An Open Letter to My Body
I don’t think either of us remembers what it’s like not to be in pain. The days of waking up feeling rested, refreshed, full of energy, with infinite possibilities in front of us are long gone. Being able to reach for any goal or dream that we could possibly desire is a distant memory. We live according to a strict schedule of energy budgeting and pain management now. In our pre-illness life, nothing held us back from within. Now, it seems that all we do is manage our insides. There isn’t time for much else.
From friend to foe
I have blamed you harshly for this loss of freedom. When we got sick, in many ways you became my burden, my albatross, and my enemy. I felt trapped inside of you as you grew weaker and more atrophied. I cursed you when seeing my peers reach milestones that I couldn’t dream of pursuing because of how much you demand from me. I felt embarrassed by you when people asked what was wrong with me or why I couldn't do what I used to.
I tried everything
So, I rearranged my entire life to get you well. I found us great doctors, the best medications, and I changed our diet and fed you the best. I bowed out of opportunities, let go of obligations, and missed social events so I could give you rest. In my more desperate moments I started juicing, forced us to meditate, bought every ant-inflammatory supplement I could get my hands on, and even tried coffee enemas to “detox” you. All it got me was more frustration and a (thankfully temporary) coffee aversion.
I did everything in my power to fix you. And I felt like a complete failure when you couldn’t be fixed. I couldn’t fathom how you could still be sick no matter how hard I tried. I grew to resent you, feeling like a hostage to your brokenness, malfunctioning parts, relentless aching, and defiance of so many interventions.
It's not your fault
I forgot several important things, the first of which is that you are suffering too. I lost sight of the fact that we are up against the same opponent, this dreadful disease that has no cure. The constant stiffness, throbbing soreness, and widespread pain hurts you, too, and you are using all of your capacity to fight back.
When we are really inflamed you force me to stay down, like a referee giving a hurt boxer in the ring an eight count respite before he gets back to the fight. When we flare, you send out all of your chemical messengers to repair the damage. This is supremely inconvenient to me but it means you are doing your job the best you know how. You take what you need to survive and function, no matter what my plans are.
Thank you and I'm sorry
The only appropriate words to say are thank you and I'm sorry. I’m sorry for treating you like an emotional punching bag and not recognizing all you do without being asked. For all of the snide remarks about returning you. For hating the ways you look different now from the ravages of this disease. For forcing inadequate solutions on you and then lashing out at you when they don’t work (if they did work, everyone would feel well).
This disease was an accident, a complex interplay of genetics and environment that neither of us asked for—and no matter how much I lament the way life "should have" gone, I can’t go back and change it now. I am wasting my energy being at war with you.
Thank you for roaring at me with symptoms every time something was deeply wrong. You would not rest until we had answers and I am still alive because of your persistence. Thank you for your inherent wisdom that keeps all of our processes and functions going every day, no matter how exhausted I feel. And thank you for your grit as we endure endless procedures, blood draws, scans, needles, and medication trials. I am in awe of your strength and grateful to you.
Do you use the word disability to describe your AS?