Defining Recovery

Alice Keys, MD
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Yesterday, Dr. Daniel Fisher emailed and asked my thoughts with regard to “recovery”. Even before I walked away from prescription-pad-only psychiatric work, others asked me about this. Other treatment providers, designated patients and family members asked what I thought they could expect to happen next and what they should do to make things better. I told them that chemical interventions are not the only, or even the essential, tool for recovery. Adherents to mainstream pharmaceutical beliefs expressed distress over my lack of faith in tablets and capsules.

What recovery means is a central issue.

I’m happy to have been asked for my thoughts. I love opportunities to explore ideas. If recovery is what we want, we should know what it is. If we don’t know what direction to point our boats, how will we know which way to paddle? And there’s a lot of paddling to do. Thankfully, there are many of us to do this work, each in our own way.

Listen for the message inside this story: Yesterday I went body boarding in the ocean with my family. These waves were the best of the winter. They weren’t the biggest, but there was a lot of power in those low sleek waves. This winter there have been a lot of storms. The surf has been brown, thick with debris and crashing high. The power in those enormous waves dissipated itself by bashing every direction at once. They knocked us off our feet and didn’t go anywhere. The clean lines of yesterday’s smaller and more consolidated waves carried us fast and far.

It would be convenient to define and validate measurable, countable and researchable features of recovery, things we could study to obtain “proof” that alternative paths to reach this condition are scientifically valid. Those that control the purse strings demand words like “evidence based”. We could eventually enter the playing field of mainstream medicine with our research protocols and data, our charts and double-blinds. We could make them listen and believe, fight research with research. When in Rome, do as the Romans do.

But those designated as patients in our society are people, warm soft humans that come in an endless variety of selves that are built from differing gifts and life experiences. When asked how I define recovery, I must begin by saying that I know every single person on this planet is recovering from something. And they are doing it in their own unique ways.

Another story: There was once a woman whose baby was taken unexpectedly from her by death. In the depth of her enormous pain, she called out to her God to restore her beloved child to life. God answered like this: “If you can find one person who has not suffered such a loss, I will do as you ask.” So the woman walked from village to village with her dead child wrapped close in her arms. She questioned every person she met. But she could find no one without such a loss. Every person she asked told her of their own griefs. At last, she returned home and gave up her child to God.

All of us are recovering from something. All of us.

I’m not so good at research definitions and statistics. There are others who are. I failed my long-ago attempt to make it in the world of professional medical academics. I researched the use of group therapy in recovery from addictions. Back then, I didn’t realize that the money, and therefore academic success, was in the pills. When I wrote my discussion of the processes and effects of group therapy, I talked about the people and their improved happiness. I explored the lovely things that happen when a group of people sit together in a circle and talk and listen. People discover that they are more alike than different. They discover that, despite the infinite variety of life experiences and despite their differences, they share an essential commonality of human spirit. They all want to feel happier and suffer less. My article got published only after all this had been cut out. Just the facts, ma’am. My grant request to study more about powerful therapeutic group relationships was denied. I was shown the exit ramp from academics.

I don’t believe there is an endpoint for recovery. There’s no one-size-fits-most set of criteria which mean you’ve reached your full human potential. I am at heart a follower of processes rather than a goal collector, a “feeler” rather than a counter of beans. Recovery is a verb to me, not a noun. It’s a process, not a goal.

The belief that there’s a quantifiable and universal state called “recovery” sets a culturally defined finish line for those designated as patients. Being graded and judged by the life standards of others, gives me chills. My life works well for me. Others may judge it broken when compared to the current American paradigm. There are those who need help obtaining their basic needs of life: food, shelter, safety and loving relationships. There are those who can help. Where you swim in this pond varies over time.

I like this new label, “lived experiences”. This designation of those with lived experiences creates a special belonging group for those that have lived through personal encounters with the psychiatric system. The intention is for people who have similar experiences to be in a group and share unique understanding and support with one another. Listening and sharing, understanding and support are good things.

