The Illumination of Shadows: A Personal Account
Pulled between California and New York, one man living with HIV found what he needed in quiet Western Michigan
A graduate degree was tucked in my pocket when I gritted my teeth and returned to Anaheim, California in October 1985 to start a second career. I had been invited to join a team of two and help develop the infrastructure for a new historical museum. Even though my appreciation for southern California is low, I figured the experience gathered would work best for long term goals. Intentions were to return to New York, secure similar employment and pursue a special woman: Rosemary.
For the first four months I spent evening hours dressed in lumberman's garb, scrolling pieces of wood for people's amusement and purchase in Disney's Frontierland until the museum was able to employ me full time. I had been fighting a persistent cough and progressive congestion since returning and by December it was obvious that breathing in sawdust was not helping matters. Suspicions grew because I was never prone to lingering illnesses.
The topic of HIV/AIDS was well publicized at that time but considering it as a possibility left me confused. I rummaged through memories searching for episodes associated with the virus's contraction. Baffled, the only questionable incidents were three surgeries the last two months of 1983 and January 1984, and blood was only used only for the first of these. Considering that the probability was low, I decided in early January 1986 to eliminate the possibility. With no insurance and a desire for anonymity, the County Health Department seemed the only recourse.
I courageously marched into the waiting room. Feelings of confidence were reinforced by my lack of knowledge. I looked around and saw others I couldn't identify with. My name was called, I gave blood and was asked to return in two weeks as information, be it negative or positive, could not be given over the phone.
How does a person describe the effects of being told they are HIV positive? For myself, it was like falling into a black hole one month after my thirty-third birthday. Life was void; I had no words to say.
My diagnosis showed a severe respiratory infection yet my T-cell count was 1,200. Given a prescription, I was told to return every three months. Services available for HIV/AIDS patients via a county health department filled the standard at the time. Minimal counseling support was offered and special outside references were given for long-term psychological assistance if requested. Of course, I didn't.
During my first year it became frighteningly evident that this disease was spreading. The Infectious Disease Department grew with space additions, room rearrangements and an increase in staff. Shuffling patients ceased as care became more personal with the assignment of a specific doctor and nurse to follow my case. My physical status showed few effects of HIV.
I was back to my "old self" within two months after the respiratory bout and further medication was not necessary. Quitting Disneyland in February, my concealed unemployment status changed when the Museum offered a full-time position in April. Reality punched me in the head one late evening at my folks' home. I was sitting alone on their patio in a cool breeze when my mother joined me.
"I'm concerned about Kathy's pregnancy," she said.
We spoke at length about complications regarding my sister until there was a lull in the conversation. The subject twisted to the hospitalization of Kathy's best friend's brother. He was slowly dying of AIDS. Light from the kitchen shone on my mother's face as her mouth formed sound and expressions changed. I retreated into the dark, not hearing her words and said nothing.
By the end of 1986, I persistently tried to return to New York or somewhere back East, though one of my two intentions for returning had become clouded. Phone calls to Rosemary were less frequent because I was riddled with confusion. I wanted to tell her but couldn't find the words, or the courage. Three position interviews took place back east during my two years in California but only one allowed a personal visit. I drove to her place of employment and silently stood watching her lock the office door. The flood of feelings aroused a sense of alienation. She turned, faced me, and the cutting edge of reality sliced deep.
"Mark, it's so good to see you; when did you get back?"
An immeasurable stretch of distance filled the space between us. I instinctively skimmed over the veneer of buried feelings. My disguise was operating. Conversation ended and we visually searched each other. I dropped my briefcase, opened my arms and without hesitation she rushed into them. I closed my eyes, held her tight, memorized her warmth and softness while my mind screamed, I cannot have you! Watching her exit through the door, left me feeling like an empty sarcophagus. That evening in the tortured silence of a hotel room, I squeezed back tears and thanked God that past timidity and care had stopped me from making advances. The thought of sex happening between us when I was unaware of my status placed a symbolic gun to my head.
Before returning to California, I drove to New Rochelle Park off Long Island Sound which was once a favorite place of mine to ponder the business of life. Dark green waves slapped against the rocks around me as I stared at a two-masted schooner bobbing west into the sunset. I closed my eyes and whispered to myself, "Who do I tell? How can I say?" Brushing sand from my pants, I rose to leave with no answer.
