By Jill Stegman
I never imagined after nearly forty-two years of marriage, that I would be left on a strange street looking for a bus hundreds of miles from home.
But I had jumped out of the rental car my husband was driving, so intent on getting from one ravaged Youngstown, Ohio, each neighborhood even more boarded-up, shut-down, and depressing than the next. It was clear: we were a world away from Central California, where our two children had befriended tarantulas and lizards on our five acres of property.
“No, I’m not letting you drive,” he’d said, clamping his fingers more tightly on the wheel and speeding up to fifty in a twenty-five mph zone. My husband, Don, had gone from a clean, fit, REI-clad former surfer and cyclist with a smile for everyone to an unshaven and angry ghost of his former self, wearing a frayed t-shirt and sweatpants.
“Stop!” I screamed, as he picked up speed, the houses and street corners becoming a gray blur. “Let me out!” I couldn’t believe this was the same man who had always been my protector for forty-two years of marriage. One thing for sure: he was not at the wheel
That’s because Prednisone was. This white pill is a strong anti-inflammatory drug prescribed to ever ten million Americans a year for everything from allergies to asthma. It is a standard treatment for graft-versus-host disease, which Don had for seven years following his bone marrow transplant for a type of blood cancer called myelodysplasia.
“I guess this won’t slow me down,” he said when the doctor explained it was the only cure. “I can still play in the tennis match I was planning.”
True to its promise, Prednisone kept him alive, but the last time he was on it he turned from Dr. Jekyll into Mr. Hyde—permanently.
But it also became a devil I had to live with.
It was hard to believe that we had ever had years of calm—and of the daily peace and joy that we felt fortunate to have with each other. We shared in all of life’s experiences from the pure joy of holding our children right after they were born to the mixed emotions of accomplishment and sorrow when they left home for college. We’d done it right.
But Prednisone changed all of that. Our house was constantly in a state of uproar from Don’s violent outbursts. He’d thrown a lamp in frustration when I’d refused to change bank accounts.
“We should have split up years ago,” he said on our forty-second wedding anniversary after I hesitated to go bike riding because it was too cold.
Don had heard from a friend about how inexpensive houses were in Ohio and decided we needed some investments to make our pensions go further. But he knew nothing about investing in real estate. He read “How To” books and followed real estate blogs full of questionable advice about buying foreclosures. He became an insomniac, staying up nights “becoming an expert” on the real estate market.
Who was this guy; I can imagine Don asking this version of himself. Why is this huckster in the middle of my living room?
Don became manic. His eyes were bloodshot and his speech sounded weirdly pressured, like something had taken over his body.
He was hovering by my bed one morning holding a computer printout, still wearing the old T-shirt and sweatpants from last night.
“Look at this,” he said. His hands were shaking with excitement. His eyes had a steely focus, and his speech was pressured, as if his body had been inhabited by another person.
I struggled awake, and glanced over the printout. It listed hundreds of houses for as little as $10,000 in a town called Youngstown, in Ohio.
“Do you know anything about this place?”
“No, that’s why I’m going, so I can check it out.”
I Googled Youngstown and discovered that it had succumbed to the ravages of post industrialization. The town now had one of the highest poverty rates in the nation. The huge 1930’s houses Don had discovered were being offered for only a few thousand dollars, but there were no buyers. Some were actually being given away.
I printed out what I’d found and showed it to Don. “I don’t feel good about this place,” I said. “It sounds like no one wants to live there so how are we going to get any renters?’
“Bullshit on the bastards who wrote this,” Don balled up the print-out and threw it in the trash. “They probably made it sound bad because they don’t want outside investors coming in. My real estate agent assured me there were good neighborhoods in Youngstown. You can stay home if you want, but I’m going to Ohio.”
The idea of Don loose in Ohio buying houses with our retirement savings overrode my fears of being around him for an extended period of time. By now, we seemed thrown together in an unholy union like a match of opposites. The slightest hesitation on my part to anything Don suggested brought a harsh reaction. He’d slammed our bedroom door so often it had cracked at the hinges. I had no choice but to go with him. Prednisone was a devil I had to confront head on.
