When you're mute and paralyzed and hooked up to machines and you didn't used to be this way, people treat you differently. They don't want to, and they might tell themselves they aren't, but they do. They see only the helpless flesh, those hands and feet that someone else put into position for you -- and you know and they know that anyoneat all could put your limbs into any position at all, could put them into a silly pose or a humiliating pose, and you couldn't fight back. Most who see you in this state, even your loved ones, see only the flesh. First, they cry. Then as the days and weeks pass they start talking around you, and/or about you, as if you weren't there. Some address you directly, but they appear nervous and even embarrassed as they do, enunciating as if you were a child. A relative of mine, whom onlookers see as a motionless 250-pound hillock under a floral-patterned sheet, is learning this right now, to his horror, day by day.
A year ago, when he was only thirty, Jake had a brainstem stroke. He collapsed at work; colleagues who found him on the floor called 911. Jake was not expected to survive. According to the National Stroke Association, only 10 percent of strokes occur in the brainstem, which connects to the spinal cord and controls automatic functions such as breathing, heart rate, blood pressure, swallowing, and sleep patterns. Most such strokes are fatal. Jake's wife, Ashley, rushed to the hospital and found him comatose. Doctors told her to expect the worst.
And did the worst occur? That depends on what you consider "the worst." To Ashley, "the worst" meant death. But to some of those close to Jake and Ashley, "the worst" meant life: that is, life spent in a coma, or -- if Jake ever awoke -- as the quadriplegic that his doctors declared he would be: a sweet, smart, funny young man who could swallow only via machine, immobilized forever with what neurologists call "locked-in syndrome," a fully aware mind inhabiting a fully inert body. (Locked-in syndrome, for which there is no cure, gained notice in recent years after French journalist Jean-Dominique Bauby suffered a brainstem stroke that left him utterly paralyzed but for one eyelid. Using that eyelid, Bauby dictated his memoir, The Diving Bell and the Butterfly; it became a bestseller and was made into a film last year.) Some folks seemed to feel that, for his own good, Jake was better off dead.
Ashley was overjoyed when Jake regained consciousness a week or so after the stroke. The couple made eye contact and she squeezed his hand. He couldn't squeeze back, but she knew he longed to. Ashley spent every possible hour at the hospital. She talked to Jake. She brought him an iPod filled with his favorite music -- Coldplay, Gigi D'Agostino, Maroon 5. She placed one earbud into Jake's ear, the other in her ear, clasped his hand and danced by his bedside. The first time she did this it was, she wrote in her blog that day, "the best dance of my life."
After five months in the hospital, during which he experienced several emergencies that required brain surgery -- part of his forehead was removed, then replaced with a plastic prosthetic -- Jake was transported to a rehab center. Soon he'll move into a cottage on his parents' property, specially outfitted for his needs. Three people are required to turn Jake in bed. He makes rough sounds which only Ashley can interpret, and even then only a fraction of the time. He cannot register emotions, cannot frown or smile. A former executive, once the life of every party, he has been rendered largely invisible -- a sensation that other disabled people have told me they share. And from this realm, stuck in such a literal way, from the mind that sees while some fail to see it, comes a message posted on Ashley's blog, dictated to her via sounds and hand signals:
"I am doing OK. Therapy has really helped me. I never thought I would eat again but it is going to happen. Last week I had ice cream twice and I loved it. I have some movement back in my right hand which was totally unfeeling and I am filled with hope recently at my many small improvements. Thank you for keeping me in your thoughts. My family is building me a place to live and my dad works very hard every day to get it done. And my mom makes food and drink for all the workers. I love my wife and my family and my friends.
"Love, Jake."
