One Hundred Names for Love: A Memoir (37 page)

The pet names and
piropos
continue to flow and flower, some funny, some romantic, some playfully outlandish—all a testament to how a brain can repair itself, and how a duet between two lovers can endure hardship.
This
is what we have made of a diminished thing. A bell with a crack in it may not ring as clearly, but it can ring as sweetly.

POSTSCRIPT

SOME LESSONS LEARNED

I
N THE FIFTH YEAR, I READ OF CLINICAL SUDIES WITH
aphasics, using a number of the therapies that, sheerly by instinct, we had already adopted, trying all of them at once.

Immersion Training
. Absolutely swamping Paul with language all day long and insisting that he talk, in pidgin if need be, just as if he were a settler in a foreign country who has to learn the local dialect as fast as possible to survive. He didn’t want to do it at first, because it’s so fatiguing, frustrating, and littered with embarrassments and missteps. Giving up, giving in to silence would have been easier, tending him without making verbal demands, as he crawled deeper into his shell.

Instead I engaged him in conversation nonstop, and spoke slowly, using clear, short sentences, and repeating important words and ideas. Gradually I ratcheted up the difficulty in tiny increments as he improved. Although I set up daily routines, I also encouraged yards of rest time. I allowed him plenty of time to speak and often asked for his opinion, helping him find words only when he got stuck. I praised his progress, no matter how small. Two weeks of speech therapy in a Rehab Unit, while essential, is nowhere near enough. The University of Michigan offers a top-flight intensive six-week residential aphasia program, which includes fifteen hours of individual therapy, five hours of group therapy, and three hours of computer-assisted training each week. Paul stayed home, but for the past five years has received the equivalent of about twenty hours of individual therapy per week, and ten hours of group therapy (talking with two or three people at a time).

A Corollary to the Above: Communication Partners.
Speech therapists helped at first, but after a while it became clear that Paul would be living with aphasia for the rest of his life, and that it wasn’t something any amount of medicine or instruction could “fix.” The worst suffering came from lesions in everyday life. Beyond vocabulary and grammar skills, he had lost his social wellbeing, his connectedness to others, and that left him feeling marginalized and alone. The challenge was to restore a sense of normalcy, an intimate relationship with me, some responsibility and agency, and a willingness to socialize with others once again. Paul needed to be cajoled, tempted, led out, absorbed in chatting about everyday things, and surrounded by people who talked slowly to him but normally to one another. The latter was important because he naturally eavesdropped, wanting to know what people were saying, and he tried hard to follow. I found that one-on-one conversations with friends were easiest for him, and tried to minimize noise. It worked best to have people on hand who felt comfortable with his new speaking patterns, like his longtime friends Chris, Lamar, Jeanne, and Steve, whom Paul connected with and was inspired to pay attention to.

I’d watched as some words returned to him as cherished gifts, one by one after the stroke, especially the words Paul had learned as a professional. It’s possible that other aphasics could understand and use equally esoteric vocabulary related to their own work or special interests, words a speech therapist or even a spouse might not recognize.

Adventures in Circumlocution.
“Can you talk around it?” I’d ask whenever Paul couldn’t think of a word he was trying to say. Liz would ask, “Is it a food? Postage? Have to do with writing?” etc. Getting his brain started on the right pathway seemed to help him focus on smaller subsets of words. He could usually describe it or find a rough synonym, which sometimes produced a parlor game of guessing. I praised his circumlocution, however far-fetched. The alternative was for him to take the easier route and fall silent or pantomime, or just make sounds, instead of trying to say what he meant. What he meant was interesting, and it certainly mattered to him, but my intent was to keep him talking and engaged.

Appreciation and Humor.
Given my arty trade, I may be able to follow looser verbal connections between things more easily, but anyone can swing open their mental doors and consider the surprising poetry of what an aphasic might be saying. Such as Paul’s using “This is the time of springtime reversal” when he clearly meant “Indian summer.” Or “a cache of creepy crawlies,” when he meant the annual brigade of ghost ants invading the kitchen. Laughter provides an indispensible spice during tragic times, and it’s been essential to our well-being, inspiring Paul to collar words and speak, since he knows that we won’t laugh at him, but with him about the normal high-jinks of aphasia. So he has nothing to lose—what he says might be amusing, even if it’s wrong.

Constraint-Induced Therapy.
To my surprise, Paul began his own Constraint-Induced therapy as soon as he returned home from the Rehab Unit, stubbornly refusing to feed himself with his good left hand, but insisting on somehow clutching a spoon in his partially paralyzed right hand. It took a while for me to recognize that he was doing this on purpose, not automatically, and that I shouldn’t try to assist or correct him. In CI therapy, a patient wears his good arm in a sling, good hand in an oven mitt so that he can’t use it, thus forcing him to use the weak hand, and also forcing his brain to rewire for it. In Paul’s case, this meant that eating was slow-motion, spilly, and almost impossible at first, as the spoon sometimes swiveled upside down in his grip and food often splattered all around. But it was important to let him struggle and flail with his bad hand until he learned to subdue it. Now, despite the permanent droop of his outer two fingers, he holds cutlery or pen firmly in his right hand.

Ongoing studies at the National Institute of Neurological Disorders and Stroke (NINDS) are evaluating CI aphasia therapy, in which patients are asked only to use words to communicate, no gestures or other sounds. Paul mainly practiced this, and once declared: “There’s nothing my mind resists more than the canceled half-sentence!” Frustrating to be sure. So he’d occasionally add his runic
templum
or make cheerful mroking sounds of greeting. But he mainly insisted on speaking, however long it took.

