Dont fall down now
You will never get up
Dont fall down now. . .
~ Everclear, ‘Strawberry
My problem is I always get up. That may cause some cognitive dissonance on the part of the reader. I mean, arent we supposed to keep getting up, to keep fighting, in my own words, to keep advocating until we are. . . .
Until we are what? Happy? Supported? Secure? Safe? No longer suicidal?
I know there are stories that have happy endings. They have miracles and bliss and a level of joy that was never even dreamed of when the diagnosis came down. I even have fleeting pieces of those stories; when Im with my girls, when Im swimming in the ocean, most recently when I was walking through the campus at the University of Pittsburgh. Words are insufficient to capture that.
I am grateful for it, more than grateful, but I tell you what, knowing its there makes right now infinitely harder.
This is not a Happily Ever After Story (although connected to Pitt, and something I will write of in a difference piece, there is a chance for hope, and not just for me). This is not motivational, positive, optimistic. This is not like anything you have ever read from me.
This is my truth, ten years after diagnosis. This is me backing up, remembering who I was, and speaking truth about how completely destroyed and demeaned and generally fucked over Ive been, usually with my own complicity. This is me taking steps to take it all back.
Proceed at your own risk. Beyond here there be monsters.
Ten years now, TEN YEARS, Ive done nothing but all I was supposed to. I went to the therapists. I went to the doctors. I read the books. I learned the lingo. CBT, DBT, IPSRT, EMDR, you name it. I endured side effects so debilitating that my mother had to hold my elbow and guide my through the rooms of a very familiar house. I was taken to the Emergency Department in the middle of the night because of a dystonic reaction. Based on reading and research, as well as my mothers relation of the reactions ED staff (I was too far gone to get a read), and the fact that the doctor did not leave my side from admittance to discharge — if you have ever been to an ED and had that happen, you were on the edge of death, let me assure you. ED docs do not hang out all night with one patient. Ive been through too much that has been terrifying and embarrassing and life-altering.
Please take my word that with medication reactions and other odds and ends, I absolutely should be dead. Twenty-five times over (at least) I truly should be dead, speaking in purely physiological terms.
Somehow I keep getting up.
I don’t understand it. Do you know how often I have thought, ‘Please, please, just take me. I cannot face this any longer. There is nothing left. Let me drift away.’
(Note: I have never been suicidal, I have never attempted suicide.)
I had a psychiatrist pounce when I was at my most vulnerable and malleable and helpless point and tell me the only treatment left to try was electroconvulsive therapy. For three-and-a-half years, every three weeks, I had demonstrated to him my opposition to ECT. He knew I had researched and understood it well. He knew that I was against it for any and all reasons.
Yet he found that moment, he manipulated me emotionally and psychologically, he abused his position of trust, and his colleague administered 16 electrical shocks to my brain. I got worse. I was no longer even what you would call a person at that point. The quack administering the shocks had the brilliant idea that if the unilateral (right side of head) treatment wasnt working, lets go for bilateral (both sides). Because if you’re getting bad results, lets make them worse!
Somehow, somewhere, something deep down in my ruined self emerged. I essentially said, “Absolutely not and what the fuck is wrong with you that you think thats going to happen? Im done with unilateral, Im done with ECT, Im done with you, and congratulations, you are leaving me in a state at least 50 times worse than before I met you.”
And then my psychiatrist pulled out other treatments after all, and I knew the truth.
At that point all of my self-worth was gone. You would have had to have known me when, but I was the most strong, confident, self-assured, self-righteous, secure, crusading young woman that had ever been. No shit. When I was 14 I became a strict vegetarian, within days I had my mother and sister eschewing every animal but fish. I wore a button to school every day that read “Fur: There’s no excuse.” I pissed off loads of my schoolmates with that. Since clearly 13/14-year-olds were not wearing dead animal skin, my best guess is it triggered something in them that under all the layers of the life they lived to get through, there was a niggling feeling that somewhere along the line they were going to have to FACE THINGS. To make hard choices and answer hard questions.
That’s just a guess, of course.
When I was 20, I dated a wonderful man from Sweden. God, how I miss him, still to this day. We were sitting in a cafe one day, and Bob Marleys “Get Up, Stand Up” came on. He said to me, “See, this song, this is you.” He seemed a little awed by that. I was blown out of my reality, in the best possible way, that he could look at me and feel that. Actually, I still am. I think that I will always miss him.
Ten years. The ECT aside, except for the part that it destroyed me cognitively and emotionally and in so many ways, I got up. I fixed what I could of my brain the best that I could.
