Unfortunately I did not have time to really give this the time it needs but people may find some of it intersting. I am writing a chapter for Pete’s book and this is my part so far. Warning not edited.. Andrea M. Schara
In June 1981 the C.D.C. reported an account of five young gay men who had an unusual cluster of infections. A growing number of gay men were dying, striking fear into many who did not know the cause, how the disease was spread or and what kind of treatment might be useful. Observing the fear and panic in society the author decided this would be an important issue to understand, as to panic around the fear of death in families and in society. The goal was to understand what was going on and learn how to be useful to those who were diagnosed with HIV.
By 1984 the author was volunteering at the Whitman Walker Clinical in Washington D.C where there were a number of support groups for those who had been diagnosed.[1] Asked to to co-lead a support group for HIV patients at the clinic, the author heard about how families relationships had been dwindled for years and noted that many people were unsure how to approach family members with the news. At that time there were no available treatments. An HIV diagnosis was thought to be an end of life sentence. There was obviously a need to consider how and when to tell family members of this serious change in health status. Using the ideas that had been laid out in Dr. Murray Bowen’s paper on “Family Reaction to Death,” combined with the author’s experience of early loss in her family, she offered free coaching sessions and biofeedback training to manage symptoms.
Observations and a Hypothesis as to the Functions of an Emotional Shock Wave
The author observed that those who were making an effort to talk more openly about the diagnosis with family members were encountering both positive results, closer connections to family, and negative results, some family members were becoming symptomatic almost in response to the news. Dr. Bowen had called this an emotional shock wave. Another interesting observation was that those willing to move towards having greater openness in family relationships were living longer than predicted. What was going on in these families?
The hypothesis the author began to develop was that the family unit has various mechanisms enabling the automatic management of anxiety, thereby promoting the welfare of the family as a whole.
This thesis has interesting implications not just for treatment of disease and symptoms but for understanding the family as a unit of selection and therefore implications for understanding group selection as part of evolutionary theory.
If the family is a unit that distributes anxiety through automatic mechanism to preserve the unit, then greater awareness of this automatic responsiveness would allow those who can see it to better manage the threat of loss and illness, without it spilling into other’s lives.
Considering the emotional fear of death and the physical symptoms involved any approach which would combine a cognitive understanding of mutigenerational family patterns along with biofeedback training to manage physical symptoms, was seen as addressing both the family dynamics and the physiology. The probability of escalating symptoms around the threat of death in a family could be tempered by such an approach.
By 1987, thirteen individuals had signed up for Family Systems coaching. More evidence was gathered noting the increasing numbers of symptoms in these families as the person who was diagnosed as HIV positive informed family members. The increasing symptoms in family members indicated the possibility that the threat of death in these families was generating an emotional shock wave in the families. Those who were diagnosed with HIV became aware of the increased anxiety in family members and began to alter the way they informed the family members. They would often tell family members that friends of theirs had told parents about great difficulties and challenges and as a result the parents had then fallen ill. They said they believed that their parents could manage difficulties and would not have such a reaction to unexpected news. Then the parents would often say so what is the news? Most parents, partners and friends seem to do better with forewarning.
The threat of death of a young family member, appeared to spread out the anxiety into various family members. This could, in a paradoxical way, alter a worried focus on the person in the family who had been diagnosed HIV. For example, if a mother was more anxious and preoccupied and fell and broke her leg, then she was less able to just focus on her son. The mother would have to look after her own health. In this way the focus on one, switched and became more of a focus on each person to look after self.
In addition, the person diagnosed HIV positive was often able to alter their functional position from “the sick one” to becoming more of a family leader or in some instances a caretaker for an ailing parent. The functional role that they had been assigned in the family (the gay son who left home) was altered. You could say that the family system was more cooperative and adaptive than when it was focused on one person being “the sick one.”
Among the people who were seen over a period of three months most individuals began to assume more personal responsibility for his/or he health and was more aware of the impact being open or closed in relating to family and friends.
There is always a spectrum of how people handle being told they will soon die unless a life-saving medication is discovered. The examples above were from the higher functioning individuals who were willing and able to work on family relationships and understand the long term benefits.
