“Careful of Mommy’s bad arm!”
Sometimes it’s a gentle admonishment, sometimes it’s a yelp, but it’s a common occurrence in our family.
And I hate it.
RSD/CRPS has been a part of my every waking moment for more than a decade now. Since before my youngest two boys were born, even before my teenager’s memories begin. My eldest daughter remembers me whole and healthy, but dimly. It’s better that way, I think. Dim memories aren’t as painful as the clear ones.
Part of me wants her to remember me as I was: the mom that went sledding, had snowball fights, built snowmen, played soccer with her. Who ran and jumped and played and swam without thought or hesitation. It’s a selfish desire of mine, I realize, wanting one of my children to remember me before I was disabled. That’s about my pride, rather than what’s best for her, so I avoid “remember whens” that involve our pre-RSD life, like tip-toeing through a minefield while carrying a stack of crystal glasses.
Because that was then, and this is now, and there’s no going back.
It’s not the first time someone has mocked my disability. People behind me at the store mutter about how long it takes me to put groceries on the belt. Others sigh as I fumble to get money in and out of my wallet one handed.
It started innocuously enough. A “workplace incident” that resulted in a strain/sprain of my dominant hand and arm, which morphed into a severe chronic pain disability known as RSD (Reflex Sympathetic Dystrophy) or CRPS (Complex/Chronic Regional Pain Syndrome). Basically, the nerves in my right arm, shoulder through finger tips are constantly telling my brain that my arm is injured and misinterpret all stimulus as pain. Pain is an every moment of every day companion; the question is never, “Will I hurt?” but rather, “How bad is it going to get today?” Will it be the normal level of pain? Or will it accelerate to the point that all I can do is “med and bed” as my husband puts it? Bad weather (damp, cold, sudden change), stress (positive or negative, RSD doesn’t discriminate), physical touch, or no discernable reason at all will send my pain levels careening through the stratosphere, rendering me a useless entity, incapable of stringing words together in a coherent sentence, and unable to do anything but stagger to bed like a wounded animal seeking the safety of their burrow.
There’s no happy ending here.
But I keep going. I’m a woman, a wife, a mother. I have dreams of writing, seeing my novels on a shelf, even if it means typing tens of thousands of words one handed. I keep pushing, because if nothing else, I’m stubborn as hell, and refuse to let RSD rob me of any more of my life.
I’m not graceful in my disability. I’m not serene, I’m not accepting, I’m not inspirational. I grind it out each day. I lie to everyone around me, especially my husband and children. Lying is my only way to survive, to protect them, my hope of remaining me in their eyes, versus RSD stealing what’s left of my identity, too. I want them to think of me as me, not me-with-RSD.
“Oh, I know,” she rolled her eyes. “Your arrrrrm.” The way she drew out the word, dripping with condescension and scorn, made me blink back tears.
I white-knuckle my way through events, smiling with gritted teeth, and hide. Hide the pain that is chewing through my muscles, my bones, my nerves, my tendons. My kids need their mom, and their mom is going to get through, even if it’s sheer willpower that will have me quietly sobbing in the bathroom, or in the front seat of the van on the way home, sunglasses securely in place to hide my eyes, so they can’t see. My husband can, and he casts looks at me out the corner of his eye, knowing better than to comment. He reaches over to lay a comforting hand on my thigh, letting me know that he sees, he knows, he loves me for getting through.
He hurries the kids out of the van, giving me time to collect myself so that they don’t see the cost I’ve paid to be there for them. Neither of us will willingly rob our children of their joy.
But I lie to him too. By omission, mostly. If I answered honestly, we’d never talk about anything but my pain levels, and I refuse to do that to him… or myself.
But shame can go hand-in-hand with disability. My youngest daughter was excited to join a group that met in a church basement. It was a chance for her and me to hang out with other moms, make new friends after moving to a new town. The damp of the basement sent my pain levels soaring. I found myself struggling to help with the clean up one handed and apologized to another mom.
“Oh, I know,” she rolled her eyes. “Your arrrrrm.”
The way she drew out the word, dripping with condescension and scorn, made me blink back tears. Shame and humiliation hit me as surely as if she’d slapped me in the face in front of my child.
It’s not the first time someone has mocked my disability. People behind me at the store mutter about how long it takes me to put groceries on the conveyor belt. Others sigh as I fumble to get money in and out of my wallet one handed.
I keep going. I refuse to allow RSD to rob my family any more than it already has. No matter how hard I have to fight to appear normal, no matter how many times I swallow back tears and tell myself, “Another five minutes. You can do this another five minutes,” until it’s done.
My children deserve the best I can give them, and so does my husband.
My youngest reaches out for my hand, hesitates, looks for my wedding rings, as he’s been taught. He knows that rings means that’s Mommy’s good hand, and okay to touch. He grabs my hand tightly, hugging it to his chest, and smiles. “I love you, Mommy.”
RSD be damned.