A Return to New York
By the end of 1987, my T-cell count fluctuated between 800 and 900. I left the museum in December and with only job possibilities in hand returned to upstate New York in March 1988. Two best friends, Phil and Sarah said I could stay with them until work was found. Memories put a grin on my face when I turned onto their rock driveway. They came out the front door, overtaken by their two dachshunds. The dogs' familiar and excited greetings seemed extra special. I wished I could go back.
"Katie and Reba still love Uncle Mark!" Sarah affectionately declared. I chuckled, but felt my walls rise.
Saturday passed with the usual banter. Sunday arrived and Phil and I fixed breakfast while Sarah dressed for church.
"You've been awfully quiet," Phil remarked in a serious tone.
To my best friend, I had no truthful response.
Blind hope steered me to Strong Memorial Hospital in Rochester to seek a second opinion. They advertised testing but there was no customary clinic, just an office. The young woman assisting me was personable and intelligent. She asked if I had been tested before, when and where. Yes, it was the ELISA, I acknowledged.
"The Western Blot is now included," she stated before detailing its advantages. "In other words, the results will be more conclusive for you, Mark."
She asked some personal questions and I could tell she agreed to test for the sake of my sense of conviction. Two weeks later I became forever convinced, remaining hermetically sealed.
In early May I was solicited to be an interpretive consultant at a seasonal outdoor living museum in the Adirondacks. A perfect setting for myself but, no matter where you go, reality follows. Avoidance had become a tool of defense whenever interested persons would make romantic suggestions. This way, confrontation with others or myself was avoided and concerns only needed to revolve around having to obtain periodic T-cell counts. Naturally, the requisite checkup fell in the six-month interim spent in the mountains. Circumstances wouldn't allow for the hours needed to drive to a metropolis in search of a health department. And I found no information indicating such services in the region. Shrugging my shoulders, I decided to skip it, but it played in my head.
I returned to Phil and Sarah's for a short time in October. Guilt had anchored itself. Phil and I had been friends for 21 years by that time, trusting each other implicitly. It would be cruel and failing on my part if he were to find out the hard way. Where had my faith in our friendship gone?
The day before leaving, I suggested a walk around their property. Autumn winds buffeted our face as I began my story. We reached the stretch of yard behind the house when Phil perceived my problem was health-related. I turned to look at his face, took a step back then said, Phil, I'm HIV positive. The words echoed in my ears because that was the first audible admission made to someone other than a doctor. Phil's jaw clenched, he grabbed my shoulders and I began to weep. Sarah had observed the behavior through the kitchen window and understandably surmised a problem. He told her after I left for California.
And Back to California . . .
Returning to the Orange County Health Department, its familiar walls and staff, imparted a surprising relief. Reassignment to my original doctor and nurse increased the sense of security. The nurse was cognizant of my thoughts and feelings about returning to southern California. We talked, in my limited fashion.
March 1989 arrived and I began working as a curator in a large municipal art gallery. Its fundamental politicized structure was a source of stress as the upper echelon epitomized the concept of bureaucracy. There was no chance for advancement and no insurance coverage for persons at my position level thanks to well-designed policy loopholes. By late summer exhaustion was common and T-cells had fallen below 600. When the calendar page turned to November, the doctor announced my counts were about 300. I wasn't surprised. A bad taste of reality filled my mouth when he asked me to think about beginning AZT treatment. I agreed three days later. Follow-up testing occurred in mid-December and its results rendered the doctor as surprised as myself. I spent a Merry Christmas with a T-cell count at 800. I was also grateful that my wages were low enough to make me eligible for social assistance.
1990 rolled into place and restored vigor inspired me to direct my sights east. I resigned, left California in mid-March and luck saw it that by April I was assistant director and curator of a historical museum and small art gallery in Saratoga Springs, New York. The picturesque community and respectable position didn't reflect the low salary and lousy health coverage. The Orange County Health Department made reference to the Albany Medical Center. It didn't matter if there was any closer facility because Saratoga was relatively small at that time and names and faces and their accordant positions within the community were recognized. My initial appointment was set for early May.
I found the massive structure was really a teaching hospital for SUNY at Albany. The Infectious Disease Department had a cavernous waiting area with two receptionists. A formal request was made to the Orange County Health Department to forward my records. For whatever reason the Health Department failed to transmit them. In one respect, treatment at the Albany Center was similar to the early days at the Orange County Health facility: you were likely to see a different doctor or medical assistant with each visit. Still, an attempt was made to accommodate the patient with a familiar face as often as possible. The department's fee rate was contingent upon your earnings but cost for medication became greater than what it was in California. I had health insurance coverage with the museum in Saratoga Springs but the patient's shared cost in comparison to the cost of medication relative to my salary was out of proportion.
