I’m one of those maddass lone wolves who gets worse rather than better with conventional treatment. Don’t get me wrong. I really wanted it to work. I really wanted you to like me. I faithfully attended years of therapy. My deepest aspiration was to turn into a ‘treatment success’ and have my doctor pronounce me ‘well.’ I would have loved to be a poster child on some billboard portraying how easy it is for Zyprexa and psychiatry to save social insiders from their fears of dissident outlier humanity.
Just to prove how hard I wanted it to work, I went to graduate school in mental health. I stayed longer than I needed to. I studied well beyond the masters degree that permitted me to practice. I took all the coursework for a doctorate, including 6 extra semesters of counselor supervision.
I applied myself whole-heartedly. I engaged the literature and the latest science. I reflected deeply on my own emotions, biology, cognitions, family history. I worked to make sense of what was offered. I became my own subject for my own research, using my own life and my own experience.
Strange as it now seems, I also really wanted to be a professional. I wanted to be accepted by colleagues and academic peers. I wanted to embrace the ethics of a thoughtful, well-intended, genuinely helpful helping community. I longed to believe what everyone else said they did. I would have traded my eye teeth for the safety of a clear and common path to right and wrong.
To this end, I searched long and hard for guiding principles that could work for me and others. Rules we could all embrace. Rules that allowed us to be true and real and authentic about who we really are. Rules that would lead us all to the mutual respect, dignity and acceptance that all of us desire.
Above all else, I wanted to belong. I wanted to feel like I offered something. I wanted to feel heard, respected, valued when I spoke. I wanted to be someone who inspired invitations home for dinner.
None of that happened. At least, not from my engagements with conventional mental health.
The dissonance was shattering. The brochure was so confident, so clear. This was going to be a good journey. Well worth the effort. All I had to do was pay my dues and do the work. Presto! I would be functional, employable, a good neighbor, a responsible citizen. Somebody communities everywhere welcomed and invited to participate.
For a long time, I was bitter, cynical. I thought the mental health profession had betrayed me. After a while the dust settled. Eventually, I was able to get honest and face myself around what hadn’t worked.
As it turned out, I hadn’t actually followed the rules. If I had, probably, it would have worked for me, the same as it worked for everyone else.
It took a lot of courage to admit that. At first, I saw this as a problem, a personal failing.
Why didn’t I just follow the rules? Why didn’t I just do the same thing as everyone else? It seemed so simple. A no brainer. I wanted the same things everyone else had. So why didn’t I do the same things everyone else did to get them?
I even like the rules on some level. They were very nice in theory. They were clear cut and looked pretty on paper. They sounded exceedingly rational, exceedingly necessary. Responsibility to the profession. Protecting the interests of my organization. The greatest good for the greatest number, etc…
The problem was, faced with a real human being, and real human needs, the rules never quite seemed to fit. Don’t get me wrong. Professional ethics were always there in the back of my mind. I knew what I should do. I knew how to protect my organization, my community, my license, my job.
But then the reality of the moment always set in. Faced with this real human being. Who had these real human needs. Who was sitting here with me. In this actual moment. With this very real pain. In this very challenging world.
I could never get myself to put the rules first. There was always something that seemed more right to do as one human being to another.
When I finally figured that out about myself, I cried. I knew the value of my own conscience. I knew I had not sold my soul. I believed in something better. Five years later, it is still worth living on food stamps and getting quit notices from my landlord. The warm feeling that comes from holding out for real humanity… priceless.
It doesn’t mean, by the way, that we always ended up at odds with the profession. Many times, as conversations took their natural course and we followed the threads of connection between us, we ended up deciding to do the same thing that the professional codes would have specified in the end.
The problem was – that so far as getting to the right human place – the rules were more a hindrance than a help. They got in the way of listening. They got in the way of hearing. They got in the way of sharing, and exploring, and trying to understand and make meaning. They got in the way of offering and receiving, of becoming touched, moved, devastated and inspired. They got in the way of courage. They got in the way of outrage.
They got in the way of accepting the challenges that life was extending to both of us. They got in the way of our opportunity to bear witness and share the best we could offer as human beings. They got in the way of exploring uncharted territory on this human journey — places we could not go safely because neither of us could know until we took the next step where the path would lead. Because neither of us actually knew where we were going until we got there together and found out we were both okay.
