From my bed I hear the sounds of our usual family chaos. My daughter gallops across the living room floor, shaking the ceiling above me. There are downsides to a basement bedroom, that’s for sure.
I drift in and out of consciousness, grateful that my husband is taking charge while I crash my way through adjusting to my new medication. The fatigue isn’t worse than those blurry postpartum depression days, but it feels darn close.
I suffer through those first, worst, side-effects days, and it really is suffering. My mouth feels stuffed with papery grit; even my favorite comfort foods are disgusting. My whole body feels parched so I gulp down quarts of water without finding relief. And I am so constipated that I feel like a beached whale stuffed with walruses.
I am miserable, but also I am the opposite of miserable.
For the first time in I don’t know how long, the fire usually engulfing my right foot is a dull, intermittent growl. I can lie on my right side – a preference since childhood – without the pressure on my tumor jolting me awake. When I finally do wake up enough to join my family in the living room, I can walk up the stairs without desperately clinging to the handrail. At night, my husband and I make love and for the first time in I don’t know how long, I am not wrapped up in agony and analgesic patches for hours afterwards.
I might be more able than I have been in years, but the tumor at the back of my right leg still hampers my mobility. I have a stack of great physical therapy exercises to do, but haven’t had a good cardio workout in…god, it seems like forever. Running is out of the question and even swimming puts too much of a strain on my tumor. I’ve never been super fit, but before I had Iliana I was seeing a personal trainer twice a week. Six years later, all of the endurance and muscle mass I had worked so hard to gain deteriorated into extra weight that makes my whole body ache. Not to mention the extra pressure it puts on my tumor itself.
I grew up as a skinny kid. All knees and elbows and sharp tailbone my grandmother would tease me about whenever I sat on her lap. Now I am the heaviest I have ever been outside of pregnancy, and this heaviness is belly fat and loose muscles. I’m all flab and quadruple chin, which has nothing to do with how aesthetically pleasing I think I am. I regularly share selfies on my Instagram, and every single one of them is a picture of myself I genuinely like for one reason or another. (Yes, even the one where my daughter gave me a makeover. Maybe especially that one.)
There’s a mirror directly opposite my shower door, so every day I face my naked reflection head on. Of course I notice the effects of age and multiple pregnancies – the sags and stretch marks – but I never look at myself and feel gross. I don’t mind my fatness, truth be told. When I look at my naked body I see goddess rather than sea-lion. I see my mother’s body, and my grandmother’s body, and I see the body that nurtured three perfect babies. I passed my pooching belly and round Polynesian ʻōkole down to my daughter and feel a sense of pride rather than disappointment.
I don’t hate my current state of fatness because I hate that my body has become fat. I hate getting fat because I grew a tumor that keeps me from using my body. I have been in so much pain that hearing the body-positive phrase “all bodies are good bodies” doesn’t make me feel empowered or beautiful. It makes me feel bereft and excluded, lost inside the maze of trying to accept my faulty genes and tumor-developing nerves because it’s part of the only body I’ll ever get. I mean, I understand the message behind lines like that, but. If all bodies are supposed to be good bodies, what happens when this one…isn’t?
Right now my medication is helping tremendously with the pain from my tumor. Next month, I’ll go in for surgery to try and have the tumor removed. But my neurosurgeon has prepared me for some level of irreversible damage done to the nerve. Some level of nerve pain for the rest of my entire life. And then, of course, is the possibility for more tumors and surgeries and nerve damage. Always the potential for more and more pain.
This is the body I get to live my life inside. And I love it – don’t get me wrong. I love my faulty, nerve tumor body with its anxious depressed brain and asthmatic lungs. I love the things it lets me do. But also I resent it, and sometimes I out-and-out hate it when it brings me to tears for weeks at a time. It’s not a good body, and I have no choice but to be okay with that. It’s what I’ve got, and pretending I have anything other than what I have isn’t doing me any favors. The best thing I can do for my not-a-good-body is to take it as it is, and take care of it the way it needs.
Maybe that sounds obvious, and maybe it sounds easy. But from in here, I can tell you that it has been neither. It’s been a long, long road that I’m still trying to walk. When I can. When my bad body lets me.
image of the painting Nevermore O Taïti by Paul Gauguin via Wikimedia Commons