Making the Best of Things: Coping with a Mysterious Illness

A few years back, I was looking through some old family photos, back when that meant prints rather than pictures on a screen, when I was brought up short by a figure appearing in some of the photos. It was a woman whom I didn’t recognize, and that bothered me because she was in quite few photos with my family members and, try as I might, I couldn’t figure out who she was. Was she a friend or a relative that we don’t keep regular contact with? Was she some family member who had changed drastically over many years? Finally, I looked very closely at the face and realized that the woman was Marcia, my wife! It was from a time in the late eighties when she began her struggle with what was then a mysterious illness, a time when a doctor was giving her large doses of prednisone, an anti-inflammatory drug, and, as a side-effect her body had swollen up as if she was a balloon that was being inflated near to bursting.

Back in the late eighties, Marcia had been working for a few years at Legal Aid as an attorney, a job she acquired after graduating from law school in 1980. That was the year that I started graduate school in English. Our plan was for me to support her going to school first and then it would be my turn. After getting my Masters’ degree, I went on to take the courses needed to get a PhD and was trying to write my dissertation with little success, probably due to making little real effort. I was enjoying part time teaching at Otterbein where I taught the literary classics and modern literature with considerable leeway in my choice of texts and methods and where I had the convenience of my own personal office space.

It was a time when housing prices were rising in the suburb where we lived. Hilliard was beginning to grow rapidly, and our small home had appreciated in value. We had always wanted a place in the country, and, with Marcia having a secure income supplemented by my paycheck, it seemed an advantageous time to sell the old home and buy a new place further out from downtown. At that time, Columbus area commercial development didn’t extend much beyond the outer belt around the city. The first time that we saw our future home at night, we laughed at how spooky it was driving through a tunnel of darkness formed by walls of tall trees and unlighted highway. The house was across from a stable, with a farm on one side and an empty field on the other side. Behind a break of trees in the back was a golf course. Marcia, having grown up on a farm, missed living in the country. I liked the idea, but with two stipulations: our new home must not have well water and must not be heated with fuel oil. I hated the taste of the former and the smell of the latter. Our new place met those qualifications.

It wasn’t a well-crafted old farmhouse. Built in 1900, it had been a cabin for railroad workers when tracks still ran behind the house. It wasn’t until the current owners bought the house that a modern kitchen and furnace were added, and the upstairs was accessible by a staircase rather than a ladder. My carpenter grandfather (on my mother’s side) hated the construction of the place and dismissed it with what for him was his ultimate insult: “it looks like a shoemaker built this place!” Despite the fact that it had been originally cobbled together (under the living room rug was a patchwork of boards), we loved the place.

It also was not a big house – 1500 square feet, small by today’s standards, but it seemed huge when you have been living in a 900 square foot box. A pie shaped lot of a little less than an acre, it nevertheless had room to fence in an area for a pony, and we soon acquired one with the seller throwing in a saddle and sulky. We became a popular aunt and uncle being able to offer our nieces and nephews pony rides.

After a time of initial happiness, though, problems began to creep into our lives. Marcia had been prone to ill health, mostly asthma, and she had never been an easy person to get awake and going in the morning. When we were first married, there were mornings when I would have to teasingly throw back the covers and rotate her by the legs so that she would get up and not be late for work. Now something different was happening, though, aching pain and overwhelming fatigue. Then began the parade of doctors. There was the doctor who thought that the prednisone shots would snap her out of it. When they worked less and less, swelled her up and made her feel nervous and awful, we tried another doctor who said that if Marcia kept on her current dosage of prednisone she would be dead in a few months. We went up to Cleveland Clinic. She was tested for Lupus, Lyme disease, multiple sclerosis, fibromyalgia, all with periods of anxious waiting followed by negative results. There was, of course, the it’s-all-in-your-head speculative diagnosis of depression. My favorite attempt at diagnosis, though, was the doctor who said she was tired because of carrying around the weight of large breasts.

Meanwhile, she was getting worse and worse. Her legs began to collapse under her when walking so that she could no longer walk the hundred feet from our house to our driveway. She could no longer raise her arms above her head to wash her hair. She began to experience bouts of mental confusion. First it was no longer possible to do her legal work. Then she was unable to focus on leisure reading. The woman who had read Sartre and Camus novels in the original French when in college, now had trouble following storylines. She would become so confused at intersections and when making routine driving decisions that she was no longer able to drive.

