poly and disability (part 1)

I’ve started listening to all the poly with disabilities podcasts (and snippits of podcasts) from Polyamory Weekly. The first time I tried, I got off to a very rocky start. At the beginning of PW 420, this was said by Minx (transcribed from the episode):

When you have a disability and when you are first into poly, you have to accept a loss of control. When you have a disability, you understand that there are things you want to do, and you can’t control the fact that you’re just not going to be able to do them, maybe never, but maybe sometimes. And with polyamory, you have to accept that you don’t have control over your partner, and sometimes you don’t have control over yourself, your emotions surprise you sometime, and your responses surprise you sometimes.

I am not exaggerating when I say I had a small nervous breakdown the first time I heard these words. I’d just parked the car and was walking home. When I reached my front door, I sat on the stoop and sobbed furiously. I felt both enraged and incredibly sad. I ended up canceling my plans for the weekend, and telling Jon that I was working through some shit and would need a lot of alone time.

After a lot of thinking, I realized what was so upsetting to me about hearing that description.

When I chose to live polyamorously, the mental shift for me was in many ways minor. As a monogamous person, I had very little interest in controlling my partner. I was someone who argued against all the million little coercive behaviors that many people practice and call normal or even good. Shit like telling your partner that, since you aren’t friends with any of your exes, s/he can’t be friends with theirs anymore. Or like telling a partner that s/he can’t wear certain clothes or must always be clean-shaven. Telling a partner (no negotiation, just laying down the law) that if the partner doesn’t do X (or a hundred little Xs), then it’s a sign that their partner doesn’t really love them.

So that first part, that polyamory was about giving up control, that was bullshit to me. The only thing that I gave up become by being polyamorous was the illusion that I had control of my partner’s choice of sexual partners. Realistically speaking, when I was monogamous, my partner could have been banging the entire block without me knowing it. I don’t think that any of my partners would do that. But they could have been. And I could have been happily ignorant and believed that our monogamy was a control that made their sexuality only accessible to me.

When I became polyamorous, I already had given up the illusion that I had control over my emotions. Depression will do that to you. So will living. Hearing about your best friend’s raise, and being surprised that instead of totally happy, you mainly feel jealous and inferior. Seeing a relative’s wedding photos on Facebook and feeling sad and wanting your own wedding, instead of just feeling happy they had theirs.

There was no illusion of control for me to lose when I became poly.

(Side note: Is this a real thing? I feel very awkward asking, but do people walk around thinking they have control of their partner and/or of their own emotions? Do most people actually do that? Do I live in some weird bubble where I refuse to accept either of those as true, necessary, or healthy but most people feel totally differently? If I do, I’m going to just stay in my bubble. I like it here. It smells nice; there’s less bullshit.)

When I became physically disabled…you know, the one thing I did think I’d be able to control for a long time was my body. Oh, it didn’t always cooperate. There were those times when I pushed too hard and had to rest a few days because of sore muscles. Or I got small injuries in tumbling class. Or when I’d eaten enough but my stomach was still begging for another slice of pie, another scoop of ice cream.

But my body mostly cooperated.

So I expected that until a long, slow, decline in my 50s, I’d always be able to do basic things, like pull up my pants myself. Walk up stairs at a reasonable speed. Sit in any position, in any kind of chair, potentially for hours at a time and feel stiff at the most. Generally not be in pain. Be able to walk easily from home to the car, from the car to work. Be able to walk around grocery shopping and pushing a cart.

All those day-to-day things that many people do every single day without a second thought.

All those things I couldn’t do anymore. Because my body betrayed me. Because my body had become injured in a way that defied treatment, defied diagnosis, and hurt – sometimes for weeks at a time. Hurt enough that sometimes I’d realize that my throat was dry because I’d been murmuring to myself “please stop hurting, please stop hurting, please stop hurting…” for who knows how many hours.

My body was treating me far worse than any partner had. My body was controlling me far more than any partner. It made me spend money on things I didn’t want (doctors visits, MRIs, CT scans, other tests, medications). It made me stay home when I wanted to go out (too tired, too much pain). It distracted me from my loved ones with constant demands for attention, as I tried to alleviate the pain.

That pain! My body abused me. It hurt me. Even when I wasn’t doing anything wrong, when I tried to stay as still and as quiet and as unobtrusive as possible, it still hurt me and I couldn’t make it stop!

Unlike another person, unlike a shitty friend, an abusive partner, I couldn’t break up with my body. I couldn’t pack it’s things up, change the locks, and tell it we were over. I couldn’t fade out of its life and look for a new body that treated me better.

I was stuck with this body. This abusive, pain-filled body that I couldn’t control.

Before I continue, I should say that I listened to this podcast after Jon and Lora’s break-up, after her stuff was gone, and Jon was talking to her a lot less. Lora was gone from my life. Maybe not completely, but we were never going to live together again, unless I agreed to it. Jon had taken personal control of their toxic relationship by breaking up with her. Coming home no longer filled me with dread and worry about what shit she was going to pull.

Waking up to my body often filled me with dread. I never knew what mood it was going to be in and how much it would hurt me and limit me that day until I woke up.

And I couldn’t get rid of the damn thing.

So for me, this opening to the poly with disabilities episode was incredibly painful and completely put me off of listening to the rest of the episode. I couldn’t, in fact, because first I needed to process all the rage and sadness and misery that the beginning evoked in me.

I have listened to a lot of Poly Weekly podcasts. I typically love listening to Minx and Lusty Guy, and even when I don’t agree with them, I nearly always understand where their coming from, and believe their advice is solid, if not always the advice I’d give.

But this podcast was a major fail for me, at least at the beginning.

Or maybe, if I want to be optimistic, I could say it was a blessing in disguise. It did cause me to process a lot of feelings about my body and my disabilities that I hadn’t entirely processed. It evoked a lot of pain and anger and fear that I didn’t know I had inside me.

Writing that feels like I’m trying to spin a silver lining out of a flood cloud. I honestly don’t know if I ever really *needed* to process all those feelings, and in way I did. I’m sure it couldn’t have hurt to get through them, but at the same time…it was more pain at a time when I had had beyond my fill of pain.

But that’s how life happens sometimes. And I guess that’s when one can learn what happens when one is completely out of handling pain, and still has to process more.

At any rate, I certainly don’t blame Minx for what she said or feel irreparably harmed. I do think that different language and a different comparison would be much better than the one she used. Or maybe no comparison at all was needed, and it would have been better to simply talk about the loss of control that a newly developed disability brings. To try to tie it into polyamory felt like a real stretch to me, and not one that illuminated anything.

That said, I still listen to Poly Weekly (or else I wouldn’t be about to write several posts about all their disability shows!). I did take a couple of months break after that podcast. Mainly because if listening to part of a podcast could evoke such powerful, painful feeling inside me, I didn’t want to risk another occurrence of that happening until I felt like I was in a stronger place.

I did get into a stronger place. I talked to my therapist. I joined a chronic pain and disability support group. I did a lot of journaling. My physical therapist, my doctor and I redesigned my physical therapy structure, timeline, and goals. When my blog was so quiet in November and December, that was a large part of what I was doing, what was eating up much of my time.

The end result was good, even if getting meant navigating through one of the most physically and emotionally painful periods of my life.

And now, from a better place, I’ll move on to talking about the other shows that featured some flavor of poly with disabilities. I’m going to start from the first one to mention disabilities, episode 94, and then work my way forward.

Stay tuned for more!


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polyamorist, cat-lover, hopeless optimist when I'm not being a firm realist.

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