You, Me, and the PTSD: Relationships, Feeling, and PTSD

December 27, 2012: I posted this last week, and then, er, took it offline because I wanted the time to tell my family about what was going on… And did so. Thanks to those of you who have sent lovely emails and comments regarding this post! x

January 22, 2013: Reposting this because the above took the ability for people to leave comments away… Which I was emailed about. Thus, posting it this time and leaving it be… x

To say I’ve done more crying in the past year than any other year would be both the total truth and a total lie. A lie, because I’ve cried many, many times a year for many, many years. The truth, because I’ve cried many, many times this year. Like when I’m watching television and a not-even-very-interesting-ad comes on featuring a really dumb animated staple or choosing which soup to buy at the grocery store or when I’m just walking down the street thinking about nothing. I find tears streaming down my face and suddenly I’m trying to wipe them away quickly before anyone notices. In fact, I cried not too long ago to Top 40 radio while in an airport shuttle van with 2 strangers.

One minute I was fine and, then one catchy hook later, I was a blubbering mess. I texted a friend and asked, “WTF is wrong with me?!” She said I should put on my sunglasses and maybe they’ll think I just broke up with my boyfriend. If only it was that simple.

But, no, it was stupider than that. Way stupider. I was crying because I felt the lyrics. Like, felt them, like had emotion. I can’t even remember what song it was, it was probably Justin Bieber or something else vaguely vomit inducing. See, for most of you, you know what it feels like to feel. The touch of someone’s hand, a brush against a tree branch, the soft down of a fluffy puppy, the warm solace of a cup of coffee. I mean, I’d feel all those things, but it would be like there was still some sort of barrier between us. It was never quite authentic and to the bone; there was always something not quite right.

As I wake up this year it’s like someone flipped a switch just underneath my skin. Or like I just took off a protective suit. Welcome to PTSD, where things get buried and hidden and closed off and protected and are worn away until there is nothing left of the real you. The “you” before. Well, that’s what it’s supposed to be like, except there was never really a “before” for me, just a slow awakening to the idea that something wasn’t right. Unlike many traumas, mine was no one’s fault. It happened when I was so little that there was never a “before” or an “after.” Just a weird life where I never really understood what people meant by feeling things.

So, it was no surprise that it wasn’t until I found knitting that something changed. A complete shift, in fact, as I noticed the tactile and began to focus on positive choices instead of negative ones. Why? Because something about the feeling felt good and made me feel less, well, dead inside. Funny how we can’t feel so we drown out the confusion and hurt and anger with various substances. And, subsequently, we make it much much worse. But we lie to ourselves and say that we really can feel while under these substances, and suddenly that fake sense of feeling becomes what we think is “real” feeling and life gets turned upside down.

Fake becomes real, because fake is better than nothing. At least that’s what we tell ourselves. Repeatedly eating that as truth instead of seeing that it’s like using a mop to soak up a flood… Because the real goodness, the real feeling isn’t being unearthed, it’s simply being chased after without any progress. Because in order to get to the real feeling, you have to do a lot of digging first to set it free.

It was through knitting and making that any connection at all became even remotely possible. (Leading me to discover that something was wrong in the first place.) I could feel the yarn run through my fingers because my anxiety was down. Depending on which yarn I used, I could feel it sliding through my fingers easily or scratching them a bit as it flowed through them. As knitting brought me directly into the middle of what Mihaly Csikszentmihalyi calls “flow,” there was peace. I could feel because I wasn’t worried about what would happen if everyone knew what was wrong with me.

That I was the girl who couldn’t feel correctly, whether it was a sip of coffee or a kitten or a kiss. This deep dark secret that made friends look at me weird if I told them, that made romantic relationships miserable and fraught with anxiety and disaster and panic, and that, at its very worst, made people feel sorry or pity for me because I was so very unlike everyone else. A freakshow. A weirdo. An alien lost among the normal ones.

Until this year, when I was diagnosed with PTSD. When all of this made sense, and I was no longer alone and weird, and I was “found” and weird, as there were others who had the same thing or at least had researched others (other freakshows?) that had the same thing. Okay, so maybe I was hella weird, but at least I wasn’t hella weird alone. That’s got to be better, right? Right!??!
I devoured books like Michele Rosenthal’s Before the World Intruded (in the hopes of discovering a similar story), Robert Scaer’s The Body Bears the Burden (to figure out WTF was wrong with my body), Diane England’s The Post Traumatic Stress Disorder Relationship (to figure out WTF was wrong with my inability to keep a relationship), Peter Levine’s Waking the Tiger (because at this point I was ready to just give up and accept life as a freakshow), along with looking at various online forums (ptsdforum.org) and reading a heap of info online about veterans and PTSD.

