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Scleroderma: Sue's Story by Archie Bailey

Time has passed since Sue's death. Only those who have experienced the grieving process can understand the profound agony death presents to friends and loved ones.

Flowers for Sue by Shelley Ensz Susan (Hartwick) Bailey was my wife for forty-two years. Our forty-third wedding anniversary followed her death by eleven days.

In July 1990, Sue's rheumatologist told her that her puzzling physical symptoms could be signaling the onset of one of a variety of autoimmune diseases such as lupus or scleroderma. “Only time will tell,” her physician said ominously, “We'll have to wait to see what develops.”

Sue's official Certificate of Death, issued in August 1999, objectively listed her immediate cause of death as cor pulmonale, which is a disease of the heart characterized by thickening and dilation of the right ventricle that was secondary to disease of the lungs and their blood vessels. Other conditions listed as contributing to her death were pulmonary hypertension and progressive systemic scleroderma.

After her death, like others, I probably had many of the classic symptoms of clinical depression including depressed mood, loss of interest or pleasure in activities, changes in sleep patterns, loss of energy, and, at times, a diminished ability to think clearly or to concentrate.

Writers from ancient times to Shakespeare to C. S. Lewis' A Grief Observed and Ruth Coughlin's Grieving: A Love Story have written hundreds of books about the grieving process from their own perspective. All are very personal and revealing and all tell a different story. As a compulsive reader, the first place I turned for information about how to handle my loss, and perhaps find some solace, was to books. I made many trips to the local bookstore trying to read through my visual blur. I'd go directly to the section labeled “Grieving” and proceed, almost shelf-byshelf, one book at a time, searching for a sentence, a phrase or thought that would inspire me or help me to return home and face that empty house. Although touched by the personal stories of others and impressed by the written advice of professionals, I discovered that nothing applied to me. The grieving process is indeed an individual experience.

How it all began…talk about fate! I met Sue Hartwick through a one-line ad in the classified's help wanted section of the Detroit News in 1953. Or, to be more accurate, I should say that my father discovered Sue for me. My father was always trying to find me a job. He wanted me to keep busy. The ad wasn't a matchmaker-type ad, like those that seem so popular today. It simply stated: “Wanted, canoeing instructor for summer camp in the Petoskey area. Experience required.” A phone number was included. My father was convinced that the camp director was looking for me.

I contacted her and was invited for an interview by one of the most interesting and truly eccentric women I have ever met. She asked about my canoeing experience as a camper in the rugged Georgian Bay area of Ontario. During the interview, she even asked me to sing a couple of camp songs that I had learned at a camp in Canada. The only question she didn't ask me was the most important question of all. If she had asked, “How old are you, Archie?” the interview would have ended there. If she had known that I was only sixteen years old and in the tenth grade, I would never have been hired and would never have met Sue.

Even at sixteen, I must have looked older than my age. Maybe it was the early start of a lifelong receding hairline. But, I was also a former Canadian with all the appropriate social graces. I promptly stood when a woman entered the room, my manners were almost quietly British, and I still had a semi-Canadian accent. I rolled words like “aboot” and sometimes added a soft “eh” at the end of a sentence.

The camp director knew she was getting a bargain. The salary for the entire summer was one hundred dollars and on June 6, 1953, I boarded a Greyhound bus in Highland Park, Michigan, and headed for a summerlong job as a canoeing instructor on Walloon Lake <, not far from Ernest Hemingway's summer home.


In 1990, scleroderma caught both Sue and me by complete surprise. We were attending a political dinner. During the meal, I looked down and noticed that Sue's hands were deep purple from wrists to fingertips. Their appearance, clearly, startled me. Sue was a popular county commissioner at the time, and we were attending a political function at a local VFW Hall in her district. It was a warm August night, but we were sitting near an air-conditioning vent. The slight, indirect cool breeze was enough to cause her hands to almost instantly turn dark purple. I remember asking, “Sue, what's wrong? Look at your hands.” I touched them and they were ice cold. “What's going on here?” I asked.“ Oh, it's probably just from shaking hands with him,” she said pointing to the Republican nominee for governor, who was also campaigning at the dinner. Clearly, her condition wasn't a result of shaking hands with the Republican candidate. Her purple hands were one of the first signs of what can be the onset of progressive systemic scleroderma and several other medical conditions. It is called Raynaud's phenomenon and it is a disorder that can affect the blood vessels in the fingers, toes, ears and nose. It is characterized by episodic, vasospastic attacks that cause the blood vessels to constrict. Recent research shows that Raynaud's phenomenon may affect five to ten percent of the general population in the United States. Women are more likely than men to experience the disorder.

