Sunday, May 22, 2011

Ted's Words

When I think of modest, but significant, contributions that one person can make to the life of others, I think of Ted. I found being a therapist in the gay community at the time of the AIDS epidemic one of the most significant challenges of my life. The majority of my clients were young men living with AIDS and at the time there was no cure. Most were not religious, though many described themselves as "spiritual". They offer to me striking illustrations of the ability to create meaning in life even in the difficult context of suffering periodic, predictable losses with the probability of only a few years left to live; almost certainly not enough time to accomplish the objectives for which they had hoped in terms of a career and living a normal life span in a loving relationship. Most of those who were my clients tended to have no hope of a happy afterlife and no belief that they would survive long enough to benefit from a cure for AIDS. They would have been insulted with inspirational discourses on the grand purposes and objectives of life or hollow encouragements that they just might survive long enough to be saved. 

I sat with them and listened as they explored and expressed the depths of their hopelessness; finding it very difficult not to rush to the rescue with comforting hopes, possibilities, reassurances; needing them as much for myself as for them. It was always a source of amazement how, if one simply stayed with those periods of despair, didn't interrupt them, they would be followed by a willingness to go on; to re-invest in life and what it still had to offer. It was as though accompanying them to the depth of despair was one part of a movement that, if allowed to go deeply enough, was almost invariably followed by another movement: a re-emergence, a recovery of spirit that gave the strength to go on; often more re-vitalized than before; even though physically more depleted. Staying there, quietly, with someone in the depths of despair and hopelessness gives them an experience that those depths can be contained, can be held, can be tolerated, until that next moment arrives. 

So many times a client would share with me that when he reached a certain point of deterioration, say when he began to lose his sight, he would end his life, but when that point came he would find the strength to continue; even want to continue. After an hour of talking with them, I tended to be exhausted; exhausted with the ups and downs of their physical conditions; downward always being the prevailing direction; exhausted with anticipatory grieving followed by recovery; exhasuted by the grieving that came with their final loss. Those were times of almost constant grieving for caregivers and for those who drew most of their friends from within the gay community. I want to describe accompanying one of those people living with AIDS who made a significant impact on my life and about whom I continue to think and feel with both sadness and admiration. 

Ted was living with AIDS when I first began my conversations with him, as was his partner, Alain.  Ted had just begun with some light symptoms, but Alain was quite advanced and already living on disability. Ted worked as a mail clerk in a large, legal firm; he was bright, though he had never gone beyond high school. His parents were immigrants from Hungary; he was tall and slim; had that black hair with bright, blue eyes that is a Hungarian "type"; was in his mid-thirties; both affable and handsome, but not to the point that he'd likely catch your attention if you passed him on the street. Ted was an only child from an unplanned pregnacy of a glamorous, strong and dramatic mother. His step-father was a friend of his biological father who had married his mother during her pregnancy; partly in order, Ted suspected, to rescue her from the social opprobrium that the time and culture would have imposed on an unwed mother.  The step-father, although he had never formally adopted Ted, was the  only father Ted had ever known. Ted described having been been raised mainly as the son of his mother and not as the child of both. 

Ted had always been very close to his mother, but often felt somewhat overwhelmed by her and disliked what he saw as her domination of his step-father, who was seemingly more conservative and "old world" than she was and from whom Ted had always felt distant. Ted felt his step-father would have loved him to have been a soccer player or at least to have shared his enthusiasm for soccer. He had come to understand that distance as a result of his step-father’s disappointment in him as a boy; a boy who hadn't been like other boys. Although his step-father clearly knew he was gay, his mother was quite open in talking about it, that fact had never once been mentioned or discussed between Ted and his step-father. Nevertheless, there seemed to be some basis for affection between them; his step-father had would occasionally drop in on Ted and Alain on his ritual, Sunday walks.

