Work in Progress [in more ways than one]
I went back to my mother....I said, "I'm crazy ma, help me!" She said, "I know how it feels, son, cause it runs in the family". Can you see the real me, can ya? Can ya?
Well, let's take a look at the mediums. Twitter...I'm flat out in it for the comedy. I balance this out with the 10% that I'm in it for the MS community. Which may be even less than 10%, because those of us with MS don't post all that much. We are too busy having MS. (See? Comedy.) So maybe 8% MS community, and the other 2% is information - like certain NPR shows, Roger Ebert, some gluten-free bread company. When I post on Twitter, I am usually imagining myself standing up in front of a fairly small audience, making my dopey little comments on life. It's really fun, and I enjoy reading others. If I follow someone who just becomes totally annoying or depressing, I stop following them, at least for a while.
Facebook - eh. I have a love/hate relationship with it. I love that I can post something there that I think is funny and get almost instant feedback. And I hate that I love that. I find 60% of what gets posted on FB to be annoying. Well, let's say 60% of the posters are annoying. Why I am reading stuff from people I find annoying? Because they are my "friend" and I'm supposed to. I can't play that game anymore. I'm starting over at G+. But I will miss the 40% that I do love.
The attractiveness of Google+, for me, is the circles. And, that there is nobody there! Andy Borowitz has posted a series of snarky G+ comments on Twitter this week.(5) "They're funny because they're true!" A funny thing to me is that Andy is one of the 6 people I have 'circled' on g+. Writing to a nearly empty crowd is somehow really soothing.
I still have a blog because - I like to write, 140 characters doesn't cut it for the stuff I write, and I don't want everybody on FB to comment on it, I don't think. It's hard to want to express but also be so stupidly sensitive to criticism.
And a blog posting is a place where I can sort some stuff out. My thoughts, my fears, whatever it is I need to work out, writing it a good way for me to do it.
And here is something I need to work out. My son was in the hospital for a few months. That, literally, is a book that I am writing. Whether I am the only one who ever knows about it or not, it needs to be written. So it's hard for me to write about my current issue, because the back story is far too unwieldy to tell here.
The fallout from the last nine or ten months of our life is that my son, 12, practices the drums...oh, about 6 hours a day. He also came out of the hospital with a brain disorder that they tell me is OCD, though that description really does not do it justice. The two things (the drumming and the OCD) frequently collide. I'm not really convinced it is OCD. I sometimes think it is bipolar disorder. But for now, we are using the OCD lens.
Since we left the hospital and stopped the day treatment, my life is 80 - 90% him. I work ~15 or 20 hours a week, from home, right now. He is on psychiatric medication that he gets 3x a day. He takes many vitamin and herb supplements three other times a day. He is still on a treatment plan which requires him eating 4 or 5 times a day. So our days tend to be pretty prescribed, and a bit high-maintenance in certain ways.
When I say OCD, you might think - oh, he has a germ phobia or washes his hands too much. Those things are part of OCD, though it turns out that OCD has a wider footprint than I ever knew about. Sometimes OCD can sound rather harmless. But it is, I think, the degree of either the "O" or the "C" that determines how brutal it is. A's version of it is pretty brutal. The "O" in his OCD manifests itself as a 'voice' in his head (he used to call it the 'bad Adrian') telling him he's no good, he can't drum, he'll never be good enough....what I would call a "critical parent"*(0). The critical parent in his head is quite nasty. It can bring him to his knees, literally begging for mercy. The "C" manifests as him saying he'll "never drum again", he "wants to die", he "has to quit". That kind of thing. If left unchecked, it becomes very self-destructive, with him trying to destroy himself. As you might imagine, it is heartbreaking to see a 12 year old boy being tortured like this - and so graphically. His 'voice' tortures him about drumming, and only drumming. I have a theory that it picks on whatever basket you have all your eggs in. How you define your identity, perhaps.
Now, as far as I can tell, we all have mild or faint versions of this ourselves. Many, maybe most of us, eventually learn how to tame those thoughts and our reaction to them. Most of us don't have such a painful degree of it. It has been explained to me that OCD is like a broken 'sorter' in the brain. The OCD person can't distinguish easily which thoughts they should keep and listen to, and which they should just toss out and not try and do anything about.