Sue soon learned from specialists that Raynaud's phenomenon could be symptomatic of connective tissue diseases like lupus and scleroderma. There are various treatments for Raynaud's phenomenon, but none worked for Sue. Keeping her hands warm with insulated mittens was the only remedy that worked for her. No one ever commented directly to Sue about her mittens, but she did receive stares from people at the local supermarket when they saw her in June, July or August shopping in the frozen food department wearing her mittens. Those mittens soon became part of her year-round daily attire.


Sue began her summer job as a counselor at Hilltop Camp the same day I started as the canoeing instructor. She had been interviewed and hired by“ Madame,” the title the camp director preferred, so nicknamed as a student on the campus of Michigan State College (now University). In June, Sue traveled by train from her home in Grand Rapids to Petoskey. We all arrived a few days before the campers.

On the day we first met, I was working with another counselor in the camp's Nature Cabin helping him unpack and catalogue materials. Sue came in and “Nature Boy,” as the Nature Instructor was called, introduced me to her. He knew Sue. He was from Grand Rapids, too and a student at Michigan State College.

Sue was born and raised in Grand Rapids where she attended public schools and graduated from Union High School. Her father was a postal employee and her mother worked in the lamp department of a local department store. Others have expressed it in words and song, and I can't add anything new or original, other than I felt an immediate connection with this very attractive girl from Grand Rapids. I anticipated a great summer.


At first it was difficult to understand why someone with Raynaud's phenomenon would be sent to a physician specializing in arthritis. But since scleroderma is a connective tissue disease, Sue's general practitioner referred her to an arthritis specialist for a consultation. During that period of time, I wasn't involved in Sue's day-to-day healthcare, so she went for the consultation alone. She said to me that night, “The doctor said it could be any number of things: lupus, scleroderma, or a half a dozen other diseases, which I can't remember now.” She also said, “It could just be Raynaud's and that I should try to keep my hands warm. She wants to see me in six months.” Neither of us was alarmed.


The summer of 1953 at camp on Walloon Lake was a turning point in my life. I didn't realize it at the time, but it was indeed an early rite of passage. No one at camp knew I was sixteen and I didn't volunteer the information. I tried my best to fit in. I told Sue many years later that I felt like Montgomery Clift in the classic film A Place in the Sun. Sue's response was, “Archie, aren't you stretching it a bit?” The other counselors were attending a college or university somewhere. Most were in a fraternity or sorority. Sue was a Gamma Phi Beta in East Lansing. Another was a student at Harvard, a school I'd only read about. I tried to blend in with the staff in every way I could.

That summer I drank my first beer, kissed my first girl, fell in love with the works of Hemingway and Upton Sinclair. I was introduced to a different world beyond the rough and tumble life of urban Highland Park.

In the middle of the summer, I somehow got up enough courage to ask Sue for a date. She accepted and we went with “Nature Boy” and his date to see a movie in Petoskey. The movie was Shane with Alan Ladd and Brandon DeWilde. The film impressed me. Today, I can still whistle almost the entire musical score, and I can repeat many of the main characters' famous lines. Many years later Sue said she remembered the movie, but not much else about that night. She never liked to look back in time. I bought the videotape of the movie and whenever I played it, Sue would say, “Oh, oh, here we go — Archie's in his Shane mood again.”

At the end of summer, I gave Sue my address and told her that I wanted to stay in touch. Apparently, she did, too. She went back to Michigan State and I returned as an eleventh grader at Highland Park High School.


Sue's pictures in the family photo album, from 1990 until her death in 1999, reveal a progressive change in her appearance. I didn't really notice the change until I was going through the photo albums sorting pictures after her death.

During the early 1990s, Sue was the Chief Deputy County Clerk. There were several posed pictures showing her seated at her desk. Even through her smile, she seemed to be getting more pale with each photograph. Clearly, she didn't feel well and her appearance was slowly changing. During this same period, she was increasingly annoyed by what she considered to be minor but persistent physical ailments. Her fingers were beginning to swell. For the first time in her life, she had trouble taking her rings off when she washed her hands or washed the dishes. Small red dots began to appear on the palms of her hands (physicians refer to this as“ telangiectases ”) and on her tongue and face.

She retired from public life in 1994, but continued to be active in a variety of organizations dedicated to the welfare of children. The Michigan Supreme Court appointed her to an important foster child advocacy board. At the same time, she was becoming a full-time grandmother and enjoying the role. Her condition was developing into a serious and chronic life-threatening illness, but it didn't slow her down. She complained to no one, except her physician, about her medical problems.