The lowest point was when she became confined to just lying on the couch. The big prednisone doses had given her cathects so she couldn’t see the television screen. We now had no income other than the pittance that I made as a part time instructor. The local library, though, had a small collection of movie titles. At that time, video players and cassettes were just being introduced to the market. Fortunately, the library seemed to have every musical that Shirley Temple ever made as a child actor. Remembering my high school teachings on optics, I took a piece of cardboard and poked a tiny hole in it. Marcia held it in front of one of her eyes, and it focused the light enough for her to enjoy watching the musical moppet sing and dance her way through her adventures in film after film.

When someone is in this sort of decline, with medical science providing no answers, you suffer, patient and caregiver, from the fear of the unknown. Where will all this end? Have we reached bottom or is this just a pause?

Our first order of business, though, was paying our bills and not losing the house, Marcia’s sanctuary in the beautiful and tranquil countryside. When I couldn’t find full time teaching work, I turned to Columbus State Community College where adjuncts (part time instructors) had only file drawers, not offices. “They gave me a course,” I told Marcia, “but that course plus the Otterbein teaching won’t cover our expenses.”

“See if the chair will give you more courses,” Marcia urged me.

So I became what people jokingly refer to as a “Roads Scholar,” an adjunct who travels the highways near and far picking up part time teaching work to make ends meet. The state limits the number of public college course hours you can teach as a part-timer, enrollments fluctuate and fall off greatly in the summers, so you have to catch where catch can. At that time, it was forty minutes to the Columbus State downtown main campus, although there wasn’t much traffic when you were teaching a 7am course. It took 40 minutes to drive southeast to teach at OSU Newark, 45 minutes northwest to teach in a Marysville community college or at Maryville Reformatory for Women, 45 minutes to get to a Columbus State’s off- campus site in Grove City or Gahanna, a little less of a drive for their classes in Dublin. It took me an hour to reach my teaching assignment at Madison Correctional west of Columbus and then the extra time of having to go through security at the prison.

Financially, it wasn’t exactly keeping our heads above water. More like being able to bob up for air now and then.

But health-wise, there was hope. We began to read about a condition called Chronic Fatigue Syndrome. The symptoms seemed to describe Marcia’s condition. But it was a controversial diagnosis, at the time unrecognized by authorities such as Cleveland Clinic. Some skeptics thought it was just a fashionable misdiagnosis for what was really depression. Others thought it was an excuse for malingering. There was no medical test to confirm it, no widely accepted standards for diagnosis, and no established cure. Medical professionals scoffed: everyone gets tired! Sufferers, though, began to speak up. I remember one letter to Newsweek Magazine, from a doctor who had the condition. He wrote that he knew what tremendous fatigue was like having worked long, arduous shifts in medical training. The fatigue he felt now, with Chronic Fatigue Syndrome, he wrote, was something much greater. It was devastating.

Our first break came when we found a local doctor, Lori Sullivan, who believed in the diagnosis. We learned that she was treating other patients with the malady. We had read that one treatment that seemed effective was large injections of B-12. Dr. Sullivan believed that Marcia had the syndrome and was willing to prescribe the B-12. Now we could start Marcia on a treatment program, and, with the diagnosis, she could apply for Social Security Disability.

It took a year to get on the disability program. It’s customary to have your first application rejected, but she appealed and was finally accepted into the benefits program. She was able to get cathect surgery. The B-12 shots that I administered to her seemed to be helping, if only very gradually.

Meanwhile, I was adjusting to the life of a “roads scholar,” learning what was the cheapest burger or sandwich on a fast-food bargain menu and ordering it without condiments so that I could eat it as I drove without dripping sauce on my business casual teaching outfits. It was a low status job with little in way of benefits and no job security. Otterbein would give me a small raise based on my time teaching there, but the public colleges didn’t financially recognize work experience. It didn’t matter how long that you had been teaching; the pay was the same for the newbie as for the old hand. Institutions would defend their reliance on adjuncts (over half the teaching staff) by citing their high hourly pay rate, ignoring that the pay was only for class time when most of an English teacher’s work, preparation and grading, is done outside the classroom. Office-wise, the job always reminded me of a line from Bernard Malamud’s story “The Magic Barrel.” When a character is seeking the matchmaker, he goes to his apartment and finds only his wife home. He asks the wife where the matchmaker’s office is, and she replies, dryly, “In his socks.” Still, it was teaching, and I loved teaching and the interaction with the students. As I would remark, philosophically, to other adjuncts when they groused, there are lower circles of hell. I would tell myself that at the end of a term I would quit teaching and find something that didn’t pay chump change, but I never did.

