It was 2:00 am, and as my Partner in Crime brushed his teeth and maneuvered around the bathroom changing into his pajamas. I could hear a lot of awkward sounds: sighs, thumps, "oooplas" and laboured breathing. (1)
He has cerebral palsy and it takes more energy and strength to move, not to mention a fabulously wobbly sense of balance, and legs that he needs to physically adjust with his hands. However, I had never noticed how strained his breathing becomes carrying out routine tasks, such as getting dressed, until my recent decision to do an audio piece on breathing. I heard his shallow strained breathing in a new way, even as I lay there on the bed with my interview kit and a grin.
"You sound winded from getting dressed."
He responded, "All that bumping and grinding really takes a lot out of a man." He struggled to understand why I'd want to record his cough, and all the while obliging with coughs, splutters, dissolving and choking on our laughter.
As many individuals with cerebral palsy, he was born pre-term and lung issues are common for early births, however, breathing issues emerged only in his 30's, after he moved from Albuquerque, NM to the Northeast. Since then, he has reoccurring bouts of "Evil Lung Death,": debilitating bronchitis in the winter, triggered by inhaling cold air.
Coughing arrives without warning and it feels as if someone is sitting on his sternum. He splutters and chokes a little during the day. It is problematic, particularly because he is a media figure and will sometimes feel it interferes with on-camera or radio interviews. At nighttime, as he lays down, his cough develops into heaving, chest-shaking events. The coughing becomes intolerable in winter, as a blast of cold air can irritate his lungs. During the winter of 2014, fearing pneumonia, he went to the Emergency Room three times. Doctors gave him every test, but couldn't pin-point a cause, and sent him away with medicine, lung exercises, and inhalers- none of which were effective.
In light of the recent metro crash at Washington DC's busy L'Enfant Plaza station, in which a woman with asthma died in a smoke-filled metro car, I asked for his thoughts on breathing issues as a disability. Unlike his ability to find mechanisms and strategies to assist moving around the world with Cerebral Palsy, "not being able to breathe stops you cold; there's no adjusting to that." Nonetheless, it never stops him from physical activity- hikes and constant adventures with me and strolling around the city- nor his prior career as a modern dancer- it's always present and requires a little accommodation, and most never notice.
(1) "One Leg at a Time" by Natlie E. Illum: This powerful piece tuned my ear to the soundscape of my Partner in Crime's rituals to dressing with a disability.
Scott Buckley's "Prelude to Chemistry" provided the heartbeat to the piece as the Intro/Outro music. You can find him at http://www.scottbuckley.com.au/ Sharing is fun: Thank you & support Creative Commons!