Two weeks later, we were in Youngstown. The years since his bone marrow transplant had taken a toll on his appearance. His once thick hair had grown back thin and sparse from the chemotherapy, and he had scars from a virulent cancer that had taken his right ear. The high dose of Prednisone also caused bloating. A moon face had softened his angular jaw line.
A young man came down the sidewalk, which was lined with houses mostly with broken windows and overgrown lawns. His arms and neck were covered with tattoos —crudely drawn knives dripping blood and skulls. “Excuse me,” Don said, stepping in front of him. “I’m thinking of buying a house here. What do you think of this neighborhood?”
The man looked around uneasily.
But Don was determined to get a response. ‘That’s a beautiful dog. Can I pet him?”
When Don leaned down to touch the dog the man stepped back. “Don’t come any closer or he’ll rip your throat out, and I ain’t shittin you.” The dog sprang forward in combat mode, and Don raised his hands and backed away.
Later, after we’d seen houses that would need to be transformed to be livable, I tried once more to get him to leave. “This is just madness. We don’t know what the repairs will cost. All of those houses had old furnaces and leaking roofs.
Don stiffened with anger. “What’s your problem? You’re always holding me back. I should have just come by myself.”
It was as if he could not control what he said, that there was no internal filter. His level of focus and intent was impressive but obsessive. I later found out that this type of behavior was typical of the manic phase of bipolar disorder brought on by the Prednisone.
“Let me out now,” I demanded when my once-mellow husband who always obeyed the speed limit was going 75 in a 25 mph zone through downtown Youngstown. He sped up, and then came to a screeching halt.
“So get out,” he said.
So I, in my skirt and wedge sandals, tripped as I got out of the car, regaining my balance as walked the streets looking for a bus stop. There were none. The city center was abandoned. It was trashed out, eerie and forbidding, sirens in the distance.
I stood out among the people on the street, who were pushing shopping carts or rifling through trash can. The idea of getting out of Youngstown by myself was way too complicated and dangerous for me to fathom. I had to admit defeat.
“Get in,” my husband said. As far gone as he was, he has some shred of himself left.
But it wouldn’t last long.
“I’m afraid of my feelings,” he said one morning four months after we returned from Youngstown, finally agreeing to seek help for his rapidly changing moods. Then one morning, as we had both sat as we had so many times before, writing and reading at the living room table he abruptly got up and left. I hardly paid attention as he rushed into the spare bedroom; grabbed something, and then hurried out to the garage. I heard him start the truck and the grinding of the garage door that he had bashed into earlier. I glanced up when he left, vaguely wondering why he hadn’t said where he was going in such a rush.
Four hours later, I was at a matinee that we had planned to see. I figured he probably got held up with an errand.
A couple asked if the seat next to me was taken.”Yes it is,” I said. “My husband is just parking.”
I wanted desperately to trade places with them—be living someone else’s story, where Prednisone did not have the starring role, where it had turned my husband into a stranger to me and to himself. He still hadn’t shown up by the end of the movie. As the credits rolled, my cell phone buzzed, Don’s name flashed as the caller.
“Hello,” I shouted. I stumbled around knees and stomped on feet to get to the aisle, and then ran toward the exit with the phone to my ear.
“Mom?” It was my daughter. I remembered that she was coming home from college for a visit.
I was nauseated by the double jolt of relief and disappointment. “Why are you calling on Dad’s phone?”
“I lost mine.” She sounded hurt at my tone. “I just wanted to let you know I got back from Santa Barbara.”
“Is Dad there?”
“No. Why would I be calling you if Dad was here?” She sounded surly now, but I was still too overwhelmed to care about hurting her feelings.
“Momma?” Anna hadn’t called me that since seventh grade. She’d never heard me swear. She sounded alarmed.
Maternal instinct seeped through. I mustered a calm tone. “Honey, can you do something for me?” I said. “You know Grandpa’s old rifles? They’re under the front porch wrapped in a green blanket. Can you go check and tell me if you find them?”
“Why don’t you look when you get home,” she said, wary of me now.
