On warm Cleveland nights, my husband Ron sits in a cheap plastic lawn chair in our backyard. Grey hair peeks out from his blue baseball cap as he rocks back and forth, staring at our three dogs lying on the grass.
“Why do you do make that chair rock?” I once asked him.
“It helps me count. That way, I know how long the dogs have been outside. I count to 600 for Gracie and 300 for Buddy and Brandy. Then I know when to bring them in.”
“Can’t you just look at a watch?”
Ron shrugged his shoulders, looked away from me, and went back to rocking.
***************
Early fireworks crackled that sultry night of July 3, 2015 as Ron lay on the cool tile floor of the kitchen. That cool floor offered some relief after he mowed the lawn and walked the dogs on that 100° day in San Antonio. Always obstinate and proud, and, we both thought, healthy, Ron insisted that this expenditure of energy on a hot day was no big deal.
After a while, Ron dragged himself to the upstairs bathroom and threw up. Afterward, he said, “I’m gonna lie down.” Thinking it was heat exhaustion, I begged him to go to the hospital to no avail. He was too stubborn.
I sat nearby, worried, listening to the fireworks outside. Worry magnifies everything, and each firecracker that went off sounded like a bomb.
An hour later, Ron cried, “My head!” He then tried to get off the bed but couldn’t move his legs.
I knew it was a stroke—I don’t know how—but I knew. Paramedics arrived and confirmed my diagnosis. My terrified husband was placed on a gurney, arms reaching out to me, and put in an ambulance. Lights flashing, sirens screaming, the ambulance hurried away. I was waved off by the paramedics, and a neighbor drove me to the hospital.
In the ER, a gruff neurologist said Ron had “a cerebrovascular accident,” one of those medical terms more easily called “a stroke.” Within a few days, I was told that Ron had an ischemic stroke on the right side of his brain as well as a brain stem stroke. To me, it was all simply a bomb, one that left devastation in its wake, devastation that Ron and I are still dealing with three years later.
Mine is the story of spouse struck with sudden, critical illness. Terror. Excruciating pain. A rush of medical personnel. Terse voices. Arms outstretched from a husband, now critical care patient, to a wife now called “Caregiver.” My urgent prayers ascending through sobs and anguish.
After Ron’s stroke, I became a dervish of responsibility, handling many tasks while caring for dogs, looking closely at our medical plan, trying to work, and fielding phone calls from family. Hospitals, insurance companies, doctors, rehab, therapy; long, complicated forms had to be completed for everything. I couldn’t visit my critically ill husband at the hospital because I was too busy making sure he could remain at that hospital. Modern American medicine is fine, but it seems that some insurance companies cause only a tangle of confusion, frustration, and anger.
I don’t remember much about Ron’s stay in the intensive care unit. My only vivid memory is of my once stoic husband grabbing my hand, his watery blue eyes pleading, sad, scared. “Help me!” he screamed in the garbled voice of dysarthria, a speaking disorder caused by The Bomb. And I didn’t know exactly what to do, but I knew right then that for the rest of my life, I would do anything, everything, to help him.
***************
In February 2015, we moved into our dream house in a leafy neighborhood of San Antonio, Texas. Ron was hired as the senior paralegal for a company there, earning a salary that, after years of financial struggle, finally afforded us a very good life.” The sun was out every day that month, and being a transplant from Cleveland, Ohio, I marveled at the early spring. I was so very happy.
The Bomb hit, and I had no real friends in that city. Facebook became my outlet for crying out as well as my personal journal. Sadly, some people responded to my posts with, “Have faith! Be positive! Everything will be fine! He’ll get better soon!”
Such platitudes angered me. How could anyone know that Ron would “get better soon”? I simply wanted people to say they would support me through all of us this. I ached for someone, anyone, to come to my new town, let me collapse in open arms, let me sob.
But no one came.
A few weeks later, Ron was placed in a rehabilitation hospital, and one day I was invited to eat lunch with Ron and other rehab patients. At a makeshift table in the gym, I sat next to my husband as he slowly ate his meal.
Eating out had once been a favorite weekend activity, but Ron was now dealing with dysphagia, a serious swallowing difficulty. On that day, his food was indiscernible pureed glop, not exactly the meat and potatoes he was once so fond of. Nor could he enjoy his beloved Diet Pepsi without a special thickener being stirred into it. (I tried it. It was not good.)
Directly across from Ron was an older man drinking from a small milk carton labeled “For dialysis patients.” Next to him was a quiet elderly lady who ate nothing but only pushed her fork around the plate. Across from her was a man, probably Ron’s age, who wore an expression of utter disbelief, even revulsion, that here he was now, sitting with such patients, that life could have dealt him such a bad hand as to place him at this table.
