​As part of my rehab, I have to do exercises with my left hand: I have to relearn to move my wrist and open my fingers. This means that the muscles in charge of extending my fingers (the extensors) have to learn to obey my brain’s command to tighten. This means doing ten reps of the same exercise: relax my fingers; once they are beginning to relax, pull them very slowly with my right hand, and combine relaxing with pulling until I feel resistance from my left fingers; then, let go of these fingers and wait for them to close; and make a tight fist.
Since my injury, the extensors have been paralyzed, which has let the flexors (the muscles in charge of bending the fingers, in other words, of closing the hand) take over. As a result, the flexors have been dominating my hand’s movements. Yet, thanks to the action of a splinter that we’ve been placing on and off, my fingers have gone from totally to partially closed. So, this exercise is a dynamic between pulling to the outside to open the fingers, and pulling to the inside to close them.
I think of it as a battle between the right and left fingers; the right fingers want to pull the left to the outside, but the left resist. Both enemies are determined to win – it’s a battle to the death. To teach my fingers to open and thus be able to grab things (which would make it possible to do almost anything, from cooking to reaching a bottle of shampoo), I have to strengthen the extensors gradually. That way, they will take over my fingers’ movements and the victory of the right fingers will be assured.
Kelly, my former occupational therapist, came over to assess my (limited) progress and device new exercises that would help my arm movements improve. When she came, she referred me to Sabashni, one of her colleagues from the time she used to work in New York, whom she recommended warmly. Eric and I called Sabashni, and she agreed to help me. I went to her office on Saturday, and she was pleased with what she saw. So now she will teach me and Tammy, my nurse aid, new exercises to improve the movements of my left arm and hand. Then, I will do endless repetitions of these exercises, and the right fingers will triumph.

​ It was my walking day, so I was walking with the crutch inside the wooden rail. I did one lap, handed the crutch to my nurse aid, turned (I usually walk with the crutch and turn while holding on to the bar), and started walking around the rail again. When was about to hand her the crutch to start turning, she told me to keep walking. I was puzzled by her instruction – I found it unusual – but kept walking. Then, she repeated it, and repeated it once again. And I kept going despite my bewilderment until I got to the wheelchair. Then, she told me to turn and sit down.
I asked her why she had told me to keep going. Because I’d said I wanted to move my walking to the dining room, she answered, and she wanted me to feel confident about taking that step.
The Sunday before, I had mentioned that I wanted to go back to walking from the dining room to the kitchen and back, as I’d been doing every Sunday before the side effects of the Fycompa started (I write about it in a previous chapter). But she’d said she thought I wasn’t ready yet. And she was right: no sooner had she finished her sentence than I’d realized I was still scared. What if I lost my balance? It had been a long time since I’d last walked with the crutch without the sense of safety I experienced thanks to the boundaries of the rail. Yet this time, a week later, I’d crossed the threshold of the rail and kept walking with the crutch without anybody’s help, and nothing had happened: I hadn’t fallen. I felt so happy. It was progress! A tiny progress, but progress no less.
This improvement seemed small but was actually huge. By crossing the threshold of the rail, I had crossed a boundary –  the boundary of my fears. And I had crossed another boundary: the boundary of self-criticism and high standards. According to my standards, the progress I’d made was inconsequential, but I was able to feel happy to have made it. My happiness meant that I could pay less attention to quantity and more to quality. It meant that I had crossed a barrier and would start walking forward.

​Each coming day is slightly shorter. And when a new day starts, I do my exercises, take turns reading, writing, and translating, and enjoy the ever-absent sun. After a while I get tired and need to rest. Once in bed, I struggle with tiredness; I look for something else to do: phoning friends, doing crosswords, drafting and revising poems, or typing the drafts into the computer.
Then, the light coming through the window has dimmed too much for crosswords or drafting, Eric gets dinner ready, and the three of us eat and chat. The ceiling light has been on for quite a while. When I’m done with my food, Eric starts making my meds. It’s time for the ritual that precedes sleep. And envisioning sleep brings fear with it, and I stay awake for hours in the middle of the night. Insomnia is the invisible evocation of death – no image comes along with evocation.
Increasingly shorter nights mean an increasingly quicker fear.

