America's Hospice Hero: 12 Questions About Trauma, Recovery, and Gratitude
America's Hospice Hero: 12 Questions About Trauma, Recovery, and Gratitude
A Certified Hospice Palliative Nurse and Grief Recovery Counselor, Jay Westbrook was awarded the 2004 Nurse of the Year Nursing Excellence Award for Innovation and Creativity in End-Of-Life Nursing by Nurse Week. A trailblazer in the field of pain management, he started the first palliative care hospice program in a California State Hospital. By transforming the wounds of his childhood trauma and his later addiction into a vehicle for compassion, Westbrook opened the door for end-of-life healing and dignity. In an interview with The Fix, he illuminates the blessings of survival and the gifts of long-term sobriety.
You had a traumatic childhood. What happened?
When I was five months old, my mother walked out the door and never came back. I think the idea of a baby was more fun than the reality: she wasn’t up for it so she left.
When I turned three, my father remarried, becoming very focused on his career. I was sent to live with friends of the family. At that family’s home, I was beaten and raped on a daily basis. I was locked in a pitch black closet when I wasn’t being raped. I ate in that closet, I slept there, I toileted there, lived there. I was dragged out once a day to be washed, beaten and raped by the father, the father’s father, and the father’s oldest son. That went on for over two and a half years.
I don’t know exactly what it was, but any child experiencing sexual abuse has something in their posture, their gait, their presentation, their facial expression that’s like a neon sign for other predators
I was almost 6 when I was pulled out of that situation by my parents to live with them in New York City. It was a long time ago and incest wasn’t talked about. My parents - my father and step-mother - never sought help for me. They never spoke about it and they didn’t cut off ties with that family. We would still go and visit them, but I wouldn’t be left overnight. I was broken and pretty crazy from that experience and definitely marked.
When I was seven, my parents bought an apartment in Bridgeport, Connecticut with the intention of moving up there. This sounds crazy today but for the next year, from seven to eight, I lived in that apartment alone. They visited on the weekends. All week long, at age seven, I woke up alone, I ate cereal for breakfast and went to school alone, I came back and made canned spaghetti or ravioli and ate dinner alone, then went to bed alone.
But I had been marked by the abuse. I don’t know exactly what it was, but any child experiencing sexual abuse has something in their posture, their gait, their presentation, their facial expression that’s like a neon sign for other predators. Predators can see it and they know, and that was my experience. I’d be walking down the street and men would just approach me and say, “Come with me!” There was no enticing; it was an order, and I had already learned that you do not get to say “No” and even if you do, it doesn’t mean anything so I would go with them. Throughout my childhood, there was so much sexual abuse, and that was just the way I lived.
How were you able to survive?
I don’t know how I survived. I know there was a lot of dissociation, or splitting - where I sort of left my body. I would be out of my body and not present when it was happening. There were lots of losses. A loss of any sense of safety or security, a loss of innocence, a loss of the ability to trust, a loss of having any sense of control over my environment, there was a loss of choice.
We moved a lot, and I went to 16 schools in 11 years. There was a lot of isolation. I didn’t connect or have friends. I spent a tremendous amount of time in fantasy, daydreaming and reading voraciously. That was my escape. Where I lived was in books and in fantasy.
When did your drug and alcohol use begin?
Not until I was sixteen. It was all hippy flower child stuff at first. A lot of pot, hash, wine, and mushrooms. Eventually, this evolved to include hard liquor, cocaine, and pills. I also internalized and sexualized almost any feeling. After such abuse, how do you express love or like, respect or attraction, interest or curiosity. After such abuse, you express it all in the same way and that is sexually. I was promiscuous, but it also was the time: sex, drugs and rock ‘n roll. If you’re not with the one you love, love the one you’re with. The legacy of the incest had made me more available to anyone and to anyone who wanted to use me.
Was that when you met Nancy, the woman who became your wife?
I was young, living in Los Angeles, but I had decided to go back east. People threw a going away party at a house in the Palisades. I met Nancy around midnight when a friend introduced us and told me to accompany her for a walk so she wouldn’t be alone. We crossed over PCH, came down in front of Gladstone’s restaurant, and walked the beach, just talking, for six hours. When the sun came up, we were in love and would never truly be apart again.
