What I Don't Want, But Can't Have

I should have been more emotionally prepared. I should have taken a few deep breaths, but I didn’t. Instead, I walked into the Frida Kahlo Museum, excited and giddy to see her art in person and the home she lived in without thinking about myself. That’s usually fine, but not this time.
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Frida Kahlo was massively disabled. She had suffered from polio and she was in a bus accident that left her impaled through her side and into her uterus, leaving her unable to have children and bedridden for lots of her life. She was a force, but she was in pain constantly. She was passionate, but she was sometimes insecure. A beautiful collage.

The more doctors and art historians look at her beautiful paintings, the more convinced they are that she suffered from fibromyalgia. Given the severity of her injuries, it wouldn’t be a stretch.

My partner was the one who made me aware of this. He had told me this well before stepping foot in the museum. I should have been prepared.

I have fibromyalgia.

My everyday is someone’s worst nightmare. The pain I feel was unmanageable until I finally received medication and help that lessened it significantly. But still, I feel pain everywhere everyday. And most days I don’t think about it. Most days it’s just another part of my life. But when I walked into that museum and saw her paintings, saw the way she set up her home to live her life, my pain increased with every cane-assisted step.

When I am in emotional distress, my pain increases exponentially. When my partner and I fight, we have to dance around the argument gently, so as to not increase the pain, but I am a passionate person. This hardly ever works. Usually, I try to last as long as I can, with my head held high in defiance of the pain I feel, until I can’t bear the pain anymore. My partner cares for me then, despite our mutual anger. It’s embarrassing and endearing and infuriating to be so crippled by the emotions I tried for so long to understand. But so it goes.

Walking through the museum, I felt dread. I saw an example of what my life could be like, even if I reached absolute greatness. No matter how high I flew, the pain would still keep me tethered to the ground, pulling me to the earth violently whenever it wanted to. I was going to be in pain for the rest of my life, just like Frida. Nothing saved her.

My God, was it too much. I shouldn’t have gone. I shouldn’t have seen her life in person or her works with my own eyes, unadulterated by space and time. But maybe I had to.

I left feeling all the existential dread I try so hard to avoid. Even now, I sit here writing and feel the weight of the rest of my life on my already aching shoulders. All the things I wanted to do with the rest of my life are in the shadow of this never ending pain, affected by it. My dreams are at the mercy of my body, which feels like a betrayal after all I overcame to be who and where I am.

It’s ridiculous how much I think about all the things I can’t do, but never wanted to try anyway. My partner climbs literal mountains, which is something I have no interest in doing. But dammit if I’m not angry that now I don’t have the choice. I never wanted to ski, or jump out of a plane, or birth a child, but I am enraged that I’ll never have the choice. All I ever wanted to give myself was the choice to do anything and I failed.

But it’s the child one that gets me the most and I hate that it does.

Bearing a child is the most natural thing a woman can do. I applaud every mother who has carried a human in her womb, knowing full well that it could kill her. It probably wouldn’t, but it could. It’s natural, and I’m sure it’s beautiful, but I’ve never had a desire. I’ve never felt a longing in my womb. Maybe I was too young, because I’m still young. Maybe one day I would have wanted to know that part of living, but now I never will.

People call me selfish for not wanting to pass on mine and my partner’s genes, for not wanting to fulfill my “God-given purpose,” but both my partner and I have decided that it wouldn’t be fair to pass on our mental afflictions to another human for the sake of sharing genetics. We both know that blood is not the ultimate connection in this world, so we’ll welcome people into our home in whatever way they may need and we’ll call that family. Besides, he was 12 pounds when he was born.

Seeing Frida’s pain and the way she managed it was… too much. The wheelchair in front of the easel, the day time bed, the night time bed, the way her style was meant to distract from her disabilities and insecurities, the art that was representative of her pain… I saw myself in every piece of her home. And I saw that her fame and her genius could not save her. She was in pain until her last day, just like I’ll be.

And logically, I know that there is no cure. I know I’ll be in pain for the rest of my life. I know there’s no saving me either, but it’s not something I like to think about. It’s not something I like to face often. Who would?

I don’t want my life to change. There are no regrets in my soul and there is no other path I’d rather be on, but even still, the pain is too great to ignore and too great to embrace. I don’t want a baby, but I don’t like not feeling like I have the option. My whole life has been about giving myself the whole world and every opportunity in it, so forgive me if I cry about the closed doors I wish I could open, even if I may not want what’s on the other side.

Despite the pain, the beauty of her work was immeasurable. The way she lived her life was still passionate and full and revolutionary. I can still try to live my life with a fullness that I may not have pursued otherwise.

And maybe that’s the real story here. Maybe that’s the real journey. My suffering is my fire, despite it feeling like embers. My suffering fuels my passion to pursue the limiting of suffering in others. Maybe this burden, this painful life of mine, is a gift that I just don’t know how to accept. But maybe it can also be just a blip in the chaos. Either way, I think that’s alright. If Frida could change the world, maybe I can, too.