Health, Living, Dying, and “the H— Gang”
H— was a lively, determined, smart, feisty woman who died in January 2012. She was thirty-one and had been in RC since her teens.
H— had huge challenges to handle: cancer of the spine, a major operation, and changes to her body, such as not being able to feel or move the muscles in her legs. She had passionately close relationships with many people, including young adults she had come into RC with. After her operation, she asked me to lead a group of her closest RCers who were backing[1] her with her health struggle. We called ourselves “the H— Gang.”
Our original goal was to back H—’s thinking and discharge process so that she could be fully in charge of her recovery and live the life she wanted, and so that neither she, nor any of us, would be alone with the struggle. Later, as H—’s thinking changed, our goals changed to also embrace her having a good death. We learned some important things. Many of these were built on the brilliance of H—’s thinking through the twists and turns of her health struggle.
In the early days, we were confused about what we were aiming for. Did complete recovery mean full health? Did it mean H— getting back all of her physical functioning? Later we wondered whether aiming for a good death was a defeat or a triumph. We got through these dilemmas as a gang, with H—’s thinking at the centre.
TWO SIMPLE CONCEPTS
In RC we have two simple concepts that can help us avoid confusion about health, life, and death. The first is that painful, confusing feelings are almost always a restimulation of early hurts. The second is that if we feel “caught” between multiple identities or possible outcomes, it makes sense to aim for each one of them a hundred percent. For example, if we have mixed racial or class heritage, we fully claim each identity.
We can take this approach to acquired disability and to health, life, and death. When I was seriously ill with chronic fatigue syndrome, I discharged in turn from two perspectives. I discharged from the perspective of being a one-hundred-percent disabled person—loving myself just as I was, and being proud of my body and knowing it was my ally. I also discharged on getting one-hundred-percent well, which contradicted the hopelessness and despair stirred up by my being told I might never get well. In both cases, I tried to be rooted in delight with who I was, relaxed and connected to myself and others, and confident that I could overcome “mere distress.”
We can apply this one-hundred-percent approach to life and death. We can discharge from the position that we are going to die—recognize death as an inevitable (for now) part of life and aim for a good death, one in which we are powerful and connected. We can also one-hundred-percent decide to live, and fight for ourselves and discharge old hopelessness, despair, and defeat. We need the freedom to completely adopt each position.
HOW H— APPROACHED HER SITUATION
H— embarked on a plan of systematically tackling the terror, despair, hopelessness, and isolation she faced in relation to the following:
• Completely claiming the identity of being disabled
• Fully recovering from all of her physical impairments
• Completely recovering from cancer
• Reaching for complete connection with people while fully embracing death
She needed to be able to think and discharge about her possible death, with all of us staying relaxed and at ease with her, and have the freedom to do this on one day and the next day aim and fight for complete recovery. These were different “ways in” to discharging the old hurts that had caused the terror and despair. It was important not to put artificial limits on what she could achieve. She could live well or die well; she could live well as a disabled person or recover her full physical functioning.
We in the gang had to discharge our own confusing feelings of terror and despair that could get in the way of our being relaxed and determined company for her. The point was to be relaxed and connected—not to have “the answers.”
HOW THE H— GANG WORKED
The H— Gang met over a period of eighteen months. In the final period there were thirteen of us. Additional RCers did sessions, including phone time, with H—. We had an “H— Gang Day” every few months. In between we had face-to-face three-way sessions with H— (so that she could choose whether or not to be counsellor) along with two-way in-person and phone sessions with H— and with each other.
H— was clear about her love for each one of us. And she had chosen people for the gang whose love she could feel and use. She powerfully instructed us where to focus and told us if it didn’t work.
I led the gang, assisted by R—, a longtime close friend of H— who was also an RCer. I led the events and kept track of our best thinking on the counselling. R— led the communication among the gang. For example, she sent out medical updates. H— organized the sessions (we talked about using a Google calendar, but she decided she’d like to do it herself). Other members of the gang organized and took leadership at different times. For example, A— led the group that went to H—’s funeral.