From May 1990 through July 1991, counts fluctuated between 600 and 800. A health problem occurred in early '91. I don't recall the symptoms but doctors wanted to check my pituitary gland so AZT treatments stopped for two weeks. The undiagnosed problem vanished and I resumed medication. Counts remained stable throughout the time but the incident served as a reminder that my health status was not guaranteed to prevail. It also was a strong persuasion for finding a position offering substantial health coverage. This is not easy to find in most museums.
Into the Heartland
1991 arrived, I updated my resume then began a near-religious search. One of the positions I applied for was with the State of Wyoming Museum System, the other with a Presidential Museum. Needless to say benefits with either are extraordinarily good. June brought wonderful relief and a good laugh when I was offered the position at the Ford Presidential Museum in Grand Rapids, Michigan after being refused by the State of Wyoming for lacking a big government background. Employment began the first week of August. I became a little unnerved when told the position required a level-one security check. Big Brother is watching and I wondered just how much they would find out. Somehow, I slipped through the noose, went on my way with good pay and excellent health benefits.
The Albany Medical Center referred to three facilities in Grand Rapids associated with caring for AIDS patients: Heartside, the AIDS Resource Center, and the McAuley Clinic. Initially, I was surprised with the number. I had never been to Michigan but understood the political demographics of the state's west side to be rather conservative. The selection of McAuley was an easy choice after obtaining descriptive information. Heartside, a small facility located in a depressed downtown area opened in the 1970s to focus on care of homeless and poverty-stricken people usually fighting alcohol and drug abuse problems. The AIDS Resource Center started around 1987 and primarily focused on prevention, a food pantry, transportation, and a buddy program. I later discovered a fourth element regarding AIDS care. In 1987, GRACE (Grand Rapids Area Center for Ecumenism), a Council of Churches, launched the AIDS Pastoral Care Network believing AIDS care should include spiritual support.
My first appointment at McAuley presented a small group of affable and professional workers in an upbeat atmosphere. Previous medical records were requested. Albany Medical Center responded within a month while the Orange County Department of Health took two years. Each client was assigned a case manager and doctor. Mia, my case manager, asked a broad range of medical and personal questions after determining I had clothes, wasn't going to starve, and had a means of transportation. "Do you have friends in the area that know?" and "Why haven't you told your family?" Right from the start I knew the experience with McAuley would prove to be different.
Creation of the McAuley Clinic was sparked by the observant eye of Dr. David Baumgarten at Heartside Service. In 1988, Dr. Baumgarten began donating his services through the outreach programs of St. Mary's Hospital. He recognized that people showing signs of HIV infection were increasing disproportionately in comparison to those suffering with expected illnesses associated with substance abuse and homelessness. Shortly after he initiated HIV testing, the doctor's concern grew because people who were not substance abusers or in low economic brackets began entering Heartside. Dr. Baumgarten, with the assistance of other doctors from St. Mary's Hospital, secured a Smokeless Tobacco grant in 1990 to open a clinic in the McAuley building for HIV-affected persons.
The two-story McAuley building sits on a corner amidst private homes and apartments. Facilities on the bottom floor offered dental services while the McAuley clinic shared the second floor with another clinic serving (non-HIV-infected) pregnant women. The staff suspected a significant number of persons were avoiding the clinic for fear of being recognized. Thus, they began to offer outreach services in the form of testing at other locations. Admittedly, I held apprehension for some time until deciding the majority of people weren't gawking out their windows. But identifiable transformations in my attitude didn't begin taking place until 1994.
Changes in my health arose in May of that year. AZT was no longer effective and Hivid (ddC) and Videx (ddI) as substitutes were rejected due to allergic reactions. A regimen of antibiotics began as there was nothing else at the time. T-cell counts fluctuated between 200 and 300. My virologist said I could be placed in the AIDS category, although I was not sick. Both of us knew additional monies came with the category yet he respected my emotional position. In late November he said, early the following year I may be able to join a test of a drug called Epivir (3TC). I may not have been sick yet, but my picture was now framed and hiding in the shadows was no longer a viable or even preferred option.
