Keeping Our Eyes on the Prize

(Adapted from his opening remarks from the Hennepin NAMI meeting with Rep. Mindy Greiling and Sen. Don Betzold) …In my […]

(Adapted from his opening remarks from the Hennepin NAMI meeting with Rep. Mindy Greiling and Sen. Don Betzold)

…In my own 30 struggle with this disease, in the hospitals, halfway houses and day treatment programs, I’ve seen and experienced a gamut of types of treatment, quality of care and changes in attitudes from society, my family and friends and especially myself.

In medieval times, prisoners were shown instruments of torture to compel them to talk, including the rack, the Iron Maiden and the thumbscrews. I have lived in a time when patients were show instruments of torture: isolation rooms, straitjackets, Electro convulsive Therapy. These were meant to compel them not to talk, not to emote. These One Flew Over the Cuckoo’s Nest times and places truly took the “fun” out of dysfunctional.

I have lived in a time when a 15 year old boy could be given a dozen electroshock treatments, not as part of any healing or therapy, but as punishment for “not conforming to the therapeutic community.” This is the kind of thing that could give an impressionable young man like myself a distorted view of both the medical profession and Northern States Power. Life in this place was so unbearable that to survive I slipped away into a dream world, of which the Doc told me, “Pete, our attempt here must be to welcome reality, to embrace reality.” To this I replied, “Why should I do anything for reality? It never done nothin’ for me.” I must tell you, ever since those days I have been a little bit confused about the godly nature of the human creature.

I have lived in a time when many of my own family and friends, my church and school and hometown, pitied me, was ashamed of me, abandoned me, and even the medical profession seemed unable to forgive me for having a disease that baffled and subsequently shamed them. By dumb luck, I survived and avoided—by the skin of my teeth—the street, the penitentiary and the graveyard. I learned the most terrible cost of this disease: how it destroys your dreams and makes you feel damaged and worthless, without meaning or purpose. I lived so long in pain, that I actually forgot what it felt like to feel good or happy. Like Jim Morrison sang, “I’ve been down so long that it looks like up to me.” And when you feel that judgment from society, when you have no credibility or voice, then any power or freedom you have becomes very dear to you, which is why “commitment” was so frightening to me. I wanted to hang onto whatever freedom I had.

But when I went for years without effective treatment, I learned another terrible lesson: Freedom to suffer is no freedom. I learned that the disease was the real enemy; it was the illness that imprisoned my mind and soul more than any hospital ever could. And when I watched people close to me suffer their entire lives without treatment, I learned another terrible lesson: This disease is not just a disease of individuals but of families. The agonies I endured watching my loved ones deteriorate in front of my eyes was much more painful than my own decline.

I have twice experienced commitment or intervention. Once when I was 15, that almost killed me, and once in ’92 that saved my life and my soul. And I am happy to say that I’ve lived to see advancements in medical treatment, with refinements in medicine and breakthroughs in mapping and understanding the brain. These treatments are so effective that almost everyone can be helped in some way with at least part of their suffering alleviated. I have lived to see increased sophistication in the cognitive/talk therapies being offered. I have lived to see a change in attitudes and sensitivities among the mental health professionals, and my former adversaries have become my closest supports, and allies, and I’m proud to say, my friends. I have lived to see the day when treatment works.

I have lived to see the changes in my family and friends, and they are no longer ashamed of me and enough years have gone by that in my old home town, I am no longer considered “crazy,” but “colorful!”

Every day we still face stigma, both from society and our own “inner tyrants” and the injustices in insurance coverage. Inequities that stop us from getting the medical attention we desperately need or, as one mental health professional put it, “They come to us in flames, and we treat them for sunburn.” But the Star Tribune had as their headline recently the words “Consumers Win HMO Ruling.” A victory, small but solid, and as more and more people come forward, come “out of the closet,” breaking the stigma and silence about this disease, attitudes and laws will change. History will remember how it changed.

The focus must be to get help at the community level, with commitment always being the last resort. Webster’s Dictionary has a number of definitions for “commit” and “commitment.” In the past, these words usually meant an “official order to put someone in custody in a prison or mental hospital.” There is another definition of “commitment” and that is “to make a promise, a pledge, a vow” to do something. Too often in the past, those with this illness have experienced the first, but not the second. I don’t know what’s going to happen with this issue, either with Mindy and Don’s bill or in the future. I pray that when someone is ill and is suffering, that we promise to determine fairly, with wisdom and with love, whether they are able or not to make good, rational decisions about their own medical needs. I pray that if they are determined to be too ill to help themselves, and they must be given medical attention (even against their will), that we pledge not to do it out of fear, anger, frustration, or for any selfish personal reason. That we instead do it only out of love and a desire to end their terrible suffering. I pray that if we give ourselves the awesome and terrible power of taking away someone else’s liberty, that we vow to spare no expense or personal hardship to ensure that they gets the best medical treatment available. I pray that we will give them the love and respect they deserve; that we will do everything in our power to help them return to and rebuild their lives; to assist them in the long process of recovery that is necessary to truly heal from this most terrible of diseases. I pray that we always commit ourselves to concentrate on “care” rather than “commitment.”

During the Civil Rights movement, the phrase the activists used again and again was “keep your eyes on the prize.” Among activists, there were disagreements on certain issues, difference of opinion on tactics and strategy, personality clashes and the frustrations of banging on doors of racism and stigma so large and entrenched that it seemed that they would never budge. Despite this, the activists still had the wisdom to keep focused on their ultimate goal of equality, and to keep their eyes on the prize. Our cause is not unlike theirs, and this is we must also do to succeed.

The issue of commitment—of forcing treatment on someone—is one of the toughest, murkiest and most potentially polarizing issues that the mental health community will face. It is a complex and uncomfortable subject dealing with civil liberties, equality in health care, resources, education, and our old enemy of stigma, both from society at large, but also from our own “inner tyrants.” Beliefs and emotions are strong, and dissension is a reality. But we all agree that—at the core of this issue—the focus of our cause is healing and recovery from suffering for those with the disease and their families. I am worried about the possibility of this issue breaking apart the bridges of co-operation and trust for which we all have been working so hard. But I also know the kindness and depth of character of the people I work with around this cause. That gives me confidence that—even though we may disagree on particulars—we will still stay united and committed to the larger picture. We will “keep our eyes on the prize” of finding the cures to eliminate brain disorders completely, of educating the world and ourselves to eliminate the shame and stigma that transcends this disease into a different hell, and of offering hope and comfort for those suffering until those dreamsmare realities.

Join us! 2023 Virtual Legislative Forum. December 16th, 2022. MN Council on Disability