me through Whatsapp every day. My younger brother put together a Whatsapp group with friends and colleagues to update them about me, and people asked to join. Argentinean friends flew to visit. New York and Beacon friends dropped by. Yet another friend set up a meal contribution so that Eric wouldn’t have to add cooking to his work and his thousand chores, and tons of pots and pans piled up in the cooler. People came to bring food and chat.
Then, synagogue members offered their help. When we moved to Beacon in 2007, the synagogue turned to a second home. There, I cooked and sang and gave to others, within and without its walls. Now, eleven or twelve years later, when I was no longer able to use my left arm and leg, the synagogue gave me. Friends and members came to offer food, chat, and sing with me. And when I felt better, Eric and I went there to sing with them. When we arrived, everybody welcomed me with a hug, saying, “It’s so good to see you.” I felt wrapped in love and surrounded by happiness, excitement, movement, and noise. When I joined my voice with others, it felt like coming back. At the beginning of my injury, the members with whom I was closer offered their support spontaneously. It started with phone conversations and visits to the hospital. Then, when I was back home, visits became long face-to-face chats, laughs, and singing. Long chats led to friendship, and then served to strengthen it and develop mutual affection. Finding constant signs of support and affection from both synagogue and Beacon friends, who immediately came to offer their support and company, helped me endure the long healing process until I got my life back. Now everyone has to stay home because of the quarantine. Yet, I’m still communicating with all those who have given so much to me; I feel I need to reciprocate. Then there are those who have become or already were true friends, and I’m eager to talk or sing with them over a Whatsapp videocall. And there are yet those with whom I have the traditional Friday coffee, now moved to an online platform. And lastly, through the synagogue’s programs, the Havdalah chanting and meditation Saturdays, also online, a source of needed peace for me these days. |
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