I'm of the opinion that children shouldn't have to deal with this. Let's leave it to the adults. I want there to be a grace period of about 18 years before any type of mental illness takes up residence. But it 'don't really happen that way at all.....nah nah no. Don't happen that way at all'. (1)
My own stuff started at about 13. I was a walking eating disorder, and four years later, a walking clinically-depressed high school senior. If you are going to suffer from an eating disorder and depression - try not to pick 1973 or before as the beginning of your problem years. Nobody understands it yet! Better to come back 30 years later and try it.
And that's what A did. Sadly, only some understand it now, 30 years later, and even those people don't completely. But we are much better off than we were.
The piece I am trying to solve here is my own reaction to A when he is being tortured by his voice. I have to be at the top of my game to deal with it well. He is usually screaming, banging his head against a wall, crying, shouting, saying "I want to die! I want to die!". In a perfect world, one's mom would react to that kind of thing with compassion. "Oh honey, I am so sorry. That must feel terrible. How can I help you?"
But something goes awry for me a lot of the time. I think I understand one part of it, which is the frequency. It happens a lot, and I don't like it. The chronic nature of it makes me walk on eggshells all the time. What is going to set him off this time? I'll never know, and I can't control it. Part of his treatment at the hospital and following was intentionally regaining a fair amount of weight, to get him back to being able to, well, live. He weighs more now than he ever had, and he's grown a bit. I don't think he knows how to manage his body, and he is constantly - and I do mean constantly - bumping his head, bumping his elbow, banging his knee, cutting his ankle. And always with great force. You name it. It is just happening all day, every day. And everything that happens causes a pretty over-the-top reaction in him. Everything is a catastrophe. He bangs his foot and screams like a chainsaw just cut it off. And the screams cause my adrenaline to go through the roof, and I start getting all PTSD on him.(6)
What this has done is worn done my sympathy account. (2) And when I say worn down, I mean, decimated (3). I honestly don't have it. Don't even know where to get it a lot of the time. I'm pretty sure this would suggest that I am not doing something right, taking care of myself - whatever. But right now doesn't feel like it's my time to do so. Writing this is my way of basking in luxury -- and it is a pretty good one.
Another part of it is something in me that reacts to him expressing his angst so publicly, and also reacting to what I think comes across to me as 'weakness'. When I say that, I don't mean it as a conscious judgement. What I think might be close to the truth is that there is a deep part of me who was never allowed to do that!! It was not cool to cry so much, to whine, to struggle to openly. No, what I learned was that you do NOT do that out in the open in your family. You are supposed to hide that ugly stuff. I boy, did I do a good job of it. Until it started leaking out of me in my 20's and 30's.
I hate that part of me. I mean, the part of me that is kind of weak, and that does struggle, and does cry. I've internalized it as not 'being ok'. I'm pretty sure that I need to alter that. I need, actually, to embrace that part of me. It's the only way I'll be able to authentically embrace A when he is in that state.
Don't get me wrong - there are plenty of times when I can rise to the occasion and I truly bring it. I Am There For Him. Big time. I spent 8 weeks in the hospital with him, and never actually lost it in front of anybody until after we were home. Impressive, but perhaps not so smart. I just store it and store it and store it until it has to erupt somehow. But I had to.
It seems that when the shut-down, scared, frustrated child in me meets up with the shut-down, scared , frustrated child in him, well, explosions tend to occur. The positive thing about the chronic-ness, is that I've had a lot of practice and have even learned how to fake it. There are times that I do not have "it" to bring. So I act 'as if', as they used to say in 12-step. I just act like a compassionate mom. Usually, I am radically opposed to being any thing other than authentic, but I've had to let that go, at least for a while. It's weird for me, because what I always used to have was too much compassion. I felt everybody's pain, and quite deeply. To not be able to have it all the time for someone I love so much feels so wrong. Yet, I think it is a signal to me that I am not doing all the gd maintenance on myself that I am supposed to.
Really? That is just hard for me to believe. I keep having to learn this, and I never quite get it right.