“It’ll be dark then, and I just want to be sure they’re still there.” I didn’t tell her I’d hidden them from Don during his manic phase, fearing that he might focus on those as easily as he had on finding a house in Youngstown.
She returned in a few minutes. “There’s only one.”
“Which one is it?”
“I don’t know the difference. It’s the one with the scope. What’s going on? Where’s Dad?”
She had found the twenty-two, which meant Don had the shotgun. My life as I knew it was over.
The police showed me where they found Don. They showed me the rock where Don could stay partially hidden from the road by lying at its base and using it to prop up his head and shoulders so he could position the shotgun correctly.
Where was the blood? There’s a lot to clean up after someone puts a shotgun in his mouth and pulls the trigger. The police report had said Don’s body was found with “a large predominantly right skull defect with multiple skull fractures and avulsion of much of the cerebral cortex.” This meant he had literally blown his brains out. For some reason it made me feel better to say it that way, to meet it head on. I knew the words shocked, but I found comfort in letting others know the true impact of what Don had done to himself. I enjoyed seeing expressions of horror when someone asked if I had to identify Don’s body and I replied, “There wasn’t much of his head left to identify.” It described me own internal turmoil and my lost soul.
I dropped to my knees in the prickly weeds and sifted through the dirt looking for bone fragments like an archaeologist searching for remnants of a lost civilization. I was trying to piece my life back together. All I found were cigarette butts. I had expected a feeling of closure at finding Don’s final resting place. Instead I was morbidly curious about why there would be no blood. What had they used to clean it up so thoroughly? Why hadn’t they left some of him for me?
I sat by the rock and leaned back trying to see what Don would have seen. Normally I would have had a clear view of the ocean, a good five miles away, but a layer of fog obscured the coast and snuggled against the cliff, moving swiftly toward me like a wave, sealing off any glimpses of life.
My day in Youngstown in the car with Don made me realize that my life was careening out of control to a strange and frightening world where none of the rules which had applied to my organized and rational life mattered anymore. I was in a sickening freefall through space that would last for three years. No one—doctors, psychiatrists, therapy nor lawyers could help me.
I finally emerged to a better place when I went on the way he wanted me to go, like when I was learning to appreciate cycling with him—gaining confidence, going outside my comfort zone to question doctors and the pharmaceutical industry, and always having the Don I knew with me.
Jill Stegman is a central California-based freelance writer at work on a memoir about this journey. Her short fiction and essays have been published in such journals as Eclectica, Pithead Chapel, and About Place.
I don’t even know what to say! Except that your story gripped my heart. Thank you for sharing it. xx’s
I appreciate your willingness to share this personal experience. My husband has had two bone marrow transplants…10 years ago he was out on 80 mg of pred…it almost ruined me. The daily verbal abuse was paralyzing. I knew this was the medication and tried to rationalize it. Now my husband is in the hospital with possible GVzh in his lungs and those horrible memories are coming back. I hate go admit this, but I wish hewould could stay in the hospital for a while longer…I am so sorry to read about your husband. This drug is what saves them and what takes away their basic essence. Thank you for sharing!
Wow. This is literally my life. Bone marrow transplant 10/2019 . Gvhd diagnosed April 2020 and it’s been a nightmare and a rollercoaster ever since. My husband also is a severe traumatic brain injury survivor and Tgose coupled together are the double whammy that many days cause me to wonder if I will actually survive,
Wow, it’s nice to know that I’m not crazy when I tell people that prednisone has turned my husband into a monster. The Doctors keep saying the prednisone doesn’t effect people like other steroids but I know that’s a lie. He actually looks for things to start a fight about. I’m sorry for your loss but thanks for letting me know it’s not just me.
I lost my husband after 5 years in a relationship and 1 year of marriage due to kidney rejection after a biopsy. He actually overdosed on prednisone and we got into a physical altercation that traumatized me to the point of no return. I miss him but I’m so scared I’ll die or he will as a result of the meds. I said hurtful things to him out of shock and now he probably hates himself and me for leaving him at such a hard time in his life. I’m completely shattered thanks for sharing I couldn’t bare your pain.