At nearly eighty, Paul chose not to take part in clinical trials of new drugs, implanting neural stem cells, electrical stimulation of the brain, or Botox injections into the flexor muscles of his clenched finger. And, because he already had its equivalent at home, he didn’t wish to join the Aphasia Book Club, for people with trouble reading, which includes audiotapes and worksheets. However, these sound promising and might benefit others. NINDS, part of the National Institutes of Health (NIH), organizes such research and runs a host of clinical trials, with details available online.

Ignoring Timetables.
People often talk about there being a “window of opportunity” in the first months after a stroke, during which one can learn most of what’s possible, and after that the window closes and learning stops. As Oliver Sacks advised us early on, and we discovered for ourselves in time, that’s simply not true. Learning is still possible at any stage or age. Years later, the brain can rewire itself. For example, just two months ago, Liz and I noticed that one aspect of Paul’s vision and memory for words had improved. We were watching him compare two typed manuscripts—an original typescript and another one with Liz’s corrections marked in red and her notes scrawled in red in the right-hand margin. He had to look from page to page, over and over, hold the words in mind, and compare the sentences—something previously hard for him to do. Now he was able to swing his eyes back and forth smoothly, quickly. This was new. After years of daily practice, his brain had finally rewired his vision for this specific skill. The result meant revising more fluently and also reading a little better. During his annual eye exam, five years post-stroke, he read the letters nimbly across each line—something he hadn’t been able to do the year before.

Shared Narrative.
In the beginning, it was important for Paul to dictate whatever he could remember about his stroke. Because the process required collaboration, he was forced to socialize more, which provided a bridge from his bottled-up interior to the outside world. It offered him mental shovels and gunnysacks during a time of frightening chaos. Sandbag by sandbag, sentence by sentence, he could rig up levees against the sea of nonsense words that kept threatening to spill in when he spoke. Some aphasia therapists help patients with a similar sort of recital, and refer to the “wounded storyteller” integrating his illness into the narrative of his life.

Building a Bridge to Before.
Even if Paul hadn’t been able to continue writing, I would have encouraged him to do something related to books, since they had occupied so much of his life before his stroke, and furnished such pleasure. Paul had many files of literary letters and papers to sift through, and several unfinished novels which he could take down from the shelf and tinker with. I might also have suggested he create in another medium—paint or collage—since he’d enjoyed both during an early period of his life.

I’ll never forget the impact of going to a Matisse exhibit at the Museum of Modern Art and entering a room devoted to the artist’s giant paper cutouts. Bedridden for the rest of his life after an operation, and unable to wield a brush—but still wildly creative—Matisse began scissoring shapes from paper and having helpers arrange them on the walls, building visionary landscapes. In one of my favorites, from his print collection
Jazz
, a black Icarus figure with a round red heart is dancing against a sapphire blue sky hung with giant yellow stars. Handless, footless, the figure nonetheless conveys the hopeful, joyful abandon of reaching for the sun. Matisse had captured in cutouts the exact bend of thighs, neck, and arms that goes with that feeling, and felt it himself I’m sure, even though he was infirm.
What to make of a diminished thing?
Frost had asked. For Matisse the answer was a spectacular leap of invention, because the tools available to him had suddenly become limited.

Encouraging Creativity.
How hard it is to fathom subtle changes in the brain after a stroke, when tests rely so heavily on the use of words, and favor linear thinking and syllogistic logic. IQ tests measure intelligence, not creativity, which is a different kettle of ghosts. How can creativity be measured, let alone nourished? One way is through simple mind-stretching games, such as the one we called Dingbats, asking: “How many things can you do with a shoe—other than wear it?” In his pre-stroke years, Paul was exceptionally good at that sort of creative puzzle, far better than I, he being the Rabelaisian fictioneer. After the stroke, he rarely joined in. However, inventing pet names taxed and excited his imagination in a similar way. As did the Mad Libs. I praised all attempts at speech, and encouraged him to write creatively. It was different from Dingbats, but still stretched his mental muscles, and provided him with a rich sense of satisfaction.

Time-outs.
Caregivers need small oases, private moments of being. Creating—plunging into the world of
The Zookeeper’s Wife
in WWII Warsaw, or writing about nature at dawn—offered me vital breathing space. Meditation provided another, gardening, biking, and swimming three more. Paul had his pool mysticism, I had mine. Reaching my arms long as I swam, with my chest opening wide and the water flowing continuously cool around my body, I felt like I was flying.

Some useful allies offer online help, support, and advice for caregivers:
Caring Connections
(
caringinfo.org
),
Share the Care
(
sharethecare.org
),
Well Spouse Association, Support for Spousal Caregivers
(
wellspouse.org
),
Family Caregiver Alliance
(
caregiver.org
).
The Eldercare Locator
, provided by the U.S. Administration on Aging, helps one find agencies in every community that can help with transportation, meals, home care, and caregiver support services (
eldercare.gov
; 800-677-1116).

Exercising the Brain.
The more intellectual and verbal challenges one encounters, the more neurons and connections the brain will grow, so exercise is useful for either prevention or therapy. In a pinch, some of those may ward off dementia or compensate for neurons lost to a stroke by providing a mental reserve, spare brain goods in the cupboard. But one can create mental reserves at any age—even eighty—by challenging the brain and perpetually learning. It doesn’t have to be a foreign language. The ideal exercise forces the brain to give up a tired, routine, habitual way of knowing and blaze a new perspective, however small. Crossword puzzles, watercolors, a Comparative Religions course, learning Braille or a musical instrument, or becoming a gardener. Taking a sensory walk in which you focus only on smell. Reversing your walking paths, indoors and outside. Driving a different route to work or school. Showering with your eyes closed and really experiencing the shower. Eating slowly and silently, with undivided attention. Volunteering with a telephone crisis line, a charity, an environmental organization.