Fifty years ago this winter, I spent a month at Children’s Mercy Hospital in Kansas City. I had lived with severe asthma 11 of the 12 years of my life. Earlier in my life, suspecting a heart issue, I was scheduled for the new technology of open-heart surgery, which was subsequently canceled with the doctor declaring better chances of survival without the surgery. Once feared to have cystic fibrosis, by the time I was five years old, I had been admitted to the hospital more than 30 times for at least an overnight stay in the dreaded oxygen tent. Many days and nights were spent struggling to breathe, along with horrible back pain caused by that struggle.
Those 30 days culminated more than a decade of wondering if each day might be my last, if the next breath simply wouldn’t happen. I was poked, prodded, examined and studied. Most of the month was spent in an isolation ward, with each child-patient in their own glass cage. The youngster in the cage closest to mine appeared to be a boy of about eight years old, and he loved watching me braid my hair each morning. What a surprise it was to learn he was older than I and likely destined for an early death from end-stage renal disease.
Other surprises were also in store for me. The final diagnosis from that month was emphysema and multiple severe allergies – cats, dust, feathers, milk, mites, mildew, mold. The list was long. The old punch test for allergies left my back an angry red mess. I wondered where that list left me – or would take me. What would I eat? What could I do? Who would I be?
Five years earlier, my Hide and Watch attitude was born. At the age of seven, I had my first conversation with Death. After a long, arduous day of not being able to breathe, feeling like my skinny little back would break from the pain, I was alone on the sofa in the living room of our small, rented home. Momma had drunk herself into a that deep sleep of alcohol and wasn’t available to me. The babies were asleep. I was alone and quite certain I would not see the dawn of the next day. I knew how to pray, so I did.
And then I got angry.
I’m only seven years old, I want to grow up, see the world, do great things.
I’m not dying tonight.
I sat up and gasped “I am not going to die.” I repeated those words all night long. And I did not die.
By morning, the anger had been replaced with the understanding that I could make change my response to fear. I was afraid to die, afraid to leave my younger siblings behind, afraid for what would happen to my mom. I had plans. By facing that fear with a rhetorical Hide and Watch attitude, I found inner strength and determination.
From that night on, Hide and Watch has been my mantra. Tell me I can’t do something? Hide and Watch. Think I’m too little, too young, too old, too whatever, to do that? Hide and Watch. Tell me not to set my expectations too high? Hide and Watch.
Sometimes, a little anger and a dose of Hide and Watch are just what I need to get through the next minute, next day, next year.
So, 50 years ago, after hearing I had an “old person’s” disease and was allergic to nearly everything, it didn’t seem my life was going very well. I couldn’t eat what I wanted, I couldn’t do what I wanted – I didn’t even know WHAT I wanted, but I knew according to those doctors, I wouldn’t be doing it.
My identity was that of a sickly child.
She can’t play in the snow. If she gets too cold, she won’t be able to breathe.
She can’t play in the heat. If she gets too hot, she won’t be able to breathe.
She can’t. She can’t. She can’t.
Hide and Watch.
Accomplishments were often more difficult yet always sweeter because of the challenges. Moving away from the identity of that sickly child to one of strength, perseverance and courage has taken work, and Hide and Watch has been there with me every step of the way.
These 50 years haven’t always been easy. Many roadblocks, tragedies, cruelties and plain old bad stuff happened along the way, but I’m still here and almost 63 years old. I’m not tethered to an oxygen tank. I haven’t been admitted to the hospital for an asthma or emphysema event since that month-long stay at Children’s Mercy. Death and I have talked many times, and yet, I’m still here. I can hike several miles on a good day. I have a fulfilling career. I enjoy preparing and eating good food. I’ve seen parts of the world, and I have done some great things: I bore and raised two children who are amazing adults. I am a Grandma.
Do I still have emphysema? No doctor in my adult life has confirmed that diagnosis. Do I think the doctors 50 years ago were wrong? Not necessarily. I grew up in a holiness, Pentecostal tradition. While I no longer ascribe to the negativity and many rules and regulations of that religion, I do believe in God’s grace, the power of prayer, and divine healing. And I benefit from the marvels of modern medicine. Cat dander and cigarette smoke can both mean a week or more of severe illness, with much gasping for breath. I take precautions to protect my respiratory health, particularly in this era of COVID, and I stay away from cats and cigarette smoke. I keep my Ventolin rescue inhaler at the ready. Those are daily realities for me.
Another daily reality is chronic pain from fibromyalgia. With many theories and speculations about what causes fibromyalgia, certain drugs to treat some symptoms of it, and various lifestyle accommodations to make living with it easier, there is no cure. Many people who live with fibromyalgia, women particularly, have a history of trauma and abuse, and current research (i.e., CDC-Kaiser Permanente Adverse Childhood Experiences (ACE) Study) tells us that those experiences can change the way our brain reacts to stimuli. In a 2011 article in the Mayo Clinic proceedings, Drs. Dan Clauw, Lesley Arnold and Bill McCarberg state, “The pain seems to result from neurochemical imbalances in the central nervous system that lead to a ‘central amplification’ of pain perception characterized by allodynia (a heightened sensitivity to stimuli that are not normally painful) and hyperalgesia (an increased response to painful stimuli).” My lay interpretation of that is our nervous system is stuck in fight or flight mode and the volume of pain is set way too high.
Combining my many adverse experiences (that’s another blog or book someday) with years of illness and multiple near-death experiences, it does seem my brain got rewired and my nervous system stuck in that fight or flight mode. Fortunately, Hide and Watch stepped in and forged a path, albeit after many tries, to not only live with these frenemies but to thrive. Years of talk therapy, anti-depressants, lifestyle modifications, and healthy personal relationships have helped turn the volume down and calm my nervous system.
Some days are punctuated by unrelenting pain, while more are bathed in peace and freedom from pain. Pacing is important, as are rest, good nutrition, and acknowledging where the wall is before I hit it. Hide and Watch and I are great friends, and we approach each day with determination, strength – and a little bit of stubbornness thrown in for good measure.
Cindy Leyland is a perfectionist, whose superpower is bringing calm to chaos. She likes to do only those things she does well, so writing doesn't happen often - yet. Her daytime (and sometimes nighttime) hours are spent working as the Vice President of Operations and Fund Development at the Center for Practical Bioethics, whose mission is to raise and respond to ethical issues in health and healthcare. She serves as a Board Member for The Pain Community and LivingLove International, both of which share her life missions of passion, compassion and peace. She's the spoiled wife of Dave and a grateful mom, stepmom and Grandma.