I also like the inclusive sound of these words. All of us carry our lived experiences with us. We all continue to grow and change, make new relationships with our perceptions and have changing recollections of our lived experiences. This path of growth and change is the essential meaning of the recovery process to me.

It’s easier for scientists to measure and calculate endpoints and outcomes. It’s more complicated to study the process of personal transformation. Recovery is a meandering path made of starts and stops, backs and forths and arounds and throughs. There are times that the next leap forward is preceeded by slipping back.

Here is my measure of the recovery process this morning:

Are you happier now and suffering less than you were before?

Thanks for enquiring, Dr. Fisher. I wouldn’t have written this without you. This will take all our fine minds, together.

Thanks to everyone for inquiring, reading, thinking and writing.

All the best.

Alice Keys MD

 

 

34 COMMENTS

  1. At the risk of being contrary I would just like to posit an alternative perspective.

    While I agree recovery is a process it is also a subsidiary concept . What is most important is having a meaningful life and having a meaningful life is also the most important part of recovery.

    While I agree from a personal perspective the recovery process can go on endlessly this perspective also hides risks. The first risk is that it makes recovery an impossible goal. One can never say one is truly fully recovered in that case. Exactly the position people labeled with schizophrenia have always found themselves in. The second risk is that by having “fuzzy” definitions of recovery, that service providers take the chance to define it themselves, usually what happens is they just re-badge what they are currently doing as recovery oriented.

    Ron Unger is very good on this topic.
    “I believe that recovery remains a useful concept, but also that it will only give us leverage to change the system if we give it a clear and powerful definition, and resist efforts to water down that definition.”

    http://recoveryfromschizophrenia.org/recovery-why-is-it-being-redefined-to-mean-doing-better-but-still-mentally-ill/

  2. I love your post, Alice. I love your way of writing and your thinking. I am relatively new to this site, and this makes me want to read more!

    That said, I see things in a different way. 🙂

    I don’t like to use the word recovery in terms of health. Some people don’t have the option to retain a prior state of health and/or well-being. Perhaps one day they will, but people living with chronic pain, HIV/AIDS and any number of other things, often can’t (at least yet!) return to a prior state of health. And some people have nowhere to go back to, with trauma, pain and trouble having presented early in life.

    So, unless recovery means something different than our current definition, it doesn’t work universally. And if it does mean something different? Then what does it mean? I keep hearing about recovery and the recovery model and recovery programs. But what constitutes recovery? And what is the recovery model? In some cases the use of the word is actually a reflection of shifts taking place and things moving in a more humane direction. But in some cases it is a matter of simply adopting new language while doing the same old thing.

    I think that recovery means different things to different people, and sometimes even to the same person, over time. I think that each person should decide what recovery means to them, and when they have achieved it. And while I understand your thinking, I think the idea that recovery is a lifelong process is an overwhelming and exhausting one. Additionally I think that if we are to create real, lasting, systems change, we need to be able to identify and include in every single contract, specific healing outcomes that are required, and then not stop there, but actually hold the system accountable. We need to require (and contract for) services that recognize, support and sustain healing.

    The system, very sadly is all too often driven by money, when it comes to the big picture. If we attach to the funds paid out, healing outcomes expected and then we actually require fidelity, quality and accountability, I think we can actually create change.

    Kathleen

  3. Alice,

    A lovely post – compassionate and accepting of how complex we and the world are. Paris Williams, in his book Rethinking Madness, formulates a definition of “recovery” that is compassionate, honors our humanity, and at the same time provides standards that can be used in research. At the same time I don’t think he would argue for a minute that those who don’t “meet” his standard of recovery are in any way “less than” or “sick” – just living and addressing their concerns in a different way.

    For me, “recovery” is not very useful. I assume each of us is inherently intelligent, loving, strong, courageous and possessed of energy and enthusiasm. Whatever, in our own minds, stands in the way of feeling, thinking and acting in ways consistent with that picture, is what we will be working on. As we change, progress or get pushed back, there are always new goals we can choose to work on, if we want to.

    For myself, the goal is to have a meaningful life. That can take many forms and is a far more profound and worthwhile goal than simply being “free from psychopathology.” Abraham Lincoln spent years being “depressed,” yet he apparently also got much satisfaction from life, worked tirelessly and made a difference to his fellow humans. Churchill took his country through WWII, yet he drank like a fish. I admire people like Martin Luther King, Eleanor Roosevelt and others who cared deeply about people. It is a disservice to anyone you propose to “help” not to have the attitude that they can have dreams, work for them and fulfill them.

    “Mental health” and “mental illness” are constructs imposed by others, for their own purposes, on us. Living like a real human is a far higher calling, and is a goal that is worthy of how good people actually are.

  4. Thanks Alice! I love the word recovery because it gives me hope that one day my son will be better. When we brought him to the hospital three years ago, the psychiatrist in the emergency told us he had a chemical imbalance in his brain and he would be fine when they medicated him. The next day they asked him to fill out medical disability forms. They told us that he would never be able to finish university or work because of this “disease” that they had diagnosed after seeing him for 15 minutes. When he got worse in the hospital they said he needed more drugs. That was three years ago. He is now off all meds and has been at the same job for over a year. It was Whitaker’s book that convinced me to let him find his own recovery while everyone around me was telling me to have him committed and force him to take his meds. Many thanks to Robert Whitaker and the people on this website for supporting me while my son “recovers”.

  5. What a great post Alice! Sometimes it’s easy for me to think that “recovery” has an end point.. what I’ve come to for myself is a statement that doesn’t use the R word: “As far as I’ve come, I will always have that far to go again!”

    It helps me recognize my growth as well as realize it’s ongoing and lets me frame different experiences through a variety of lenses. I can see how and where I’ve grown and developed new skills and ways of being and I can see where I may wish to “tweak” something. It’s more developmental and learning based than anything else.

    Thanks again for your clarity!

  6. Alice,

    I don’t use the term recovery because the institution where I work coopted the word. They put the word “recovery” in their new mission statement but continue to do the same old things they way that they’ve always done. For the staff where I work, “being in recovery” is taking the drugs as you were assigned and commanded to do.

    I don’t use the word for myself because of what you mentioned; “recovery implies a return to come prior self.” I’m a different person now from the one who went into the system. I’m a stronger person and a more understanding person than I was before. I don’t want to return to a prior self. I do see all of this, whatever we eventaully call it, as a “process.” I used to teach my students something that I called the Principle of Being. I told them to always refer to themselves with words ending in ing since humans are capable of being in process, of changing, of discovering new things. Life is a rushing, surging river rather than a stagnant pond. I like Pat Deegan’s definition of recovery. “The task is not to become normal. The task is to take up your journey of recovery and become who you are called to be.”

  7. Great post Alice.

    It certainly seems we are all now suggesting that “recovery” needs to be re-defined in quality of life terms, rather than quantified in commercial terms. A human being as an organic creature, rather than a cog in the machinery of an economic system?

    “If you can hold down a full-time job, your recovered,” a psychiatrist once told me, confessing that his job was basically to get me back to work as the measurable component of a normal life. Yet what does real recovery look like, from the inside-out?

    From my own journey and need to understand psychosis from the inside-out;

    “Bipolar Cycles & An Ongoing Process of Recovery?

    October 27th 2012: 9am, and I’ve arrived back in Sydney, fourteen hours after a very emotional farewell to my Thai partner of the past two and half years, and an abrupt end to my South East Asia sojourn.
    As I waited inline at immigration the anxious butter-fly’s in my stomach rose to higher flight, in respect for an increasingly imminent, family greeting.

