digital life for an analog girl, or trend-busting the past

I’m going to be adventurous here and talk about personal stuff I don’t usually discuss without making jokes and dissembling. I’m just going to be straight about it. Eek.

Currently, facebook and twitter and email are my connections to my friends, to my “support network.” In daily life, it’s just Geoff and me right now going on two months in New York City, searching for a diagnosis and some sense of what the future could possibly hold.

I don’t want to tell Geoff’s story, but I need to pay attention to mine. And that’s hard for me to do – it feels self-centered. But I also know that if I don’t start figuring out how to care for myself, too, then… well, As bad as things are, it’s going to get worse.

Most of you know, I think, either from knowing me in real life or through my other blog, that I have PTSD. So I have bad-ass triggers, most of which I manage by avoiding things that remind me of stuff. I avoid so much that I’m considered disabled. Which sucks on so many levels I don’t even know how to describe it. I was misdiagnosed for years and subjected to sub-par medical care, resulting in several unnecessary hospitalizations and lasting, severe side effects from medications I should have never been on. I miss working. I miss contributing. I miss the adventure of the bigger world.

It’s been very hard to dig out from underneath all this. But I had been doing a really good job of it, until about a month ago.

It’s hard to be around people. It’s hard to socialize. In fact, one of the gifts of social media is that I can “connect” — but behind the safety of my computer in the security of my home. Studies have noted that as damaging as social media can be, for those of us with disabilities, it can be a life-saver.

My history is filled with stories of my parents wrenching me out of schools, towns, friendships – any of my own connections – without warning. I was very isolated, and the consequences for disobeying them, even when I knew they were wrong, were so severe that I couldn’t risk it. The chaos and upheaval, not to mention the violence of these years is indescribable, and it didn’t end until my early 30s.

It only ended because they tried to take my daughter from me. See, my girl and my husband are more important to me than my parents, and they found that unacceptable. So they tried to take my family away – in court – so that nothing came between them and me.

They lost.

My first husband was even worse than my parents. And I had to take him back to court again in 2012 because despite the passage of time, he still follows me when he thinks he can get away with it.

So, what happens historically is I build a life and it gets taken away.

And, although the circumstances are very different today, it’s happening again. My in-laws are doing a great job taking care of my daughter and my dog – but still, someone else is taking care of my family. They are also doing projects on our home – so it can be sold. So again, I’m losing my home. My husband’s health is getting worse by the day. It’s not a figure of speech. I can watch him deteriorate. My best friend is barely able to be “present” with me anymore.

Now, this may change with therapies. And selling the house and moving to an area with better medical care is clearly a good thing. And my in-laws are being – let’s call it what it is – rock stars right now.

The situation is very different from the past. There is no malice, no power-play, no domination game, no bad guy. In fact, not only are the “bad things” not present, there are a TON of wonderful things that are present that I’ve never had before. My in-laws’ support. Friends -! I didn’t know I have so many friends! And everyone has been quick to help in ways beyond my imagination. I’m stunned by the generosity I’m receiving. I actually don’t know how to handle it.

But the loss, especially the loss of any amount of control at all, feels the same.

I’m trying to remain in the present. I’m trying to care for myself, but it’s hard. One of the awful things about living with trauma is that you always know that “it isn’t in your head.” These things happened, and there’s nothing preventing them from happening again. The ugly underbelly of life is a real thing, and there’s very little separation for any of us between safety and calamity.

I need to remember to do the things I enjoy, to nourish my soul so I can care for others. So, today, I forced myself to marinate some beef for shawarma. It felt good. I made myself sit here and write. Okay, that’s not bad. I might take a walk. That might be okay, too.

Baby steps. Always. Just with bigger feet.


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