friends, MS

She Rides With MS 2016: Oxford Edition

A recap of our Bike MS: Oxford ride, as told through photographs from the weekend.

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Team PsalMS, from left to right: Meghan O., Christy, Gail, Erin, Ben, Emily, Katie, Meghan M. and Jill.

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Nothing builds team unity like an official jersey. This year, Team PsalMS went big on the jersey front with a little help from one of our seven new members, Christy Daniel, who got us the hook-up for some sweet Le Col unis (at a discount, no less!). As evidenced by the team picture above, taken before our Saturday ride (when, collectively, the nine of us rode 625 miles), we also went big on the socks front. In fact, the nine of us heard no combination of two words more frequently on the rolling stretches of open road around Oxford, Ohio, two weekends ago than these: “Nice socks!”

The Ohio Valley MS chapter moved its ride from Cincinnati to Oxford this year. That was part of the reason we were able to recruit seven new members to ride with us; seven of the eight ladies pictured above are Miami University alums. That meant, when we weren’t riding, we could be chowing down on a Szczerbiak bagel from Bagel & Deli, or revisiting the old haunts of Limelight and Hooterville, or partaking of (numerous) late night Skyline Chili Cheese Sandwiches for those of us who no longer live in the fair state of Ohio and thus can only eat Skyline from a can (a deeply inferior chili experience). The bike routes were prettier and more scenic — hillier too, though that made for some exhilarating downhills (fasted speed: 39 mph) as rewards for the difficult climbs.

The other opportunity afforded by our jerseys were many opportunities to explain why our name is Team PsalMS. Though not as comical or witty as, say, our favorite fellow team, the Handlebars (from its team page: “We believe that facial hair and spandex will have a direct effect on the lives of our friends living with MS”), or others like Cobra Kai (with the tagline, “Sweep the leg MS!”), our name has significance behind it which led to some meaningful conversations on the road. Bicycling is a more social sport than running. It’s better suited for conversation and leisurely rest stops (unless, like Christy and Katie, our two century riders, you’re out for speed and distance). It was easy to strike up a conversation among our team, given how far back many of those friendships go. But we were pleasantly surprised how easy it was to talk to anyone, anywhere, during any part of the weekend. The camaraderie we felt, even with strangers, was genuine.

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The official jersey.

Just so you can fully appreciate how awesome our jersey is, here’s a close up. Several team members were not even aware, until someone pointed it out on Sunday, that the outline of Ohio is a bike chain. That was Christy’s idea.

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Bike selfie

Bike selfie. As this was taken before the ride began, it was totally safe.

Our intent was to ride 50 miles on Saturday and 25 miles on Sunday, a modest upgrade from our 50 miles last year. But the day was so pleasant, and the miles passed so quickly, that we and Meghan Orr opted on the fly for the 75 mile route. While we trained a wee bit more for this Bike MS ride than we did last year’s (when, we confess, our training consisted entirely of five mile round trips to the pool and a steady stream of Oreos), our longest training ride was a Loveland bike trail-flat 35 miles. So 75 was a bit outside our comfort zone.

And yet, like our half-marathons, the miles pass faster during the actual race. The 75-mile route took us into the farmlands of Indiana; at one point, we actually passed a farmer carrying a bucket of slop across the road to a feeding trough for his pigs. At other points it felt as though we were biking through a corn tunnel. (Never has endless corn looked so wonderful as when it buffeted us from the mild headwinds during the last twenty miles.)

We crossed the finish line a little after 3:00, so we didn’t set any records for speed. (Nor did we beat most of the century riders.) But the feeling of accomplishment and the peculiar pleasure that comes from exhausting physical exertion were all we felt when we pulled back into Oxford (West Spring Street like our Champs-Élysées) to the perfect ending: a cheering section.

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On the road deux

A slightly less safe bike selfie from the Sunday route.

Riding with people we have the honor of calling friends was incredibly special to me (Erin). All of us got to have quality time with each other while, you know, doing some of the hardest exercise of our lives. (The phrase “We can do hard things” seemed a constant ticker tape scrolling in my mind.) I cherished the one-on-one conversations I had on the road–it struck me how much more enjoyable it was to be doing something hard and to be catching up with one another, talking about things utterly ordinary and extremely profound. Those I didn’t get to talk to on the road, I relaxed with after the ride over a beer and the surprisingly pleasing combination of potato chips dipped into coleslaw. (Seriously. Try it.)

I’m a chronic replayer of time, and this weekend proved no different. Even still, I keep playing the “two weeks ago, we’d be checking into the dorm” or “eating lunch at the 28 mile marker” or “doing a spontaneous yoga pose in front of Hooterville” or “hanging out at the tattoo parlor.” And then wish it was two weeks ago.

