By Lainie Cohen
Crooked Smile tells how the Cohen family coped with 17-year-old Daniel’s brain injury suffered in an automobile accident. This caregiver-written personal account of living with a brain injury, concentrates—in much more detail than other books—on Daniel's early recovery and inpatient rehabilitation. Therefore, it gives families an excellent road map of where they’re headed: the ICU and its ventilators and intracranial pressure monitors; the agony of the unknown; the celebration over the tiniest improvements; the gradual progress; and the other countless, but bearable, challenges ahead.
Daniel recovers far better than the trauma doctors predicted. In fact, it’s not uncommon for survivors of a brain injury—like Daniel—to far surpass their doctor’s grim prognosis. It happens every day.
What also happens every day—and what Crooked Smile illustrates so well—is how brain injury impacts the family. In the Cohens’ case, Daniel’s sister, Alyssa, begs her parents to let her postpone her first year of college to stay home and help care for Daniel. They refuse, and, at school, Alyssa develops her own medical problems, possibly as a result of feeling anxious and powerless to help her family. Daniel’s younger brother, Jonathan, resorts to self-destructive behavior, perhaps in an attempt to gain some attention from his parents, who are preoccupied with Daniel. Cohen saw these problems developing and writes, "We must focus on limiting the damage to the rest of the family. If only we knew how."
What may surprise some readers is that the Cohen parents did not sit watch, twenty-four hours a day, at the comatose Daniel's bedside. Instead, they returned to their jobs, physically, if not emotionally. Later, when Daniel was emerging from his coma, Lainie and Joel alternated visits to be with their son throughout the day. When Daniel began his inpatient rehabilitation his parents again stepped away, "to allow the therapists an opportunity to get to know Daniel."
There is wisdom in this approach. The Cohens allowed themselves to live outside the exhausting world of brain injury, to refresh themselves for the rigors of Daniel's homecoming, and to spend extra time with Jonathan. They knew that an exhausted caregiver is a poor caregiver and that a disturbed family is a poor environment for anyone living with a brain injury.
Crooked Smile is worthy reading for all families just beginning to live with brain injury.
(Note: We believe that Jessica benefited immeasurably from my presence and that of others—as supporters and motivators—at her rehab sessions. Since I had no children or job to attend to, it was much easier for me to be available to help Jessica. But I was always exhausted and, therefore, a poor caregiver in other ways.)