In 1954, I graduated from high school and enrolled at Highland Park Junior College. Sue completed her sophomore year at Michigan State. In 1953 and 1954, we sent each other cards and notes at Christmas. In 1955, I was in Miami, Florida, for Christmas and my father forwarded my mail to me there.

One day on the steps of the main post office in Miami, I opened a Christmas card from Sue. Her return address was Royal Oak, Michigan, not far from my home in Highland Park. I remember looking at my friend and saying something to him like, “Hey, we're heading home tomorrow. Sue Hartwick lives in Royal Oak now and I want to see her!” My friend seemed somewhat relieved because all he had heard from me for the previous two years was Sue Hartwick, Sue Hartwick, and Sue Hartwick. He thought he was finally going to meet Sue Hartwick.

We left for Michigan the next day, probably making the trip in record time in my beat-up 1949 Ford. The day I arrived home, I called Sue. We started to see each other and in August 1957, we were married in Grand Rapids.


In August 1994, Sue was at our cottage on Green Lake, near Interlochen, getting everything ready for the Labor Day weekend. Traditionally, this was Sue's favorite summer holiday. We always celebrated that final weekend of the season with good friends from Grand Rapids. She always wanted her cottage and the weekend to be just right. I arrived early Friday afternoon and found Sue lying down on the couch in the living room trying to keep warm under a heavy blanket. The temperature outside was in the eighties. She said she had a slight headache and felt a little lightheaded. I told her not to get up and to just lie there. I told her I wanted to take a short walk down the road behind the cottage to stretch my legs. Another tradition, she wanted to go, too. We walked a short distance from the cottage and Sue said, “I've got to go back. I can't go on. I don't feel well.” We turned around and inside the cottage she returned to the couch and got under the blanket. Something was definitely wrong; Sue rarely complained about anything. Later that night, our friends arrived and Sue did her best not to show her discomfort.

The next day we all went for our traditional end-of-the-summer boat ride around the lake. Sue didn't really want to go, but she wanted that weekend to be perfect. I have a picture of her on the boat in a heavy hooded sweatshirt. I took a lot of pictures that weekend. That night we went to Traverse City for dinner. At the restaurant, we all ordered a drink and our meals. Sue was very talkative —- almost nonstop, about nothing. We were served our food and Sue didn't touch her dinner. She never picked up a fork. She sat there and talked nonstop. Finally, her friend Betty took her by the hand and asked,“ Sue, what's wrong? Something must be wrong.” With tears in her eyes, Sue answered, “Oh, Betty, I don't know. I just don't feel well.” We helped her to the car and headed for the cottage.


During 1957 to 1959, I completed my undergraduate degree at Wayne State University in Detroit while Sue moved up through the ranks of Oakland County's Social Work Division. In later years, she reminded me from time to time when she seemed to think I was too self-confident, that the four college degrees I eventually earned would not have been possible if she had not worked for both of us those first two years. I agreed and, in fact, I told her many times that everything I achieved personally and professionally would not have been possible without her. I wasn't kidding. She was a great inspiration and motivator.

After graduation, I worked for Procter & Gamble in Saginaw. Although I was successful, I realized that it wasn't for me. I always wanted to be a teacher. So we moved to East Lansing for a year while I completed the requirements for a Master's degree and a Michigan teaching certificate. Again, Sue worked for the Ingham County Probate Court while I was in school.

In September 1961, I began teaching for the Livonia Public Schools and Sue returned to the Oakland County Probate Court. They were pleased to see her return. We moved into our first home on Ellwood Avenue in Berkley that we purchased for twelve thousand five hundred dollars, wondering how we would ever be able to pay off the mortgage.

The Berkley years were exciting for both of us. Sue and I enthusiastically entered the world of politics. The Berkley City Council recognized Sue's ability and appointed her to the Oakland County Board of Supervisors. I was elected to the Berkley Board of Education. We met friends and future leaders like Carl and Sander Levin, Jim Blanchard, and many more.

In November 1963, I chaired the annual Phil Hart Dinner — one week before President Kennedy was assassinated. Newly elected Senator Edward Kennedy was the guest speaker. Sue sat next to him with me at the head table. It was heady stuff for Sue and Archie.


We left the Traverse City restaurant that night in August 1994, took Sue back to the cottage and put her to bed. The next day I drove her to the emergency room of a Flint hospital. We were both shocked to see the triage nurse write down and circle in red that her blood pressure was 245/120. The ER doctor said Sue had malignant hypertension. He had no idea what was causing it. “That's for your family doctor to determine,” he said. It was at that moment that we began our long journey through the maze called “the practice of modern American medicine.”