There were also those families that did not function as well. Under the stress and strain of being HIV positive people were more likely to deliver harsh message with some blame mixed into the message. Often the parents would respond negatively with equal or greater degrees of blame. They were often angry at their sons for being gay, bring disgrace to the family name, for being distant or cut off and they did not want the son to come back home.
In these cases, the son would often get angry, blame the parents again and increase the risk of more blame leading to an emotional cut off. Some of these individuals were in very intense relationships with others in the community, while a few were isolated and even cut off from those in the gay community. Those with the most extreme version of cut off had far worse symptoms and earlier deaths.
Could these findings of increasing symptoms in a family be found in a more general population? Were these findings in a few families statistically significant?
The Survey
In order to understand if increasing symptoms in the family unit was a finding relevant for a certain percentage of families, not just those where one person had been coached in Family Systems theory, a survey was conducted of twenty-six HIV Positive individuals.
This survey was developed with the help of Susan Wiegert, Ph.D. who could designed the questions into usable computer code. The questionnaire was developed to consider all the variables that might be involved in HIV-infected people living longer that their T. cell count would predict. At this time there were few drugs available to halt the progression of the disease. This twenty-two-page computer scored questionnaire had 353 questions considering various factors from the intensity or relative openness in relationships with family members, friends and the medical professionals. It included questions concerning diet, exercise, spirituality, and the ability to maintain jobs.
By the time this questionnaire was developed in 1992, the author had seen over 36 individuals 10 had died or 7 had dropped out of the project. The remaining nineteen individuals volunteered to be interviewed for the survey. To temper the bias that may have been created as many individuals had received family systems coaching, seven additional individuals were recruited from an AIDS support group in Fredericksburg, Virginia.[2]
Result: There were three statistically meaningful results:
- One could predict which individuals were in stage two (T cells under 400 with two years to live) by the number of symptoms reported in family members. In other words, if people reported symptoms in family members it was more likely that the individual was in the later stage of HIV infection knowns as AIDS.
- One could also predicted that it was highly possible that those from fragmented families (families where a parent had died before the HIV/AID’s patient was 20), had a greater probability of not experiencing as many symptoms as those people who came from an intact family.[3] There appears to be a systems wide adaptation to the threat of death in families who had experienced loss at an earlier time.
One can speculate that intact families, those with no experienced of an early death had greater fear reactions. Factually thee families tended to have more symptoms related to managing the fear of death. People in intact families developed greater numbers of symptoms when told that one of the younger family members was HIV Positive.
- Those who reported more positive and supportive family relationships did better. This finding does not need much explanation. The challenge is to go into more detail to see what exactly a supportive relationship looks like. Below Bowen described how death in the family can reveal a level of dependency that people were unaware of and that people do not connect symptoms with the loss of family member. This is more difficult for people to visualize how loss of more distant family members can have a long lasting impact on a family unit . Future researchers may find better ways to identify emotional fusion, over involvement and clarify degrees of dependency in relationships thereby offering better explanations of the emotional shock wave.
The Emotional Shock Wave as described by Murray Bowen:
The “Emotional Shock Wave” was first encountered in the author’s family research in the late 1950s. It was first noticed in the course of multigenerational family research with the discovery that a series of major life events occurred in multiple, separate members of the extended family in the time interval after the serious illness and death of a significant family member. At first, this appeared to be coincidence. Then it was discovered that some version of this phenomenon appeared in a sufficiently high percentage of all families, and a check for the “shock wave” is done routinely in all families.
A family unit is in functional equilibrium when it is calm and each member is functioning at reasonable efficiency for that period. The equilibrium of the unit is disturbed by either the addition of a new member or the loss of a member. The intensity of the emotional reaction is governed by the functioning level of emotional integration in the family at the time, or by the functional importance of the one who is added to the family or lost to the family.
