Sunday, April 12, 2009

Why won't the bad feelings disappear?

In the field of trauma treatment, there has been heated discussion about the impending ability to eliminate bad memories from the brain. There are those who believe this is the only true way to bring about healing. Others vehemently disagree, arguing that we are the product of all of our experiences, and that different memories have different meanings as we reprocess them and reinterpret them over time.

Traditional therapy aims to neutralize extremely difficult memories so that the memories themselves are no longer the source of anxiety or recycled trauma. The idea is that once the memory stops triggering the fear/anger/anxiety that the original event did and the person can see the memory as nothing more than data, the last hurdle has been cleared to live normally now that the memory can fit into a new context.

So much easier said than done.

I struggle with the anger, panic, anxiety, sorrow, and disillusionment my illness and its effects visited upon me. Yesterday Kat was here and we worked on some things that needed doing for the nonprofit. We both worked for Sonja and we were both friends with her. Kat went onto a management-level job that led her to the position has now with the city's office of community development. She considers Sonja a friend, although I can see they are not as close as they were even a year ago.

Kat asked me about why I had said that Sonja broke my heart. I couldn't articulate it very well, but in the wee hours of the morning, I sent my reply via email. When I finished, I was in tears, again. It wasn't just about my experience with Sonja; this was me reliving, one more time, the loss of a life I could manage and wondering when I could tell the story without feeling devastated yet again. How long does it take before that happens?

Thank you for listening to me yesterday. I am always working on trying to be mindful of how much activity is coming out of my mouth, and I try not to babble. Part of it is just me, but part of it is inherent to my illness. Did I ever tell you that my last big episode--along with having treatment delayed for far too long--resulted in brain damage? Lithium certainly does terrible things to my body and thought processes, but my pre-lithium brain kind of fried itself and I have permanent deficits as a result. (I told Sonja that a few times and each time she rolled her eyes and told me You...are...just...fine and there is no brain damage.) Among other things, my ADD went full-blown, and my short-term memory really took a hit, hence my need to start every conversation with, "I don't know if I told you this or not..." I can't remember where I put anything, and I have to make notes and lists obsessively to compensate. Also, it is almost certain that the nerve-related pain syndrome I'm dealing with now is in part related to misinterpreted signals in my central nervous system. The medications I take have certainly stabilized my moods and smoothed out my thinking, but they have also removed much of the positive side of the mood spectrum from me--joy, light-heartedness, and optimism are mostly suppressed by the meds. I struggle with this a lot. I'd like a new and much better brain because the one I have isn't doing much to let be me the person I want to be.

I hope I didn't say anything about Sonja that you found to be offensive yesterday. This is a topic of great pain and sorrow for me--and sometimes intense anger. Last night I was alone after Frank went to bed and I thought about just how unsupportive Sonja was when I needed her most. She certainly wasn't alone in that, but she was the most overtly hostile person in my life right then. Last night I stayed up until almost 2:00 a.m. looking through my journal files from that time. The writing is almost hysterical in tone and style in some places, but the facts are still in there and now that my health is better managed, I can look back while thinking rationally and I see what makes me so sad even now. Rather than send you journal pages, I will recap a couple of weeks of writing. I wish I could say my perception then was colored by my extreme rapid cycling and mixed state, but the words of everyone involved are pretty much verbatim. My illness really has taken a lot from me and there isn't a medication in the world that can take away that kind of sadness and disappointment.

When I was in full meltdown and going to therapy once or twice a week, there was a session where I was talking about how awful I was and the terrible person I had become. I was crying so hard I wasn't making much sense, so the therapist stopped me from speaking and she said, "What is it you're doing that is so bad? Did you kill someone? Crash someone's car? Burn down the house? Why are these women [Sonja & Tica] so angry with you? What have you done to their lives that is so heinous?" I was having trouble lining up my thoughts, so answering was not easy. I told the therapist, "If I understand it, I'm not putting in enough effort to be nice or to filter my thoughts in any way, so what I perceive as straightforward honesty is pissing people off, but I don't even know what I'm saying or doing wrong. They think I'm hostile, but they don't understand I don't mean to be. Sonja's mad because--and she told me this point-blank-- I'm a disappointment to her now that I've stopped living up to her impression of me. She always held me in high esteem and thought I was better than "this," but now that my illness has taken over, she sees a different person and she wants me to, quote, 'get my shit together and stop behaving this way.' I told her that I am suicidal and that I'm so severely depressed I can't find any reason to fight this. She got really angry, leaned across my desk and pointed her finger close to my face and snapped that I was a quitter and that was making her mad.