It was Labor Day weekend. The ER physician reviewed her status and gave her medicine that brought her blood pressure down slightly. He said, “I'm going to send you home. I want you to see your own doctor tomorrow morning.” That response didn't sound right to us, but we were new to the system. The next morning her blood pressure had gone back up. Sue had been seeing a new general practitioner (GP). The doctor was a woman and Sue liked her. She had always wanted a woman doctor. I never knew much about that physician except that she was a woman. Sue was impressed.

When Sue saw her the next day, she was given another drug to try to bring the blood pressure down to an acceptable level. If it didn't work, Sue was told to come back to the office the next morning and they would try something else. I monitored Sue's blood pressure at home, and I could clearly see that the medicine wasn't working. We were back in the office early the next morning. The nursing staff took Sue into the examination room and in about fifteen minutes, a nurse rushed out and asked me to come with her. “There is a problem,” she said, “please come quickly.” Sue was lying unconscious on an examination table. Her eyes were open and widely dilated. She seemed to be staring at the ceiling. Her doctor and another physician were trying everything to help Sue regain consciousness. What they were doing wasn't working. They called for an ambulance, and we returned to the same emergency room of the local hospital; the same one where that physician had sent her home just a few days before.


In 1967, Sue and I had been married for ten years. For some reason, we were unable to have children. Doctors at Beaumont Hospital in Royal Oak, Michigan, had given both of us a clean bill of health, but it just didn't happen.

In September of that year, we adopted our first child. Sue's mother had been living with us for the previous ten months through the final agonizing and fatal stages of colon cancer. Sue wanted to get out of the Berkley house. We both needed a change. So I took a job as a high school counselor in Grand Rapids and in September, Sue, our new baby girl and I packed up, cut our Berkley ties, and moved to Grand Rapids. We lived in Grand Rapids for one year. What a year it was!

The day I reported to school, I couldn't get in the building. The Board of Education had imposed a staff “lockout” in a labor dispute with the teachers' union. The lockout lasted about three weeks. Later in the year, the high school was rocked by racial disturbances that brought the Michigan State Police Task Force to the building. Events at the school were reported in the New York Times. National Guard officers slept in the gymnasium for about two weeks until the situation settled down. At the same time, the principal was fired as a scapegoat for the disturbances. Later, his replacement was fired for stealing school funds. It was a wild year.

Sometime that year, I met the Director of Personnel of the Flushing Community Schools, and he offered me an administrative position as Director of Guidance Services with the school district. I accepted and we packed up and moved to Flushing, Michigan, after only one interesting year in Grand Rapids. It was to be our final move.

Sue's first hospitalization made one thing very clear to both of us: the importance of the role of the primary care physician (PCP) in the treatment of scleroderma patients. When Sue arrived at the hospital by ambulance from her doctor's office, we received a number of surprises. The first was that Sue's blood pressure was really out of control, and she was in acute kidney failure. The medication she had received the day before had lowered her blood pressure too rapidly and some of her veins had collapsed. She was taken from the emergency room to a semiprivate room where we got our second surprise. We learned that Sue's GP didn't have hospital privileges. We learned that information from a physician who came into the room and announced that he was standing in for “Dr. So-and-So,” that he cared for all of “Dr. So-and-So's” patients who were hospitalized, but that “Dr. So-and-So” was out of town for the weekend. When “Dr. So-and-So” returned on Monday, “Dr. So-and-So” would be caring for her.

In the meantime, the “stand-in,” as I called him, picked up Sue's chart, scanned it, and then said with some urgency to the nurse who was present,“ Move Mrs. Bailey to ICU immediately. I don't like what I see on this chart. She will need full-time nursing care. Get her there as quickly as possible.” That was the most decisive action taken by anyone up to that point. I asked the doctor if he could take over and supervise Sue's case. He agreed but wanted to talk with Sue to make sure she approved. At this point, Sue was still unconscious. When he finally got a chance to ask her several days later, her response was one that none of us forgot. Meeting this doctor proved, in the long run, to be a very lucky break for Sue. He immediately assembled a team of heart, lung, kidney, eye, blood, and neurological specialists from the local medical community. They sent blood and urine specimens to the University of Michigan for special tests.

