Hello dear ones,
While driving a few days ago I thought a leaf blowing in the road might be a small animal, so I slowed down until I watched it skitter away in the breeze. Fall is coming. But I’m determined to keep living in the golden light of August - to drink up every moment. Though I’m often uncomfortable in hot weather & some of my conditions are worsened by it, the aches & pains of my body are dramatically softened in the warmth. It’s the familiar & odd dichotomy of my life, perhaps of every life: there’s difficulty & beauty in each season.
On Friday, I swam that mile I was telling you about.
While I was swimming the last few laps of that mile, I remembered a big turning point in my early life with Complex Regional Pain Syndrome (CRPS). It was an overcast early spring day & I was in the little bedroom I stayed in next to my parents’ room messaging my friend Jaye. I was in despair as hot tears of grief rolled down my cheeks, while I was describing how helpless & sad I felt about my new life.
After I stopped crying & was in the calm of release, I went for a walk down Saddlebrook Lane with my mom, as I often did. It was like practicing walking. I’d think “heel to toe” in my head & try to keep my gait steady. Under instruction of my occupational therapist, who is also a therapeutic pain specialist, I teased the pain. It always hurt to walk, but I would keep going & stop just before the pain became unbearable. Then I’d sit on my rollator & rest for a few minutes until my nervous system reset & I’d try to walk a little further.
I was walking with my mom like any other day, when suddenly I realized we were at the end of the lane, facing the A-frame house across the street, & surrounded by the tall trees that line the intersecting road. The trees were budding baby leaves of March green against the gray sky. “Oh my gosh I did it!” I said to my mom. That was the farthest I’d walked consecutively in almost a year. About an eighth of a mile.
In the years following my diagnosis, I have often felt a swirl of pain, jealousy, & bitterness when friends & loved ones touted their physical accomplishments. It’s like when you’re freshly heartbroken & someone sends you a wedding invitation. You go to the filing cabinet marked “Happiness for others” in your brain & the drawer lets out an empty, dusty cough.
I could barely walk & some days, barely stand, & you climbed a mountain, Kevin? Wow. You ran your tenth 5K, Claire? Good for you.
It’s not that I couldn’t care less. It’s that I couldn’t care more. It hurt so much & I deeply mourned all the mobility I had lost. The life. The dreams. The ability to live even one pain-free day.
Though I’m not proud of the bitterness I felt, it’s worthy of exploration. I understand it was a front for colossal grief. Grief that was made worse with every ableist microaggression. Every stranger asking me, “You’re so young. What happened to you?” in a restaurant, when it was all I could do to get out of bed that day. Every inaccessible doorway or store aisle. The two years with no income during which I had to fight for disability benefits. Each insurance battling phone call I made to get the medicine I needed. Every time I had to contort my already aching body to be able to exist outside my home.
Suffering is an inevitable part of life. Still, there’s so much that society & community can do to mitigate it. Allowing disabled people access to care & accommodations empowers us to live the best lives we can in the face of our suffering & to ease it.
To quote the movement started by disability activists Sandy Ho, Mia Mingus, & Alice Wong: Access is Love. Imagine castle walls of grief & loneliness built around you. Love turns them into sand & love is the wave that wears them down & washes them back out into the deep blue sea.
The gym where I swim has nearly 20 accessible parking spaces. A ramp leads up to the door with a button you can push to open it. There’s an elevator immediately to the right of the entrance. Mysteriously, the elevator always has a comforting smell of cocoa butter. There is another button that automatically opens the doors to the locker room hallway, as well as the doors to the pool. There is a wheelchair lift for entering & exiting the heated therapy pool. In addition to ladders in the lap pool, there’s a wide staircase with graded steps covered in anti-slip material with a railing on each side. One lane is reserved for people to walk & do physical therapy-esque exercises in. In the locker room, there’s one wheelchair accessible shower stall, but several more with wide entrances & benches in them.
Many disabled people come here, because the gym is welcoming to us in so many ways. This should be the bare minimum, but because it isn’t, I am so grateful to live five minutes from this fitness center.
Back to suffering, we all know by now that one of the fastest roads there is comparison. I’m trying to give that bitter version of myself compassion as she is healing & she very much is. I can now see that a friend ran a marathon & feel joy for her.
It is really hard to live in a body in pain & dysfunction. It’s also really hard to climb a mountain. There’s no comparison to be made here. Apples & oranges, as they say. I could & probably will someday talk a lot about how we give too much praise to what people can physically contribute or produce in our society with its limited view of success. Still, the victories we achieve in our lives, no matter how small, deserve celebration.
I swam a mile. I thanked my body for being the vessel in which my soul resides. I thanked my soul for persevering; for finding movement that helps & doesn’t hurt me; for the courage to keep swimming; & for belief.
Decompressing in the deep end after my swim, I gazed down at my cherry red pedicure through the turquoise water & kicked my feet in a flutter. I smiled a lot & thought: I did it. I love you, feet.
Until next time,
Annie
To learn more about Access is Love, visit: www.disabilityintersectionalitysummit.com/access-is-love
Annie-gram 3: One Down