That was really The Point. The point where everything inside me that said I was worth something disappeared. The point at which I decided that if anyone was so kind and charitable to be in my life, they deserved any and everything I could give them. They deserved that I jumped through every hoop, twisted into impossible shapes, and passed every single test so I might be worthy of them. I have never been physically abused, thank God, but I have been through so much emotional and psychological abuse that I should not be here, writing these words. I should be in the Snake Pit.
One of the saddest facts of mental illness is that friends and family members often come to expect the above-mentioned behavior as well. People you have known all of your life, people who have supported you through everything (else) and vice versa. You are ill, you have psychological and behavioral and emotional issues and everything is your fault. Something you have to work on.
This is despite the fact that I did everything right. I did not turn to drugs or drink. I did not get knocked up with a baby I was not capable of raising. I never stole. When I lied, it was only about How I Was Doing. (Side note, no one who is not being paid to treat you wants the honest answer to this.) I did run up massive credit card debt shopping, but I was not only manic, I was also on a medication later found to cause compulsive behaviors in those who had never before had them. I take responsibility for this, though in the moment it was clearly not something I could control.
Not all loved ones behaved that way, though. Some just decided that it was too hard. They found a chance or an excuse or a justification, and they cut and run. There is no nice way to say that. I have lost close family members, lifelong friends. . . . Excluding my parents, I have lost every single person I loved and valued and thought would be there no matter what. I am not claiming to be blameless here. I know there are times I am beyond horrible to deal with. But given the chance, I own up and take responsibility for my behavior — which, lets be a little tiny bit fair — is literally not under my control.
And then there are the friends that just cut communication after 20 years. No response, no reason. That, I think, is the one that will break in my heart until the day of my death.
Just something for you to think on, really think: If I were diagnosed with cancer, or some other horrible life-altering (and threatening) disease that would effectively change who I was, that had a prognosis where support of my loved ones made an enormous difference, but that they had to sit and watch and feel helpless because they couldnt make me well; if one by one they decided, ‘This is too hard for me. I cant be a part of this anymore. Im walking away for my own life.’ Now, if I were a cancer patient instead of a mentally ill patient, would I be the only one shouting, “Thanks for the memories, sorry me dying screwed up your life?”
I would not.
And oh, by the way, when all those people who loved and respected you as a worthwhile, valuable friend and human being depart, true or untrue, you decide it must be you, that you are clearly a worthless piece of trash that deserves to be treated as badly as the best people treated you.
Thank you for that, by the way.
To sum up: All the people I needed most, and who showed me I deserved to have value as a human, did the rats on a sinking ship thing. With a very few amazing exceptions, everyone who was left would be my friend and have so much to give me as long as I danced, monkey, dance. And I danced a lot.
I don’t know why it came to today for me to realize how many “friends” are users and manipulators and love me when I can provide what they need, exactly on their time table. Or maybe I do. But whatever it is, Im done. Fuck you for taking advantage of me. Fuck you for telling me I mattered so much when you cannot answer a simple text. Fuck you for mining my ten years of tragedy for things you might find fascinating. It ends now.
And by the way, if youre wondering if youre included in those “fuck yous,” if you actually have to stop and think about it, you probably are.
Id like to end this with the inspirational tale of how life is getting better for me and Im regaining my strength and sense of self, but that would be a lie. And today, right now, I am dealing only in truths.
Truth: I have an apartment that, after two years, finally feels like a home, and not just a space I occupy.
Truth: I have the most loving, beautiful, intelligent, intuitive, affectionate, mischievous cat in the world who comes and lays on my chest when I have panic attacks.
Truth: Im here. I keep getting up. Ive had more than one person ask me how I can be so resilient, keep going when I have been nothing but disappointed and knocked down. So many people say hope, they say prayer, they say support. Thinking on it, I have never heard anything but positives when others speak about continuing to fight.
As for me?
I was watching an old WWII movie, I think with Humphrey Bogart, and they pulled a German U-Boat captain out of the water, one they had encountered before. In the ensuing conversation about how the German had managed to escape death, he said something to the effect of, “I dont survive because of any great training or special capabilities. I survive because I do not know how to do anything else.”
Not the most inspirational source, but that’s me. Whether I want to give up fighting is an entirely moot point. I cannot.
(P.S. Important note: There is currently a study going on at the University of Pittsburgh on treatment refractory depression, in which I am participating. I intend to write it up properly in another post, but in the meantime, if you are interested, email me at email@example.com. Please put PITT RESEARCH STUDY in the subject line so it does not get lost in the shuffle.)
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