During Sue's hospital stay, her condition ranged from critical to stable. She drifted in an out of consciousness and, at times, had very limited mental acuity. Amazingly, ten days after she had been admitted, Sue went home. She had been through a great deal during that time, much of which she didn't remember. It would be the first of many hospital stays. Sue's new doctor broke the news that, indeed, she did have scleroderma. Her blood tests didn't clearly indicate the disease. In fact, throughout the entire progress of the disease, she never passed the blood test for scleroderma, but small things, when put together, seemed to make the diagnosis positive.


When we arrived in Flushing, we thought of the town as a small quiet suburban community nestled along the banks of the Flint River. I had read Edmund Love's book The Situation in Flushing, and I actually thought Flushing would be the way he described it. I soon learned that his book was indeed— as the author told me himself many years later — pure fiction. I enjoyed my job at Flushing High School. During our first year in town, Sue was named Branch Manager of the Michigan Secretary of State Office in Flushing. The position was a political appointment made by Michigan's Secretary of State Richard Austin. The Genesee County Democratic Party and powerful UAW officials had recommended another person to Austin for the position.

Not for the first nor last time, Sue challenged both those authorities with great poise and used her contacts, established as an Oakland County official, to appeal directly to Austin. He appointed Sue and she served as Branch Manager for almost two years until the position became a state civil service position, and the office was closed. In the process, Sue ran the office with efficiency and met hundreds of Flushing-area residents, and they liked her.

In 1971, we adopted our second daughter. Soon, Sue was appointed by the City Council to the Flushing Planning Commission and, eventually, ran unopposed for the Flushing City Council. This was the beginning of a winning streak of elections for her that lasted until she became Chief Deputy County Clerk in 1981. During her entire career as an elected official, she never lost an election. People liked Sue Bailey.


Sue's first hospitalization made both of us realize that our lives were changed forever. We began to do what every person diagnosed with scleroderma should do; we tried to learn as much about the disease as possible. Almost everyone's response to the word “scleroderma” is “sclera-what?” We soon discovered that the only people who knew anything about scleroderma were people whose own lives or loved ones had been affected by the disease. There are only a few scleroderma specialists in Michigan. One is located at Hutzel Hospital in Detroit.

After Sue got home from the hospital and was rested and somewhat refreshed, we visited the specialist in Detroit. We described what had happened to Sue in the hospital in Flint and shared all of Sue's test results and other records: acute kidney failure; malignant hypertension; an insidious swelling of her fingers; a thickening of skin on both hands; some difficulty breathing; red spots on her face and hands, along with many other related problems. The doctor said that all these conditions, especially kidney failure, were characteristic of scleroderma. The specialist's next comment was, indeed, ominous. She said that scleroderma varies in severity and progression. She told us that some scleroderma patients live with symptoms for many years, while others can have rapidly progressive and fatal heart, lung, and kidney involvement. The course of the disease, she said, is both variable and unpredictable. She said that future medical care would, basically, be the management of Sue's symptoms. Subsequently, we saw a second specialist at the University of Michigan Medical Center. He provided the same prognosis. “Much research is currently underway in dealing with scleroderma and searching for the cause and a cure,” he said. “In the meantime, we can only treat the symptoms.”

By this time, Sue was feeling better physically and she determined that“ sclera-whatever” was not going to slow her down. Those who knew Sue best — her friends — will testify that until and near the very end, Sue tried hard to maintain a normal life. Slowing down wasn't her style. She was now a full-time grandmother and she put all her energy into that role and into a few committees on which she served. She chose her projects carefully.


In 1980, Sue filed to run in the Democratic primary as a candidate for County Commissioner. She was going to take on the incumbent. At first, she was a reluctant candidate. A friend and political advisor helped me to convince Sue that she could win. In the past, I had been the candidate several times while Sue worked on the campaigns. This time our roles were reversed, and I was on the sidelines planning, raising money, researching issues, and putting up signs while Sue did the vote-seeking. Sue was a very effective campaigner. She capitalized on her personality and people-skills and the fact that she was a woman out to claim some political ground. She campaigned door-to-door that entire summer. She walked in parades and shook hands at a variety of political events. She even rode a mule in a local parade. Campaigning was exhausting and many of her friends pitched in to help.

There were days when I would come home from work at the end of the day to find Sue asleep on the couch with campaign brochures still clutched in her hand. After dinner, she would hit the trail with friends knocking on doors until it got too dark to continue. The political pundits and local papers said there was no way she could win. The incumbent was too powerfully entrenched. They said Sue didn't have enough experience. It was even hinted that it was somewhat presumptuous of her to run. The large metropolitan paper strongly endorsed her opponent and lauded him for his experience.

