As much as I loathe what I'm about to write, I know that change happens when we allow ourselves to be vulnerable. Plus, I feel my readers deserve my transparency.
I haven’t posted much online over the last two and a half years, mainly because I haven’t known what to say. How do I explain that the thing I’ve done since I was eight—the one thing in my life that felt as natural as breathing—suddenly became impossible to do?
Not just impossible. Terrifying.
How could I explain the days spent hovering over the keyboard, hands shaking and tears streaming down my face, quietly begging myself to write something—anything?
I couldn’t. It went against the image I’d worked so hard to present to the world. So, I shoved those emotions down deep and pushed myself even harder. As some of you may remember, I seriously considered “checking out” during this time and was given two options—therapy or a “grippy sock vacation.”
I chose therapy and it saved my life. Literally.
I began writing again—filling notebooks and external hard drives with my thoughts and plot lines—but there was always something in the way. A roadblock I couldn’t seem to get around. For a long time, my marriage felt like it was on the verge of imploding, so I poured every ounce of energy into saving it, only to feel like it was never enough.
Never enough.
I could have tattooed the phrase on my body with as much as I used it. This sick reminder of all the ways I was failing at life.
Wife. Mother. Daughter. Sister. Friend. Writer.
I couldn’t seem to get any of them right.
So, I numbed myself with my favorite medicine. Distraction. I piled my plate sky-high with tasks and errands, convinced I could earn the love and acceptance I desperately sought from others if I just did more.
Spoiler alert: it didn’t work.
Not for lack of trying, but because I was asking for something I wouldn’t give to myself.
Time. Attention. Love. Self-care. REST!
In her song ‘Graveyard,’ Halsey sings, “It’s funny how the warning signs can feel like they’re butterflies.” Existing in a state of over-functioning chaos felt almost normal to me. Familiar. Comfortable. Safe.
Until suddenly, it didn’t.
In the spring, I began experiencing bilateral shoulder pain. My rheumatologist recommended physical therapy, and I went, only to find the pain seemed to be getting worse. By June, I could no longer raise my arms over my head and needed help just to wash my hair. It felt like someone was dumping ice water from my neck down to my fingers. My balance felt off and at times, I would experience hand spasms and forcefully release whatever I was holding, like a full ladle of spaghetti sauce I sent sailing across the kitchen one night.
After failing a nerve conduction study, I was sent for an MRI in late-July. Along with some minor disc bulging, they found a hemangioma (benign tumor) on my cervical spine and referred me to a neurosurgeon. I was almost relieved, convinced they’d be able to remove the tumor and I’d be back to writing again in no time. We met with the neurosurgeon and his nurse practitioner (who was amazing, btw!), only to be told that there was nothing they could do from a surgical standpoint because the hemangioma wasn’t compressing any nerves or blood vessels. Basically, we don’t know what’s causing your pain, but it isn’t this.
As the NP asked about various symptoms I was experiencing, I admitted I’d chalked most of them up to lack of sleep. It’s then that they told me I met a lot of the criteria for multiple sclerosis and sent me back to the neurologist for further testing.
I felt like giving up. By this point, I could barely drive and had had to back out of two separate signings. My hope was that I’d have a “quick-fix” surgery and be well on my way to recovery within a matter of weeks.
Here I am, three months later. No closer to a diagnosis.
What I do know is this. I have an autoimmune disorder. Whether it’s MS, lupus, rheumatoid arthritis, or something else remains to be seen.
And, as hard as it is to admit this, I’ve come to accept that deep down, I like being sick.
I like being distracted and having an excuse for why I’m procrastinating on the things I say are important to me. Like writing. Who could fault me for not finishing my book by August when I spent the entire summer in perpetual, sleep-deprived pain?
No one except me.
I’m sick of playing small and making excuses to spend my life on the sidelines. I’m done pushing my body to the brink of burnout for everything BUT the thing I say I want to do. I’m over saying yes when I really mean no.
The roadblock I couldn’t never seem to get around was me.
It’s no wonder I ended up with a disorder that involves the body attacking itself. I’ve been fighting myself for as long as I can remember—physically and emotionally starving myself for never being “enough.” Not speaking words of affirmation but cursing myself for not meeting society’s standards of perfection.
I beat myself up, never once stopping to consider that it was the system that was flawed and not me.
It’s taken a lot of therapy and soul-searching to get here. Thanks to an amazing team of doctors and a handful of prescription drugs, my pain is under control for the time being. I’m slowly feeling my way back into writing again, setting small goals and holding myself accountable.
What does that mean for all of you?
It means I’m prioritizing myself and protecting my writing time so that I can breathe life into the stories that have been gathering dust in my head. It means dropping the curtain and being real with you.
Because that’s what this world needs.
More real.
Maybe that’ll be the phrase I ink on my body. The mantra I repeat when my ego tries to convince me I should be doing more.
Xoxo, Shae