​After a successful exercise day my nurse aid, Eric, and I started talking about what made an exercise successful.  My nurse aid said that I would do well if I really wanted to do it; if I put my mind into it; if I did it with enthusiasm. If I started with the inner conviction that I would fail, I would. Then, Eric went farther: he gave dogs as an example. They never gave up; they would persevere against all odds. I was very puzzled and asked for an explanation, which Eric promptly gave me in the fashion of an account.
An anthropologist who was living with the Kalahari bushmen went with them to a baboon hunt. Baboon hunting is customary among bushmen, and they do it with the help of a dog pack. Since baboons are incredibly strong, dogs corner them so that the bushmen can spear them. This time, however, the anthropologist noticed a change. Amid the pack chasing the baboons, he spotted a three-legged dog running energetically after them.
Who knows what could have caused him to lose a leg? Perhaps a previous encounter with the apes, or a near-death clash with a member of the species. Yet despite his loss, the dog kept running along with his pack, the baboons on the mire. I remembered what my friend had said to me. To persevere, I had to believe –  to believe in life, and in myself; to believe in my ability to triumph. I had to celebrate my small achievements, even if they were small. I had to keep doing my exercises as a gesture of love for Eric and Nathan.
I had to learn from the dog, I thought. I had to want to walk, climb on and off the books, do all my arm exercises: move back and forth, up and out; lift and cross over, move across my right arm and leg; and try to reach my chin, over and over. I should practice without seeking perfection. No matter my tiredness, my reluctance, my sense of defeat, my high standards, I had to want to do my exercises; I had to keep my recovery on the mire.

​We’d been talking on and off with a friend about my writing and the role it played in my emotional healing, so she asked me to send her the link to my blog. A few days later, she told me she’d read some chapters and she had a few thoughts she wanted to share with me. On our next conversation, she said that none of the chapters conveyed to her that I believed in my exercises – that I believed that if I persisted in doing them I would recover my lost abilities. Her words reminded me of Eric’s opinion on the value of faith; that people’s faith enabled them to live through a challenging life. When I told my friend, she agreed. If I believed that constant exercise would lead to progress, she said, I wouldn’t quit.
After we hung up, I spent a long time going over our conversation in my mind. I thought of my disappointment: no matter the extent of my effort, I didn’t make as much progress as I expected. I envisioned I would still be needing help years ahead. Yet every day I woke up and followed the planned routine. Was I impatient? Was I setting high standards for myself? Was Eric right in that I always beat myself up? Were my nurse aids right in that I was too hard on myself? My older brother had once told me that after I described the progress I’d made I would always add, “but.” And it was true. When my friends are happy to see me balance or walk with Eric’s help, I think, “But more than two years have gone by.” When Eric says I’ve made a lot of progress, I mentally disagree. And when he and my nurse aid get excited about the increase in my arm movements, I wonder about the cause of their excitement.
The issue, then, lies on the definition of “progress.” Maybe I should lower my standards. Maybe I should stop adding, “but.” Maybe I should enjoy my improvements instead of pointing at my lack thereof. Maybe if I changed my definition, I would believe that my persistent efforts would make me reach the end. Maybe I should replace skepticism with faith.

​My injury has been the cause of many obstacles that I’ve had to overcome. And despite all the efforts and constant work, it seems they will last forever. There’s a few that have gone partially away: difficulty in finding English or Spanish words, grammatical mistakes I make when speaking English, and tiredness and nausea brought about by Kepra. This coincided with the neurologist’s decision to scale it down gradually due to the lengthening of the interval between seizures – another sign of healing.
The rest of the disabilities – inability to walk or use my arm and hand; tiredness caused by walking; inability to swallow thin liquids (unless I do it veery slowly); and a change of pitch in my voice and a slurred speech – are progressing very slowly, so much so, that on occasion I think that they’re here to stay. Sometimes, when the day comes to an end and all the tiredness washes over me, I feel like staying in bed the next day, and the next, and the next. But I wake up and have breakfast and start all over again.
Yet, despite of all the things that are either impossible to change or very gradually changing (to the point that I can’t believe they will change), there’s something my injury has given me: new and deeper friendships. It gave me friends that are always there for me; who are always ready to give; with whom I can always talk about any topic; with whom I can vent; with whom I can share ideas; with whom I can think; with whom I can laugh; with whom I can sing (with my hoarse voice). These are generous friends who are always willing to say yes, and if I don’t ask, to offer: true friends.