So, why is that important? This shared humanity thing.
As it turns out, the rewards for professionals and clients radically diverge in the clinical world. For professionals, following the rules is a route to the top. Being good at rules means job security, collegial respect, promotions, better pay, better opportunities…. That’s the way it works in the world with letters after peoples’ names.
The reality for clients in the medical paradigm is exactly the opposite. Ironically, our ‘best’ clients end up with the worst prognoses. The ones who trust us the most, follow the rules faithfully, accept their ‘illness’ and never miss a dose of what the agency docs prescribe them.
Though few of us knew it at the time, modern neuroleptics have turned out to be the Pharma equivalent of “Super Size Me!” A daily dose is predictably disabling within 4-5 years. People lose brain tissue and gain weight. Neural pathways misfire, then lose function. Awareness, ambition, cognition, memory and ability to learn dim and then go out. Metabolic syndrome settles in. It’s only a matter of time before grimaced faces, smacking lips and thrusting tongues become the most defining active rhythm of someone’s deteriorating days.1
If clients stay on these medications — like we insist they must — nearly all will die this way. Their reward? Perhaps a small mercy depending on your point of view: Death will come, on average, 25 years before their time.2
Though few would dare to say it, the ‘Pharmaceutical Solution’ has a certain conservative appeal. Seroquel: One small step for AstraZeneca — a giant leap for social darwinism. At the very least, it thins the welfare roles in these budget conscious times.
Still, it’s a heck of a way for a profession that marches to the drum of ‘Do no harm’ to treat our most devoted clientele. We swore on our licenses that there was only one responsible course to take in their shoes. Yet, according to research, nearly 2/3 of those who reject or avoid our services will eventually find their way to employable, adequate full-term lives.3
On the other hand, I’ve been reasonably lucky so far on the client side of the equation. I had the same ‘serious and persistent mental illness’ as many others. But, the character qualities that made me a ‘bad’ professional also made me a ‘bad’ client. I had a lot of questions, plus a low tolerance for drifting very far from my inner truth. I could fake it if I had to. When the choice was mine, however, and something didn’t work, I struggled a bit with the contradictions and then looked for something else. In the meantime, I ‘forgot’ doses, forgot refills, forgot to come on time, forgot to return calls, and eventually forgot about treatment altogether.
What worked for me became clear with time. It wasn’t techniques or pills or coping tools. It’s not that I didn’t try those things, I did. It’s that, for me, they weren’t enough when my world was falling apart.
In times of real need, my deepest longing was never for professionals or caregivers or treatment or hospital comfort rooms. I don’t want to ‘be mindful’, smell a flower, hold an ice cube, do jumping jacks, or take a deep breath or count to ten. A lot of times, I don’t even what someone to fix it. Nine times out of ten, it is my problem, and I want the dignity to learn and find my own way through.
But in the meantime, I want human beings. Not just bodies, real engagement. The quality of presence that reflects the generosity of spirit of which human beings are really capable.
Going beyond generalities:
1. I want company on this human journey. I want to be with people who are willing to share their own humanity – their own struggles, failings and messiness. When I’m really alone with the ugly inside, pretty platitudes won’t do.
2. I want people who know what it’s like to be in my shoes. I need people who appreciate and acknowledge how distressing it is to have problems…
- Problems that I don’t know how to fix.
- Problems that no one else can fix on my timeline.
- Problems that no one can guarantee will ever get fixed.
3. I want people who care that I’m distressed. I want to know that my distress has been seen and matters to others.
4. I want reassurance that I still belong to the human community. I want people who continue to respect and believe in me, who see my potential and value my efforts. I want people for whom my current struggles are a character asset rather than a moral failing.
5. I want people who will commit to be with me in this. I want more than empty words. I want more than being left to my own devices. If you, as a trained, paid helper won’t respond to me in my time of need, who else on earth is going to be there for me?
You are my WRAP tools right now! In fact, you’re my entire Plan! My ‘coping skills’ are not enough. I can’t or won’t go there.
Coping means doing this on my own. I can’t do this on my own. That’s why I called on you. If I could bear being alone in this, I would be alone right now, not pouring my heart out to you.