Lisa, I am trying to act normal, but I can't connect my thoughts, I can't sleep, I can't think, nobody can assure me I'm going to get better or that the drugs won't always make me so sick and what I need are friends. I need to know they love me, but they only want to know a certain version of me. If I can't be that version, then they have no interest. Why can't anyone understand that I have never needed love and friends more than I do right now? Why can't they walk this path me? They don't care. They just don't care. I'm not worth that kind of love, I guess. Nobody cares if I fall down or how bruised and broken I am, they only care that I start acting normal. I am so alone and now I have to try to hide that I'm sick, too. Why don't they understand that I am sick and this is not a voluntary condition? Why would I want to be this way, Lisa? Why would anyone think this is a choice? Why? Why don't they get it? I give them articles to read but still, nobody can accept that this illness is a big, fat, brain defect. Why won't they cut me some slack? Sonja keeps saying I'm not trying, but all I do is try. I can see that somebody could be offended if I say whatever thought races across my brain, but really, if I can't control that, how can I control feeling like I need to end my life? How can she get outraged and wag her finger in my face and tell me that I'm a quitter and then go on with her day normally but satisfied like she just did me a fucking favor by trying to straighten me out?"

Less than a week later, Dr. B said, "You need to protect yourself, May. Make sure this woman signs a confidentiality contract. If it turns out that after signing it she speaks to anyone except HR about your condition, you can get her fired and you can sue the organization--and win. Remember, you have coworkers and you have friends--don't confuse one for the other." Then he went on to fill out FMLA paperwork on my behalf in case I couldn't tolerate being at work anymore. When I submitted the paperwork to HR, I talked with the HR director for about an hour. She was incredibly supportive and helpful. She gave me the language for the confidentiality contract and told me to make sure I kept a copy, Sonja kept a copy, and HR got a copy sent directly to the HR director. I never thought I would see a day when HR was more helpful and protective of me than someone who purported to care about me personally. Sonja signed the document but never mentioned it to me again.

What I was trying to say yesterday was that I have never, ever felt that Sonja cared about my being sick; in fact, she does not believe that my illness is an illness at all. She sees it as a character flaw with ensuing emotional and behavioral problems that can easily be corrected through self-discipline (trust me on this one--there is no interpretation here). It is an annoying inconvenience to her. I remember I once told her that 20% of people with BP commit suicide and she said something almost verbatim like, "Not really. That illness itself isn't fatal--it doesn't actually kill anybody on its own."

When therapy was finished and I became more adept at using my coping tools, and then the medications were tweaked to a point that allowed me to function, I was able to do a better job of putting on my persona every morning just before I walked out the door. I made a decision that I would no longer have friends or let anyone know more than the most superficial details about my life and how I experience it. I stopped believing in the existence of any spiritual entity that influences the outcomes of our lives. I told Frank that if he wanted a social life, he would need to make his own friends because I was finished with that aspect of my life. It has been almost three years, and so far, these decisions have proven to be wise ones. Becoming friends with Jolie was the only exception--she met me at my worst and didn't judge. Also, it's not hard for me to be friends with someone who lives 800 miles away. It's a safe distance.

Otherwise, I struggle with the day-to-day challenges of an illness that can be controlled (erratically) but not cured, especially knowing that I fall into the 10% of cases that are medication resistant. I am intensely self-vigilant, desperately lonely, and determined to prove that I am no less than anyone else and that I can still be productive--I'm down but not out, useful and not a throw-away.

Having said that, what I really want is to stop everything, find quiet, and never need to leave my house or have to talk to anyone. It would be such a relief to stop worrying about whether or not I'm behaving OK, thinking normally, keeping paranoia at bay, etc. Mostly, though, I wouldn't have to act like I feel OK when I don't. I will probably always have subclinical depression, I will be wracked with anxiety, I will make mistakes due to my cognitive deficits, and I will have suicide ideation on a daily basis, but it would all be easier if I didn't have to see anyone or do anything. Having the nervous system/muscle spasming issue adds an intense layer of additional stress to my life. I feel like my life is very, very hard, but nobody except Jolie and Frank seem to understand and appreciate the full implications of that. And that's OK.

I hope this gives you some insight into why I harbor some frustration about my relationships. Now that I've said all of that, I promise I will stop talking about it! Thanks for listening.

1 comment:

Ethereal Highway said...

"I wouldn't have to act like I feel OK when I don't."

That is exactly why I live the way that I do. Too much of that kind of acting wipes me out every time. I hope you won't beat yourself up for not wanting to act. Brief periods of acting might have their place, but it is not normal to live life just 'acting'. It just isn't. Something will eventually blow like that.