The “Emotional Shock Wave” is a network of underground “aftershocks” of serious life events that can occur anywhere in the extended family system in the months or years following serious emotional events in a family. It occurs most often after the death or the threatened death of a significant family member, but it can occur following losses of other types. It is not directly related to the usual grief or mourning reactions of people close to the one who died. It operates on an underground network of emotional dependence of family members on each other. The emotional dependence is denied, the serious life events appear to be unrelated, the family attempts to camouflage any connectedness between the events, and there is a vigorous emotional denial reaction, when anyone attempts to relate the events to each other. It occurs most often in families with a significant degree of denied emotional “fusion” in which the families have been able to maintain a fair degree of asymptomatic emotional balance in the family system.[4]
Open Communication:
Those infected with HIV understood that they had a limited time to live and wanted to know what the best approach might be in order to communicating their diagnosis. People wanted a cook book. But there was not one book to say what each should do. There are general ideas, but mostly there was only the stories that people could tell and the questions that might be asked generating more stories and then more questions. A great deal of coaching time went into thinking through the best way for each person to tell others in the family as to whatever information they thought important to communicate. Then people spent time predicting the possible family reaction. People wanted to feel connected and supported. They often expressed that there was always family when no one else was there. They wanted to leave their money or other valuables to family members.
But the idea of being more open with people was a Pandora’s box filled with many different kinds of threats.
Even though on the one hand families do better when they have information which is intended to clarifying the health status of various family members, there is also the challenge: having to adapt to troubling news. Those who were more objective and neutral about families were often less reactive to family upsets. These people were better able to decide how to communicate in far more positive ways.
Managing anxiety must be done. Once some bad news arrives any of us seem to have only a small window of opportunity to prepare. When people are anxious they can easily slide into telling others what to do. One common example was the fear of others knowing about your diagnosis as to the negative scapegoating that went on with even innocent children like Ryan White.[5] It was common for family members or partners to tell the other: “Please do not tell anyone about your diagnosis, you will be shunned and so will we.” Other evidence of one person taking over another’s functioning cold be seen in how far people would go as to telling others how they should or are feeling. :You look thin, sad, hurt, confused and angry” would be some common ways of putting others into a small box. The person can deny that they do not feel this or that way but they have been in a sense pinned into the one down position by the comment. People who are aware of this kind of fusion can challenge the person. They can rise up and ask for example do you think you know more about me than I know about myself? What is is the evidence you used to arrive at such at such a silly judgment. This at least makes others aware that in the urge to be helpful or even empathetic they are simply judging others.
When people have been diagnosed with a life threatening illness they are vulnerable to the intrusive comments of others. When people make such comment about the way you seem this can be seen as an invasion of the others ego boundaries.
Once when the author went to visit someone in the hospital, this person said “See all the get well cards? Well, some of these people are a lot sicker than I am.” Those who have physical illness are more vulnerable to the heightened emotionality and to the feeling sorry for the other.
Another common communication problem was that the medical staff would often insist on a treatment for the patient that might not be necessary. The treatment is optional. If someone has a T cell count of 15 it may not be the best to do a liver biopsy of the patient to see if they have liver cancer. One of the people I saw early knew this but despite objections from his partner, he went along with the Doctors recommendation and died in surgery.
The coach was able to communicate that the surgery when one is very ill may be a way to choose death and that was his choice, no matter what the partner wanted, it was his decision as to how to lead his life. The partner nodded his head and noted that giving people that kind of freedom was the most difficult thing he had done.
These are a few of the kinds of interactions that were most challenging but by keeping an eye on the functional of various behaviors and understanding the limits to intervention the threat of death and loss was decreased and began to be seen as just one more thing that had to be dealt with in order to adapt to what could not be changed.
A great deal of the coaching time was spent looking at ways of communicating and staying in the “I” position and given the other as much freedom to be his or her self as possible. With some practice one can be more self-defined. People can be more clear as to this is what I will or will not do, you are free to do anything that you think is best for you.
Here is another interesting example. Mr. G had drawn up a very detailed funeral service and had told his mother: “I want you to so x, y and z.”. The mother had a strong reaction to this and said in no uncertain terms: “I will not do as you want at your funeral. If you should die before me I will refuse to go to your funeral and if I have my way, I will gladly die before you.”
People can argue as to the rightness or wrongness of her decision but she was clear as to her own path and did not ask or demand that others agree with her. Her son was able to listen to her and to apologized for putting pressure on her to act or be a certain way. Instead he was able to say that he loved his mother very much and it helped him to think about her being at his funeral and if it did not help her then that was something he would learn to respect.
