If I don’t see you

 

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On Saturday I bought five books of poetry, a book about psychoanalysis, and a book about sailing from the annual library fundraiser. It was hard to get through the transaction. I felt like my skin was peeling off and I was casually attempting to hold it back without being noticed as the library volunteer asked me to enter my pin number. Smile. Say thank you. Say have a good day. Take your bag. Walk away. 

My impulse is to hesitate before each action and contact. I don’t like to touch things without considering them first, without preparing myself. So I have to remind myself don’t hesitate and try not to wince at the contact with my paper bag full of books. Each minor agitation tells me I shouldn’t try to walk home. It doesn’t feel minor. And I was right. Just the sounds in the parking lot made me feel panicked and vulnerable. How could I have crossed even one busy street?

It’s exhausting to try to appear “normal” in this state. While I waited for a friend to pick me up from the library, I tried not to cry and shake. I tried not to let my hands coil and tangle. I tried not to stare blankly too long in any direction or let my eyes dart around in obvious distress. I sat where only people driving by would possibly see my face. The sky was darkening and the breeze hitting my skin smelled like rain.

I texted R (sort of) because I knew he would tell me it’s okay. He did. It helped. You’re safe. You’re okay. Stay here. Sit. Don’t cry. Wait. You can trust your friends.

Experiences like this used to drive me to isolation at home. Days or even a couple weeks would go by and I’d never leave the apartment without R or a close friend. Not even to take out the trash or recycling. I would avoid making any solid plans with people and feel tremendously guilty if I needed to cancel. I tried not to interpret the sound of their disappointment over the phone as annoyance and criticism. I tried not to imagine it if someone texted or called them on my behalf.

It’s easier now to take each day at a time and to recognize that the episode will end. I can’t go for a bike ride when it’s over, but I could go for a walk or wash the dishes. I can make dinner and enjoy the company of a friend.

My mom often used to tell me that as a child one of my favorite things to say was, “I can do it.” I said it with irritation, according to her, as if I was annoyed at the mere suggestion I couldn’t. As if I wanted to prove myself.

As I try to come to terms with being disabled, I frequently have to reaffirm for myself that I can do things. I’m under the impression that this is really common experience for disabled people (and I suppose very young children). How do you acknowledge and make accommodations for your disability without it ruling your life? How can I help other people see the full range of my capabilities while also not misleading them about my condition (which always leads to more complications, inconveniences, and worry)?

Quitting school was not a solution.
Isolation was not a solution.
Hiding was not a solution.
Lying was not a solution.
Stubborn pride was not a solution.
Pretending I would just “get better” was not a solution.

They’re still not solutions.

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In the past two months I’ve sold more art and writing than ever before. I’m engaged in two separate collaborative projects and hoping to begin work on planning the next Cat Party exhibition. There are other ideas circling my mind that I haven’t had time to work on yet. My enthusiasm and curiosity has not waned at all.

I guess it’s not something you say. I am doing things to enact the belief that I can still do things. Otherwise I don’t know what I look like as someone who can. I can’t see anything now. I am feeling around in the dark for my well, for the words to connect and for my world to inhale deeply.

 

To caress my day

Discovering and re-discovering neighborhoods.

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We had a few days of warmth so people were out mowing their lawns, sitting and chatting on porches, smoking on stoops, hanging hammocks, and happily walking their dogs instead of merely tolerating the ritual. As it often does in northeast Tennessee, temperatures dipped down to freezing overnight and a lot of flowers died. In early spring everyone is hopeful for new growth, but we all walk around knowing the flowers and buds may die tomorrow. I have sometimes tried to coax the vibrant green beginnings of daffodils back into the ground. Just wait a bit longer. But they are just as eager as we are to feel the sun’s rays.

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I don’t think I understood before that there’s a difference between knowing you could lose what you have and being afraid you could lose what you have. When you know something could interrupt your life and remove people or things you value, it’s easier to feel the weight of a moment, even a very small one. You can appreciate it. When you’re afraid you’re going to lose a loved one or your home or your hair, etc. then you’re just collecting moments to enhance the melodrama of potential loss. You’re not present with those things.

As much as it hurts, that fear is a buffer between me and the real thing. It’s a safety net between me and the ferocity of my love, the vulnerability of existing in the universe.

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My work these days is both enriching of the present and of the preparatory kind. I am starting to feel really restless and I cannot bring myself to say, Just wait a bit longer.

Birthday Thoughts

I’m skipping the Art Domestic post this month because today happens to be my birthday.

Quite unexpectedly, I woke up sick this morning and spent half my birthday in bed. Also unexpectedly, this did not particularly upset me beyond the physical discomfort of expelling bodily fluids a little over-enthusiastically. I did what one might do for their birthday anyway — I read, watched something entertaining, napped, and pet my cats.

I also spent a lot of time thinking about my relationships, perhaps because my Facebook page was blowing up with messages and well-wishing comments, or because my husband bought me a really moving album that makes my soul tingle like its about to be struck by lightning, or because my dad called and I received flowers from my in-laws. And about 10 minutes ago, I received an email from a very dear friend of mine.

It tipped me over from thoughts without shape to word-shaped thoughts. Thoughts that reflect a wealth of feeling I am most often incapable of expressing. A sincerity that I am often questioning into exhaustion, and for the moment I have decided to follow without reservation.

While reading Hicksville this morning, I came across a passage in which the character Grace is described: “I thought her strong – hardened, wiser. But now I think it was fear: the appearance of strength people have when they’ve grown accustomed to fear.”

It struck close. I paused and then kept reading.

As it often happens when something is haunting your thoughts and feelings, other external situations and moments point back to it.

When I think about my relationships with people that I love, it seems that primarily what may make them difficult to love or to feel loved by is the prevalence of fear. Fearful people are difficult to love, find it difficult to love. The performance of unwavering strength and control is too exhausting yet self-sustaining to allow much spontaneity.

And what is love if not spontaneous?

I didn’t really know how afraid I was until my life stabilized and I was with someone who loved me fearlessly, recklessly. The tools I had sharpened during a decade or so of fear and uncertainty culminating in painful explosive bursts were not needed with him. I still tried to use them, and he pointed out the failings of my self-designed certainty, which also reflected the issue in friends and family. I found myself in a new context and it was, at first, crippling.

Only at first.

I have a lot more love in my life than I used to, in part because of psychoanalysis and knowing some truly amazing people, but also because I have come to want to be more than just strong (read: fearful). I want to be brave enough to love. I want to be brave enough to be sincere.

No one can give that to me. I can’t buy it for myself. And having it once does not mean I will have it always. I have to work at it, constantly. Thankfully, the shifting context in which I shape myself allows for more bravery and sincerity. It has to. It’s dark and uncertain.

And I have never felt a deeper appreciation for other people in their nuanced, weird, uncomfortable, unknown, fearful, vulnerable, courageous beauty. I won’t be able to keep this moment, but I have it now.

Thank you.