La Luna Journal La Luna Journal
In the Summer of 2014 my wife lay dying, and yet she did not die. For months she lay on the very edge of death, unable to eat food or drink water. One day her sister, Margarita and her niece, Mia, came to visit. They brought with them a gift of some necklaces. Each necklace was a thin chain with a small metal mouse. We knew right away what this mouse was all about. We used to make our living together as a touring family theater company, and one of the shows we would work with was a Native American story called the Story of Jumping Mouse. Jumping Mouse goes on a quest, where she finds herself more than once on the edge of death. On her journey, she is told to always "keep hope alive". We had done a production of this story years ago at Mia's elementary school, with Mia playing Jumping Mouse (and we got Margarita out on stage as well). Now, Margarita and Mia were bringing hope to my wife who lay on the edge of death – hope held in the symbol of a tiny metal mouse held by a thin and slender chain. There was one necklace for each of us (one for myself and one for my wife and one for my son) to help each of us to always remember to keep hope alive.
This hope was well founded. My wife began eating and came back to life a couple of months later, in September. In October, I let many of our family and friends know for the first time about our son's struggles with hearing voices. When Margarita learned of this, she asked my wife and I the following question about our son:
Is there hope?
This question looms large for any family who has a loved one diagnosed as schizophrenic. There has been a difference in viewpoints on this question between us and the system assigned to help us. This difference was made plain at a meeting we had with our son's doctor and team in the psych ward where my wife asked the following question: "What is your model for success?" Their blank stares and uncomfortable silence gave us our answer. I have since referred to my wife's period of starvation as an unconscious "hunger strike", and I believe that at its core the strike was about this subject: hope and hopelessness.
Is there hope? When I was at a high point of frustration with the system on this point, I reached out to a psychologist we are now working with named Rebecca Hatton, who told me to watch an online video that would shed light on this question. It is a video of a TED talk given by Eleanor Longden, a psychologist in England who hears voices. In the talk, Eleanor shares this:
I'd been told by my psychiatrist, "Eleanor, you'd be better off with cancer, because cancer is easier to cure than schizophrenia."
At the time we watched the video, our son had just been told something similar. He asked the worker who had been assigned to him whether he would be on forced medications for life, and the answer she gave to him was this: "There is no cure for what you have".
This type of answer to the question of hope is fleshed out further in a book called "Far From the Tree - Parents, Children and the Search for Identity". The author of this book, Andrew Solomon, is a gifted writer, researcher and interviewer who tried valiantly to find hope in the world of schizophrenia, to no avail. This is how he ends the chapter on schizophrenia:
The rich culture of Deafness, the LPA-centered empowerment of dwarfism, the extreme sweetness of many Down syndrome children, the self actualization of the autism rights brigade – none of this is really present in the world of schizophrenia, Mad Pride notwithstanding. We may hesitate to cure some problematic illnesses because they are also rich identities, but schizophrenia cries out almost unconditionally for treatment. The remarkable parents I met during this research would be better off, as would their children, if schizophrenia didn't exist. To me, their suffering seemed unending, and singularly fruitless.
The answer here is clear, from Eleanor Longden's doctor, our son's case worker and from an author who looked in depth at the landscape of schizophrenia in the USA in 2012. Is there hope?
Their answer is no. There is no hope to keep alive.
Of course, everyone recognizes that coping exists. Surviving on medications. Hanging on like grim death until death comes. Solomon writes about a family like ours that continues to care for their son against all odds. This is what he says of the parents:
Their progress has been to stop anticipating progress; that is its own kind of peace.
And so, when it comes to hope: don't. Hope hurts. Take what solace you can in the cold certainty of inevitable doom. That is one answer. We have another.
My wife and I have a model for success that comes from watching our son's acute onset of psychosis and schizophrenia in 2011 and his remarkable recovery in 2012. We saw his recovery. We were there. We remember. Witnessing and remembering this recovery gives us a vision of hope for the future that is grounded in memory. Yes, there is hope. We envision and we hope. We remember and we hope. This is but one example, yet it is an example that matters a great deal to us, as it is our family, our son, our memories and our future.
I came across another example of hope this year when I attended a workshop by Ron Coleman, who came from his home in Scotland to Kalamazoo this past Spring. Coleman is a colleague of both Eleanor Longden and our psychologist, Rebecca Hatton. Ron Coleman is an embodiment of hope, as a vital and thriving person who still hears voices and who helps others who hear voices learn to navigate through the world. Those of us at the workshop got to see him in action, telling stories, presenting research and conducting sessions with people who hear voices. It was masterful. It was a picture of hope, demonstrated and made manifest.
These are just three examples (our son, Eleanor Longden, Ron Coleman). Does this small sample of anectdotal evidence really constitute hope? Yes it does, yet there is more. In October of this year (2015), news broke of a major study in the US which has important parallels with the work done by Rebecca, Eleanor and Ron. The NPR report on this study began this way: "A major new study may change the way the U.S. treats schizophrenia". The study's co-author said "for some people, the goal of full recovery is a possibility..... And the important thing is that having the support of a team and the support of family can make such a large difference". Eleanor Longden echoes this sentiment in her talk, where she says this about her family and team: "together, they forged a blend of courage, creativity, integrity, and an unshakeable belief that my shattered self could become healed and whole."
The following quotes are from a New York Times article on this major US study:
A program intended to keep dosages of antipsychotic medication as low as possible and emphasize one-on-one talk therapy and family support made greater strides in recovery over the first two years of treatment than patients who got the usual drug-focused care.
Dr. Kenneth Duckworth, medical director for the National Alliance on Mental Illness, an advocacy group, called the findings "a game-changer for the field" in the way it combines multiple, individualized therapies, suited to the stage of the psychosis.
