Authors: Nancy Nau Sullivan
He had therapy, massages, back braces, support hose, none of which did much good, and getting him into the support hose nearly broke my back.
No matter what, we couldn't seem to get away from The Leg. The pills were merely a crutchâa quick fixâand every doctor had a favorite. Generally, Dad was getting worse. Maybe there wouldn't be any improvement. I had to face the facts that at some point nothing would work for anything. Getting old had its terminus. Still, I was impatient.
I asked the pharmacist about the effects of taking Aleve and Tylenol for a long stretch. They seemed to be the only pills that worked with a modicum of regularity and didn't upset his stomach. She didn't see a problem with that.
“But maybe his condition is getting worse,” she said. “Did you ask the doctor for a stronger pill?”
Some days The Leg didn't bother him much. Mom had arthritis, which she called “Arthur,” who “traveled,” but always came back. There were good days and bad. As time wore on, Dad complained more and more that he couldn't walk, even with the aid of the walker. As a consequence, he didn't want to get up. So, he wet himself.
We worked out a little arrangement to give him some dignity when he needed dry pants. I stood behind him while he dropped his trousers and the wet diaper and then I stuck the dry one between his legs and he maneuvered it into place.
Sometimes in all this, reality struck out of the blue. The
situation is not going to get any better. I didn't listen. We had to keep trying.
Still, overall, he was in a better humorâI couldn't have been happier when The Leg went away and left us all in peace. Since leaving Indiana, Dad had regained weight and lost the unhealthy pallor. In Florida, he began to enjoy himself with my aunts and visitors, in private “conferences” with Tickâand even in the playful teasing with Little Sunshine. He was a regular Old Sunshine. The only regular medication that worked had been vitamins and baby aspirin, with the occasional help of Tylenol or Aleve.
But, the parade of pills never did it for him. They didn't relieve the pain in his leg, and they hadn't worked on symptoms of depression when Mom was dying. It was the crux of my general argument with Julia, and the doctor. Either the pill, or the dosage, was wrong. I could never figure it out. He didn't stay with one long enough to discover why, because they all made him so goofy or sick to his stomach.
On another visit to the neurologist, I said, “Isn't there something we can do?”
“Things of the last resort,” he said. “We don't really want to try them if this new drug works.”
The new drug did not work.
So, we moved on to one of the “things of the last resort.” This thing turned out to be the Spinal Cord Stimulator. The stimulator was meant to intercept the pain signals from the brain to the leg. Basically, the contraption looked like a remote control attached to a wire. The wire went through the skin and was attached to the spine and the remote was hooked up to a belt on the stimulateeâa.k.a., Dad. It sounded simple enough, although I didn't like the idea of Dad operating like
one of those remote control cars the kids got for Christmas and broke by the time the new year rolled around.
The doctor told Dad that he could adjust the dial on the remote to advance a tingling sensation and interrupt the pain, and for the life of him, Dad couldn't understand how tingling had anything at all to do with the knifing and stabbing from the bottom of his feet up and down his whole leg. But Dad was willing to try it.
My buzzer went off. I recalled another electronic moment with my parents that didn't work. That was the experiment with an electronic gizmo from the fast-hearing franchise of hearing aids. It was supposed to correct the problem of Dad not hearing Mom, especially when they were in the car, and at most any other time, too. She plunked down the $200 deposit, and the device arrived, never to be inserted correctly, or permanently in my father's left ear, which was all I could figure out through the yelling back and forth about the new ear. He couldn't get used to it, because, he decided, he didn't want it in his ear and he couldn't use his left side very well after the stroke. The miracle didn't fit or feel right, or work, no matter what they did. Without results there either, Mom wanted her money back.
The ear device was not really for Dad. Actually, his hearing was pretty good. The audiologist said he had selective hearing. He simply turned the thing off when he felt like it. He heard every word of Elvis, Garth Brooks, and Reba.
“Turn on my crazy music,” he'd say when we were driving along. Tick couldn't stand it. He reached over the front seat of the Cadillac like a large swooping bird and switched to some nice heavy metal, while I avoided going into a ditch.