The older I get, the less I believe in "coincidence." Christmas and New Year's were spent with my family in California. Revealing my health secret caused the expected tears and trembling knees, yet they stood by me. I returned to Michigan in January and by February 7 was hospitalized with pneumocystis and graduation to AIDS status. Administration of Epivir began in March and was tolerated. When my co-workers found out, they proved themselves to be an extraordinary supportive team of friends. I continued to work for another two years before needing to retire in April 1997. One of the two last exhibits I installed was, Messages: An Exhibit on AIDS by Mary Fisher. Ironically, this exhibit was in the schedule long before my status surfaced yet came to play a defining role. The exhibit offered me the splendid opportunity to meet Ms. Fisher. Our conversations ignited the tenacity to address the issue of AIDS and its role within my life. I stopped condemning myself, realizing each HIV/AIDS-afflicted person is in the same boat fighting the same battle. With this self-revelation came awareness of the public's lack of knowledge and misunderstanding. The year 1997 brought not only changes in me, but launched constructive modifications to AIDS care in west Michigan.
In May, referral was given to me by the associate director of the Ford Museum to the American Red Cross of West Michigan. They were seeking a designer for a historical exhibit to open in the Grand Rapids Public Museum. This partnership lead to the Associate Director of Health and Community Services at the Red Cross asking if I would speak to a training group working in the AIDS community. My presentation and interaction with the group motivated future requested participation and later introduction to Herb Seamons, coordinator of the AIDS Pastoral Care Network. He was in the training group, liked my presentation and hoped I would be interested in helping with the Network's blossoming education program.
These contacts eventually culminated in an invitation to what evolved into a very important fall meeting hosted by the state. Its mission was to gather informed PWAs, focus on important issues, define problems concerning west Michigan AIDS facilities, and then suggest solutions. The meeting's organization was well structured and issues were categorized then addressed. But frustrations mounted when similar issue complaints were vocalized regarding the different facilities. That is for example, complaints concerning minimal and irregular attention given to women with HIV/AIDS or the breakdown of patient referrals, all complaints occurring at each of the targeted facilities. Researching these facilities, attending various small meetings, and lots of people contact left me to conclude that efforts and money were being wasted.
During a break, I spoke with a few people about the recurrence of like grievances and we quickly surmised the problem. The meeting resumed and focused on solutions. Band-Aid-type remedies triggered intervening. Our premise was that fundamental problems exist because the facilities are in competition for funding monies and ultimately duplicate services. Regardless of their nonprofit status, they need to define their roles and coordinate with each other in a way that promotes working together to the advantage of the patient. The meeting concluded on a good note, and results went to the Michigan capital city of Lansing while PWAs sat tight.
1998 inaugurated the working basis for coordinating efforts and responsibilities between the facilities. Heartside remained open to care for low-income persons and substance abusers. The facility conducts AIDS testing then refers clients to McAuley. The AIDS Resource Center closed their doors, many of their services assumed by the AIDS Pastoral Care Network, which is now referred to as the AIDS Care Network. Religious implication was dropped for fear of scaring clients away. The McAuley clinic rendered all other services and substantially increased its capacity after moving in May 1998 to the third floor of a new three-story building adjacent to St. Mary's Hospital. Learning about the infrastructure of McAuley made it apparent that a substantial portion of its success can be credited to Cindy Arno. Cindy assumed the director's position in early 1997. Her previous experience in the federal government proved to be a valuable tool for knowing where and how to obtain funding. Cindy left this past spring in semi-retirement while two other staff members have departed for further education and reassignments but each was replaced by Fall. A recent luncheon discussion with Herb confirmed my impression that coordination between facilities continues and shows no large wrenches in its mechanics.
Changes in my attitude might not have developed if two components weren't present and subconsciously integrating with the other. First, the effect of my declining health followed by the actuality of AIDS combined with upbeat events, like the acceptance of my situation by family, friends and co-workers and the Mary Fisher exhibit, reinforced a new perspective. The second component is the holistic philosophy of the McAuley Clinic's team and their program that values mind, body, and spirit. The success of methods used to address the body can be physically measured in direct relation to the quality of medical care. The care of mind and spirit can administer modalities such as psychotropic intervention or one-on-one therapy, support groups, meditation, guided imagery, and prayer but cannot be quantitatively analyzed only qualitatively observed. An engine cannot work to its greatest capacity if one of its plugs is blown. Therefore I credit the skill and attitude of the McAuley staff as an additional and important influence on my mind and spirit.
To this day, I continue speaking to potential volunteers, student nurses, and social organizations with small groups scheduled and lead by Herb Seamons and/or a McAuley Nurse Case Manager. The fulfillment I derive is immeasurable.
Mark J. Streck resides in Grand Rapids, Michigan.
Back to the February 2001 Issue of Body Positive Magazine.
This article was provided by Body Positive. It is a part of the publication Body Positive.