The more holistic approach that the study tested is based in part on programs in Australia, Scandinavia and elsewhere that have improved patients' lives in those countries for decades.
Dr. Mary E. Olson, an assistant professor of psychiatry at the University of Massachusetts Medical School, who has worked to promote approaches to psychosis that are less reliant on drugs, said the combined treatment had a lot in common with Open Dialogue, a Finnish program developed in the 1980s. "These are zeitgeist ideas, and I think it's thrilling that this trial got such good results," Dr. Olson said.
Olsen is a mentor to Rebecca Hatton, who is currently working with our family using principals and ideas that come out of Open Dialogue. One of these ideas is that the voices that people hear in their minds are doing something known as "meaning making". Eleanor Longden, in her talk, speaks about how her support team helped her orient differently to her voices:
they helped me to understand something which I'd always suspected: that my voices were a meaningful response to traumatic life events, particularly childhood events, and as such were not my enemies but a source of insight into solvable emotional problems.
Longden was a contributor to a major report on psychosis and schizophrenia that came out of the British Psychological Society in 2014. In several places, this report speaks directly to the question that my wife's sister posed: Is there hope? Here is some of what this report had to say on this subject:
Many people who hear voices or see visions – perhaps two out of three – are not troubled by them and do not seek help from mental health services. Even for those whose experiences are distressing and lead to contact with services, the outlook is much better than is commonly assumed
People who continue to have severe and distressing experiences may lead happy and successful lives in all other respects, such as work and relationships. Many people find that the hardest part of recovery is overcoming prejudice, discrimination, lowered expectations and the pressure to subscribe to a 'sick role'.
A recent review concluded that 'the idea that schizophrenia is a progressive brain disease is not supported by the weight of longitudinal neuroimaging and cognitive studies... (This idea) has contributed to undue pessimism among mental health professionals.'
These studies and examples from overseas show that hope for people who hear voices has been easier to find in England, Scotland, Australia, Finland and other countries than it has been in the United States. My brother in law, Ray (who has been participating in the Dialogue process with our family and Rebecca) refers to this as the NIH factor (Not Invented Here), a phrase that he is familiar with from his experience as an IT specialist in the corporate world. This phrase has helped my wife and I to understand the provincial attitude of many people we have encountered in the American mental health system, where practices are not considered "evidence based" if the evidence comes from the the other side of an ocean. It has taken a long time for hope to cross the pond to reach the USA, but it seems like it may be happening now.
This research and reporting presents a strong contrast to the grim and singularly fruitless picture of schizophrenia painted by Andrew Solomon in his book Far From the Tree that I cited above. His book was published in 2012. To be fair to Solomon, he had no access to these reports at the time. Eleanor Longden's talk was broadcast a year later, in 2013. The British Psychological Society Study came out in 2014 and the major US study in 2015. We can now look back at Solomon's bleak assessment as realistic given the state of knowledge in the mainstream mental health world in the USA, circa 2012. Now, this hopelessness can be seen in 2015 as an obsolete despair; a gloom that cannot be supported in the light of our current research and knowledge.
We hope. There is chaos, and yet we hope. We treasure the moments of lucidity and gratitude, when our son tells us "mother, thank you for giving me shelter my whole life" or "dad, thank you for your fathership". There is danger, and yet we hope. Last year, my wife lay dying. I brought her water, and she sipped. I brought her milk, and she sipped. Every hour. Hour after hour. Simple ingredients. Water. Milk. Sips. Hope. Each hour, we worked. Myself, my son and my wife. We worked. In her hospital room I painted a poster for my wife of some advice our son gave to her when he was just three years old: "Don't waste your mind. Your mind wants to be happy". We worked to keep hope alive. Today, we work with our son. We don't always know what to do, but we do and try and experiment each and every hour. Different ideas. Different ingredients. The ingredient that is always included and that matters the most is hope. We forge an answer to the question that my wife's sister posed to us. Is there hope?
Yes. Yes, Margarita, there is hope.
Of course, the reasons to say no, or to say "Yes, but" are legion. Yes, BUT what if the schizophrenia is acute? Our son's onset of schizophrenia in 2011 was as acute as any we have seen or heard of. Eleanor Longden's account includes an episode so acute that she held a power drill to her own head. Yes, BUT these studies emphasize early intervention with proven therapies. We are well passed the first onset of these experiences with our son. Yet Eleanor Longden and Ron Coleman both went through many years of ineffective treatments before finding what worked for them, and they are thriving. Yes, BUT everyone knows that voices are bad and must be fought and stopped and suppressed. Eleanor and Ron both still hear voices and are doing well. This is not a shock to my wife, who has known for decades what the British Psychological Study states in its Executive Summary: "In some cultures, experiences such as hearing voices are highly valued." Yes BUT we have to live in our culture in the USA circa 2015. In reality, we are living in a pivotal time of change and new discoveries when it comes to schizophrenia in the US, evidenced by the studies cited above. Yes BUT all of this may not fit what you have always seen, have always heard or have always been told about psychosis, schizophrenia and hearing voices. Learning about the data is one thing, but it may seem abstract. If seeing is believing, what can I show you to prove that there is hope?
I wish I could take you back in time to see our son's acute condition in 2011 and his strong recovery in 2012 when he began envisioning a future career, performed with our company, getting his drivers license and earning his blackbelt in karate. I cannot. I wish that I could take you to see the Ron Coleman workshop that I attended this past Spring, and see his energy, his humor and his skill. I cannot. I wish I could show you my wife eating an omelet (the first solid food she had in months) the same week we were given the go ahead to begin our work with Rebecca in earnest. I cannot. What I can do is to show you Eleanor Longden's TED talk called "The Voices in My Head". A vision of hope: