My friend Maureen Herman (former bassist for Babes in Toyland) is writing a book called "It's a Memoir, Motherfucker." Here's an excerpt in which she gives her account of living life with an invisible disability and how those who do not suffer can best support those in their lives who do. — Mark
I think when the chasm between who you really are and who people think you are is too wide, that's where true despair lives. It makes you feel so literally alone, to feel you are the only one who knows you. Loneliness of being unknown, that is the dullest, greyest, flattest, and most overwhelming of voids a human can experience. Prolonged periods of that dehydrate your soul. They may be biochemical, delusional, or situational, or some combination thereof, but what I do know is that at some point, it is literal agony.
Short term gratification fills the gap. It gets you through. When people tell you how much you've accomplished, and what great things lie before you, it sounds like the teacher talking in the Charlie Brown cartoons. Blah blah blah. It means nothing. Some of us have minds live with no sense of the long game. So when people ask how someone could kill themselves when they had done such great things and had the world at their feet, I understand how they could. You don't take any of that into account. It's meaningless. Your only reality is how you feel right now, and when it is that deafening void, and no drink or drug or relationship or amount of positive attention can mute it, it feels permanent.
I feel it sometimes. Living with Major Depressive Disorder, Complex-PTSD, and being in recovery from addiction and alcoholism means I sometimes feel the wave of grey permanence come on. But through years of AA meetings, psychotherapy, biochemical psychiatric treatment, research, and writing, I am sometimes able to watch these episodes as an observer, knowing that somehow these slides of negativity got inserted into my mind's slideshow. I understand that it will be a drag to watch them, to go through the thoughts and feel like they're mine. But I'm lucky to have learned that I am not my thoughts. I forget it sometimesall the time in fact. That's why I still have to go to AA meetings. Someone in AA once shared one of the most important concepts in my recovery from everything, when she described what she called Step Zero: "We admitted we were powerless over our thoughts; that our thought life had become unmanageable." That's really the crux of it with all of my conditions.
That simple sentence eradicated many hours and years of time spent believing the thoughts I was having were reality. That doesn't mean I don't get clinically depressed. I know when to accept that depression is shutting me down, because I understand it will pass. It doesn't make the experience of it any less frustrating and debilitating. But it has been ingrained in me enough through all my forms of treatment to believe it is not a permanent state.
I guess my writing is my way of trying to bridge that gap between who I am and who people think I am or should be. Maybe that's what saves me in the end, because by constantly exposing my faults, weaknesses, and shame, they cannot fester in the dark.
Me and those like me, our lives are not linear. I do not build upon past successes or learn from past failures and mistakes. Instead, I am like a sieve, riddled with holes, life in all its emotional constancy leaking a rich, red blood, leaving me never full, never satisfied, always short of something.
But it also provides a great capacity for intense emotion and empathy. The barrage of my life experiences give me an armor with which I face the inevitable adversities of a life lived exposed. I bring sensitivity and a large capacity for expression to the table, but I also leave it littered with the undone, the failures, the broken promises, and an inability to retain any constancy of well-being. I only live in the short term reliefs I can collect like flowers before they wilt. I often live in the short terms horrors of my mind that cause me to focus, razor-like, on immediate relief. If we cannot find it, non-existence seems a rational solution.
To understand that, you have to believe me when I tell you that it is not about feeling sad. No, it is the feeling, the certainty of an eternity living in futility. With every congratulations and adulation you almost feel the universe is mocking you, and you burrow even further to hide who you really are. People like me are not on a path to success, built by logical steps. We are not encouraged by "I know you can do it" cheerleading. Let me know that it's OK if I can't do it. Let me know it's OK to not be the success and superstar that your well-intentioned support has projected onto my ravaged and fragile identity.
And the more people tell you they love you, and how great you are, the more you feel like a fraud and imposter. Your inner hypocrisy becomes intolerable. The dissonance between the world's view of you and your inner reality makes you want to turn the sound completely off. Some people do. For them it is the treatment of last resort.
When I talk about mental illness, I am not talking about low self-esteem, insecurity, or bad patches. I am talking about the recurring, periodic and unpredictable hijacking of my brain to neurological thought patterns that, over time, have worn deep grooves on my neural pathways like the favorite notes on my fretboard. I don't mean to keep going there, but it's where my fingers end up.
I think it is in the hiding that the tragedies occur. The lack of a friend who will let you be a failure, who is not a cheerleader, but rather, an objective spectator not rooting for either team. Someone who doesn't need you to be "well" or happy, or cured or better or on a logical trajectory, but will allow you to tread water until you know if you want to drown or get out of the water.
