The Friday before Thanksgiving last year, I (Erin) headed home after school to shower so I could be decidedly less sweaty and a bit more put-together before driving up to Columbus for my friend Kelly’s rehearsal dinner. I had the honor of being a reader in her wedding. There will be great irony in the fact that I was a reader later. Wait for it.
Anyway, I was showering and doing the things one does when one bathes (on occasion, from time to time — can I get an AMEN!) when all of a sudden I felt an intense pain in my left eye. I didn’t think too much of it — sometimes I move my eyes too quickly and I feel like I’ve strained them too much. The pain goes away. Life moves on.
But this time the eye pain didn’t go away. In fact, it stayed the whole weekend. At the rehearsal dinner I had a splitting headache. Like a migraine on a bender, the Beast of All Headaches. I didn’t sleep much that night.
The next morning, the eye pain and headache were still there. Big bummer. On top of that, my left eye was blurry and my sight a bit dimmed. Colors were less bright, more sepia. Major bummer. I took some ibuprofen which didn’t help. I asked the wedding coordinator (my beloved friend Emily) to make sure the page with scripture printed on it was extra-large, as I was unsure how well I’d be able to read. The weekend went on, my eyesight, headache, and pain got worse. Two best friends became husband and wife in a beautiful ceremony of which I’m grateful to have played a small part.
On our way back to Cincinnati, I called my eye doctor, the wonderful and gracious Dr. Tom Ritter, and left a message: “I’m not sure if this constitutes an emergency or not, but I’m having a really hard time seeing out of my left eye and it hurts a lot. Sorry to bug you on a Sunday.”
Dr. Ritter called me back within ten minutes and told me to meet him at the office ON A SUNDAY. He suspected optic neuritis, an inflammation of the optic nerve, but recommended I see an eye specialist the next day to confirm and explore my eye a little more. He said the words “multiple sclerosis” — this was the first time I heard them spoken aloud. Dr. Ritter said not to freak out, but that there was a relationship (what a quaint word, right?) between optic neuritis and multiple sclerosis.
Dr. Golnik, my eye specialist, confirmed Dr. Ritter’s suspicions, again mentioned the relationship between MS and optic neuritis, and ordered an MRI. I started three days of intravenous steroids to reduce the eye inflammation and hasten my visual recovery. IV steroids mean business. Upside: My eyesight recovered! (Mainly — it was still a tad blurry and “underexposed.”) Downside: Steroids cause insomnia! For a while I was getting one to two hours of sleep a night.
Three MRIs later, I received an official diagnosis of multiple sclerosis on December 18, 2014. Ben and I had about a month between my spontaneous loss of vision in November and the diagnosis, but it still took us by surprise. It’s devastating in the sense that everything changes in the blink of an eye (terrible pun intended) — our plans for a third baby changed, fear crept into our heads, the future seemed on shaky ground. But we believe in a good God who is good all the time, even when life hands you a sucky sandwich, or rotten lemonade, or whatever terrible food metaphor you want to use.
I started treatment (officially called a disease modifying therapy — there is no cure and my treatment won’t stop the disease, only postpone its quickening) in early February. Three times a week, I give myself a shot. These shots won’t be effective until August — they take six months to work, so in the meantime, I’m still unprotected. I had another attack over spring break when I started to experience double-vision again. I gave it some time to work itself out, but started another round of IV steroids four weeks later. Same story: the steroids corrected the double-vision, but my sight was still blurry, still underexposed. More insomnia.
Since November (and even before), I’ve had occasional tingling and numbness, two other hallmark symptoms of MS. When my body temperature rises, the vision in my left eye decreases and my extremities sometimes get tingly and numb. Each day, my left eye is a big question mark. I try to remain grateful for the many blessings in my life regardless of how I feel or what my body is doing that day. And there have been loads of blessings: my family (immediate, nuclear, near and far); my two sweet boys and Ben; my incredible friends; the hundreds, perhaps thousands of prayers spoken and thought on my behalf; my team of doctors, nurses, and assistants; the blessing of restored vision in going from darkness to light; a perfectly timed word from a friend; watching Sam eat the first ripe strawberries from our garden. I could go on.
And of course, some days are terrifying, like when I let my mind consider the worst case scenario “what ifs.” Or the day my whole body felt numb and tingly, like it had soaked in an ice bath for too long. Then the next day comes and it’s back to normal.
Multiple sclerosis is an immune-mediated disease (some docs say auto-immune, they debate about how to label it) that attacks my nerves, specifically the myelin, the stuff that covers nerves. Sclerosis in Latin means “scar,” so multiple sclerosis literally means multiple scars, which show up on the MRIs of my brain (though thankfully NOT my spine).
So, come August, I’ll be doing something I’ve never done before: bike fifty miles to raise funds and awareness for MS. Ben will be joining me. My team name is psalMS, a name I thought appropriate since the Psalms have been comforting to me as I navigate this “new normal.” For extra nerd-factor, I thought capitalizing the “MS” added punch and incorporated some nerdy wordplay as well.
The Book of Psalms itself is astonishing for its raw honesty. When he was a pastor, Eugene Peterson would often hear from his congregants that, after reading the Psalms, they told him they didn’t “expect this kind of thing in the Bible.” To which he would respond, “Did you think these would be the prayers of nice people? Did you think the psalmists’ language would be polished and polite?” Being diagnosed with multiple sclerosis has stripped away any pretensions of my having a polished and polite faith. As I wrestle with my literal sight, I’m reminded that, by definition, faith is “the substance of things hoped for, the assurance of things not seen.”