Aside from his mother, Ted had two loves in his life: Alain, whom he had met and lived with since their mid-twenties, and his dog, Leila, with whom he would go for long, solitary weekend walks on the mountain. Alain and he had contracted AIDS at about the same time, but Alain had more quickly become symptomatic and had recently been given only a few months to live. Ted was very focused on being there to care for Alain as his health deteriorated. He had three topics he wanted to talk about in our sessions: the first was dealing with issues surrounding the fact that he and his lover were living with AIDS, that he had become Alain's major caregiver and would soon be losing him; the second concerned sharing with his mother that he had AIDS and having her acknowledge him as an autonomous adult in a loving relationship before AIDS rendered him dependent;  the third was to work at securing a closer, respectful relationship with his step-father. A relationship which he wanted to  be independent of his own relationship with his mother; man to man; for the first time talking with his step-father about being gay and, also, disclosing that he and Alain had AIDS. 

Ted  kept a diary in his computer, which he named "Ted’s Words" and didn't want to be shared with anyone, except me, until after his death. Sometimes he would read to me from Ted’s Words and I was moved by the sensitivity and thoughtfulness of his writing and impressed with how well he wrote. We planned and rehearsed how to most sensitively approach his mother. Seeing the very protective relationship she had with Ted as a child and adolescent, we knew she would likely be devastated by the news that he had AIDS and he feared she would respond by overwhelming him with her care and concern; wanting to hold him closer than ever. He accomplished both elements of his objective regarding his mother in a deliberate, impressive way.  He disclosed that both he and Alain had AIDS and that Alain was quite ill.  As expected, she was overcome with grief and fear of losing her son; we gave her the time she needed to be able to express and move beyond those feelings and  to address the realities facing both of them. Ted was able to gently set boundaries that permitted her to express her concern and exercise her caring without violating his own need for independence and autonomy.  Much of her caring was expressed through cooking meals for Ted and Alain that his step-father would drop off at their home.

Ted's plan to establish a closer relationship with his step-father began with inviting him to go once a week to Joe's Steak House, his step-father's favourite restaurant; a meal which always included both men drinking several pints of beer.  Since his father wasn’t the sort to talk about feelings, Ted centred their conversations on work and their mutual relationships with Ted’s mother. Ted shared with him his desire to be seen as an autonomous adult by his mother and the difficulties she had accepting that.  His step-father understood that desire from his own relationship with her; acknowledging that her strong, demonstrative character made it difficult to accomplish. It emerged that he, himself, had always wanted a closer relationship with his step-son and felt he had been discouraged from being more involved in his life by his wife. He shared stories with Ted about his biological father; giving him an acquaintance of the man he had never known and about whom his mother had never spoken.

Their conversation led naturally to Ted feeling comfortable for the first time to talk with his step-father about being gay; as we had always expected, Ted's sexuality was not news to his step-father, nor was the fact that he and Alain were a couple. He was very accepting and very supportive of Ted's desire  for a more autonomous relationship with his mother. Of course, the most difficult task lay ahead: to disclose that both he and Alain were living with AIDS and that was the reason for Alain being on disability. His step-father’s response was incredibly impressive.  He got up from the table in the crowded restaurant and, crying, embraced Ted; a remarkable and impressive expression of love, especially for a man of his time and culture, toward a step-son with whom he’d always had a distant relationship. He felt sadness that he had to face losing his step-son at the same time as he had begun being closer to him. Subsequently, he dropped in every Sunday on Ted and Alain and  accompanied Ted on his walks with Leila.

Ted's third objective in coming to talk with me he never got to realize: to be there for Alain as his health continued to deteriorate toward what was at that point in time its inevitable end. Surprisingly, and quite rapidly, Ted began to develop serious symptoms of full-blown AIDS; he had a couple bouts of pneumonia; his balance began to falter; his eye sight began to worsen. Over the course of a few months he had declined to the point where he was much more fragile than Alain; finally being hospitalized with the expectation that he would survive only a few weeks longer.  It was Alain who was faced with looking after Ted to the limited extent that his own illness permitted. While Ted's mother and step-father became more involved in looking after him and Alain, that care always respected the boundaries Ted had requested; among other things, the step-father took responsibility for walking Leila. 

Working with people living with AIDS (somewhat of a euphemism, since they were nearly always people dying of AIDS), necessarily led to the realization that planning life more than two or three weeks into the future is a tenuous exercise. Ted's was just one of many situations in which I spoke with people setting long-term objectives and making life-changing decisions based on the expectation events would turn out in a way that emerged to be radically different; one client making a decision to leave his lover, so as not to burden him with looking after someone who was dying, only to end up being a survivor, still alive today; while the man he left, died not long after their separation. I don't think much of the injunction to live in the present, because having a future orientation is one of the ;distinguishing characteristics of being human; however, I do feel that the more removed from the present ones plans and anticipations become, the more exposed one becomes to disappointment and to losing touch with what is now; always the only reality.

The last time I saw Ted was in the hosptital.  When we were meeting in my office, we often did a visualization together that involved his taking a long walk on the mountain with Leila. It gave Ted an experience of peacefulness, comfort and safety and allowed me to insert some hopeful suggestions that his rational mind would probably have rejected.  From his hospital room at the Montreal General, you could see the mountain road along which they had walked. His abilities to communicate were severely limited, but he managed to ask me to lead him through that visualization. Afterwards, as he was drifting into sleep, he reached out and held my hand, while sharing with me that he very much wanted to go home and spend his last few days with Alain.  

Understandably, Ted's mother wanted him to go home to be with her. She felt she could give him the care he needed in his remaining days, while Alain was not physically capable of doing so; no doubt, she also found it very difficult to not be with him at that time in his life. I was asked by his doctor and hospital social worker to meet with Ted’s mother, step-father and Alain to decide whether to put him into palliative care at the hospital, send him to be with his mother or permit him to go home to Alain. Ted felt it would be too stressful to attend and gave me permission to share our conversations at the meeting. Alain was too sick to come the day of the meeting, but both communicated to the social worker that they wanted Ted to be discharged to their own home. It was the first time I met Ted's mother and step-father, who were much as he had described them: his mother a still-glamouraous women of a certain age, articulate and forceful; his step-father a rather shy, distinguished-looking and quiet man. 

At our very painful meeting I talked with Ted’s parents of the love and admiration he had for his mother and his happiness with the recent, close relationship with his step-father. I spoke of the importance he had placed on being seen by them as an autonomous adult, that wanting to go home to be with Alain was for him sign of his having made a life for himself and found love; far from being a rejection of them, it represented a strong desire to have them aknowledge and take comfort in the reality that he had grown up, come of age, found himself in the world.  His step-father firmly supported Ted’s decision and his mother, with sadness and reluctance, agreed. 

Ted was returned home the following day and support services to help Alain with his care were established.  His step-father had already decided to adopt Leila, so she remained with him.  That evening Ted and Alain managed to take a shower together, though they had great difficulty supporting each other; after they lay in bed and had a few drinks together; in the morning Ted had died in his sleep beside Alain. Alain reported to his friends how happy they were to be together that night; Alain, himself, died two weeks later.  Ted's memorial party took the form of a wake, attended by very many people, with photos of Ted and Alain and music from their collection. Many of us knew other people at the wake, but had no idea we all shared his friendship. Though the strongest emotion present was sadness, there was a sense of happiness in celebrating Ted's life.

At Ted's wake one of his friends asked if I might know the password for a document in his computer: a diary he told his friends he was keeping and wanted to be shared with them after his death.  Unfortunately, he had left the password with no one and they had been unable to decode it despite many attempts.  It had never occurred to either me or Ted that the password should be left with someone; it was never recovered. When I was thinking of writing this, I wondered if the password could have been some version of "Ted's Words", a title only I knew; at the time of the wake I didn't think of that possibility; so as far as I know, "Ted’s Words" have been heard only by me and only in part. It was a privilege to have heard those words and to have had so many conversations with him; it was a privilege to have shared in his life. 

After all of these years, his loss continues to move me and his life to have marked me. Ted is to me an illustration of an individual, who did nothing of world-historical importance, who you probably wouldn't have noticed had you passed him on the street; who gave meaning to his life through the accomplishment of rather "simple" objectives related to his closest relationships. In doing so he had a lasting impact on those who knew him; leaving us to know how wrong-headed, trivial and facile it would be to regard such a lived life as worthless or pointless. I suspect that those who are prone to make such judgments are led by the same need as religious believers: being only willing to accept as a meaning for life what would transcend the human dimension; a need that in my estimation blinds them to the reality of what is there before their eyes; leads them to be unwilling to acknowledge and to invest in any meaning; unable to appreciate the value and the significance that can be present in the simplest of lived lives.

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