I know its true, because when I do process all the bs in my head and my soul and get it out (like, writing about it, let's say), then I can go back to my life and have compassion again. It sounds like a no-brainer, but for me it isn't. I somehow trained myself to do the opposite, and undoing that training is harder than you might think. If I think about it enough, I'd say that I had to train myself to keep it all inside - that was the way of the family I grew up in, like many in my generation. It was my own perception of how to get by and feel safe. It wasn't wrong - it was just my survival mechanism. And now it's not serving me so well. What I learned from my original family was -- you don't express your negative emotions until they explode out of you, uninvited, and cause big conflict. You don't say how you honestly feel because you don't want anyone to have their negative emotions explode all over you. Emotions are dangerous.
Yeah, yeah, ok. How do I teach my kids something I don't do very well? The only way I know how to is to just talk about it. And talk about it from my own experience.
Some of the bs I keep inside of me is what you might call existential rage.(4)
Such as,
"Really, universe? There's another gd spiritual lesson I am supposed to learn on this stupid- ass journey?" Or,
"Seriously, universe? You think making my 12 year son fucking want to die is a good idea?" Or, "Wait, I am supposed to live with all the pain in this world and just go on like it isn't happening?"
Or, "Oh, I see, we don't figure out everything we needed to know in life UNTIL OUR LIFE IS NEARLY OVER? WTF???"
You get the idea.
Not to mention - have I told you my son practices drums SIX HOURS A DAY? He used to practice about 30 minutes a day. No problem! I have a rule that I never tell someone in my house to stop playing a musical instrument. I don't know how to survive this drumming thing anymore. I need a solution. The flip side is, he has become a very, very good drummer and it is his passion in life. I am a classic case of someone who tolerates, tolerates, tolerates and then explodes...whether it is chronic pain, chronic rape, or chronic drumming. At least now I am aware of it.
I need to keep working on his. I think I'm getting to the thing I was trying to figure out. I am going to make an genuine effort to fill myself up with nurturing 'stuff' in an effort to keep my sympathy and compassion accounts filled up. It's not easy living with A right now. It's like I had another baby, only this baby is 12, and is a bit mentally ill right now. And I haven't even mentioned his GI problems.... :-)
I get myself into trouble by thinking "hey, it's not supposed to be like this." Actually, I don't think that is true, even though I frequently think it. It's a fairy tale that we bought into that tells us that we aren't supposed to have pain. Life is suffering, sometimes, and there doesn't seem to be any way around that. Buddhism would tell me to let go of my attachments and I'll reduce my suffering. And, it's true. I believe my problem attachment at the moment is to the idea that my son shouldn't have to be dealing with this. And possibly also that I shouldn't have to be dealing with this. Gotta get over that.
Notes
(0) Parenting is a continuum from Critical parent ----> Nurturing parent. How I learned about this was from a guy I met in a bar, in Baltimore, I believe it was. Eric, his name was. He was in the middle of a lawsuit against Priceline.
(1) Lyric from Pete Townshend's "Naked Eye". Great song.
(2) See my old friend, sociologist Candace Clark's work on sympathy. She published a book about here.
(3) Yeah, I know the "real" definition of 'decimate'. However, there are at least two other definitions now that are accepted, and I prefer to use them. I'm only partially a word snob.
(4) At first, I thought I made this term up. I am all about existential rage. But then I googled it, and it turns, no, of course I didn't make it up. I ran across this line: “I'd like to express my existential rage through interpretive dance.” I guess my own existential rage gets expressed by getting angry at my family and random drivers :-) I might consider interpretive dance, though.
(5) Samples:
Google+ is like the random high school party you show up to and no one you know is there.
Google thinks that Facebook is Coke and Google+ is Pepsi, but it's actually RC Cola.
For those of you who have a hard time conceptualizing what a black hole is, log on to Google+
By the year 2050, there will be more social networks than people.
Google+ totally stole the idea of circles from Dante.
(6) Post-traumatic stress disorder. In which, I overreact to any noise, or event. I am unable to relax. I am just waiting for the news that something terrible has happened. I panic when the phone rings. I jump on all fours like a cat at any unexpected sound. I'm going to have to believe that it is a rational response to what happened to him over the last six to nine months, and give myself (and him) a year or so of recovery time.
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