I have Lou Gehrig’s Disease (ALS). It has no treatment, cure, known cause, or hope. Acceptance is the key to my serenity. good attitude, and great quality of life. I live one day at a time to the fullest, still write, and work with Corinna West, Wellness Wordworks and my faith community. I have wonderful friends and supporters, and I’m just fine.
For me, accepting this fate is choosing life, not giving up. Staying active, positive,and productive, not boo-hooing over it, is the key to my good attitude, which is the key to everything positive in my life.
I don’t understand why people say my attitude is remarkable. For me, it’s just common sense.
I also never understood why so many people who heard my mental health recovery story called me “courageous.” Then, I was rejecting the fate laid out for me by mental health professionals, and fighting successfully to create my own.
The docs said it was an impossible, grandiose, manic dream to make my living as a writer. I’d be a lot less angry and frustrated if I forgot that dream, got a part-time job driving a cab, a furnished room, took my meds, and accepted the person I really was.
A roomful of them started shouting at me, calling me arrogant and non-compliant, when I said, “If that’s such a good thing to do, why don’t you do it.
The Serenity to Accept Things I Cannot Change
As an amateur baseball historian, I’ve seen Gehrig’s farewell speech at Yankee Stadium in newsreels a million times. When everyone knew he was dying from a rare disease they’d never heard of and could not spell — amyotrophic lateral sclerosis (ALS, now commonly called “Lou Gehrig’s Disease”) — he told his admirers, “Today, I consider myself the luckiest man on the face of the earth.”
He is as well known today for stoically accepting what he called “a bad break” as for his incomparable play and baseball records, including 2,130 consecutive games without missing an inning. Nobody approached that record for 60 years.
Today, I consider myself lucky, like Lou Gehrig.
Amazing, since ALS had always been the most horrible death I could imagine. Your body slowly loses all function, including the ability to communicate. Then, your internal organs fail, and you die. The worst part is your mind stays alert the whole time and watches you waste away.
I swore I’d kill myself if I ever got ALS, not wait to die that way. What’s changed to make me feel so?
“God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”
— The Serenity Prayer
When Accepting Fate Was Bad
I also struggle with mood swings and post-traumatic feelings and behavior. Accepting fate, according to what psychiatry told me, would have ruined my life, but I never accepted it.
When I was recovering from trauma and severe mood swings, acceptance was a dirty word. The docs kept pressuring me to accept fate. The mood swings were an incurable chemical imbalance in my brain, the docs said. Accepting fate would make me less angry, the docs said.
What was wrong with accepting that fate was that it was not really fate. I could choose my own.
The doc said large doses of psych meds for life would control my extreme moods, and allow me to live almost normally — falling asleep in groups, smoking cigarettes outside the mental health center, washing dishes, sweeping floors, or driving a cab part-time. I was lucky to live in modern times, the docs said. Before meds, they would have locked me in a dungeon.
Accepting fate their way would have been giving up, not choosing life, so I pursued my own goal and never gave up. I chose life then, and I am today. Only now, I know what I’m going to die of — not when! — unless I get hit by a bus while I’m waiting.
The docs had no idea how important my goal was to me, or how much ability, persistence, faith, and time I would bring to the effort. Setbacks could not stop me. The docs could not see into my heart, but I could.
Years later, when David Hilton and I, with others, were helping to build the recovery and empowerment movement in New Hampshire, we were like pit bulls. Everything the mental health system did was the wrong thing, the wrong way, too slow, and self-interested. Acceptance was a dirty word on the system level, as it had been for me on the personal level.
Until a a few months ago, the only kind of acceptance I knew was accepting a rotten system, a furnished room, dead-end job, poverty, a medicated haze, and life without purpose in the “mental health ghetto.” Acceptance killed dreams, closed possibilities, and destroyed potential.
The Good Kind of Acceptance
On Jan. 3, 2013, I was diagnosed with ALS (Lou Gehrig’s Disease), a gradual, degenerative neuro-muscular breakdown with no treatment, known cause, hope, or cure. Most people live with it 5 or 6 years, but some live 10, and Stephen Hawking, the physicist, is still alive and productive 50 years after his diagnosis
My dear friend Megan Wood understood fate. Her uncomplicated faith in God let her tell me what my intellectual friends could not. Everything fell into place for me after that. I calmed down, stopped fighting with myself to do things that had always been simple, like getting dressed and out of bed. My. back felt better, I stopped screaming at people and objects, and I focused on learning easier ways to do simple things.
I found a serenity I’ve never known.
I’m Accepting Fate, and I’m Satisfied
I’m satisfied with the person I made myself against great odds, with a little help, and a lot of setbacks and discouraging words. I like the quality and balance of my life, relationships, and accomplishments.
When I was 28, I was a homeless cab driver in New York City, intensely suicidal much of the time, isolated, angry, and depressed all the time. It took patience, discipline, faith, and a little unearned luck to get where I am, instead of institutionalized, in the gutter, or dead.
It’s been a fascinating ride. My curiosity, gift of words, ability to grasp and synthesize ideas, and the empathy I learned from my own emotional struggles gave me wisdom and lots of information. I’ve lived in interesting times, am an interesting person, and attracted wonderful friends. If I live another five years, I’ll be 70, and that’s long enough.
Attitude and Acceptance
I wonder if acceptance (not the negative psychiatric kind), and a better attitude would have made my mental distress more comfortable. I certainly could have been less angry and explosive. That held me back sometimes, and made me miserable and ashamed.
I have plenty of wonderful friends now, but for years, I was lonely and isolated. I could have had more friends if I had been nicer, less sarcastic and explosive. I did not mellow out until just a few years ago.
I might have been re-traumatized less often.
It doesn’t matter now. I’m happy; I have ALS, and will enjoy the rest of my life every day. I’m really fine with this.
A similar story first appeared on www.wellnesswordworks.com
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.