In the Flesh
A common thread between all of the over seven billion people in the world is that we live all of our days in the flesh. This human condition can be defined as a vulnerability that collides, accordingly, with everyone on the face of the earth.
My husband, John, had in the recent past been misdiagnosed with the common malady of neuropathy (more than 3,000,000 cases per year in the United States), instead of the rare condition from which he suffers, spinocerebellar ataxia (with its overall prevalence estimated of 1 in 100,00 in the United States.)
Due to the frequency of occurrence, I assume it was more odds-on to suspect a horse rather than a zebra. Still, I clearly remember the day when we were introduced to the zebra that had inched its way into John’s life. John, was, unbelievably, the 1 in 100,000. The diagnosing neurologist proceeded to shed light on spinocerebellar ataxia.
“I didn’t see this coming.”
To increase the complexity furthermore, there are numerous types of SCA, but for all the more than 40 types of SCA there is no treatment and there is no cure. The cerebellum (a part of the brain that controls co-ordination) begins to atrophy and as a result, the affected person finds that their ability to use the affected parts of the body becomes progressively more difficult and less exact.
Today, John suffers with tremendous physical impairment due to brain atrophy. He has severe lack of balance and coordination. He can, to some extent, bare weight with assist. John is cognitively challenged, and, on occasion, confused. His speech is garbled, and he can no longer communicate using sentences. Another way to visualize the damage this disease wreaks is to grasp that John, at one time, was a sharp witted, healthy, productive man in action. He was a gifted conversationist and speaker. John pastored for over 40 years of his life. He, now, needs the kind of care given to a young child.
WHY? WHY? WHY?
“I love you John, and I miss you terribly. My heart aches since you went away. Each day I miss you more.”
On D-Day (diagnosis day) I felt the blood had been drained from my body. My shoulders went limp, and I broke out in a cold sweat. With my shoulders flaccid I tilted forward as my head drooped. My hand instinctively went up as my fingers pressed against my forehead and my thumb pushed against my cheekbone stopping my head from landing in my lap. I felt nauseous, but I couldn’t excuse myself or leave the room with such heaviness pressing on my shoulders which reproduced itself into a powerlessness spread throughout my body. My inhalations turned into shallow and rapid attempts at sipping in air amid the all-consuming terror blocking my airway. I could barely make out what the doctor was saying. His lips were moving, but it was as if I had suddenly become deaf.
I sat up in my chair, took a breath and exhaled with a whimper. I heard the doctor say, “John, you will not die from this disease, rather you will die with it.”
“This can’t be happening!”
What a nightmare.
“There’s nothing we can try?” asked John.
“Physical therapy” the doctor replied. “It is not a cure…there is no cure.”
On that day when we ascertained the seriousness of John’s illness, as might be expected, the trip home was unquestionably out of the ordinary. When I gripped the steering wheel, an intense undercurrent of agitating energy, pooled at my fingertips bringing about the finger-curling sensation of being jabbed by pins and needles. Even though I was trying to hold myself together, as I drove, I began to feel shapeless as if I were melting, and my resolve was leaving a puddle on the floor of the car.
WHAT DO I DO NOW?
JUST BREATH…INHALE AND EXHALE...Again and Again and Again! Looking back, I can now see, this is where my own recovery began from the shocking diagnosis of John’s rare and relentless disease and the overpowering anxiety that assaulted me with no mercy. Sometimes the best thing to do is just stop and breathe. God designed breathing to give life. During times like these I began to understand, it is God originated to re-wind because, in this wilderness, all we had was each other.
I realized I had been driving for a long time, but did not realize how far I had come. Everything had been a blur. In a fog, “John” I said, “Do you want to stop and get a bite to eat?” I felt like we were going “to Hell in a handbasket”, and I knew that we had no choice but to proceed on this downhill inescapable and ominous course. I thought a diversion from the dreadful diagnosis would give us a minute to calm our raw emotions.
I heard John say, “No babe, I just want to go home”.
It would be different at home, now, too. What had always been our safe place was invaded by a zebra who had intrusively moved in with us. I didn’t know the first thing about giving care to a zebra nor had I ever been called upon to be a caregiver, to the love of my life, under such foreboding circumstances.
I married John for that old-fashion, never-felt-like-this-before kind of love. Figuratively speaking, the kind of love, even though, I confess, over time, has changed, in part, from the adrenaline-charged sensation of tiny ballerinas frolicking in my stomach into a fast-bonding, high strength superglue. Although less fiery and more practical, our union is, yet, enduringly real. And now, knowing the reality we face, like Alan Jackson’s song proclaims, “If tomorrow I found one more chance to begin, I’d love you, John, all over again.”
We were forced to learn more than we ever wanted to know about SCA, yet so much that lie ahead for John and I remained unknown. I knew one thing for certain. If you come upon a turtle sitting on top of a fencepost you know the turtle did not get there by himself. As for John I knew he would need intensive caregiving to even go on with his life. He could not get there by himself. That change alone shattered his soul to smithereens, and scared the horse sense out of me.
The changes in our lives were root and branch. When the passing of time not much was left behind that looked or felt familiar. I wanted to turn back time, but I couldn’t. I wanted to hide, but there was nowhere to hide. Denial would be like running through a downpour and believing because I am running, I won’t get wet.
Through the years, I have come to accept that love is costly. Over 12 years has passed since John was diagnosed, and for several years now, he has been in the advanced stage of this disease. I am still here today. This is not the life we planned or ever expected, but it is life lived in the flesh. John and I are still a pair of aging pieces in the same old puzzle. And often you can find me on my knees.
Some days while witnessing my husband go from bad to worse, as I provide care, creates within me the powerful concurrence of factors that pave the way for the perfect storm. For that reason, I have learned that I must never ever forget, overlook, ignore or neglect my own limitations. My common downfall in caring for my husband is that I care too much for him and too little for me.
Just breathe…inhale and exhale…again and again and again. Sounds too simple, but you must begin somewhere. Often times I do my best thinking during these time-outs. I remove myself from my caregiving tasks and find some privacy. I sit down (the toilet works in a pinch) and inhale (as deeply as I can) and exhale (blow it out) with purpose. If the tension is in my neck, I slowly turn my head back and forth, up and down, as I inhale and exhale. If the tightness is in my shoulders, I roll my shoulders backward then forward in harmony with my breathing. I have discovered I can release strain in specific areas of my body.
Breathing creates wellness. God breathed into Adam’s nostrils…and Adam dashed off with energy and enthusiasm to join Eve the one and only girl in his life. I don’t claim deep breathing, alone, solves all problems. Neither do I claim to have recaptured my youthful get-up-and-go equal to that of Adam or Eve, but I am always impressed with my better frame of mind and less tense muscles after I sensibly meet my own needs.
As a fellow-caregiver I am going to suggest, that on occasion, caregivers make time for a hot bath while deep-breathing or take a brisk walk which naturally initiates deep breathing. The first rule of caregiving is that caregivers need care too. Let me say, to all caregivers that healthy habits should be guilt-free. I am really skating on thin ice now but why not add bubbles to your bath.
If I think I am the exception to the rule when it comes to breathing space, I am dead wrong. Seventy percent of caregivers over the age of 70 die first. Caregiving is not intended to go above and beyond, at any age, providing for your loved ones needs while turning a blind eye to your own needs. The best way to deliver good care is to take good care of yourself first.