The various identities in the group sometimes made it hard for us to feel that we belonged and could work where we needed to. We were working-class, middle-class, and owning-class people; young adults and older adults; Lesbian, Gay, Bisexual, and heterosexual people; Jews and Gentiles; women and men. Several members of the gang were close personal friends of H—, and others knew her through RC.
At gang events, we usually met together in the morning for discharge time, without H—. We also split into class-based groups, with different ones of us leading the working-class, middle-class, and owning-class groups. As J— said, “The places where it got hard among us were often class related. Getting to meet and discharge in class groups made for more safety. The whole day seemed to go better with this base.”
In the afternoon, H— would choose several of us to counsel her in turn, in thirty-minute sessions in front of the group.
Members of the gang also called meal tables at workshops for “people who love H—.”
We kept up-to-date and in contact between meetings by e-mailing to each other summaries of our sessions with H—. These summaries covered the main directions that had worked well in the sessions, and any new thinking, but none of the confidential material.
H—’S DIRECTIONS
H— systematically worked on early distress. She found the following directions most useful:
•Deciding to live every moment well until she died—whenever that was
•Noticing, and telling us, what she was facing
•Flipping things around, using the exchange of roles, saying she was going to make her counsellor feel what she was feeling
•Closing the door to choosing death, not looking at that attractive door
•Getting in close with her counsellors
•Noticing even the tiniest bits of touch
•Forgetting the words “right” and “wrong”
•“I’m safe. I haven’t been bad. I’m good. My body is good.”
•“I don’t have to do anything so that anyone likes me.”
H—’S DEATH
H— was more ready for her death than we were.
Ten days before she died, I sent out an e-mail to the gang: “I spoke to H— today. She probably has not got long to live. She is accepting, peaceful, and connected. She wants us. Her body is changing quite fast. She is losing feeling and movement in her hands and arms. She is living her life and noticing that she is alive, that she is good. I gave her a direction that she is a triumph. She cried, seeing herself as a triumph—and not because of doing any particular thing or being any particular way.”
In my final meeting with H— I rested with her, cheek to cheek, and felt her soft, warm skin next to mine. She died surrounded by her closest family.
We reached out to each other as a gang, cried together, and noticed each other’s rage, shock, numbness, and isolation. Some of us wondered if we could have been better prepared for her death. We were quickly thrown into decisions about attending the funeral and how to be thoughtful to her family. Could we be a resource for them? There were questions we had not really thought about as a gang.
Three of us communicated with H—’s mum and dad, and others with her sister and partner, about the funeral. We agreed to a few of us going, with A— leading the group. A— ensured that the RCers had time to discharge before and afterward and that we focused on having our attention out and being a resource to H—’s family and friends.
We had our own RC “Farewell to H—” a few weeks after her death. We discharged together and tried to pull together our learning from the H— Gang.
SOME FINAL THOUGHTS
I know that there are other gangs supporting RCers who are facing death and life-threatening health challenges. This will be an important area for RC over the next few years. I hope that some of our learning is helpful in the fight for a good life and death for our beloved RCers.
J— wrote to me after H—’s death, “People continually said, ‘She was so full of joy, so vivacious; she didn’t let her illness get her down.[2]’ That’s how they perceived her, because she was able to have her attention on the good things, having dumped the terror, and so on, in her counselling sessions—sometimes up to five a day. Hurray for RC, and hurray that H— used it, loved it, and adored her fellow RCers.”
As C— said, “It was as graceful as we could manage, given the tremendous restimulation we were all experiencing in those last months before H— died. H—’s flame won’t ever go out, because her family, friends, and we, her gang, will carry it with us wherever we go.”
Romilly Gregory,
and the gang of RCers
who supported H—
England
[1] “Backing” means supporting.
[2] “Get her down” means make her unhappy.