As the husband of Rebecca, who has cystic fibrosis, I’ve been criticized more than once for joking too much throughout our journey with CF. But if there is one thing my wife has taught me, it’s that amazing courage is not improved by focusing on the imposing strength of the disease; it’s magnified by laughing in its face.
When two fighters square off in the octagon for a mixed martial arts (MMA) bout, serious determination rules the mood, concentration fills their eyes, and there is very little giggling. At least, that’s the case for fights I’ve watched. So if this is how the pros do it, then maybe a serious demeanor is the best “game face” for any opponent — even a disease like cystic fibrosis.
As the husband of Rebecca, who has CF, I’ve been criticized more than once for joking too much, although not by her. That was said by an in-law living 1,800 miles away. Meanwhile, Rebecca had been both laughing at my jokes and making a few of her own all along. So, what is the right amount of laughter to shoot for, if any at all?
About six weeks after my wife was placed on a ventilator due to end-stage CF resulting in respiratory failure, she began to emerge from her chemically induced coma. Her very first expression was a smile that broke out as soon as she recognized me. Sedation and bedrest had caused severe atrophy, so we gave her some rolled-up washcloths to squeeze to improve her grip. It was a serious exercise indeed, yet when she got those washcloths, she started shaking them like maracas. Did that make me smile? Yes — but was it strange that after a lifetime of fighting CF, she was doing the opposite of everything we had learned from the no-nonsense MMA fighting and Kung Fu movies I was kind enough to share with her over our 17 years together?
Unable to stand, they used a device called a Hoyer lift to place her in a chair, and she grinned from ear to ear the whole time. And when they set her up in the chair, she pointed her finger like a gun that shot imaginary bullets and began repeating “I’m a badass!” We had to read her lips because she had no voice with her tracheostomy inserted and ventilator running, but the smile on her face seemed to be the definition of a badass.
A tough person makes a tough face, but the toughest person laughs in the face of danger.
As she built up her strength and began to walk again, she would move down the hallway with the ventilator rolling alongside her, a walker in front, and caregivers all around. I joked that we should increase the challenge by placing cones for her to weave through and mini-hurdles for her to surmount. As she improved, I suggested lengthening the hallways because her walking game was TOO STRONG! Though we never hurdled and the hallway size was never modified, exaggerating her improvements was fun. To reiterate the story of her progress, I recounted her new personal records and accomplishments during hair-brushing or massage time (taking some occasional liberties to suggest that she could outrun her neighbor across the hall and suggesting they race for money).
We played music and tried to maintain a positive attitude. I chose to sing more loudly than the Bluetooth speaker so that she could appreciate my soothing (and in no way off-pitch) voice. Among those songs was “Eye of the Tiger” — because who better to inspire survival than Survivor. When I brought in her actual cats to visit her in the hospital, I had hoped that they would demonstrate this “eye of the tiger” and inspire Rebecca to new levels of intensity. However, her cat Paul — afraid of this new environment– stayed on her lap cuddling with her, bringing little intensity (if any) to the situation. Meanwhile, I spent most of this visit on the floor chasing her other cat, Priscilla, and pulling her out from underneath various shelving units. Although the days crawled by like me after a dusty cat, we were making the best of them.
Amazingly, Rebecca received her lifesaving double-lung transplant after 169 days on life support. I’m not aware of anyone who has survived longer on a ventilator after experiencing respiratory failure from end-stage CF.
In the time leading up to this, there were so many things we were forced to take seriously that it was nice to take as many moments as possible to smile. There is no question that my wife is a fighter, but her amazing courage was not improved by focusing on the imposing strength of this disease; it was magnified by laughing in its face. To her — even if CF won the battle — she was going to live her life and appreciate each day, because they belonged to her.
Perhaps that was the fight the whole time … to be present with our loved ones, smile when possible, and laugh in the faces of our opponents.