But later you ended up in prison. What happened?
I used drugs and alcohol because they numbed me, providing an escape from my trauma. But drugs made me stupid and led to bad decision making. Such decisions put me in front of a judge. Even though it was my first offense and I had no criminal record, he sentenced me to the penitentiary. While I thought of myself as a tough guy, a survivor from the streets of New York, I had no idea, no preparation for what prison would be like.
It took five hours before I was gang raped, and that happened almost every day throughout my incarceration. After eighteen months, the judge unexpectedly called me back to court and suspended the rest of my sentence. Nancy was waiting for me, but I was more broken than I had been before – physically, emotionally, spiritually.
I went back to the drugs and the alcohol. I was filled with self-pity, judgment, blame, self-righteousness, resentment, and cowardice; definitely not a vision for you. I commenced school and did very well. There was such low self-esteem, so much shame attached to what I had done and what had been done to me, I needed accomplishment to survive. I needed to work hard and have some sense I could make up for my past mistakes.
I earned a Master’s Degree in Gerontology and Counseling. I started to create a reputation of excellence in my chosen field, in healthcare, but remained miserable. I actually planned a suicide that would look like an accident so Nancy could collect on my insurance. On that day, I saw a television commercial about a 12-step hotline that I had laughed at before, but this time I burst out crying and called. 90 minutes later, I was in a 12-step meeting.
At that meeting, although I can’t remember much of what happened, I felt the breath of a God I did not believe in blowing on me with a gentleness that I did not deserve and had not earned. I do remember what was said after the meeting: “You don’t ever have to feel again the way you feel today. You don’t ever have to drink or use again for the rest of your life, one-day-at-a-time. We will love you until you learn to love yourself. Please keep coming back.”
That was language of the heart, and it was not what I was used to hearing and that began my journey. I am still in my first sobriety and, God willing, I’ll turn 26 this year.
Was Nancy sober then?
She was not. It’s funny because we come from such polar opposite backgrounds. I was an only child; she was a middle child. I was bottle fed; Nancy was breast fed. I grew up in chaos with incest and violence; she grew up in love, stability and support. I grew up in poverty; she grew up middle class. I grew up urban; she grew up in the middle of Kansas. I moved sixteen times with no lasting connections to anyone; she lived her entire life on one block and in one house, went to the same school with the same kids and maintained those relationships her entire life. I was abused; she was loved and supported. But we both ended up with the same disease of alcoholism and addiction, and the same solution – the 12 steps.
When I got sober, we were isolated. Most people had pulled away from us, either in anger or disgust. But Nancy was not interested. I asked sober friends, “But what do I do about her?” They said, “You tell her once that if she ever wants to go to a meeting, you’d be proud to take her and tell her she doesn’t need to be sober to go.” After seven weeks, she was tired of being left alone and she came to a meeting with me, though she kept drinking and using. After six more weeks, she stood up at the meeting and said, “My name is Nancy and I am an alcoholic.” and she stayed sober for the rest of her life.
You have gone on to become an award-winning clinician, focusing on end-of-life issues. How did this happen?
I was always drawn to end-of-life issues so I became a pain management specialist, then I made the leap into hospice care. There is so much suffering at the end of life. The suffering I’ve experienced prepared me to be with the dying and their families in a very conscious manner. Beyond the pain management and grief counseling, the experience of my past trauma became a vehicle for awakening compassion within me. I could be with the dying and remain completely present in the moment without trying to change it or fix anything. I treated the pain, but beyond that, it was about being able to co-journey and have people know that they weren’t alone.
I helped to awaken compassion in the families of the dying. I could sit and do the spiritual interventions that need intimacy, humor and directness. I was able to bear witness to the agony and the anger in a non-judgmental way. I could reveal enough of my story so they felt safe in revealing things to me that brought about healing. We are as sick as our secrets. They were carrying these secrets within and they had never told anybody: suddenly it became safe to open up.