    “Stay grounded, resist replaying the scenes from the same arrival two years ago,” I told myself. Considering how my oldest son James was waiting for me again, after agreeing to bail his father out of a self-imposed “fix,” and fly me back to Australia. “No money, no home, no resources of a material kind, how could my children, not see me as having hit rock bottom?” I wondered, and would I get the chance to explain? Life is paradoxical, I thought, as I walked into the arrivals area carrying 15 less kilo’s of luggage than I’d taken to Thailand almost three years before. Materially lighter, stripped of all possessions save for my precious laptop, six books and 20 kilo’s of clothes. Objectively speaking, should I deny, my life appears to be going backwards? “Your a sad looser!” I probably would have told myself a decade ago, yet I feel more comfortable in my own skin than at any previous time in my life, ready, willing and able, to face the undoubted challenges to come.

    I couldn’t help a scenario running through my head though, as I pictured a coffee table family reunion, and some of the words we might, but probably won’t, say to each other. “When you stop defending yourself against life, it tends to bring you the experiences you need to have,” I pictured myself saying.

    ‘Hi Dad,’ James said, as he came up behind me, instantly relieving my concern that no one was here to greet me. Cordial greetings ensued, as I sat with James and Mathew, my two oldest sons, and talked about life in general, the catch-up family gossip, sport and the ever inflationary cost of living. “Five hundred dollars a week! For a one bedroom apartment!” I exclaimed, after Matthew filled me in on his new location, and I reminisced about life in Thailand were you could live comfortably for more than a month, with five hundred Aussie dollars. We talked real normal, in our usual social ritual of family “triangulation,” the anxiety of an awkward situation relieved by speaking of neutral topics, unrelated to an obviously difficult, and emotional situation.

    ‘So what do you want to do?’ James asked.
    ‘Head for the homeless shelters,’ I replied, adding that a search online had suggested it wise to get there as early as possible, to ensure a bed for the night. I needed to keep the tone positive, remembering the pain of his email comment, “its impossible for you to stay with any member of the family.” Impossible?

    So here I am, back in Australia and on face value alone, I would seem to be following a classic manic-depressive journey towards my demise? How could these circumstances possibly be described as a recovery in progress, I’m sure your thinking? How could this situation be described as life bringing me an experience I need to have? It sounds stupid and makes no objective sense, pure wishful thinking, even a delusional fantasy perhaps?

    What does Recovery Look Like?

    One of the most popular phrases in mental health is, “everyone’s experience is different,” and hopefully an explanation of my own “different” journey towards recovery, may help to enlighten the reader, on just how this seemingly desperate situation, is an experience I need to have. As I’ve written many times here on this blog, birth trauma seems to be the root cause of my bipolar type 1 disorder, with fearful avoidance, a life-long behavioral pattern. Two weeks after my return to Australia, I write this post in the very midst of my life-long fear, “the social group.” And on face value alone, its a pretty scary group with which I now reside. Here, I can’t avoid, can’t rationalize any movement towards isolating myself, here I come face to face with implicit body memories of my father’s violence, on a daily basis. Not that anyone is violent towards me, yet deep within there is an unconscious sense of threat, this group of men tweak’s my nervous system.

    ‘So how do you feel at the moment, in terms of mania or depression?’ The psychiatrist asked me, towards the end of my first assessment session, six days after my arrival.

    ‘There are no signs of mania, although there are depressive feelings and some suicidal ideation, but nothing I haven’t dealt with before,’ I responded, after already giving details of the self-regulation routine I’d developed in Thailand, after educating myself in Stephen Porges “The Polyvagal Theory” and coming to understand his term “neuroception,” on a felt level of sensations within my body.

    ‘You certainly seem to be managing an emotionally stressful situation pretty well at the moment, and I’m happy to let you self-manage considering your long experience and the fact that help is so readily at hand here,’ he advised me as we arranged a weekly appointment, during my stay at the Talbot.