Questions were:
Who do I tell first?
Should I tell my father so he can be of some use to my mother?
Should I tell my sister as she lives with my mother?
Would it be better to write a letter to my whole family?
Should I just take my mother out for lunch and tell her in a public place so she will not break down?
People would go over the advantages and disadvantages of each choice until they were ready to begin the conversation. The first step seemed the hardest. Once people told family members there was often a reaction to the news. Therefor the coach learned that it was useful if people were prepared for upset in others.
By practicing the possible ways these conversations would go the HIV positive person seemed to gain more courage. Seeing death as a natural and unavoidable part of life, using direct language and being able to discuss issues like the kind of funeral their will or any wishes was also useful. A few people even asked family or partners to help them if they decide to end their life. All of this preparation made talking to family members not as scary and opened doors to talk about many other subjects.
Despite all the preparations there were family reactions and symptoms in family members. Despite this some of the HIV people would continue to relate to family members as though it were normal to talk about their illness or the symptoms in family members such as broken legs, a cancer diagnosis, pneumonia, etc.
Clearly family members were shocked that a younger member of the family would die before their parents and it took more time to reorganize their expectation of how life would go. The family members are not usually aware of the deep emotional dependency as for the most part it is hidden when children move away from home to become adults. But if the threat of losing someone come suddenly then many people can be thrown into a state of high anxiety.
Elevated anxiety can then lead to accidents, increasing stress responses and the triggering of dormant symptoms. In these symptomatic families there was clearly a shift in how anxiety was being expressed.
In the cases where people were doing better the person with the HIV positive diagnosis was able to offer support and care for others, rather than being cut off from family members. Finally, the HIV infected individuals were living longer than would be predicted by their T. cell count.
The clinical hypothesis: The family is an emotional unit that distributes anxiety among its members automatically, without thought or intention. Those who were able to have more open contact with family members became more neutral about the family. They began to see “family behavior” as an automatic way of organizing, not family members intentionally cutting off or being distant. In addition, these HIV infected people had begun to accept and live with the facts of being HIV positive, whereas family members were worried or in a state of denial and were often “other focused”, critical or distant in relationship to each other.
The assumption was that a history of multigenerational symptoms of cut off from family members would lead to increasing vulnerabilities and sensitivities in individual family members. If one could see the family as an impersonal organization, simply trying to enable the unit itself to survive, then it becomes easier for any motivated and self-defined individual to step outside the automatic and reactive way of relating to others. The increasing symptoms in other family members may suggest that the family was handling the anxiety around a threat to one of its members as well as it could.
Some amount of anxiety had been bound up in either the distance or the negative focus on individual family members. Over time, as people participated more freely in the relationship system, the anxiety was handled by people talking about the issues rather than being vulnerable to increasing symptoms.
The clinical research: The research subjects were from the support group at the Whitman Walker Clinic or referred by a friend who knew of the research on the family as a system and the use of biofeedback to bolster the immune system. Each person was asked to draw three- generation family diagrams. Over time the research subjects saw that there had been a great deal of distance and multigenerational cut off in their family of origin. Such automatic responses to threat may have made people more vulnerable in all relationships. Several people wanted to reengage with family members, believing there might be some benefit such as greater support and perhaps even enhancing one’s immune system.
In a general overview of the group one could see how individuals some were more self-focused and trying to deal with the reality of the situation while others remained angry.
The fact that one’s death was just over the horizon seems to have provided a more global focus for many of these men. Some wanted to do something to improve the life of others that might also make their suffering more bearable. A few even wanted to figure out how to talk to people in the family about their diagnosis and make things better for their family if possible. Other members expressed anger and frustration with the government and the drug companies and the prejudice of people towards them as well as the difficulties of relating well to family and friends. Many of the men focused on what to do about the slow responses to the crisis and intense prejudice and homophobia of the times. Those with a more global outlook seemed to show greater flexibility in altering their behavior in relationships with both family and friends, whereas the people who were just angry often focused on changing society and not as much on changing self.
