The bobbing balloons, the big cake, the feast in the park for 45 guests: Rabbi Sandra Cohen wanted her daughter Shira’s fifth birthday to be a larger-than-life event, like every year.
"It’s my bailiwick," says Cohen, 35. "Tram rides, the playground, wading in the creek — that’s what I tend to do, organizational picnics."
Shira got her special birthday party in May. But like everything else this year, it was altered by an unexpected intruder — the stroke that her mother suffered in January. It was Shira who captured the after-effects of the crisis best.
"While mommy’s having her stroke, daddy’s being mommy this year," explained the birthday girl. Cohen adds with a laugh, "I’m pleased she noticed who’s been choreographing her life for the last five years.’’
From family life to her growing Denver synagogue, stroke has forced the vigorous, hands-on Cohen to alter her life in every way. The stroke not only insulted her youth and athletic good health, but it curbed the self-described "bossy, control person" who once took center stage at special events like Shira’s birthday.
This year, her husband, Ben, took on most of the details while the rabbi helped tie balloons to a tree and set up. "Then I was wiped,’’ she said. "I had a friend take me home early."
Now, Cohen is focusing on recapturing another treasured moment she once shared with her daughter. "We call it a monkey hug. I’d pick her up, and she’d hug me chest to chest, her arms and legs wrapped around me."
The rabbi is determined to develop enough muscle strength and alleviate enough dizziness to be able to pick up her daughter again.
"That’s what I need most of all — a monkey hug."
Cohen’s stroke came without warning one January day as she worked on synagogue business at her home. Suddenly overwhelmed by numbness and a crushing headache, she managed to call her husband at his office and dial 911.
Confused and crying uncontrollably, she could only say over and over, "Something is really wrong."
Once in the emergency room, Cohen credits the swift use of the drug t-PA for stabilizing her condition, which initially left her with left-side paralysis, dizziness, slurred words and trouble processing thoughts.
After the immediate crisis had passed, Cohen, her family and her congregation were still troubled by questions that challenged their sense of security and their faith.
The fact that Cohen was young and healthy "shook people in a big way," she says. "People had nightmares about it. It’s theologically troubling. People wonder ‘If the rabbi can have a stroke, what could happen to me?’"
It’s one of many questions that baffle even her doctors.
Cohen ran 50 miles a week, had the superb low blood pressure of an athlete and no known family history of stroke. Nor did she take contraceptives, a stroke risk factor in young women. Indeed, she and her husband hoped for a sibling for Shira. Pregnancy is now out of the question.
"There’s a betrayal about your body, and shock, and now I feel angry about it," she says. "It’s a uniquely scary experience for me."
There was more troubling news. Doctors found evidence of two old strokes, and they have no idea when those happened. These types of strokes, called silent strokes, do not cause obvious symptoms and can go undetected.
And there was another surprise: Doctors found a tiny hole in her heart, which they repaired through surgery. Some on her medical team theorize that the hole may have allowed a clot to travel to her brain.
In the six months since the stroke, her determined efforts at rehabilitation have minimized the effects. "I am very disciplined,’’ she says.
She now walks regularly with a cane, and her speech is back to its rat-a-tat directness. But she’s still haunted by periodic dizziness, balance problems and crushing fatigue. Especially maddening for a public speaker and leader, she has trouble processing ideas. Reading aloud from the pulpit brings on sickening dizziness.
"I can’t pay half the attention anymore, so I get crabby very fast. I end up yelling at my husband a lot."
Her husband’s calming, low-key temperament has been consoling and so has the presence of her mother, Ann Cohen, who has temporarily moved from New Jersey to help with her daughter’s recovery.
Sandra Cohen also is marshaling some of her old spirits into speaking for National Stroke Association. Her story is a poignant reminder that "stroke is not just your grandmother’s disease," says NSA vice president Diane Mulligan. This year, stroke will visit 100,000 American women in young and middle age, just when they’re in the midst of their most vigorous and productive years.
Unlike an elderly stroke survivor, the young stroke survivor feels a sense of urgency in getting back to her family, driving a car and returning to work, Cohen says. "It’s not like I can retire or play canasta."
Frustration, and her own desire to understand, have inspired Cohen to begin a journal of insights into an inexplicable time in her life.
"I don’t know if everything happens for a reason," she says, "but I believe with God’s help, we can making meaning out of it."
She prays the Psalms — many of them ancient cries to God in fearful times — and has been deeply consoled by a prayer that says: "Here I am Lord. I don’t need to understand what you’re doing at this moment."
"It’s letting go in a whole other way," she says. "I’m in this ambiguous space where I’m not so sick I can’t do anything, yet I can’t do everything."
Through sometimes bitter trial and error, Cohen also has learned "Pace yourself. Allow yourself to be angry. It makes sense you’ll be grouchy and sad."
She urges stroke survivors to rely on a regular support team, including therapists, for help with rehabilitation questions and depression.
She paces herself at home, too. A symbol of the family’s altered life has been the ancient Jewish Saturday observance of the Sabbath, which the family begins after sundown every Friday. Since her stroke, the Friday Shabbat service ahs also become the family’s special time to reconnect. The rest of the week, Cohen tends to take her meals alone because she feels too physically stressed to cope with conversation and dinner bustle.
But on Fridays, the family makes sure to gather where as always- they light a candle for each family member and chant the Psalms. Shira sits on Mommy’s lap and gets her blessing.
Can’t isolate yourself, she says. Little by little, she’s taking on specific tasks at the synagogue, and regularly "rabbi friends come over and tell me the latest in the Jewish community."
And she eats ice cream.
"I tried a low-fat active lifestyle and had a stroke. Now I’m going to try a sedentary lifestyle and see what happens: she says with a laugh. "I’m kind of demoralized because I’ve gained eight pounds, my clothes don’t fit right. But it’s important to forgive yourself as much as you can."
She’s given herself six months to be self-indulgent, no recrimination allowed.
"Brain injuries heal in months and years, not days and weeks. In our American culture, we tend to encourage people to "move on". That’s not helpful. I need to be able to say, "I can’t step in and fix it right now."
But that doesn’t mean she won’t be able to in the future.
‘I have glimpses of how this is going to be part of my life story. Someday I’ll say, "Ten years ago, I had a stroke." Hopefully, by then, it will be just a part of my life story."