I’ve had the desire to write this update for months. I just couldn’t find the courage. In fact, I’ve had several sleepless nights over it. My desire to write has been overwhelming at times. Unfortunately, I can’t write with a filter, and I never edit. What comes out is raw and extremely personal, and I just haven’t been ready.
Why? I stopped posting on CaringBridge and became private about my health after several instances culminated and pushed me into silence. What has motivated me to relate some of them is the hope that maybe someone else will benefit. Words matter. And recent test results have given me the push I’ve needed to tell my story.
Occasionally I’ve endured skepticism from healthcare practitioners over the years. That’s painful, but not necessarily surprising, given my health history. It was comments from those I knew and loved that hurt me deeply. I found out some family had called me a “drama queen.” A friend who I greatly admired told me to “wait until my 50s because then I’d really understand suffering.” A relative with whom I’d always been close said she’d rather not know bad news. And many others who (with good intentions) would admonish me with a story that was worse than mine.
What finally sealed the deal was a phone call. On the other end, a fellow mom who had become part of my daily life. With a child close to my daughter’s age, we saw a lot of each other once our kids became close. After witnessing a paralysis attack two weeks prior, she called me actually screaming, accusing me of being a liar. She took it a step further and messaged me via CaringBridge, telling me I needed to get right with God and come clean.
A month ago I got DNA test results from a genetics lab, proving I have a mutation known to cause hypokalemic periodic paralysis. I was, in fact, NOT faking it. But the damage had been done. Unfortunately, that woman found the chink in my armor, and it unraveled me. At the time of her confrontation, I’d had a clinical diagnosis with a blood test proving low potassium during an attack. Countless times my healthcare-provider husband reassured me that he saw scientific facts during attacks that I could not fake. But this woman had gotten to me.
Every episode of weakness or paralysis I’d tell myself, “You’re just being lazy. Stop it. Get up. This is all in your head. How many rare diagnoses can one person have?! See, you just want attention! Look at how you’re ruining someone else’s day. Poor Todd has to come to the rescue, again. How can you be fine one minute and not the next? You are literally crazy.” That tape played over and over, and I couldn’t stop it.
Sometimes my life is unbelievable, even to me. Four months after Evan was born, my doctor told me the brain tumor (on my pituitary) was back. I’d gained 40 pounds in three months AFTER giving birth. I’d hoped it was because my appetite had finally returned. Nope. I told people mostly on a need-to-know basis. I mean, it was on the heels of a killer year and I just couldn’t tell people One. More. Problem.
So I retreated and starting really living the lie that I was fine. I couldn’t bring myself to actually lie when someone asked how I was doing, so my standard response became, “I’m hanging in there!” or “It’s been a crazy year!” Never mind the brain tumor. The move. The baby we lost. The renovation. The difficult pregnancy with a huge curveball (more on that later). The commute. Another move. The tens of thousands of dollars lost on a house and spent on medical expenses. And the mental, physical, emotional and spiritual agony over it all.
I believed a lie too. I believed that people wouldn’t care. Here’s another one of my tapes: “Everyone has problems. We aren’t special. Remember, somebody always has it worse! Pick a story because there are countless ones that’ll invalidate your pain. Be quiet and suck it up.” I’ve been a living example to not judge someone by how they look on the outside, and I’m beginning to feel like a hypocrite.
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