Empowering to the End
by Janie Rakow
There are dozens of incredible stories I could tell, but the one that sticks out most in my mind is that of Sam, a forty-year-old man, and his wife Lucy. Four years earlier, Sam had been eating Chinese food when he noticed his hands couldn’t grasp the chopsticks. The symptoms progressed and a few months later he was diagnosed with amyotrophic lateral sclerosis (ALS), the progressive neurodegenerative disease that afflicted baseball great Lou Gehrig and physicist and author Stephen Hawking. ALS is a nasty disease. It often starts in the hands, feet, or limbs, and eventually spreads throughout the entire body, affecting all voluntary muscles, so you can no longer move or speak. The cruelest part of this disease is that your mind is fully intact and you can still feel pain. By the time I met Sam, he was in the hospital, hooked up to a BiPAP machine and unable to breathe on his own.
INELDA had recently trained a group of doulas at the hospital where Sam was a patient. When his palliative care team told Lucy about us, she welcomed the help. Nurses, social workers, and chaplains are wonderful, but their plates are full with patients and paperwork. This means a lot of the minute-to-minute care falls to the family. The doulas are there to fill these gaps.
Our doula team was told that Sam communicated using Morse code, blinking the dots and dashes with his eyes. Knowing that at some point he would no longer be able to speak, he’d memorized the entire Morse code alphabet! That way, he’d still be able to “talk” when he lost the physical ability. Since our team didn’t know it, we taped the Morse code chart to the wall behind Sam’s bed. A quick blink was a dot, and a slow blink was a dash. Just one letter could have several dots and dashes! It was intimidating!
When I met Sam for the first time, I was nervous. Would I be able to communicate with him? With the mantra resounding in my head, “I’m here to help,” I walked into his hospital room and introduced myself as “Janie, the volunteer doula.” Immediately, Sam started frantically blinking, his way of letting us know he had something to say. Lucy, armed with paper and a pen started writing.
I immediately saw the confusion on her face, then, her brow furrowed, she asked Sam to slowly repeat the sentence. She methodically wrote out each letter “tapped out” through his eye movements. Finally, she turned to me and said sheepishly, “Sam says you have a gun.”
Dumbfounded, I racked my brain, trying to come up with a reason that would make Sam think I had a gun! Clearly embarrassed by her husband’s accusation, she said she must have misunderstood him. Just then, a nurse came in and announced it was time for Sam’s bath.
I was still trying to figure this out as Lucy and I stepped into the hallway. Could it be Sam’s medication? Maybe he mistook my new big iPhone for a handgun?? Then it hit me.
When I returned to Sam’s room, I looked him in the eye, and with a big smile said, “‘Janie’s Got a Gun” by Aerosmith.” With a twinkle in his eye, Sam nodded. Lucy burst out laughing. “Typical Sam,” she said, “Always a jokester.” I was in awe. This man, who was paralyzed and close to death, with sores all over his body, was still kidding around!
Over the next few months, this couple taught me what life is about. Lucy’s unwavering love and dedication to her husband was beyond anything I had ever seen. She moved into the hospital room and became Sam’s mouthpiece, tirelessly interpreting every word he blinked out for the nurses, aides, and doctors. She watched his breathing like a hawk, and monitored the BiPAP machine covering his mouth and nose. She barely got a full night’s rest—Sam needed to be turned and adjusted constantly because he was in a tremendous amount of pain—yet Lucy soldiered on.
And Sam. Sam was the epitome of someone who lives life right up until his final breath. As doulas, we are taught to be silent and practice active listening. Because Sam couldn’t speak, his eyes and facial expressions cued us in on his thoughts. His eyes would light up when he was happy. Darting his eyes back and forth, I could sense mischievousness. I could also tell when he was in pain, which was quite often. But the most heart-wrenching emotion for me was his gratefulness, which was evident after a guided meditation.
Guided imagery is one of the many tools we teach our doulas in order to relieve patients’ physical and emotional pain. We bring them on a journey of the mind, taking them to a “special place” where they feel happiness and joy. For Sam, that was a hike through a beautiful wooded forest near his home. Keeping my voice soft, I instructed Sam to close his eyes, then took us on our hike. Through imagery, Sam was once again able to use his legs. I told him to feel how strong his body was, jogging along the lake, feeling the bright sunshine on his face and listening to the birds singing. Every sense in his body was alive within him. After twenty minutes of “travel,” I looked over at Sam and saw tears were streaming down his face. For those few precious moments, he’d felt the joyous physical sensations of being able to use his body again.
I realized in that moment just how much Sam and Lucy had given me. They taught me love, gratitude, appreciation. They taught me to live in the moment. That’s such a cliché, but working with Sam and Lucy made that a reality for me.
As I continue to teach people to work with the dying, I remember all my patients. I remember the lessons each taught me; I remember their happiness and their heartache. I keep a journal by my bedside; recording the story of everyone I have had the honor to work with. Each one forever holds a place in my heart, keeping me on my path and imprinting their stories onto my soul.
—Janie Rakow
Excerpted from Janie’s chapter, “Empowering to the End,”
In the book: Empowering Your Life,
Compiled by Sue Urda and Kathy Fyler