On Election Day, she worked the polls from 8 A.M. to 8 P.M. nonstop. She had given the campaign everything she had. It paid off big. She buried the incumbent everywhere, even in his own part of the county. Sue's opponent in the general election was a highly respected businessman from her own community. Again, the largest local newspaper endorsed her opponent. Once again, her goal was to knock on every door in the district.

On Election Day in November, she won again. In January, she began a partisan political career that would span a decade. She would run in ten more campaigns for County Commissioner and never come close to losing any one of them. At the same time, she began to emerge as a leader in county government at the state level.


On her first office visit to her new PCP (the “stand-in”) after her hospitalization, he smiled and asked, “Is this the same Sue Bailey I saw in the hospital last week? It can't be!” Of course, Sue had worked hard to look good. She was determined not to allow her illness to alter her life outwardly in any visible way. That was to be her approach for the next four years — the last four years of her life.

Sue was tough. Even though her health forced her to sever many public responsibilities, she knew her three grandchildren were counting on her to continue to be a wonderful, caring grandmother — or “Mema,” as they called her. Circumstances were such that she was required to become an almost full-time grandmother, active in the daily care of her grandchildren. Her doctor told me many times during the coming months, “Archie, you must keep Sue stress-free as much as possible. Stress is the worst thing for her at this time. Scleroderma is progressive and episodes can be triggered by stress.” Frequently, as a modern mother and grandmother, avoiding stress just wasn't possible.

In 1998, our oldest grandson, who was eight at the time, stumbled, then fell and had trouble getting up while playing soccer. Throughout the week, he complained of pain in his leg and then fell again the following Saturday. I took him to a local doctor who x-rayed his leg and hip and then told me he had Perthes disease. The disease involves the disintegration of the hip and leg bone where they join together. The doctor said to me that day, “This is very serious. Something like this requires the very best specialist available. In this case, she is at the University of Michigan Medical Center. I'll call and make an appointment for you to see her as soon as possible.”

After several diagnostic visits to the University of Michigan Medical Center, our grandson had major surgery and was placed in a cast from armpits to toes. His legs were held apart with a wooden pole from knee to knee. Circumstances at the time required that he stay with Sue and me to recuperate. We pulled out the hide-a-bed in the family room and for eight weeks, despite her rapidly declining health, we cared for the little guy around the clock. In many ways, it was a pleasure for us to have him at our house. Caring for him helped Sue focus on something other than her own medical problems.Believe it or not, the three of us — grandmother, grandfather, and patient — had plenty of laughs and good times as his hip healed. His brother, Bradley, and sister, Erica, provided lots of good times also.

It was shortly after our grandson's full recovery that tests on Sue's lungs showed evidence of increasingly low diffusion rates. No one told us, but we both knew that scleroderma was attacking her heart, lungs, and kidneys simultaneously. The Merck Manual states that: “Scleroderma patients' prognosis is poor if cardiac, pulmonary, or renal manifestations are present early.”

From this point in time until six months before her death, Sue did her best to face the challenges presented by her disease. For example, she remained active on the board of directors of various groups dedicated to the welfare of children. The Michigan Supreme Court had appointed Sue to the Foster Care Review Board, and it was the last board from which she would resign because of her health. During this period, I drove Sue to her meetings and helped her to the meeting rooms since she could only walk short distances unassisted. She never gave up.

During this same period, she planned the wedding of our oldest daughter. She did her best to live up to her reputation as an effective organizer. Of course, the wedding was a success. Everything was perfect. Looking now at those wedding pictures, it was obvious that she continued to look pale and drawn. With a disease such as scleroderma where there is no known cause and no cure, the PCP can only do what the specialist had told us would be necessary: treat the symptoms. Distressing symptoms now began to rapidly develop into major medical crises. Initially, her kidneys caused the most trouble. Her renal specialist decided, in consultation with others, that she needed to begin dialysis. Since her veins were too fragile, she was not a candidate for weekly visits to the dialysis center. Instead, she had tubing surgically implanted into her abdomen for dialysis at home, four times a day.

Her rapidly failing lungs required her to begin using oxygen. Soon, she was in a wheelchair. Next, I had a hospital bed placed in our bedroom because she couldn't breathe lying down. Shortly after that, I had to call for an ambulance to rush her to the local hospital after a “spell.” She had lost consciousness at home and I feared the worst. By the time I arrived at the hospital, Sue was being rushed to emergency surgery. Her pericardium, the sac around her heart, had filled with fluid. Neither her kidneys nor the dialysis worked. After the surgery, I was told that they drained fifteen hundred cc's of fluid from a space that normally held fifty cc's.

