​I wake up in the middle of the night, and my neck, shoulder, and back muscles and my right glut are tense and hurt quite a lot. I try to focus on relaxing them, as my friend Elizabeth taught me, to help me go back to sleep, but it doesn’t work. Instead, my mind starts wandering. I’ve already solved quite a few significant issues that didn’t let me sleep, but I’m still awake – the pain and tightness are still here. My muscles refuse to relax because they store piled up distress and fear: of having seizures, of never, ever healing; of helplessness caused by disability; and of death.
            A few days ago, Eric told me that the bleeding of my brain caused my muscles to be unable to swallow. Suddenly, I was drowning in my own saliva. My seizures, added to my choking, forced the doctors to induce coma with infused Dylantin, which was always under control to avoid side effects. When he added this part of the story (he always avoids telling it because it makes him cry), I was stunned; I knew the bleeding had been traumatic for me, but I didn’t remember it.  Yet, my muscles carry inside them an unconscious memory of facing death.
That’s the near-death experience that I remember but don’t remember. So, there’s death and fear of death stored in my muscles that I don’t remember but keeps me awake at night.

​A few days ago, I decided to listen to the advice given by my friend’s friend to replace paid work (which I yearned for) with projects, so I wrote to three former clients. I had enjoyed working with them on their book because it was really good and they were great people. They had always been ready to discuss any question I might have, and I had many. So, I asked them if they had found ways to write together remotely and had a project in the works. Then, I offered my help as a translator or a writing coach, and added that to avoid seizures caused by stress, I wanted to make sure they didn’t have tight deadlines and I wouldn’t charge them anything. That way, it wouldn’t be a job that would require commitment from me (actually, I always commit to doing a job, whether it’s paid or it isn’t).
I got a reply from them right away. They said that the news about my recovery had made them glad; that they had been working on a paper and would be interested in having it translated to have it ready sometime in the future, so there were no tight deadlines; and that they loved me, admired me, and were grateful for my help.
I was delighted by their reaction, as well as by their reply. Not only were they working together, but they had a project in which I could participate that had no deadlines. Now I had work, and friends rather than clients to work with. Translating is a lonely task. That’s why working with someone is more stimulating than working on one’s own.
I had found a project. I had found an activity that gave me pleasure and joy. I was on my way.

​Yesterday, Eric and I talked with a friend’s friend, a neurologist who specializes in strokes. I had thought of thousands of questions to ask him, starting with how to be weaned off Kepra and when could I go back to work. However, when we could finally connect, I was wondering why I’d called him. In the past days, I’d been thinking that I ought to wait before I stopped taking the anti-seizure meds – they weren’t that bad after all.
Yet, as we told him the history of my injury and followed with my rehab and evolution, the conversation started to flow. We talked about rehab methods and then transitioned to seizures and anti-seizure meds. Eric described my seizures’ evolution over the years (from major to minor, and the gradual increase of intervals between them), and I asked about the possibility of stopping (even though I had quite convinced myself of continuing to take them). Then, Eric mentioned our neurologist’s wanting to see an EEG before making a decision about a step-down process.
My friend’s friend praised this attitude for its cautiousness and suggested a potential step-down procedure, but then pointed out that there were other preventive methods that could be used instead of Kepra and Vimpat. I remarked that I was willing to wait to be weaned off. So, he started listing all the elements that would help the brain heal: learning, which meant to find joy in exercising and improving; alternative methods such as musical therapy; the recourse to our bodies’ inner frame of skills acquired during our childhood; emotional support through family and community (and here Eric and I thought of the very many BHA friends who had stepped up when I got sick and were still coming over or video-calling to chat and sing); focusing less on when we would heal and more on our ability to do; meditating (which I do and brings me comfort, oddly enough); relaxation techniques to help us sleep (which, unfortunately, are useless for me); and pulling forward instead of backward. Then he had to sign off, but encouraged us to call him with any questions and send him pictures of our work. 
            We were very reassured by the conversation. I had never felt so happy. It made me willing to stop with the negativity and focus on the things I love. I started to make a list of my favorite clients to call and offer them help. It made me look ahead rather than back. But most of anything, it gave me hope.

​Yesterday at 5:30 PM, I got together on Zoom with two of my synagogue friends: Ellen, the cantor, and Jen, Nathan’s music teacher from when he was two years old – a long time ago. We had made plans to celebrate Havdalah together. One brought her shruti box, and the other one, her guitar. I was late to the meeting, so we had only forty-five minutes to sing; chatting had to be set aside.
We started with a Hudson River song sang by Jen, who accompanied herself by her guitar. It’s a folk song written by a Randolph school teacher. Both the melody and Jen’s voice are beautiful, so I reveled in the music. Then, I got to choose the songs. We sang “Ivru, Ivru,” a chant about crossing bridges, appropriate to sing in a ceremony about crossing the bridge from sacred to profane, from the Sabbath to the weekend; and “Vaasuli,” which speaks, as I mentioned earlier, of sacredness and protection.
Then, we did the Havdalah ceremony, which I love. Debbie Friedman put music to the blessings, and despite being a secular Jew, I enjoy singing them. My favorite part is the lighting of the candle, which marks the beginning of the ceremony. And we ended with the last chant, which was also my choice: “Soba,” a psalm about filling yourself with joy.
When the song came to its end, it was time to say our good-byes – Jen had to walk the dogs, and Ellen had to talk with her kids. So, we agreed on a next meeting to sing in person when the weather was warm, maybe in the early afternoon on my deck.
I shut the computer with a sense of quiet and happiness. There’s nothing that can heal as singing can, especially singing together. Hearing other voices that join our own in chanting beautiful melodies, especially if those voices are lovely, lifts our hearts and appeases our minds. It’s the best recipe to cure the doldrums.