But I’m not a veteran, so I had to strip out anything related to combat and just let it all sink in that this was really happening. That there really was a problem. That it wasn’t just my mind. It was everything. How I looked at the world through PTSD glasses, how I felt the world through my special invisible suit of numbness, how I related to people because I felt they couldn’t possibly ever “get” me. Ever. Ever. Ever.

The biggest bummer of all was how insidiously embarrassing it all was. I couldn’t feel, I was chronically hopeless at relationships, I was getting older, and was pretty sure I was going crazy. I had this weird horrible sounding thing that made me feel separate from the entire world and brought hypervigilance, depression, anxiety, anger, and crappiest of all, numbness. It was like being trapped in cotton wool, unable to see an exit while having a panic attack trying to find one. A mid-range type of hell that still kept me with a pretty intact sense of sarcasm and humor, except there was no one else that actually had lived the really rough stuff. No one that said, “I get it.”

So, after spending decades of being numb and feeling alone, I now had a “disorder” that made me feel more alone, more numb, more depressed, more anxious, and more lame than I had ever felt before. (Are you freaking kidding me?!) And this was before you got to the inappropriate crying, 8 million apologies, and occasional random meltdown. I was beginning to see why either a) no one wrote about this stuff or b) everyone that did was firmly in a long-term relationship. I.e., it’s not attractive. However, eventually, I found that with a little extra time and deep breathing, old meltdowns became opportunities for open-hearted honesty and the tears became space in which life was fully lived. (The over-apologizing I’m still working on.)

Then, in a sense, I weirdly began to fully lucky, i.e., how many people know what it’s like to fully crack your heart open and fully connect with not just other humans, but also everything you come in contact with from coffee to q-tips? Now, if I love you, I will tell you instead of worrying about whether you will say it back because I am so ecstatic to feel such joy; I will fully listen because I’m so happy to feel in your presence; and I will fully cry with you when you’re hurting because I can feel the pain. Not because I’m any different, but because I truly know what it’s like to feel nothing, I am in love with all that I can feel now.

So, then, with all this, what’s a girl to do? I think the first thing that girl is to do is to share. Because the first lesson I’ve learned about thinking that you’re the only one, is that that is never the case. There is always someone else. And in this case, there are thousands of someone elses, most of them also feeling trapped and freakshow-y and terrified.

But, wait.

Why am I writing about this here? Because it’s also related to craft and activism, to craft, because it is a reminder how the tactile can be healing; to activism, because, it’s creating awareness to something that probably someone you know has. Think they do? Then share this. Why? Because they’re probably feeling broken and alone and scared and terrified and like no one on this planet could possibly ever understand them. But they’re wrong.

When I first wrote about this, I was terrified to be sharing so much about something so personal. However, eventually you get to a point where that doesn’t matter anymore, what matters is letting someone else in your position feel less alone. That’s one of the tenets of craftivism, sharing your opinion on something in a crafty (or in this case, creative (writing)) way. About taking what’s inside and putting it outside for others to see it, ask questions, form their own opinions… and if you’re lucky, learn a bit.

Happily, I’ve come much farther in my fight to feel, to be “normal,” to connect in ways that have been near impossible for many years. I can feel the wrinkles in the hands I hold, feel the warmth of that puppy’s belly and its heart beating under its chest, and most awesomely, I can now really feel the rain. The way it trickles down my arms over tiny hairs and creases in my elbows; splashes against my face and down my eyelids; and weighs down my hair with each teeny tiny drop. And it feels delicious.

These days, I welcome the tears that come down my face and don’t worry about the sunglasses; I embrace them because each one means that I’m feeling more and more as time goes on. That my heart is breaking open as time passes on. That, finally, not am I not just the only one, I am
becoming one of the “normal” ones.

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3 Responses to You, Me, and the PTSD: Relationships, Feeling, and PTSD

  1. Tom December 27, 2012 at 4:16 pm #

    Hi Betsy – I don’t have anything wise or even useful to say about PTSD, particularly your PTSD, but I thought you might like to know that in the UK, there’s a crew who’ve been offering support for activist PTSD sufferers since 2005 – Activist Trauma Support.

    Myself, I’m an acupuncture student, currently working on a research project about the best use of acupuncture for PTSD.

    I just wanted to leave word and wish you well, welcome you back to the rain, give a big ‘Yes!’ and wish you luck. Thanks for writing this.

    If you don’t know it, you might like my partner, Rima’s, blog.

    Thanks again.
    Tom (@coyopa)

  2. Kaystir December 27, 2012 at 5:39 pm #

    I do not have anything helpful about PTSD to say either. but I can say that I am very happy for your break through. You never seemed freaky to me. I enjoyed working with you at the yarn store and watching you move away to DC and fight for your dream job. I have admired you as a strong independent woman and I will continue to do so.
    Kay

  3. Step Schwarz December 27, 2012 at 5:58 pm #

    Thank you for sharing, Betsy. Keep fighting!

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