    ‘Looking on the glass half full side of life, I’m certainly handling this crisis better than I would have done ten years ago, when I would have been well and truly under the blankets and drowning in depression by now,’ I offered as a reflection on perspective.”

    http://www.bipolarbatesy.blogspot.com.au/2012/11/bipolar-cycles-ongoing-process-of.html

    How should we define recovery, in an age when our economic systems of normality are failing? What does quality of life look like? Is life really definable by the quantity of objects one acquires?

    As Uncle Mosses once told us “don’t worship false idols,” yet we still believe that “objects” are more precious than a heart-felt smile and the vitality affects of love and affection?

    In the metaphors of the movie Avatar, is “unobtainium” really about material objects, or the human spirit and the Cosmos within?

    What does recovery look like, on the inside?

    Best wishes for 2013 Alice.

    David Bates.

  8. Alice,

    I think we have run out of space for replies, so here is my guess about cost of Open Dialogue: First, it appears to work with people who don’t have much resource. As I understand it, the region in Northern Finland is not economically well off – a small city with a fair amount of poverty. Second, although they might cost a lot locally, and up front – they assign teams (e.g., psychiatrist, psychologist, nurse, social worker) to stick with each client until they are better, in or out of the hospital and for five years or more, if necessary. And they meat 10 – 12 times in the first two weeks of crisis, and thereafter as needed; so that costs too.

    BUT the overall savings should be enormous. They rarely use drugs, and when they do, it is not long term maintenance, so that’s a lot saved. And they rarely hospitalize – another huge savings. On top of that, the program is so user-friendly that instead of avoiding the “system” for years, families and clients contact the program on average within 3 months of onset of psychosis – which makes a huge difference in recovery time. In fact, where Open Dialogue was started (per the 2008 book) has gotten its catchment area so well served with early intervention (even before full psychosis) that they report new instances of psychosis have dropped dramatically, and the book claims they simply do not hospitalize anyone any more.

    If even close to true, these dynamics would save tons of money – few drugs, next to no hospitalizations and quick voluntary intervention without the “screening” scams advocated in the US. But: the US system is designed to spend money, not save it. PhARMA and organized psychiatry aren’t going to be put out of the drug business; hospitals won’t forego reimbursement for hospitalization. So local programs will have a hard sell getting bigger budgets, and PhARMA and the hospitals won’t stand for the lost income. The problem is political, not substantive. The best bet is for someone somewhere to duplicate Finland’s success and then embarrass the establishment into doing something.

  9. Dear Alice and respondents,

    Highley appreciate all the experiences and perspectives shared on RECOVERY. For approx. one year I have been a reader – living both in Germany and England. It takes a little courage to join in – not being a native Engish speaker. Peer support for healing and realizing oneself is what my prior mission is – thus related to recovery, exchange and growth. Am happy to listen, read and participate – here or at National Empowerment Center.

    Very kind wishes for you in 2013,
    Ute

  10. I don’t remember where I read it, but one peer run respite house can save a state up to $1 million a year supposedly. I wouldn’t bet my life on that figure but I’m pretty sure that’s what I read. If that’s true then we need to get cracking. The only problem in my state is finding the peers! People who would most likely make good peer workers drop out of sight once they leave the hospitals and never want to see the places again. They just disappear into thin air. I really don’t blame them, but it really makes things difficult.

  11. Alice,
    I am surprised that no one has mentioned that one can learn Open Dialogue at the Mill River Institute for Dialogic Practice in Haydenville, Massachusetts. Mary Olson (US), Jaakko Seikkula (Finland), and Markku Sutela (Finland) are the faculty. It has arrived in the US!
    Karina

  12. Also, I think of recovery as recovering from being DIAGNOSED, not recovering from an illness, disease, condition, or symptoms. I think of life-long personal growth that I think everyone is enmeshed in, consciously or not. I think about searching out the meaning in life, satisfaction with the whole process, contributing to the world, connecting with people, and maybe some happiness, but all in all, experiencing the life one chooses.