This is my manifesto for this blog… not only is it about how and why I started this blog, it’s also the first thing I ever wrote here (Nov., 2006), and the first thing I ever wrote directly and honestly about the disease and my recovery.
“[Manic Depression] is a disease, our brains are not capable of certain tasks, like turning emotions off, which leads to even more devastating problems like a lack of reasoning between right and wrong when it comes to our own bodies.”
“There’s nothing amorphous about having no legs, or having no use of my legs. You’re a cripple. You sit for the rest of your life. You will never walk again. People ask “what’s wrong” and you point to the obvious. How do you answer when someone asks “what’s wrong, sunshine? Are you not feeling well today?” Do you point to your head and shrug your shoulders?”
I’ve had to negotiate between the trauma’s of my life to determine who I am. Every time I’ve been kicked down to the ground I’ve had to decide whether or not to get up, and what the consequences were of staying down. I’m not entirely sure at this point but I believe I’ve stayed down on at least a few occasions, at least until getting up was safe. I am not a morose loner, although I sometimes seem that way to lazy eyes. At some point I believe I was seen. I have won awards for writing; I have had two famous poets tell me to publish; I have a book deal; I have post-traumatic stress disorder and I was diagnosed with Manic Depression in 1988. I have spent many hours on the other side of the railing, but I’ve always come back. The question is, can surviving and soul-searching be done at the same time? The answer is: I’m running like a broken man.
This is what I want to tell people: ‘My life is easy in your head.’ Sometimes I sleep for hours just to pass the time, because I’m too depressed to move. Sometimes I stay awake for 36 or 48 hours just because I can’t stop. I have spent exactly half of my life trapped in the trunk of a car. There have been years where I could not move.
There is only one step a Manic Depressive can make to get better: make every sacrifice to take the pills.
People die. People have to cope with that person’s death. That’s life. Everybody goes through it, everybody will go through it again, and again and possibly again. People with the Disease we have do not have the capacity to deal with losses. We react differently to everything. We’re too happy, we’re too melancholy, always we’re too much. The pills restore that ability to regulate our emotions as Regular people have. Without that regulatory power we, Manic Depressives — you and I, can be crippled by day-to-day events. The wrong look from a teacher, the wrong word from a friend, the wrong feeling can tear us apart so completely that we spiral down into a depth of depression which should be unheard of. Being alone, or in a crowd of strangers or in the company of a friend or the hug of a Sister makes no difference whatsoever. As soon as that thought, that feeling, arises in our head we’re done.
And it’s the disease which puts that thought into our head. It’s the disease which makes that thought take over everything. It’s the disease which takes you from “I wonder why my friend didn’t call” to “I haven’t any friends at all”, it’s the disease which makes it rational to flow from sadness to loss to despair. You know that. So the only way to fight the Disease is to Fight the disease.
There’s nothing to take responsibility for, or over, except the pills. Why can’t you move today? It’s the disease. Why are you so tired that you sleep past important events, sleep for twenty hours? It’s the disease. It’s not your fault. People will blame you, they’ll make you feel responsible, you should have tried harder, you should have made an effort, you’re being antisocial and dark, why can’t you be more like your sister? And even if they don’t ask these questions, you will. But they can’t be answered, there are no answers, and you feel lost and responsible, which starts a spiral and you start telling yourself that dying is the answer, or at least showing people that you’re willing to die is the best way to MAKE THEM SHUT THE FUCK UP AND SEE WHAT’S GOING ON.
There are no answers, none, because they’re asking you the question and you’re NOT responsible. The disease is responsible. The disease turns grey to black, an event into a Tragedy, a question into an accusation. But you feel lost without an answer. Someone says, half mockingly, “well aren’t you Ms. Sunshine today” and you feel shame, shame that you can’t make the smile real. Shame that someone might be seeing your pain, and instead of understanding you receive mockery. They’ll tell you to take control of your life, walk the dog, get up earlier, get outside, as if the decisions to take part in physical and social activities were within your control.
But none of it is real, it’s all fake. None of it is within your control, it’s all out of control. None of it is you, it’s all the disease. And the only way to control the disease is to medicate yourself; is to do whatever it takes to make sure you take the fucking pills. Talking comes second. Talking is important, talk to someone who will listen and give feedback but not judgements. Don’t talk to friends, don’t talk to family. Friends and family, even if they’ve dealt with a friend or family member with Manic Depression in the past, have no understanding of the disease itself. They understand depression, they understand that if someone is depressed taking them for a car ride and talking things over will move that someone past their depression. But we’re NOT depressed, we’re not even Clinically Depressed. We’re Bi-Polar, Manic Depressive, Mentally Ill. This is a disease, our brains are not capable of certain tasks, like turning emotions off, which leads to even more devastating problems like a lack of reasoning between right and wrong when it comes to our own bodies. Friends and family can only grasp the basics of your Recovery: are you taking your pills? are you seeing a doctor regularly? are you getting outside at all? That’s it. All they need or want is Yes or No. Anything else requires Explanation, which you can’t do because you’ve only seen the disease from the inside out.
Maybe you saw a Law & Order episode, maybe you deciphered the lyrics to a Jimi Hendrix song. You have the experience, but not the knowledge. There are questions which only someone — a Good Doctor, can ask and — not answer — but give awareness to answers. There are things which only they, with their deep understanding of the disease, can understand and then impart that understanding to you:
You: “I only seriously thought of killing myself once this week.”
Doctor: “That’s sort of an improvement. Tell me what you mean about ‘seriously’ and about what brought you there.”
Friend/Family: “YOU THOUGHT ABOUT SUICIDE?”
Or maybe they lend that ‘all important ear of familial understanding’, which allows you to speak without saying anything. The points they interject will be well meaning, but meaningless. They will be trying to understand the disease through you, from someone who doesn’t understand.
There are times when I believe that being in a wheelchair would be easier. There’s nothing amorphous about having no legs, or having no use of my legs. You’re a cripple. You sit for the rest of your life. You will never walk again. People ask “what’s wrong” and you point to the obvious. How do you answer when someone asks “what’s wrong, sunshine? Are you not feeling well today?” Do you point to your head and shrug your shoulders? It requires an explanation. You have to stop and think: should I be glib? should I make something up? fake an excuse? do I tell them the Doctor says I’m Bi-Polar? what then? what if they ask a follow up question and I have to start explaining shit to them? You can’t just say “I’m a little depressed, and my brain chemistry doesn’t allow me to snap out of it like yours probably does. I’m not wired like you, or most likely anyone else in this room are, and you coming over here and making a point of my mood does not help me whatsoever, so could you please just fuck off.” Or, if you are rude, suddenly you’re in the position of having to make an apology.
You have to apologize for having a disease which causes you to have extreme mood swings. No one in a wheelchair, or with cancer, or with heart disease, ever has to apologize — or is made to feel like they must apologize — for being sick. But we do. Everyday for years — for a decade — for eighteen years I woke up and had to apologize for something to someone for a disease which was out of my control.
“I’m sorry I’m late for work.” “I’m sorry I missed our date.” “I’m sorry I haven’t been a good boyfriend.” “I’m sorry I seem like such a shiftless slob.”
“I’m sorry, but I have a disease which makes me depressed”. How many times have you told someone a variation of that one? Or maybe just: “I’m sorry, I can’t. I feel too depressed.” I’ve said that many times, to many people since 1989. “I’m sorry, I have a disease.” Why was I sorry? Why didn’t anyone tell me I shouldn’t feel ‘sorry’, that having a disease is not my fault? Because they, and I, had no understanding of what the disease was. What does “Bi-Polar” mean? What does manic-depression mean? Now tell me what “cancer” means. Tell me what Lou Gerhig’s Disease means.
Take the fucking pills, take them everyday. If you miss a dose, make damn sure you take the next one. If you miss two doses, take a dose as soon as that realization kicks in, if you miss three doses tell someone to make sure you take the next one: Understand that you’re in Trouble at this point. This is a disease which can be beaten into submission. There’ll be a cure within this decade, or at least better and more targeted treatments.
There is hope. And stop listening to the fucking Cure and Pink Floyd. They’ll fucking kill you.