I am so proud of my team. I am also very grateful that they were part of the audience when I briefly told my story in front of the 551 riders Saturday night. The MS Society asked me earlier in the week if I’d consider, and it didn’t take me long to say yes. But it’s one thing to agree to something and another thing to stand nervously in front of hundreds of people. I talked about when and how I was diagnosed with MS, what the last year and a half has been like, and why I ride. I emphasized how the need for fundraising clicked with me this year since my first medicine wasn’t working but my new one is. Without fundraising and research, which led to my new medicine, my future seems something I don’t want to imagine.

I left the stage unsure about what I’d said — if it made sense, if it was what the MS Society wanted, if it was right at all. Ben and my teammates all reassured me. The rest of the weekend, so many people came to give me a hug or a word of encouragement, and moved me to my core.

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Biking the Covered Bridges of Butler County. 

As of Saturday night, when Steve Niemann, the Teams Development Manager at the Ohio Valley Chapter, announced the top ten fundraising teams (fundraising continues through September 25th), we were in tenth place out of over fifty teams, even though many teams had significantly more members than we did. At one point, Erin was in the top five of fundraisers overall. This is a testament to the extreme generosity of our friends and family, as well as the fundraising efforts of our teammates. We cannot say enough how humbled we are by everyone’s generosity toward us.

Battling MS can be such an amorphous thing — how do you attack something that doesn’t have a cure, that seems to move invisibly, that appears to lie dormant for long stretches of time before flaring up in spectacular and terrifying fashion? What we love about Bike MS is that it gives us something tangible to do: Ride a bicycle! For a long time! Until our butt hurts like nobody’s business! That’s easy, compared to the larger battle at hand. As Erin put it in her speech, “I hate having MS, but I love riding with MS.” We appreciate everyone who is on this journey with us.

friends, MS

She Rides With MS

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When we picked up our race packets for the 50-mile Bike MS ride, a very mannered young man, probably no more than twelve, was there to greet us. “What name is the registration under?” he asked. “Erin Vore,” Erin said. The boy scrolled through the list, located Erin’s name, and then said, “Erin Vore! It’s Erin Vore everyone!” At this, everyone — which was three other people working the table — promptly came over and shook Erin’s hand. “You were one of our top fundraisers!” the director, a man by the name of Steve, said. Another man, just a volunteer, was content simply to shake Erin’s hand. “You’re an all-star,” he said. The twelve-year-old, who may have actually been a forty-year-old trapped in a pre-teen’s body, said things like, “You did an exemplary job fundraising,” and kept checking items off a list to give to us: a standard-issue Bike MS t-shirt; a Bike MS windbreaker; a Top Banana riding jersey (appropriately colored yellow), given to those who raise at least $1200. (It speaks to the generosity of our friends that Erin raised nearly $2800.)

“How many years have you been riding?” Steve asked.

“Well, this is my first,” Erin said. “I was diagnosed last December, and this was one of the first things we both agreed we wanted to do.”

“You have MS too!” Steve said.

“That means you get an ‘I Ride with MS’ jersey,” the twelve-year-old said, promptly taking one off the table. Erin was now holding four articles of clothing.

We felt like celebrities. And that, admittedly, is a nice feeling to have, and one unlike most of the feelings we’ve had since Erin’s diagnosis eight months ago. That feeling helped compensate for the fact that we had done absolutely no — as in zero — training for our fifty miles leading up to race day.

But you can get a lot of mileage off the generosity and support of your friends — both those who supported us (financially and otherwise) before the race, and those who showed up at the UDF on the corner of Remington and Loveland-Madeira … the only people we saw, anywhere on the route, who comprised a cheering section for anyone on a bicycle.

Processed with VSCOcam with m5 preset The people not in bike jerseys are definitely faking how much fun it                                       appears to be watching a bike race.

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There were a few people on the ride who also had “I Ride With MS” jerseys, but the majority of riders were people who knew someone with MS; just wanted to support the cause; or were simply happy to raise at least $300 to take a spin from Bellevue, Kentucky, up to Camp Kern in Ohio.

What got us through the last fifteen miles — besides low gears and a lot of Powerade — was the knowledge that we have great friends and supportive family; that we are not embarking on the journey of life with MS alone; and that there were other riders out there with us — not just those whizzing (or plodding) by the cornfields of Lebanon, but also those like our friend Katie, who did the Denver MS ride, and others all around the country. One rider had a “We Bike The U.S. For MS” jersey full of signatures. His body was a testament to the names of those with the disease, his presence a reminder that while things like MS can isolate and frighten us, they can also be turned outward, pointing us toward community, interdependence, and hope. So we ride on.
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UPDATE!: We have somehow graced the front page of the Ohio Valley Bike MS recap. As our friend (and Bike MS PR person/live-tweeter) Andrew Cashmere would say, “Boom.”

faith, MS

The Book of PsalMS

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.”