During the next week, Sue didn't bounce back as she normally did. She slowly recovered from the operation and I took her home. Six weeks before Sue's final hospitalization, I helped her visit another local hospital. She wasn't there as a patient this time. She was in her wheelchair with an oxygen tank and other equipment she required in tow. She wasn't there for medical treatment. She was there to visit her new granddaughter, Bailey May Curtis. I believe that brief visit did more for Sue that any medical care she could have received. I took many pictures of the two of them together. I knew what Sue was thinking. She was probably saying to herself, “I wish I could be around to take care of this little bundle and watch her grow.”

The final five weeks of Sue's life are still a blur to me. During this period of time, Sue's body literally filled up with fluid. I would sit at night with her on the couch, and I had to put at least four inches of toweling under her feet to catch the water flowing from the pores in her legs. Soon, she was unable to bend her legs because of the fluid. Eventually, the fluid reached as high as her waist. She was drowning on the inside. The week before Sue died; I announced to the public that I would not be running for another term as mayor of our town. I did so, at that time, because nominating petitions were due, and I had to let people who were supporting me know what I was doing. I said that getting Sue back on her feet was my first priority, period.

Two local newspapers picked up on the story, and one asked if they could come and get a picture of Sue and me together and interview us. We were both public figures in our community. I asked Sue if she approved and she said, “Sure, but I'll have to get my hair done!” That was typical of Sue. The reporter and photographer arrived, took Sue's picture and interviewed us. For a while during the interview, Sue was her old self. That weekend, both papers ran a front-page story with a head and shoulders picture of Sue with a big smile. Other than for a few close friends, no one really knew how sick she was.

After the article appeared, cards and calls of wellwishers started to come in, many of them from people Sue had helped over the years. She enjoyed hearing from them. Sue's final trip to the hospital soon followed. She had emergency surgery to remove another two thousand cc's of fluid from around her heart. She never recovered from that operation. When her friends arrived at the hospital from Grand Rapids, the same couple who had been with us at the Traverse City restaurant that Labor Day weekend, Sue looked at them and said, “Well, this is it.” She didn't have much to say after that. For a few days she drifted in and out of consciousness surrounded by close friends and family.

When Sue's struggle appeared to be lost, I asked her doctor to meet with my daughters and me. I read him the following statement that Sue had placed in her directive for final medical care. She had written: “Please, when you see that the end of my life is near, don't try any heroic efforts to prolong it.”

In many ways, Sue was a very complex person, but on that point she wanted to be absolutely clear. I knew, and my daughters agreed, that Sue had reached that final point where there was nothing to be done. Her doctor said that he understood and doubted that Sue would regain consciousness. Subsequently, I signed the necessary legal papers, life support apparatus was removed, and the next day, August 13, 1999, Sue died.

Personnel of the local funeral home told me later that Sue's funeral was the largest in Flushing's history. She was a lifelong Episcopalian, but the local Episcopal Church wasn't large enough to hold the large turnout, so the service was held in our town's larger Presbyterian Church. Sue would have appreciated that kind of ecumenical cooperation. The weeks before and after Sue's death are still almost a total blur to me.

As I look back now at some of the things written and said about Sue at the time of her death, I get a much clearer picture of the role she played in many lives, in many ways. Sue served for many years on Genesee County's Substance Abuse Commission. She had to resign from the Commission because of her illness. The evening she retired, the Substance Abuse Commission honored her. They said, “Sue Bailey, this one's for you. This evening the Board and staff have chosen to honor you in a very special way.

“Over many years you have always been there for all of us and especially for those served by the Substance Abuse Commission. Your relationship started many years ago when you were a member of the Youth Assistance Board in Flushing. You continued your involvement as a member of the County Board of Commissioners. Even as chairperson of the County Board of Commissioners, you took extra time to become the commissioners' representative.“ For thirteen years you have served us well in times of plenty and in times of dissension. At no time have you served us better than in the past year. Sue, you have been the advocate, administrator, president, facilitator, the glue, the inspiration, and the encourager.“ You never back away from a fight, but you never forget to acknowledge the positive, and you are truly a friend indeed to all of us and we are indebted to you. You are a living example of how one person can make a difference, a personal philosophy that we know you believe in.“ Your personal and professional life is an exemplification of the phrase with those ten two-letter words: If it is to be, it is up to me.”

A reporter expressed it another way in an interview a few days before Sue's death. She said to me, “Mayor Bailey, you have your supporters and critics, but I have never heard anyone say anything negative about Sue Bailey.” At her funeral, the Episcopal minister quoted from a poem that he said summed up what Susan Bailey meant to the lives of those people she touched. He said, “Some people come into our lives and go quickly, but others leave footprints on our hearts and we will never be the same. Many of you will share footprints she left on your heart.”