That work led you to being honored as “Nurse of the Year” in 2004. What did that feel like?
I have won a lot of awards, and I don’t really like talking about that stuff. I think it’s just having been in the right place at the right time. The concept of pain management became a hot field, and I was there when that happened. If I had been doing the same work ten years later, I probably would have won no awards because so many people by then were doing what I did. The awards look good on a résumé, but it’s really about providing tools that guide people through the process of dying.
The goal is to allow families to be so much more complete in their relationships with the dying person so their grief is purer, not filled with the “would’ve, could’ve, should’ve and if only’s.” Families need to deliver the emotional statements like: I forgive you and I’m sorry and I love you and I don’t know if I ever said how much I appreciated the way you… or how proud I was when you… – those things get said and people can die more gently and more tenderly. Families can miss their loved one, but they don’t have to beat themselves up for never having told the person this or that.
You brought your work into the California prison system where you had been abused. How did that happen?
One day the phone rang and a guy asked me to do a five-hour “being with dying” training at the California State Prison hospice where the majority of the 70 volunteers were prisoners doing life without parole. He asked me if that mattered, and I immediately replied that, yes, it did.
I called my sponsor and asked how could I possibly walk into a prison where I would possibly see and recognize convicts who had gang raped me or not recognize them because there had been a knee on my neck with my face shoved into a grey blanket as a line of twenty-five guys waited for their turn. What should I do? And my sponsor told me: “I can’t tell you whether you should go or not, but my suggestion is that you walk through the doors that are open.”
I made the decision to go. That day, standing in front of that prison and feeling the fear, I chose to reach for courage and walk through that open door. I didn’t recognize anyone, and I got to be a role model of courage and service and helped to awaken in the prisoners as well as in me a level of compassion I did not think possible. I could have seen them all as a bunch of convict rapists, but I saw God’s kids who chose to be in that training so they could help their dying brothers.
You have been able to make peace with the past?
I have a loving God that is co-suffering and co-journeying, but does not intervene. I believe that God looked at me as a child while I was being raped repeatedly and wept at my suffering and then looked at my rapists and wept just at hard at their suffering, even harder because they had moved so far away from his Grace and from his love. That kind of God works for me.
I always remember that God doesn’t make junk; he made all of us and we are all God’s kids no matter what we have done. I needed to change the tone of my prayers from “Please, God!” as in please get me that job or the winning lottery numbers or that parking space to “Please God” as in behaving in a way that would please a loving God.
Nancy died 19 months ago. Can you tell us about that?
She was the love of my life; such a strong and beautiful woman. She died with pancreatic cancer, and lived only seven months from the time of diagnosis. I was blessed to be able to be with her during that entire period. She stayed ambulatory and functional until the day before she died.
She woke up that Tuesday morning, July 17, 2012, and I was right there next to her and was able to take her in my arms and tell her, “Sweetheart, I love you so much and I will miss you when you’re gone, but I will be okay and, if and when you are ready, you have my permission to let go.” About ninety seconds later she was gone. She died in my arms and in our home, and the ground went out from under me.
Even as the grief overwhelmed me, it was clear that Nancy was not at the bottom of the bottle and there was not enough booze in LA County to mask those feelings of grief. We were complete with each other when she died, but it is so hard. Still, a small price to pay for a lifetime love affair. I would never dishonor what we had together by going out and getting drunk, getting loaded or committing suicide. That’s simply not okay. I need to honor our love and her memory.
Any Closing Words?
I still sit in awe when I think of how blessed I am and how blessed I was to have the background that I would wish on nobody, but you couldn’t get me to give up – the trauma and the violence - because it became my vehicle for awakening compassion. How blessed I am to have the disease of alcoholism and addiction and to be born at a time when there are 12-step programs to treat these diseases. How blessed are we to have a disease where the treatment makes you healthier than you were before the disease ever happened. My life is nothing but blessings as I see it, and I am so grateful for that.
John Lavitt is a regular contributor to The Fix. He last wrote about the rise of Narcotic Anonymous in Iran.