6. I want to know that you have skin in this. I want to see the skin you’re putting in. I want to know that you’re as invested in me finding a solution as I am, possibly more for now.
In my reality, I’m doomed. I feel desperate and I’m falling apart. I have no idea how to fix this. The pain is unbearable. I can barely sit through this moment. How on earth will I make it through another day…?
You say there is hope and that I should hang on. You say it’s worth it, that you are sure of this, and that I should take you at your word.
No deal. I need more than words. If it’s such a sure thing, put your energy where your mouth is. Put down a deposit from your own account.
Walk with me through this. Not like a helper, but side by side. Like this is your journey too, not just mine. Like we’re two human beings, traveling together. Like both of us being happy depends on how we do this together.
7. I want comfort, human comfort. I want your arms around me, I want to be held. Not just with your caring tone of voice – but literally, and damn the ethical codes. If I don’t inspire that tenderness from you in my darkest hour, then when will I ever inspire it from anyone?
8. I need something to hang on to — some meaningful reassurance that things can get better.
Without some sign this is going to get better, how dare you ask me to keep going? Do you have any idea what I’m going through right now?
If it’s worth holding on, then prove it to me. Prove to me that hope is real. Prove to me that I have value. Prove to me that people have something to offer. Prove to me there’s a future worth sticking around for.
Do it now. Work a miracle. Suspend reality. Show me the Universe that cares.
Start with you. Give it your best shot. Show your humanity. Show your caring. Show you get what it’s like to be me.
Are you willing to be that vulnerable? Are you invested enough to try….?
Or is it still going to be just the same thing that hasn’t been working between us already: ‘This is a 50 minute hour, and now my time is up.’ ?????
9. In case it isn’t obvious, the last thing I need want or need to hear about in this state of mind is your professional obligations.
You say: Boundaries, self-disclosure, and mandatory reporting.
I see: Guns, bullets, blood, lots of it, all over the wall… Are we still in your office?
It’s not that I want to hurt you or me. It’s just that this is life and death. I’m already disconnected. I already feel like no one cares.
To my way of thinking, in this moment, if there was ever a time to do what is right by a human being, now would be that time. Yet, you can’t see past the rules to me.
What kind of message does that send? Rulebook vs. My life: Rulebook wins! How little am I worth to you? How is that not harmful?
10. To add insult to injury, why am I paying for this? You advertise yourself as an expert. You specialize in human distress. That’s why I came here looking for help.
Now, in my hour of greatest need, you are not here with me. Yes, physically, your body is present. But everything else is somewhere else. Your loyalties, your commitments are already spoken for. The rules and obligations are already set. They were not made with me in mind. They were not made with you in mind either. Neither of us was even there.
The rules protect your job, they protect your organization, and they protect the general public. But who is looking out for me? Certainly not you. Your last client got the same stock speech about his ‘best interest.’ A tape recording could do as well. What kind of ‘help’ is this?
Again, I’m not asking you for the world. I’m asking for basic humanity. I’m asking you to sit down, break bread and share a bit of what you have to offer in my hour of need. I’m asking for someone, somewhere, some time in my life when I’m really desperate, to put my needs first. I’m asking you for the same basic human consideration we try to teach to 5 year-olds.
If not now, when?
I’ve directed these pointers to professionals, but the needs expressed are not the property or purview of any profession. They are universal human needs. The offering and receiving, both, are the birthright of all of us. The qualities required, and the values that inform them, beat at the very heart of what it means to be human. No career path owns them. No allegiance comes before them. No job or rule or law or code gets to bump them in priority.4
Our first and foremost duty is our duty of humanity:
- To offer each other respect and dignity in the spirit of universal family.
- To embrace each other as equal peers – brothers, sisters, friends and neighbors – in this shared traverse of life, growth, loss, and death.
- To protect and nurture the rights and freedoms that no one can grow or be well without (and that we need protected all the more during the times when we’ve lost our way). 5
There is no greater human calling. There is nothing more helpful than this kind of help.
Suffice it to say, a ‘helping profession’ worthy of the name should be cultivating these qualities to the point of an art. It should be leading the way for the rest of us. Not just in emergency rooms, psych wards and mental health services, but also in schools, workplaces, neighborhoods, office buildings, hospitals, parks, stores, public places, homes, shelters, police stations, courts and jails.