I am damaged and imperfect and will never be cured of depression. That is not a concession or defeat, it is a hard-won acceptance of my right to be psychologically different than you are. Some took as much as they could. It was literally the most they were capable of.
I have never once had a plan to commit suicide. Never, ever, ever. I would consider my suicide risk to be .0000000001%. But I have thought about the relief non-existence would bring almost daily since my twenties. It's a thought, and that's where my brain goes, like the tires on a rutted road. Can the default be changed? Yes, here and there, with great awareness and effort. And that is what my various treatments, meetings, and the right medications have brought me. But when I hear of someone who committed suicide, I don't see them as having given up. I see a member of my tribe. I see them as having given it their all, and that was all they had left.
I do not think of their exits as failures or mistakes, no matter how tragic. I must witness the magnificence of the life lived before its end, and I know that they were doing the very, very best they could. Their unique mind brought unique talents, perspectives, and humor. It's the things we all loved them for.
I say let their whole life be a triumph, that they made it as long as they did, and accomplished as much as they did. I wish people would have compassion for the choices made–even the ones that cause others pain, that seem senseless and selfish, and the ones you think, "if only this," or "if only that." If it was drugs, or addiction, or illness, or depression, or lack of treatment or the wrong meds, have the compassion to understand that they were seeking relief in that moment, and that what they did made sense for them.
None of this is to say that suicide is inevitable. But for those who are left behind with gnawing questions, pain, and guilt, know that suicide is the option when you feel you are out of options. For those suffering, whether correctly or incorrectly, they feel they have no other source of relief. Their existence is something they can control, something they can end to find the peace you have watched them struggle for their whole lives. Sometimes, as for one friend of mine, just knowing she has that option provides a comfort that actually prevents her from doing it. You need to feel like there's a way out if you can't find a way through.
I know there are loving, well-meaning people around me, But honestly, I don't feel like they understand when I do reach out. They believe they must offer advice, solutions, or fix it for you. With every action and word they are saying, "It's not OK for you to be like this. I can't love you like this. You need to get better."
I have a few rare friends that I don't have to avoid on the days when I am capable of little or nothing, because they will not try to cheerlead me into motivation. They are not driven by their own discomfort with my condition, needing me to change to suit their idea of how I should be. Instead, they accept me as I am, even when I am not doing well–especially when I am not doing well.
This is the most loving, healing thing a friend can do for a friend like me. It is exhausting to pretend I am well all the time, but if I share the truth with some people, I am barraged with advice, cures, chiding, or encouragement–the din of non-acceptance. It is the loneliest and most sorrowful thing to hear when I am depressed or in psychological pain, because I know I have to add them to the list of people not to turn to at times like this.
Gradually, your circle of support gets smaller, as mine has the past few years. There are those who think I am lazy or self-destructive, others who think I would be cured if I'd just do this or that, and some who have written me off completely as a failure and fraud. The unconditional friendships I am so lucky to have remind me that there is nothing "wrong" with me. There is only me, with all my talents, problems, successes, symptoms, diagnoses, features, and flaws, all rolled up into Mo. That helps to make the bad days just days, and helps me better see the continuum of existence that I forget so easily. The pendulum swings, and I find them at both ends.
I know some of my friends want to help at times like this, but don't understand how to help. It's not their fault. This isn't innate knowledge by any stretch. Mentally stable people respond to encouragement, consequences, and logical solutions. But it just doesn't work on some of us. In that case, chances are high they struggle with mental health stability, an addiction history, and/or trauma symptoms.
I have lost a lot of friends because of my disorders over the years, because of their frustration with their perception of my lack of progress or my failure to be symptom-free via their suggestions. I think it is worth pointing out how to be a friend to someone like me. Because feeling superunknown is a precarious existence, and largely unnecessary, I believe, if armed with a few tools of recovery, professional help, open-minded friends, and a steadfast commitment not to live in shame.
After my friend and neighbor, Michael, blew his brains out rather than be evicted from his longtime home, I went to the funeral. The priest asked if anyone wanted to say anything. A few people got up and spoke of what a tragedy and loss it was. It moved me to speak, because that's not how I remember Michael. I remember a devoted father who wanted the very best for his daughters. I remember an inventive and enthusiastic man who relished in introducing us to his favorite beach spot. So that's what I talked about. His suicide didn't erase his love for his daughters. It didn't mean he gave up on them. What I saw was a man who literally did the best he could, and it didn't go as planned. His marriage didn't work out, his job didn't work out, his dreams didn't work out. That was unacceptable in our society, and he must have felt it to his core to do what he did. Michael died from chronic expectations.