The Immune system: For those recently diagnosed their job was simply to try to understand what they were up against and how the immune system might be repaired or how long they had to live. Most had been infected an average of 7 years before symptoms appeared. Once the blood test was available more people were diagnosed at earlier stages. The progression of the disease was tracked by measuring the concentration in the blood of CD4 and T lymphocytes. After T cells dropped below 400, or stage two when people were normally thought of as having AIDS due to the increase in immune system vulnerabilities and symptoms, the average person had about two years to live. The course of the disease was marked by significant immune impairment. When people made an effort to reengage with family members often the T cell count would rise and the white blood cell count would remain steady or rise.
The Social Process: The emotional process in society has many of the same characteristics found in the family, a negative focus on the vulnerable. As society becomes more aware of this tendency, various groups work to alter the laws so that eventually minorities, with newly secured legal rights, seem to do better in society.
Initially there was considerable fear and panic about how people were getting sick. There was no real evidence of how the virus was passed from one individual to another. There was no drug treatment available. People who were diagnosed were facing about 18 months of life after their T cells dropped below 300. Keep in mind that the first AIDS cases were only reported in the United States in June 1981.[6]
A very public example of this process was described in the life of Rock Hudson. Initially he hid his condition, which was easier to do when he was HIV Positive. However once the HIV became AIDS he could no longer hide his symptoms. His life was consumed by trying to find medical help. Only as he was reaching the end of his life did he use his celebrity status to enhance the lives of countless others. People were shocked to discover his sexual orientation. He was the first celebrity to be diagnosed with HIV-AIDS and to talk publicly about it. Rock Hudson’s death lead to an energetic public response headed by his friend and co-star Elizabeth Taylor. Their organization led the charge for better treatments and recognition of those infected with HIV.
Research on Drugs for the AIDS virus and Dr. Candace Pert: Dr. Pert was a presenter at the GFC several times and became a friend of this author. In 1986 she found out I was working with HIV positive people. She told me that she was working on a drug that would block the T Cell receptors and slow down or stop the virus. The drug mimicked a natural occurring peptide knows as VIP hormone found in the gut. We speculated that those patients with more “guts” could be producing more of this hormone. “Neuropeptides and their receptors thus join the brain, glands, and immune system in a network of communication between brain and body, probably representing the biochemical substrate of emotion”. Her AIDS drug Peptide T was featured in the Oscar winning 2013 film Dallas Buyers Club.
The Role of the Coach: The coach has a different position with clients than a conventional therapist. In family systems theory the “coach” is encouraged to remain on the outside of the emotional process and to understand problems as a function of the multigenerational family system. A coach listens and asks questions about what people are dealing with and what their goals and hopes are. In addition, the coach keeps an eye on the anxiety around various topics, making an effort to take the anxiety down using humor or stories. The coach can tell stories about self or other families and does not take sides in disputes but enables people to take responsibility for their part in issues. Since this was a pilot program for research purposes, the sessions were free. People were free to donate funds to the program if they preferred. One person who had seen me for free for five years, left money in his will for me to continue the research.
There was a wide variation in how people engaged with family members and how they handled the upset with regard to their HIV-AIDS diagnosis and they either did or did not reengage with their families. Despite the effort to be aware and to communicate carefully, many times family members would have strong reactions to the family member’s HIV diagnosis and often these family members too would develop symptoms themselves. Frequently this allowed the HIV person to actively care for and console family members from whom they had been extremely distant.
The surprising result was that the person with HIV who had at least to some extent repaired family relationships and even been of help to aging parents or more open with siblings, tended to live longer than was predicted by his T cell count. Those who had been and were being negatively focused on began to understand how to get into better relationship with important family members and friends in order to alter their status in both the family and within society.
Often an HIV diagnosis, challenged the indivdiual to be more open and to communicate with other family members. Over time this changes in the relationships system altered the families automatic worry-focus. Instead of focusing on what was wrong with the persona who had AIDS or was HIV positive, other family members began to report an increase in physical symptoms. These symptoms in others forced family members to focus on self and to relate to each other more openly.