​It’s morning, and I’m leaning back in my bed and looking through the window. I can see the last green foliage and, behind, fragments of (still) blue sky – bright, intense, and blue. The minute I see the cropped view, an image comes to my mind: There’s a table on the street, and sunlight shines on it. A man sits at the table with a cup of coffee and a pipe lying on it. He’s a poet friend of mine, a good friend and a great poet, and we’ve had many interesting conversations at coffee tables on my visits to Argentina.
 I won’t be able to fly to Argentina for two years – until I can walk and the pandemic is eradicated. I haven’t been able to fly for two and a half years. Before my hemorrhage, I used to travel every year. I’d see all my friends and relatives at least once for dinner or coffee, and Eric and I would go to a poetry reading and a music concert (Argentina has great musicians). I had such a good time. Of course, I know it’s an ideal view of Argentina that has nothing to do with everyday life in the country, but my memory of it is fragmented and has all the bad aspects (economic, political, and social) cut out, especially since I don’t experience them. The bad aspects have been erased by nostalgia.
The summer’s brightness and warmth (which seem to be favored in my memory, because summers have become quite unbearably hot), combined with the presence of one of my best friends whose work I admire, are a perfect recipe to escape the doldrums. After two years of disability and seizures and the prospect of two more years, I have a hard time fighting against them, more so with the knowledge of the approaching winter and the solitude that COVID will bring with it.
But if I can’t find ways of defeating them, I’ll have to invent them. I’ll have to take advantage of all these great discoveries of our century: cell phones and apps, mainly WhatsApp (chats with friends, here and in Argentina); Internet, and among its businesses, YouTube being the best recourse (music and lectures!); and Zoom (maybe I’ll have to give up and listen to my synagogue’s services and discussions). And I’ll have conversations with Eric and Nathan, if I can get past the anger caused by a teenage son. So, I have to close my eyes, make a fist (a single fist, for a while, at least), and charge; with a smile. And maybe I’ll get through.

​In exactly three weeks and two days, I will have spent three months without seizures. Back then, on August seventh, when I was only four days shy away of three seizure-free months, I was talking with my younger brother and had a hard time putting words together. I thought it was because I was tired, so my brother said he’d call me the next day. As soon as he hung up, a fit started. I was able to call Eric, answer “yes” to his questions, and listen to his instructions to breathe deeply. After what Eric says were sixty seconds, the fit went away. All these things considered, we could call it a “minor” seizure. If we added that the seizure-free intervals grew, we could say that it was a sign that my brain was on the healing path. But we have to take into account that the attacks took place while I was taking Kepra and Vimpat.
The neurologist said the seizure had been caused by lack of sleep and prescribed a “mild” sedative. So, I’m taking 1,500 mg of Kepra (divided into two doses a day), 400 mg of Vimpat (same thing), 25 mg of the sedative (which Eric and I decided to take every other day to avoid tiredness), and meditating to keep attacks away. And I’m still counting the days and months without them to determine if my brain is healed.
I talked about my hemangiomas’ bleeding during my first operation and its effects, The first seizures happened over two years ago. We’re in October 2020, and I’m still suffering them, even with meds, unless I meditate early enough or avoid stress. So, I have plenty of questions, starting with: When will I be able to be weaned off my meds, and thereby stop feeling tired? When will I be able to be extra careful with my emotions to avoid seizures? When will I be able to return to a somewhat meaningful work? In short, when will my brain finally heal?
I’m faced with a whole realm of uncertainty. Every step I could take leads to nowhere. I seem to have forgotten all my neurophysiology studies in medical school; I don’t know what a brain injury can do to my mind (and here I add my misunderstanding, misremembering, difficulty speaking or expressing my thoughts, and so on and so forth), or how to heal it. I’m sick of meds! Here I am, meticulously counting the days so that I can meticulously count the months. So, once again, as with all my disabilities, I have to be patient. Yes, sure, I can wait, but, wait for what?

