#dissociating throughout the nights on my weekends is common

[catherea]

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[mortreport]

Guest Post: Pain’s Plus One

I met Derek a little over two years ago and fell for him very quickly. Navigating the complexities of chronic and mental illness within a relationship is incredibly difficult. Derek wrote this after reading my post, “Drowning Never Looks Like Drowning.” I’ll let him take it from here:

Derek:

My girlfriend, Ace, has a chronic illness called Ehlers-Danlos Disease (EDS). The collagen throughout her joints, her organs, her heart and blood vessels, and her neurologic system is abnormal. Each of her body systems malfunctions in its own unique way. Ace’s EDS demonstrates itself most poignantly as joints that partially or fully dislocate easily. Considering the number of joints her beautiful body contains, and the fact that dislocation causes inflammation, which lingers, she’s in more pain than a woman giving birth every moment of her life. I cringe when I make her laugh because it sets her ribcage popping.

My career as a veterinarian prepared me for some aspects of living with Ace and her pain. I understand the mechanisms. I’ve helped manage not only chronic pain, but also the relationships that accompany it. My brother is disabled. But these past two years with the love of my life have brought a series of intense lessons in living with an illness that sucks all the time and that will only ever get worse.

Ace wrote recently about how nobody really understands her pain, and how isolating that can be. I was moved to try and tell her she wasn’t alone. She asked if she could share what I wrote to her. I hope it’s helpful to other partners-to-pain and folks who haven’t had lives run by chronic pain.

I.

I cry infrequently these days.

Less since the brain meds that somewhat dimmed my anxiety. Less as the sting of my stepfather’s death subsides. Less since the heartaches over hurtful women have faded mercifully into memories of lessons learned.

I’m not crying now, but just. My throat is thick and painful and there’s pressure behind my eyeballs. My love, my partner, is in constant pain. I can’t stop it. I can’t make it better. I can’t soothe her at all. 

If I could, I’d crawl inside her skull and sit with her mind, hugging her close while we huddle in a foxhole of dissociation, dispassionately watching the barrage of explosive impacts of electrochemical mortars landing incessantly in her brain from a traitorously painful body. I’d take on extra watch duty while she slept if she let me. I’d light her joint for her if she didn’t. We’d pass it back and forth wordlessly, getting numb while the searing detonations flashed orange and yellow and hot across our vacant eyes. The weed would make us goofy and I’d tell her everything I love and admire about her and she’d tease me about forcing metaphors when I write.

She’s good at laughing through the pain. Or rather, she laughs often despite being always in pain.

I rarely see her cry. I know it happens because she writes beautifully about it. She writes beautifully about everything. But there’s a place she never shares, even with me. Though... it occurs to me now that it might be especially with me.

Late one night almost two years ago, lying mostly naked and akimbo in the semi-darkness on the aquamarine quilt that her mother gave her, she called this unshared part of herself her “oubliette depths”. She was new to me at that time, as was the word. I asked her what it meant. “It’s a dungeon accessible only through a door in the ceiling,” she answered, staring upward, surely tracing the outlines of an invisible metal door on the ceiling. I stared through the ceiling and thought to myself, “This girl is really serious about her metaphors.”

II.

She says I don’t get it. She says anyone who hasn’t lived it can’t get it. She says even people who have temporarily lived it don’t get it. I want to tell her that she’s wrong, that I do get it. 

When I’m debilitated and sweating with a migraine, the pain obliterates my cognition and I think to myself, “Holy shit, I fucking get it.” Everything in me shuts down, and I become a sparking, angry, unpleasant electrical wire of misery. Those dark moments feel both immediate and infinite. The pain is everything, and it will always be. It’s impossible to look outward or forward. Empathy dissolves into a non-concept. There is only me, alone, trapped in this body that doesn’t feel mine. The world feels small and permanently awful. Nothing seems important. Life seems worth letting go of.

I’ve had pain that made me consider ending my life. Pain that made me think methodically through the details of how to do it. Planning suicide is sometimes the only thing that helps. If I had that pain all the time, I’m confident I’d end my life. But then my migraine fades, and I feel like I’ve been born again with a brand new body that can feel good, and I instantly forget.

I want to pull my heart from its home and hold it in my hands in front of her and say, “See? Look here. I get it.” But I know she’s right. I don’t get it. My biology protects me from getting it. Evolution has designed my brain to remember pain without re-experiencing it. I really do fully comprehend in the deepest parts of my heart what she experiences every minute of every day, but my brain protects me from that knowledge after my pain ends.

The best I can accomplish is being pain’s plus-one, permanently a spectator to her suffering, relegated to watch from a distance as her battle rages, then to stand by impotently when the artillery goes quiet and she emerges to stoically wander the scorched no-man’s-land of her body. It’s a beautiful body, and I try to reach out. I want to reach inside and carry away her pain, but it’s littered with landmines and my bumbling affections sometimes trigger an explosive chain reaction. I ask what I can do, knowing the answer is always the same. I try to anticipate, to give room, to prepare, to work around, to console.

But always from the outside.

III. 

A friend of mine once said that every relationship has a reacher and settler. I joked that the best relationship, then, must be the one where both people feel like they’re reaching.

Since the sauvignon blanc and bangers and mash we shared on our first Tinder date, I’ve felt like the reacher. Sometimes I reach down her Oreos and pour some milk into one of the smaller glasses for her. Smaller because it’s easier on her hands and smaller because her throat and GI tract often keep her from finishing a meal.  Sometimes I reach into my pockets and ball my fists while I watch her stubbornly lift groceries out of the car instead of just letting me take care of it. She says it’s okay, and I need to respect her autonomy, but it’s one of the few things I CAN actually do to help.

But always, I reach to match her stunning, impossible fortitude. Late one weekend morning in our new apartment, lying mostly naked and akimbo in the brightening sunlight under the aquamarine quilt that her mother gave her, I asked if she needed to stay in to recover from the week. She started to roll out of bed while she replied, “The meatcage is gonna hurt either way, let’s go make some memories.” I admire how consistently she reaches out from the isolation of her pain to connect with people. I’m grateful that she reaches out from her oubliette depths to make me feel so loved.

All couples live in separate realities, pain just makes the separation more stark and forces adjustments common to all relationships. Pain isn’t always intuitive to account for, so we have to communicate about what’s going on and what she needs. Even when we get it wrong, we learn about each other through the friction of unshared experiences. Her interests haven’t just broadened my taste in music and TV (Frightened Rabbit and Buffy the Vampire Slayer, if you’re curious), her relationship to the world has forced me to expand mine in order to live in it with her. I’ll reach for her as long as she lets me. Pain sucks, but my life is richer being its plus-one.