Clinical Cases
By 1985 I had several people who were interested in volunteering for this pilot program at Whitman Walker. The first couple that expressed an interest were a couple, Mr. C and Mr. G. In the eyes of society both of these men were relatively high functioning people. Most folks infected with HIV were very aware of being looked down upon and feared but they were each respected in their work and friendship groups but very distant from people in the family of origin. Mr. C and Mr. G feared their own deaths and suffering from the various symptoms. Mr. G had already been hospitalized once and had a low T. Cell count and obvious signs of a sarcoma on his nose. Both of these men were financially successful. Mr. G had been written up in Time magazine for his work. He described many of his early relationships as designed to release tension and it was not until Mr. G was 25 that he met Mr. C and wanted to have a more long-term relationship. They decided to live as a couple but not to put demands on one another for a monogamous relationship. Mr. G was the more outspoken person in the relationship and in the group. Once Mr. G decided to take advantage of the research offer, others were more willing to do so too.
Mr. G. was a 40 years old white male, who had been in a fourteen-year open relationship with Mr. C. First, we will consider the Mr. G. who had AIDS the longest and then we will move onto look at Mr. G’s family. Mr. C was diagnosed in 1987 with pneumonia and Kaposi’s sarcoma. His T. Cell count of 17 indicated he could die at any time. Instead he was able to live a year and half longer than predicted. His partner, Mr. C, had a T cell count in the 500’s giving him two years to live and yet he lived four years beyond that dying in 1993. Their goals: to learn how to be more open in relationships, to use biofeedback as a way to monitor and manage anxiety, and to understand three generations of family patterns.
Both Mr. G’s parents were alive and in their sixties. His mother had been diagnosed with a lung cancer and she was in remission His maternal side of the family had early deaths involving considerable numbers of physical, social, and psychological symptoms. There was a cut off from the maternal grandfather, as when he died in 1985 no one went to his funeral. Mr. G’s had a far greater challenge relating to his mother and her side of the family than to his father’s side. He had been named after his paternal grandfather who died in 1971. His relationships with his father and his paternal uncle and aunt were relatively positive. The main challenge for Mr. G. was to tell his family he had AIDS and to be present at his sister’s upcoming wedding. It was hard to predict the upset in the family following telling his family members, but shortly after telling his mother he had AIDS her cancer returned. Over time as their relationships improved Mr. G was able to be more open telling her he was not afraid to die, that he was planning his funeral and had picked out some things for her to read at his funeral. She said that if he died before she did, she would refuse to go to his funeral, do readings, or sing nice songs. Mr. G realized the position he had put her in and said that he respected her wishes, and could see how he been controlling her instead of suggesting options. When his Mr. G.’s father asked his son if he should leave his Church to join his mother’s, he was able to tell his father that he hoped he would follow his beliefs, rather than changing to make his mother feel better. Another effort was to tell his sister’s children seventeen and sixteen that he had AIDS despite his sister’s objections. Mr. G’s overall effort was to be thoughtful and less automatic as in his early family programming — to please or run away from others.
The degree to which people can let others be who they are, while at the same time being more sure of where they stand, and what they will and will not do, is one indicator of health. AIDS patients who understood the importance of relationships within their nuclear family and extended families experienced greater freedom and less fear. Eventually this would translate to clarify treatment plans with the medical people. As he got weaker Mr. G. did better in his family than he did defining himself to the medical staff. When hospitalized for pneumonia he was persuaded to do a liver biopsy and this procedure, which was not necessary, ended his life. His partner Mr. C continued to participate in the program until he died in 1993.
[1] 1983 Whitman-Walker launches an AIDS Education Fund to provide information, counseling and direct services to people with AIDS. https://www.whitman-walker.org/our-mission-values/our-history/
[2] http://www.fahass.org/
[3] Please contact author for copy of questionnaire and results from survey.
[4] Bowen, Murray; Bowen, Murray (1993-12-01). Family Therapy in Clinical Practice (pp. 325-326). Jason Aronson, New York, NY
[5] http://www.pbs.org/newshour/updates/remembering-ryan-white-the-teen-who-fought-against-the-stigma-of-aids/
[6] The Washington Post, May 27th 1988: Headline – “Number of AIDS Patients Rose 270% in Two Years”. There were ten thousand cases in 1984 and 37,000 in 1986. Between 1984-1986 70,000 people were diagnosed with AIDS. 95% were men, 79% were between the ages of 25 and 44.