​Sometimes, when I’m walking inside the device in my room, doing my arm exercises on the bench, or just lying in bed and staring at the green leaves and the bit of blue sky behind them (which unfailingly brings back memories of the early times of my discharge, when I would spend most of my time doing precisely that), the same questions come to my mind: in three years, when I allegedly will be able to walk, move my left arm and hand, and articulate and swallow, how well will I be able to do all these things? Will my fingers move with some difficulty? Will I be walking slowly? Will listeners have to pay a lot of attention to catch traces of slurring in my speech? Will I have to make some effort to swallow? How much will my eyes have to concentrate so that I can stab pieces of meat with my fork? And these questions bring along yet another one: Is there a longing for the pre-injury past that’s lurking behind them?
Recently, Eric played a rock song on YouTube, and its rhythm immediately made me want to dance. So, I asked him to pass my left arm around his waist, passed my right as well, and started swaying my torso. And right away, a thought came to my mind: two years from now, I wouldn’t be able to let my body move to the music if I were walking with a cane.
I’ve already mentioned my nostalgia for the “old me.” It seems that it comes in different flavors, no matter how much I try to look ahead instead of back. When I appear in my dreams, I’m always walking freely. I catch myself looking enviously at women who are wearing a dress or a skirt and talking about the store where they bought it. As I’m trying to dry my hair with my right hand when my nurse aid is helping me shampoo and condition my hair, I picture myself before the injury, when I used to dry it with both hands. And on, and on, and on…
But I need to stop looking back. Instead, I must pick up the shattered pieces of my body and brain and reconstruct them based on my unfulfilled fantasies. Maybe, if my past is lost, I’ll have more freedom to build the “me” that I actually want.

Last night my son asked me to go over his self-reflection essay for his English class. He had to hand it in on the afternoon and wanted me to read it beforehand. The first paragraph, which I’d read the previous night, was supposed to be an introduction to the thesis, and that’s what he had written. I thought it did what it had to do; it was really an excellent introduction. The second one was supposed to develop the main thesis, but Nathan had veered from that path – it actually contained an account of the traumatic event that had generated changes in his relationship with Eric and me, and an analysis of his strengths and weaknesses. He’d wanted me to read only the introduction because he thought I’d be upset if I read the second paragraph, but then he changed his mind.
I read his account of my bleeding, brain injury, coma, and rehab, and of Eric’s and my absence of home while my in-laws remained with Nathan. Then, he stated that this event had caused his estrangement from us. The story was written in a matter-of-fact tone. Then came a harsh analysis of his personality. Among several weaknesses, it stated his lack of a work ethic, which had led to his failure to succeed in school. As I read the paragraph, my heart broke. Our conversation was as matter-of-fact as Nathan’s narrative and very short. But my reading prompted me to do quite a lot of thinking. What kind of emotional changes had my injury and its consequences caused in Nathan?
While he was growing up, we had developed a close, affectionate relationship. Unlike Eric, I was a free-lancer, so I could manage my time. I would tell him stories and read him books. I would bake him cookies and prepare snacks for him and his friends. I would take him to school and pick him up, and we’d chat on the way. Actually, I enjoyed being with him – I loved him.
Then, my hemangioma bled, and everything crumbled. Eric had (and still has) to become mom and dad for our son because it took quite a long time for the blood to reabsorb and my confusion and fear to subside, and the effects of the injury had lasted a long time. And I was so focused on what was happening to me and on my healing, that I didn’t have mental time to think of what had happened to him. I thought it was just “teenage trouble.”
​This essay was being a real wake-up call. I had to step back and think slowly, and just then I would be ready to begin a conversation. It had taken an essay to teach me to rethink things.

​By the time I can walk with a cane at a relatively easy pace without getting tired and (maybe) have an imperfect use of my left hand, I’ll be sixty years old. At that time, I’ll be able to articulate my words and (maybe) sing decently. Perhaps I’ll be fifty-nine, or close to that age, when I’m able to go back to work – and most likely type slowly with one hand. That means four or five years will have gone by since my hemangioma started bleeding when I have restored, to some extent, my lost skills.
Our society considers that this time has been “lost”: were I asked what I did during these years, I would have to answer, nothing. To avoid giving such an answer, I’ve read, and I’m reading, a lot of books I had on the “must-read” list; I’ve written, and am writing, essays to be published in a collection in Argentina in the future or to publish today in a bilingual e-journal; I wrote and published two books of poems, and I’m still writing one; and I’m translating and editing books for friends. But I’m doing this work out of harshness toward myself – I constantly hear a stern voice in my head telling me, “You must be productive. You must make good use of your free time.”
I have to get into my head that when five years will have passed since my injury, I’ll have used them productively: I will have learned important things about myself and others; I will have learned how to modify my behaviors (though going from learning to  doing takes quite a while); I will have learned to be patient and see the positive aspects of things that seem negative to me (maybe); my relationships with Nathan and Eric will have strengthened; and I’ll have developed my friendships with people who will have become important to me. So, when I turn sixty, besides resuming work, I will have changed for the better (I hope) and will enjoy my old and new relationships; the past five years will have been truly productive.

 
I talked about time in a different context (a conversation with a friend) and mentioned Byung-Chul Han’s book The Burnout Society.