So You Wanna Talk About Mothers?

So You Wanna Talk About Mothers?

It’s challenging to inherit the mother’s role. Some moms fade in involvement as parents while others see their children well into their adulthood and continue to act as mothers till they go to glory. Across that spectrum are mothers failing, struggling, hurting on their own. My mother is an interesting case because she attempted to co-parent with both my father and my sister’s father, all while her health suffered greatly.

Let’s get to it: My mother suffers from two rare autoimmune diseases and cancer.

After giving birth to my sister in 2005, my mom was diagnosed with scleroderma, which attacks both her skin and lungs. There is no scleroderma treatment that completely halts skin tightening and lung damage. Since 2006, my mom has been changing through largely untreated suffering.

In 2012, she was diagnosed with ANCA vasculitis, which pushed her into kidney failure in 2014. Currently, she’s battling breast cancer and is in the reconstruction phase of her double mastectomy. As her oldest daughter, I’ve become a caretaker, helping my mom cope and handle a lot of the stresses that come with living with chronic diseases.

Through it all, my mother has seen stark differences in her physical body, such as sufficient hair loss and tight skin, painful reminders of scleroderma’s toll. Over the last decade, my mother has had pixie cuts instead of her curly, long mane, and she’s restricted wear on her manicures. And she now has a ring collection — if you know my mom, you know it’s expansive — because her fingers are shrinking.

Raynaud’s disease, complementary of scleroderma, also causes extreme discomfort to her fingers and toes during colder months. My mother changed her clothes from grown and sexy to grown and comfortable, replacing plunging necklines and tight leggings with sweats and denim jackets. She always was a fashionista, modeling in her 20s while being a chic, young single mom to me. My earliest memories are the glows I would see around her lion’s mane.

My mother is and will always be beautiful, but she has not looked the same since 2006. It affects her greatly. She describes it as waking up to a stranger every day, only to realize it’s her, and that she hates the way she looks. She wishes she could go back to the times when even aged wine could not compare to her, when men would knock down her door just to kiss her feet.

I look like her twin, if her twin was a bohemian, gay “liberal,” and I feel tremendous guilt for it. I see the way my mother changed physically and how these changes affect her mentally and spiritually. It changed our whole dynamic as I grew up. She could never hide her sickness and its effects spread into our daily life. Younger me deemed my mom a goddess and nothing less. Older me sees the warrior my mother has become — the beauty inside.

Being both her caretaker and best friend has taken tolls on our mother-daughter relationship, but my mother is a loving and energetic being through it all. All her 30s and 40s have been about a fight to live, and though it is tough, she fights to the best of her abilities. The challenges never seem to end, but we fight daily through our struggles.

Follow our journey in my column, “Yes, I’m Still Enough,” published every second and fourth Thursday.


Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

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  1. PATRICK GOULD says:

    My wife had a stem cell transplant that stopped the progression of scleroderma. You must be healthy enough. And it won’t fix damage. It saved her heart and lungs.

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