Traverse City Record-Eagle

Susan (Hartwick) Bailey Died August 13, 1999 FLUSHING - Susan (Hartwick) Bailey, of Flushing and Interlochen, died Friday at McLaren Regional Medical Center in Flint.

Born in Grand Rapids, she was the daughter of Harold and Gladys (Pease) Hartwick. In 1957, in Grand Rapids, she married Archie Bailey. Susan graduated from Michigan State University and completed graduate work at Oakland University.

She was a 35-year summer resident of Interlochen, spending summers at Pennlock Colony on Green Lake raising children and grandchildren. She was also a dedicated public servant who held a variety of appointed and elected offices.

She served on the Oakland County Board of Supervisors, the Flushing City Council and the Flushing Planning Board. She was a five-term Genesee County commissioner and officer of the Michigan Association of Counties.

Susan also served as Genesee County's chief deputy county clerk. As a member of the Genesee County Parks and Recreation Commission, she is credited with having helped to create the concept of holding an annual Christmas festival at Crossroads Village, now known as Christmas at Crossroads, a popular annual event in mid-Michigan. Michigan

Governor James Blanchard appointed Susan to the Michigan Sesquicentennial Commission, the Community Corrections Board and the Local Government Claims and Review Board.

She retired from public life in 1992, but she continued to be active in organizations committed to the welfare of children. For thirteen years, she served on and chaired the Genesee County Substance Abuse Commission and the Newpaths Board of Directors.

Most recently, she was appointed by the Michigan State Supreme Court to the State Foster Care Review Board.

She is survived by her husband, Archie; daughters, Katherine (Kevin) Bailey-Curtis and Sarah Marie Coyner; and beloved grandchildren, Brandon, Bradley, Erica, and newly arrived Bailey May Curtis.

Cremation has taken place. A memorial service was held at 4 p.m. Monday at the Flushing Presbyterian Church. Memorial contributions in her memory may be directed to the Humane Society of Genesee County, PO Box 190138, Burton, MI 48519. Arrangements were handled by Rossell Funeral Home in Flushing.

A state representative who knew Sue well said, “She was a mentor for women just getting into politics and a role model for us all.” An Associated Press story reporting Sue's death included the following comment from a former county commissioner, who had served with Sue:“ She was one of the major women members of the county Board of Commissioners. She provided a leadership role model for a number of women like myself.”

The “stand-in” who took on Sue's case during her first hospitalization was impressed with Sue's ability to deal with his staff. The title of “stand-in” was soon changed to “the good shepherd.” He was the director of the Family Practice Residency Program and supervised the medical education of all his students. She labeled him “the good shepherd” because he rarely came into her room or saw her in the office alone. He was always surrounded by medical students who seemed to hover around him and follow him up and down the hospital's halls like so many sheep. He guided them with great care.

After Sue's death, he wrote the following to me: “I hope you realize that I appreciated Susan not only as a person and a patient but as a very fine teacher of medicine in her very own right. She was always kind and very patient with the many learners she saw, and I think that she probably understood her important role in educating them about her illness and enhancing their abilities to diagnose and treat other people who may suffer the same or similar afflictions. Many of the medical residents who saw her, expressed their gratitude, if not to her, then to me, for her kindness, patience, and wisdom in sharing her experiences so freely with them.”

The accolades continued to come in for Sue after her death. In July, the Flushing Concerts in the Park Series was dedicated to her memory. The family established the Susan H. Bailey Spartan Scholarship pledging twenty five one-thousand-dollar scholarships over twenty-five years. A plaque was placed in the local library in her honor.

Originally, I was asked by an online scleroderma awareness organization to write “Scleroderma: Sue's Story” so that others with scleroderma could get as inclusive a picture of scleroderma as possible. The condition of every scleroderma patient is different. Somewhere, to someone, Sue's story may offer some insight into his or her own case.

Since I began writing, however, I have decided that “Scleroderma: Sue's Story” could provide interesting reading for our grandchildren, especially Bailey May, who never got to know her grandmother. For that reason, I have added some biographical information about their wonderful grandmother that may be useful to them, someday, as they tell Sue's story to their children.

To Contact the Author

New Email: [email protected]
Story posted 04-14-01 SLE
Story edited VH1: 08-20-03 JTD
Email Updated 05-21-06 SLE
New email address needed 04-29-08 SLE
New Email posted 10-02-08 SLE

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin

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This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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