I have to wonder where these people were in the dark times, when he was clearly out of work for months and months, struggling with a bitter custody battle, and facing eviction. He did not need them at the funeral. He needed them to be OK with his abject failure. Instead, he was too ashamed to live.
Embracing failure and struggle doesn't enable it. It merely acknowledges its normalcy, and is accepting of mental health diversity. Being free of mental health disorders doesn't make you more successful or better than me. It primarily means you struggle far less to accomplish the same things, that everyday tasks are easy to you.
Someone with a disability isn't a failure for not being able to use stairs the same way you do. They adapt. They get resources, they do the best they can. But they will never walk again. Your encouragement for them to walk like you do will only make them feel horrible, gravely misunderstood, and certain that you are no friend to them. And they would be right, that is an unhealthy person to be around. That's why I had to detach from a lot of people I now miss.
As my three best psychiatrists all impressed upon me, mental health is not the state of being symptom-free. It is the state of acceptance and real-life adjustment to your disorders and symptoms. There was once a powerful statement I read from my longtime psychologist. In a letter supporting my need for assistance she wrote, "Ms. Herman puts a great deal of effort into trying to appear normal." I still do that. It is so hard not to do it, because then everyone doesn't get so upset.
I'm not typical, average, or normal, but I do my best. That is not enough for some. Many people focus the blame on some perceived and assumed flaw I must have, not considering, and not aware, that my brain is sometimes randomly hijacked. I can write a chapter in one sitting that requires almost no editing. I can also spend two weeks on a chapter, and fail to complete it or even have a coherent draft.
The missing ingredient is not capability or lack of a life skill, it is consistent inconsistency. Normal people rely on their moods being stable, their thoughts being their own, their long-term plans coming along in satisfying stages. Now pretend you get kidnapped, randomly, every few weeks. You're dumped back into your life, and have to somehow pick up where you left off. It takes time. Sometimes you're just getting oriented when it happens again. Sometimes you go a long time without getting kidnapped, and your life is going really well, you're getting a lot done, and you think you'll never get kidnapped again. Then one day, you do. For two weeks. By the time you get back, all the progress you've made is unraveled by inertia, lost time, and confusion.
This is what it's like for me, living with mental illness. At some point, you have to work around the kidnappings, or you're just going to destroy yourself trying to make up for lost time. You have to accept that your output is different than a person who doesn't get kidnapped periodically. You don't know why you're being targeted for kidnapping and others aren't. You have friends who do, and you commiserate.
But again, the distinction is the chasm of what people think your life should be like and what it's really like, and how much shame you have about it. What if you had to hide the kidnappings from everybody or you'd lose your job, or your relationship, or your reputation? It is, after all, pretty embarrassing to keep getting kidnapped. I mean, you must be doing something wrong to attract the kidnappers, right?
Lying in bed because you want to, and lying in bed because you have no choice are two different experiences. One is restful, the other is torture. They are not "days off." They are days missing, days lost, days stolen from us, and we have no control over when it happens, or when it will end and we can return to our lives. Lying in bed is frustrating and boring as fuck and the tape playing in my head is generally agonizing.
Now that my mental illnesses are treated and I am more stable, my experience is different, but I am not cured. I don't lose weeks very often anymore, in fact I rarely have severe symptoms for more than a few days in a row, and they are far more infrequent. Still, once in awhile, a two-week hit job comes, usually in the fall and winter, when Seasonal Affective Disorder comes into the mix, and there's nothing I can do about it.
When I am doing well for long stretches, some friends and family proclaim me cured, saying "you can go off your meds now!" as though that is the ultimate goal, to get off the meds that have brought my mind relief and balance. The well-meaning will become accustomed to your improved productivity, and when a mild episode comes, they will ask if you're eating right, or wonder if you're still sober.
They don't understand the constancy, the inevitability of my symptoms. That's OK. But that's why I am telling you what it's like. So maybe more people would understand that their quiet, aligned presence can be the best support to those in their life who suffer from depression or other mental health disorders. Because it's exhausting not to be allowed to experience our lives openly as things hit us, or to have to hide our range of emotions to fall in the normal range when interacting with others. I will never cured of depression, but I am doing all I can to treat it, including tell you what it's like for us. So when you ask me how I am, and I say, "Never better," know that I am telling you the truth.
Maureen Herman is a writer and former bassist of Babes in Toyland. Her book, "It's a Memoir, Motherfucker" is due out on Flatiron Press in Fall 2020. You can follow her writing and video blogs at patreon.com/maureenherman. She lives in Marseilles, Illinois with her daughter.
