A personal update about my mom

Hi Friends. I’m going to take a little time here to update y’all about my mom. Thanks so much to those of you who have reached out with thoughts and prayers; it truly means so much. My mom’s diagnosis has been so hard to process. Many of you know and love her as well, so I want to share about it.

I spent most of February in Texas with Mom and Dad, and Sarah. And, of course, their dogs, my adopted godchildren, Belle and Louie! Paradoxically, it was wonderful to be together — just the four of us, like old times, like our truly wonderful, safe childhood. But at the same time, we were all experiencing fear and confusion at an intensity we’ve rarely, if ever, felt. Mom survived cancer two years ago, but this has been a different kind of terrifying. [With her type of cancer, we were fortunate — there was always a known path, a plan, and a treatment that was very likely to work — and DID work. With scleroderma, the path has felt completely unknown.]

The truth is: It’s hard for me to even figure out how to talk about, or think about, what’s happening to Mom. My mom, who loves dancing, who bought jazz shoes in July of 2022 and signed up for a ballet class just a month before Scleroderma started taking her ability to walk, to move her hands, to get around easily. My mom, who is a surprisingly talented painter. My mom, who loves to hand-write poems and letters.

So, here’s what’s going on:

She was diagnosed in January with early, aggressive, diffuse systemic scleroderma. Also known as systemic sclerosis. Mom’s sister, my Aunt Lisa, said about it: “It’s a disease I’d never heard of in my life, and it’s probably the worst you’d ever want. If you could put all the horrible symptoms you could think of in one disease description, that would be scleroderma.”

The disease — which they can’t cure and they don’t know the cause of — causes your body to overproduce collagen, which then makes your skin go hard, like stone. Some people only get a streak of this hard skin, whereas, with what my mom has, it can advance through your entire body, limbs, torso, even your face. It can happen over several years or within months. It can go into “remission” after a few years (our hope!), or it can spread to your organs, in which case it’s fatal. It’s different for every single person who has it.

In my mom’s case, she is both unlucky and lucky. [Though “luck” is not the word any of us would use.] She has aggressive, fast-moving symptoms. Her legs and hands are hard, like a smooth piece of marble. Her face is starting to feel tight, and the fear of her face changing is a pressing, daily anxiety. She has been in excruciating, drug-defying pain every moment of the day and night. In January and February, we thought she might be facing the end.

But it’s March now, and as the days get longer and brighter, so do our hopes. She’s seeing Dr. Maureen Mayes, one of the leading Scleroderma specialists who literally wrote the book on Scleroderma (!!). Since our first meeting with Dr. Mayes, things have started to trend in a better direction, though we have not been short on tears. Treatments are available and can be tried (!). Mom’s organs are okay still, which is a small miracle. She’s not in immediate danger. Her pain doctor is working to help manage that side of things.

The main things we are thinking about right now: getting on with a medicine that has shown promise with scleroderma to see if mom’s scleroderma responds, figuring out how to manage pain, and figuring out how to solve the disabling parts of the disease. Each of those is progressing much better as spring arrives — but the journey will be long and hard.

If you would like to follow her own account of her journey, she is sharing updates via YouTube — along with her own emotional and spiritual experience through it all.

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Life as it is — not what we thought it should be.

This post from KJ Ramsey, a writer, and friend from college, helped me the other day, including this poem:

Life is not fair
but she is both 
fragile and fierce 
like the piñon pine—
flammable yet 
full of food—
and that’s 
a different kind 
of fair. 

Honestly, I’m not there yet. I’m somewhere bouncing around in denial, anger, bargaining, and depression, as one does. Wounds suck, and they shouldn’t exist. It’s not fair that this is happening to my mom, one of the gentlest, most generous people in the world. But then, suffering is never fair. Life has horrors. And we need each other.

That’s all. Thanks, guys.