“I hate that country stuff,” Tick said. “All they do is
complainââI left my sweetheart at the country fair and she ran off with a two-headed dwarf.'”
“Tick, this is American music. You should appreciate your great heritage.”
So, Dad could hear the great heritage, and he could hear me from the passenger side of the car. But he hadn't heard Mom. That drove her crazy. He wasn't going to drive me crazy, though, no matter what. I didn't think I was as strong as my mother in a lot of ways, but I was meaner. My dad acted like he couldn't hear, and so I ignored him. I got tired of repeating myself, when, in fact, most of my remarks were chitchat and didn't bear repeating. He wanted my full attention, and I gave him that when I could. That worked, without a miracle of any sort.
I hadn't been much involved in the ear experiment, but now I was willing to go along with the Spinal Cord Stimulator technology to correct the failing back and aching leg. I should have known better. Doctors often don't listen to their patients. Instead, they act like mechanics working on old cars.
We watched a video of people talking about their stimulators and how they were pain free and finally happy. Tick wanted to know if the Gampers would be in danger during a lightening strike, all wired up like that, and my daughter said Old Sunshine could learn to work the TV with a remote control for his back, as well. He was always losing the TV remote, and grew frantic when Jimmy Stewart and Gregory Peck were just about to close the deal. I didn't think the video about the stimulator's alleged benefits was too convincing. It looked like an ad. But were all these people in the video lying about their miraculous, pain free experiences? Could that be?
Dad went to the hospital to have a temporary stimulator installed for a two-day trial run. If it worked, a permanent contraption would be hooked up to his spine several weeks later. He'd have a few wires sticking out of his back. What the devil was I thinking when the doctor told me that part?
It took less than ten minutes for the neurologist to attach the thing, and then Dad went to a hospital bed for an overnight stay. He had to lie flat on his back for twenty-four hours, during which time he could play with the dial during this period. The real test was to come the next day when he stood on his knife-stabbed right leg.
The next morning the neurologist called me at home and told me to get over to the hospital. “We tested the temporary stimulator and it's great; it works. We'll put in a permanent one in a week or so. You can pick him up and take him home,” he said. “But bring him back tomorrow and we'll take out the temporary, so he can heal for the permanent procedure.”
I tried to get all that, but he was gone. He was probably in a great hurry to insert another miracle spinal cord stimulator.
I found my father sitting in a chair in his hospital room with a completely devastated tray of food in front of him. There was nothing wrong with his appetite.
“How's it going?” I said. “Gee, I feel like it's Christmas and you got the brand new toy.”
“Well, the pain in my leg ⦔
“What? The doctor said it worked fine. What do you mean?”
“Well, I can't turn it on because every time I stand up the leg hurts.”
“Dad, you're supposed to turn it on when you stand up so the leg doesn't hurt.”
“Well, you see, it doesn't work that way. I'm telling you, it hurts too much.”
I sat down on the edge of the bed like someone pushed me. I was deflated, but at least we had the day to fiddle with the thing and maybe get Dad used to working with it.
I took him home, and he lay in the bed, moping. He turned up the dial on the remote control attached to his belt and the leg twitched, unpleasantly. He wasn't used to the sensation. He got up to go to the bathroom and was so shaky he almost fell down. Worse still, the tingling made him want to go to the bathroom more, which was already a tortuous walk. We turned down the remote so it didn't tingle so much, and then his leg hurt.
“I feel like I have St. Vitus Dance with the thing on,” he said. “And when it's off, it's like a knife. It's stabbing me again.”
I pulled up the back of his shirt. Under an enormous clear bandage, I saw a bloody gauze pad and wires plastered to his yellow back. My face burned with outrage. Then, I blamed myself. This was something we wanted. This was something I actually asked a doctor to do to my father.
I didn't want Dad to see it, or know what it looked like. It was bad enough he had to feel it. I tucked his shirt in. I didn't say anything. Not just then.