Before Marcia’s illness, in regard to household work, I was a typical male of the time, if perhaps a bit more obnoxious. Marcia had done the cooking. I waited, reading or watching television. Once I told her, “Don’t tell me when the food is done cooking. Tell me when I can actually get it in front of me and eat. Tell me when it is mouth-ready.” Now, if we were going to eat, I had to cook. We couldn’t afford to dine out. If I wanted Mo Shu Pork, I had to get the ingredients and learn to make it. I adjusted.

For solace, I turned to classical music. The same library that had the Shirley Temple movies had a small selection of classical music CDs which I listened to over and over, their complex beauty became a refuge from the problems of my life. I could listen to OSU classical on the radio as I drove back and forth to class, and I could listen while I did household chores. As Marcia’s health improved and our personal finances got better, we were able to go to Columbus Symphony performances downtown and sit up in the cheap seats.

Then came a turning point in our lives, the day that we talked seriously about adoption. We had tried without luck to have children and had talked vaguely about adoption before.

“I’m not well enough to work,” Marcia said, “but I’m well enough to wait for a child to get off a school bus and well enough to help a child with his or her homework.”

“But we’re barely getting by financially now,” I replied.

“If we adopt an older child through Franklin County, they give an adoption subsidy because older children are harder to find parents for.”

“It would be nice to adopt siblings,” I said, “to keep them together. That must be hard for agencies to do. We couldn’t manage a baby or run after a toddler. You don’t have the health for that, and both of us are too old.” Marcia agreed.

We began the process, and we were very fortunate to have two incredible people on our side. One person was our new doctor, Dr. Sullivan, a single woman whose heart was so big and brave that, on her own, she had adopted five special needs older children. She would always understand our childrearing problems. The second incredible person was our social worker, Melinda Dout, who was our guide through the adoption process.

It is a scary thing, going through the county adoption process. It’s a foster-to-adopt program. You take the same classes as people who only intend to do foster care. You began by filling out a questionnaire that lists seemingly every problem you could have with a child, from the trying to the terrifying. You have to mark what problems you would be open to dealing with. Here Melinda’s wisdom was crucial.

“Don’t be a martyr,” she would say. “Don’t put yourself in a position where you are overwhelmed. But remember that these children are special needs children. One way or another they have been traumatized. They are going to have some of the problems on this list. But you will discover that you are stronger than you think you are. I will be here to help you. Give yourself a little room to grow as a person.”

She was right. Years later when we looked at the list, we laughed because, without realizing it, many of those problems had come up in raising our kids and we had surmounted them.

We adopted Phillip, age 11, and his sister, Desiree, age 13. The week that they moved in, we had symphony tickets. We didn’t think that it was a good idea for both of us to be gone so soon on their arrival, so I went to the symphony by myself. It was my favorite concert, although I didn’t pay much attention to the music and can’t remember what was played. I was just thinking constantly about the kids, and I was happy in a way, and to an extent, that I never imagined I could be happy.

* * * *

Life is full of corners that you can’t see around. Around a corner, there can sometimes be something bad. Alright, many times it’s bad. But you might get lucky. There might be a good surprise around the corner.

We officially adopted the kids in the spring of 1994. We decided on an open adoption, so we had kept in touch with their biological mother, Lynn. If any relative could play a positive role in their lives, we wanted that relative to be part of their lives, leaving the door open for the children to decide for themselves, when adults, what sort of relationship they wanted to have with that relative.

The summer of 1997, Marcia and the kids were to meet Lynn at the Ohio State Fair. She had said she had something to tell us, leaving us in suspense. As they walk down the fairway toward the meeting spot, they speculate out loud what the big announcement might be.

Phillip pipes up, “I think that she’s pregnant.”

Marcia and Desiree chuckle. It was fifteen years since her mother had had Phillip, her youngest, and he and Desiree were her only children.

“No, Phillip,” Marcia scoffs, “Your mom is not pregnant. She’s homeless right now.”

But Phillip has the last laugh. He’s right.

When they leave Lynn that day, as they walk back down the fairway to depart, marveling at the surprising turn of events, Phillip says, “She probably will give that kid up, just like she did us. If she does that, Marcia, you guys would adopt it right? You guys would adopt the baby? Wouldn’t you? Wouldn’t you?”

THE END