“Watch out for Mommy’s bad arm!” This phrase often echoes in my household, sometimes said gently, other times with urgency, and it’s a reality I despise.
For over ten years, RSD/CRPS (Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome) has been my constant companion. It was part of my life long before my youngest two children were even born, and even before my teenage daughter’s memories began to form. My eldest daughter has faint recollections of a healthier version of me—those memories are better left dim. After all, the clearer the memories, the more painful they can be.
I often wish she could recall me as the active mom who sledded down hills, engaged in snowball fights, built snowmen, and played soccer. The mom who ran and leaped without a second thought. It’s a selfish wish, I know—wanting her to remember me before my disability took over. I try to avoid reminiscing about our life before RSD, navigating those thoughts like a minefield while carrying delicate crystal glasses. That was then, and this is now. There’s no returning to what once was.
I’ve faced mockery before, especially from people in public places. While at the store, I can hear snide comments as I take my time putting groceries on the conveyor belt. I’ve even caught others sighing impatiently when I struggle to manage my wallet with one hand. This all began with an innocuous workplace injury that escalated into a chronic pain condition, where my nerves constantly signal to my brain that my arm is injured. Every day, I battle pain that varies from manageable to so severe that all I can do is retreat to bed, as my husband aptly puts it—“med and bed.” Changes in weather, stress, or even no apparent reason can send my pain levels soaring, leaving me unable to articulate thoughts or perform simple tasks.
There’s no fairy tale ending to my story. But I keep pushing forward. I’m a wife, a mother, and I have dreams of writing novels—dreams that require typing countless words with one hand. My stubbornness fuels my determination; I refuse to let RSD rob me of more moments in my life.
I don’t handle my condition with grace. I am not serene, nor am I an inspiration; I simply grind through each day. I often lie to my family, especially to my husband and kids. This is my way of preserving their perception of me, hoping they’ll see me as ‘me’ rather than ‘me-with-RSD.’
“Ugh, I know,” a fellow mom sneered, drawing out the word “arm” with exaggerated disdain. Her condescending tone stung, and I had to fight back tears.
I put on a brave face at events, gritting my teeth and hiding the pain that gnaws at me. My children need their mother, and regardless of how much it costs me, I will be present for them. Even if it means stifling my sobs in the bathroom or the front seat of the van, wearing sunglasses to shield my eyes from their view. My husband knows better than to comment; he simply offers a reassuring touch on my thigh, silently acknowledging my struggle.
After events, he helps usher the kids out of the van, allowing me a moment to collect myself. Neither of us wants to diminish their joy. But I lie to him too, mostly through omission. If I were to share my truth, our conversations would be consumed by my pain, and I refuse to burden him—or myself—with that reality.
Shame often accompanies my disability. When my youngest daughter was excited to join a group in a church basement, I saw it as an opportunity for us to connect with other moms after moving to a new town. Yet, the dampness of the basement sent my pain levels skyrocketing. As I struggled to assist with clean-up, I apologized to another mom.
“Oh, I know,” she sneered, her tone dripping with sarcasm. That moment felt like a slap across the face, mixing shame and humiliation into a painful cocktail.
I continue to move forward, unwilling to let RSD take any more from my family. I fight to appear normal, swallowing tears and telling myself, “Just another five minutes. You can do this.” My children deserve the best of me, and so does my husband.
As my youngest reaches for my hand, hesitating to find my wedding ring, I see the love in their eyes. “I love you, Mommy,” they declare, squeezing my hand tightly to their chest. In that moment, I remind myself that RSD can’t take away the love we share.
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Summary:
This piece reflects the emotional journey of a mother navigating life with a disability, dealing with societal judgments and the constant challenge of pain. Despite the struggles, she remains determined to be present for her family, masking her pain to maintain their joy. The author’s resilience shines through as she fights against the limitations imposed by her condition, prioritizing love and connection with her children.
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