Career helpers everywhere should demonstrate a sensitivity, grace and fortitude in the face of human suffering, confusion or disconnection that leaves the rest of us in breathless awe. For human beings in their darkest hours, the difference in trustworthiness, kinship and responsive understanding should be palpable and obvious to all concerned. That anyone seeking sanctuary, solace or human aid would be greeted by a banal, impersonal bureaucracy in such times as these should be unheard of. That immobilization, chemicals or brute force should be the first resort – or even a resort at all – should become unthinkable.
These, for me, are values for everybody. They are ethics for a full humanity – of lives lived richly, felt deeply, expressed meaningfully. They accept missteps and vulnerability as a given. They hold willingness, persistence and honest intentions in high esteem. They beg for experience to be appreciated, reflected upon and learned from among equals in courage and goodwill.
These are the standards, at the end of the day, that I want to go home to. Maybe you do too. Maybe you go out everyday to a workaday world where you have to compete and look over your shoulder. May be that’s how you earn your living.
I suspect, however, that few people actually live for the hunger games of a market economy. The primitive values of predator-prey are not something most of us tend to enjoy. It’s where we have to forage for dinner — not the surroundings we truly prefer.
The surroundings we live for are home and family. Though the meanings are necessarily personal, somewhere on this planet a warm welcome awaits. Consideration, kindness and optimism prevail. Friends and neighbors look out for each other. Opinions are voiced. Creative solutions are sought and found. The general feeling is: “I have your back. I trust you with my back. I believe in what we can do together. “ For many, there is nothing more precious, life changing or ‘helpful’ on earth.
This is not a world that most of us live in. Yet, this is a world that madness both evokes and inspires. In this world, we go beyond what is ‘realistic.’ We dream and live into a different way of human being. We set our sights on who we can be and determine to grow beyond what we currently are.
We unilaterally disarm. We invest without promise of return. We bank on hope and faith and courage. We purchase with our pooled goodwill the vision of a common trust that none of us could hold alone.
In this common trust, each life is a vote. Everyone is accountable. No one votes by proxy. Energy is invested. Lived experience is returned. Learnings are shared. Wisdom develops. Each choice, every moment, contributes to the world we want to live in with each other.
In creating this kind of common trust, the biggest obstacle is not that it’s madly impossible. It’s the temptation to settle for what’s already here. Dishonesty distorts the data for everyone. Every vote for getting by says, ‘This is all we are.’ The only way to find out what humanity is capable of is to vote honestly.
Mad people are already voting. We are doing this with our hearts and souls. We have dropped out, given up, run off, raged at, spoken truth after unpleasant truth to power. Many of us have given our lives. Our vote is for a better world. One that puts people first. One that is based on shared humanity. One that holds and respects every one of us as equal, rightful members in the community of human family.
Short of that, nothing is tolerable. Not because we’re impulsive, unmotivated or egocentric. But, because anything less is unworthy of human hearts and souls.
Mad people know this, live this, can’t ignore this. Every day there are voices that scream this, carve and burn this into human flesh. It’s obvious to us this world isn’t working. We’ve been waiting for everyone else to wake up.
But even us maddasses have to vote differently. It’s time to stop waiting. Merely protesting the world we have offers little more than settling for it. Mad or otherwise, we have to vote for what we want. Nobody needs a government grant to start offering respect and dignity. And we don’t need a public permit to start treating each other like human family. If we’re alive, we have a vote. Energy is invested. Lived experience is returned. Together we create the world we decide to live in.
What world is that? I can’t say what that is for you. But, for me, it’s what I want someone to offer when I’m at the end of my rope and my 50-minute hour is up.
1. Whitaker, R. (2010). Anatomy of an Epidemic 105-07, 111-17. New York: Random House
2. Parks, J., Svendsen, D., Singer, P. & Foti, M.E., Morbidity and Mortality in People with Serious Mental Illness, National Association of State Mental Health Program Directors, Medical Directors Council ( 2006)
3. Whitaker, R., pp. 108-11, 115-20
4. United Nations, The Universal Declaration of Human Rights (1948), http://www.un.org/en/documents/udhr/
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.