The next morning, Dad came out of his room, dragging the remote on its cord like a dead pet. He didn't pay any attention as the thing skittered along the ceramic tile floor behind him. I could see by the hole in the case that the battery was gone again, after I'd stuck it back in there a couple times the day before. I felt like calling Frank in Minneapolis, whose card was attached to the remote, and telling him exactly what I thought of his instrument.
We had an appointment with the neurologist, who had a smile on his face when he swept into the tiny freezing office where my father waited wearing a thin gown and I boiled for thirty-seven minutes.
“Mike, hey, how are you?” said the doctor.
“It didn't work,” I said.
“What's that? It worked fine in the hospital,” the doctor said. “What happened?”
My Dad bent his head over his chest, and his shoulders shook a little. I glared at the doctor.
“Obviously we need some intelligence here to operate it,” he said.
“Whose intelligence?” I said. “Yours? I don't see any intelligence working here at all.”
“It's a very simple machine.”
“For simple minds, or intelligent minds?” I said. “Which is it? My portable radio works better than this thing. The batteries kept falling out, so it didn't work half the time if he wanted it to.”
“Did you ever hear of Scotch tape?”
“Scotch tape,” I said. “For a setup that probably cost $10,000?”
“Eight thousand,” he said. Then he turned to Dad and shook his head. “I'm sorry, Mike.”
In a blink, the curtain flapped, and the doctor was gone before I could get up and put myself in the county jail.
Then a miracle happened. And as with most miracles that come along, this one was small and almost went unnoticed. Like a star shooting across the sky, or a violet pushing up under a tree, or a thousand-and-one things I could call
miracles, but take for granted. Since then, I've learned not to take any favor, insightâor miracleâfor granted.
I sat in the doctor's office where I usually spent at least one or two afternoons a week with Dad. I was dejected, but probably not as much as Dad was. Then my ears perked up. The woman across from us was telling her companion about her stenosis in the spineâand her own miracle.
“Nothing but this cheap little white pill,” she was saying. “But it changed my life. I have to watch out for some side effects, but I'm telling you, don'cha know, I can walk!”
I leapt across the room and plopped down beside her, startling her.
“A little white pill?” I said.
She gave me the scoop.
“Prednisone. About six dollars for a hundred,” she said. A corticosteroid used to treat arthritis. And it worked for her when nothing else did, except maybe Tylenol, which we agreed didn't require a medical degree to figure out. “Arthritis,” she said. “It comes and goes, and Lordie, am I glad when it goesâbut this pill has given me relief.”
I asked the doctor about it that afternoon, and he agreed to put Dad on a trial run of a dose pack of Prednisone, 40 milligrams the first day, with descending amounts each day after that for a week.
For the first time in months, The Leg was gone. If it returned at all, and briefly, it came with a dull knife that couldn't quite get in there and slice its way up and down The Leg.
The warning label stated that Dad might have “difficulty sleeping, encounter mood changes, nervousness, increased appetite or indigestion, swelling, black stools, vomit that looked like coffee grounds, nausea, changes in menstrual
period, headache, muscle weakness, sore throat, cold or fever,” which was a pretty good rundown of all the side effects of the pills he'd been taking for years.
Fortunately, he didn't have those, or any bad or lasting side effects. He always ate a lot and was nervous from time to time, but that was pretty much his normal state anyway. The doctor kept an eye out for all the signs, because corticosteroids are hard on the organs. The only sign, though, was one of relief. He was better, and that was good. In fact, the Prednisone gave him complete relief for long periods. He was in a state of euphoria, and so was I.
So, we decided to take advantage of the new freedom and get out on the road.
Cueillez les roses de la vie
, Lucy always said. “Gather the roses of life.” Today.
So, with The Leg gone, we were free to move about Florida. I decided to plan a trip to Disney World. We ate smoked turkey legs, went on Dumbo and the Tea Cups, and took many turns on It's a Small World After All (Dad's favorite). Tick managed to hoist his grandfather up onto the horse on the merry-go-round. Dad was not satisfied to sit on the bench.