​When I finish exercising, I’m so tired that I need to lie in bed and rest. Then, my nurse aid has lunch ready for me. She puts the tray on my lap and clips a kitchen towel on my shoulders (no matter how careful I am as I eat, I always spill food on me). In summer, the weather gives me an excuse to stay home: it’s cloudy or rainy or humid or unbearably hot, or unbearably humid and hot.  So, I stay in bed with the living room window shut, and the air conditioner and fans on. I hate artificial air and closed windows – open windows that let fresh air in the house are much better. But on hot and humid days, I prefer the cool air fill the rooms. I’m sitting in bed, my computer on a pillow on my lap, and, write, read, or translate.
            When I could walk and work, I reserved some time a week to read and write. Eric and Nathan would eat out, and I’d walk to my favorite coffee shop, order a decaf latte, choose a remote empty place, and sit down to sip my coffee while I read and wrote. I ‘d always look forward to that weekly evening spent in solitude. I had a project for a poetry book on waste (in a metaphorical sense) first, and a book on memory, language, and foreignness later.
Now I don’t need to reserve a personal time: all my time is free. Lately, as I mentioned before, I’ve started translating. I only take jobs that don’t have tight deadlines, and not more than two or three at a time. I’ve even rejected prospective and old clients who contacted me with potential translations. In both cases, they were fairly large organizations, and I had pretty bad experiences with that kind of organization; they have no respect for freelancers. So, now I’ve added translating to the activities that give me a sense of enjoyment and pleasure.
My regular writing practice consists of several steps: I jot down thoughts on my notebook; then I translate these thoughts into poems or essays; then I type them into my computer; and then I edit, and edit, and edit. And in all these steps I find content. When I’m done and the time has come to send what I’ve written to the publisher or editor, a sense of loss washes over me.
            But there’s a further reason I’m in bed with my notebook and computer on my lap: while I remain in bed immersed into the world I’m building with poetry or prose, I can forget of getting up. And if I forget of getting up, I can pretend that I have two good legs. I can picture myself walking confidently and freely.

​On Monday Eric took me to the clinic so that I could have a mammogram. The radiologist studied it and told me what she thought of the images. She didn’t see anything of concern, but recommended an ultrasound in the next two months; I had cystic formations that hampered diagnosis.
Eric rolled me to the desk and left me for a few seconds. I told the assistant that I needed to make an appointment for an ultrasound. As soon as I finished the sentence, Eric came back. That was enough for the assistant; she addressed him to ask about preferred dates and his contact information. His arrival was enough to make me vanish. All of a sudden, I was transformed into a “she.” Anger and frustration drew me into silence. The next day, when my nurse aid asked me how I had faired, I told her all about my experience with the assistant, and she got really angry. Then, I repeated the story to my occupational therapist. (Two therapists are coming to work with me – a physical therapist and an occupational therapist.)
The therapist’s response gave me a lot of food for thought. She told me that when she was going to graduate school, students had to spend all day on a wheelchair as a way to see the perspective of their patients.  It was her turn to sit on the chair. It was summer, and she and a friend went for ice creams. She ordered one to the employee behind the counter, but he paid her no attention. Yet, when her friend came in, he immediately asked her what type of ice cream she wanted. And my therapist ended her account with an observation: what had mattered in this incident was that she was on a wheelchair and her friend was not.
Having heard this story after I’d undergone such a frustrating experience at the clinic brought to mind many instances of the same kind. Furthermore, it reminded me of the reactions I had had when I was young and healthy toward people whose disability was apparent (I write about this in another chapter). This led me to conclude that the wheelchair stood between the person with disabilities (I, in my case) and the healthy ones. The wheelchair is a big sign they (we) carry that reads: I’m not “normal.” They (we) don’t fulfill expectations; they (we) deviate from the definition of “normality.” Abnormality of any kind sets up a barrier; it intimidates. For this reason, the wheelchair makes them (us) invisible, and relegates them (us) to the third-person world.

​ My nurse aid started doing my hair with moisturizer. She doesn’t like my hair to be always dry. It’s because I only take a shower once a week (it’s the only day I can squeeze in a shower between my exercises), and it’s on that day when she helps me wash my hair and put moisturizer on it. She asked me if I went to the hairdresser before the injury, and I said I didn’t; I used to moisturize my hair instead. I could stand up with both feet and had the use of both arms and hands, so I took a shower and washed my hair every day, and moisturized it every other day. Recently, I saw a picture of myself that was taken in January 2018 (two months before my injury) for an interview with Alison Rooney, a journalist at The Highland Current. My hair is long and very curly, and it looks thick.
I’ve written a lot about my yearning for the pre-injury past, and about the negative effects of clinging on to the time when I could do everything. Doing so prevents me from looking ahead with optimism, and I lose the staying power to keep doing my exercises. If I don’t do them steadily, I won’t recover my ability to move, and thereby my autonomy. But I still look back with longing. The past insists on stealthily getting into my mind when there’s any element that sets off an association. And these days any element has this kind of power: these are days of nostalgia. Maybe it’s tiredness; maybe it’s frustration; maybe it’s impatience. No matter how long I spend doing rehab exercises, progress is very slow. Or, my definition of progress. Perhaps it’s the high bar I set for myself: It’s so high that I can’t reach it.
Maybe I have to scale down the Kepra faster. Maybe I have to rest more, or meditate more frequently. Or, maybe I should turn the clock hands quickly. That way, I would age faster, but I would leave my disabilities behind –  I’d be able to stand and walk and move my arm and hand. I know it’s an unreasonable expectation. I know that setting an unfulfillable goal is doomed to frustration and impatience. So, there’s only two options left: Eric’s three Ps, and shutting every crack in my mind so that the past won’t be able to get in.