A Love Letter to My Messy, Beautiful, Ordinary, Congenitally Ill Body

Oh sweet girl.

You have been through so much, survived untold obstacles. None of it is your fault. You stun doctors, challenge their egos, and make them question traditional knowledge. You are battered and bruised, marked by the abuse of hands and scalpels alike. Your “faulty” genetic markers cause pain I wouldn’t wish on anyone. And. Your genes created a fortress of love, of compassion for the “other,” of untold stories and glorious boundaries.

I don’t have the hindsight to look back on a time when society would have considered you “normal.” I watch others lean into the ableism of our society, allowing their disabilities to be exploited for the entertainment and inspiration of able-bodied people. I refuse to let that happen to you, not anymore. You are not able-bodied people’s inspiration porn. Your existence is not a miracle—it is a gift.

Thank you for carrying me through a chaotic childhood, for holding your ground and following your instincts to keep us as safe as possible. The rest is not your fault. You should have been protected—you did nothing to cause or deserve mistreatment or the gaslighting that followed. I love you.

Thank you for bringing me to seven different countries, plans for three more this year, hopefully many more in the future. It is odd to feel comforted that the medical systems and ableism are remarkably similar across culture and geography. At least that discrimination is predictable, so it is easier to challenge. You have flared, gotten seriously injured/ill, and/or gone to the hospital in every country visited. You consistently prove them wrong, reminding me that no matter what others say I do in fact know you best.

Thank you for sitting with me on the ordinary days, the plain old Tuesday with a million things to do. You remind me to slow down, that my value in this world is not a result of what I produce. You force me to pay attention to body-mind-spirit and to be intentional about your care. You make me a better person and a better friend.

Oh sweet girl, others may not see it that way. They get angry when we “talk too much” about disability. They end friendships when we run out of spoons and have to cancel. They forget the definition of chronic and spear us to ableist microaggressions wondering why we aren’t “better yet,” suggesting the most absurd remedies, and insinuating that “maybe you’re not really sick.” They see your limits, the boundaries we rightly uphold to avoid heightened pain. They see the two major brain surgeries you have survived and thank you for inspiring them.

“She was having six seizures a day while doing her schooling—you can do it.”

“You have been through so much—you are my inspiration.”

“You’re too young to be sick. Maybe it’s all in your head.”

I know better. Don’t get me wrong, you still frustrate me with the unpredictability of your flares, your full-body attack on my collagen, and the multiple things that specialists have yet to explain. I feel afraid that my experience with you now is likely the least pain there will be for the rest of my life. Our diseases are progressive and will only get worse. The consistent pain now will likely become constant, may become debilitating, and definitely will require additional treatments and surgeries. Our healthcare system isn’t built for you, so you cost ridiculous amounts of money, money most other people my age are spending on trips, cars, down payments on houses.

It would be easier if you magically worked “normally,” but not because there is anything wrong with you. No, beautiful one, your disabled body-mind-spirit is not the problem. The problem is our society which consistently disables you through the construction of barriers to inclusion. You are holy and whole. You are dearly loved.

I free you of the expectation to inspire others. You are holy and whole, beyond all categories, exactly as you are. I free you from the expectation of perfection. Rest is divine, perfection is not. I am still working to unlearn this value, struggling with an A- instead of an A as if that little mark means I’m not “successful.” Thank you for helping me know that my best is more than enough. You are perfectly imperfect, challenging me to continue recovery from perfectionism. You do not function how society expects, or even how I expect with random new things popping up consistently.

And.

I love your grit, your tenacity, your disruption of the status quo, your emphasis on self-care, your embodied wisdom, your compassion for others who struggle, your growing self-compassion. I trust your experience. I believe your lived reality. You are my friend who I dearly love on both high and low pain days. Your tremors, your twitches, your cramps, your flashbacks, your subluxations, your nervous system “dysfunction” is all I have ever known. While unpredictable, you are my greatest consistency. Whatever lies ahead, I love you and am honored to walk this journey with you.