And at that time, I realized that these are dining tables that few people see, and certainly no one wants to make reservations yhere. However, these places are reserved for us all. We simply never know when our dinner plans may change.
After more than two months spent in hospitals, Ron finally came home in September 2015. For a frightening month afterward, Ron exhibited violent behavior. I had to hide every knife, pair of scissors, even gardening shears. Soon afterward, Ron’s inappropriate laughter began, followed closely by sobbing.
In more placid hours, our conversations took my breath away. I have never forgotten the words.
“I love you and will do anything for you,” I said repeatedly.
“That only makes it harder,” was his constant reply. I was still getting used to his garbled speech, but this was not difficult to understand. The tears moistening his cheeks were unspoken words. ‘I love you, too, but I don’t want to be like this.”
And Ron added, “My heart is broken every day.”
I could only hug him close. I learned two months earlier that platitudes mean nothing to the person in grief. I forced myself not to cry; had I dissolved in tears, it would have been too much for my husband. Caregivers must be strong.
But I soon weakened. That dream house with its long staircase to the upper level became a dangerous place for someone with a severe balance disorder. The mortgage that had once been easily affordable now siphoned off our savings. I, at the age of 57, simply could not find a decent job that would support our old way of living, and even if I did, I could not leave Ron by himself. I did have an hourly online job, but without having anyone to drive Ron to his many physical and speech therapy appointments, I had to keep calling off work.
After too many nights of watching “Friends” reruns but having none in San Antonio, we moved back to Cleveland in late 2016. Back home to true friends and the familiar, we finally had some help and support.
Considering the destruction brought about by The Bomb, I know Ron’s brain couldn’t possibly have come out unscathed. Ron’s behavior and decision-making are often challenging. Very early one morning, Ron climbed up on a chair and swatted at a fly. (Being told that he will always be a fall risk did not dissuade him), and he crashed to the floor. I ran downstairs and saw my husband in a heap on the floor. Within a few days, he had a gaping leg wound. I had to take him to a wound care clinic weekly for four months and lost more work hours.
I often wonder if the medical community will ever agree on a definitive diagnosis of Ron’s current brain condition. After nearly three years and three neurologists, there is simply no consistency in the messages. At his first outpatient appointment, we waited 45 minutes for the doctor to tell us in five that Ron was doing great, all while my husband walked clumsily, coughed incessantly, and needed me to “translate” his words for this neurologist. Ensuing neurology appointments only caused confusion. One doctor diagnosed Ron with a rare disorder that was a result of the stroke, while another did not mention that disorder at all but solemnly said, “Vascular Dementia.” We are now waiting for neuropsychological testing that I hope will show the extent of brain damage.
Ron doesn’t remember important little things, such as turning off the oven or closing the garage door. When I cry about our money problems, he just stares at the television, his main activity. The once proud paralegal now collects SSDI. Maybe he just doesn’t want to respond.
I often lose my patience and snap at my husband. At those moments, I feel awful that I wasn’t kinder.
Sometimes unforeseen things happen. They are neither my fault nor Ron’s but are simply The Bomb’s after effects. Tonight, he fell hard and cut his forehead. It just happens for no reason. A few nights ago, I made some chicken that made Ron choke. I thought I put enough sauce on it, but he had to cough violently and then expel half-eaten food onto his plate. I felt both guilty that I cooked this particular meal and repulsed by seeing half-eaten food on my husband’s plate. I am ashamed of myself.
Older stroke patients have more access to caregiving services, such as transportation. Even caregiver support groups are held during the day when I must work, as if only retired people and their loved ones have serious illnesses. The Bomb hit when Ron was much too young.
But lately, to my great gratitude, we do often have more good days than bad. Ron is again taking physical and speech therapy, and his therapists are pleased by his progress. When he hears favorite songs, he breaks into a funny dance that make both of us laugh. Oh, thank God for music and for laughter!
I refuse to say that love makes everything easier. Such clichés diminish the force of an explosion. No, real love is never easy. Sometimes it is exhaustion, worry, guilt, tears, anger. I just hold my wedding vows dear, the ones that say “For better, for worse, for richer, for poor, in sickness and in health.”
And on warm Cleveland nights, my husband sits in that old lawn chair, rocking it, watching the dogs. I look at the scene with love, then walk over and put my arms around his shoulders. We both watch happy dogs that are content in the moment. I don’t know what Ron thinks about at these times, and I don’t need to know. Maybe Ron’s just glad that he’s alive, thinking, as I do, that we have survived The Bomb, picking up each shard lying on the ground and forming a new life, together, from them.