Jo Haines used to run half marathons. Running used to be a huge part of who she was. Then, two days before Christmas in 2009, she was diagnosed with multiple sclerosis (MS). It had started out with numbness and tingling in her arms and legs, as if they were asleep all the time. There was also extreme fatigue, which Jo likens to that which pregnant women experience during their first trimester, only it never went away. Jo’s doctor did some tests, including one for what’s known as the Babinski reflex, which is when they press something on your foot from heel to toe to observe the way your toes respond. From there, Jo saw a neurologist who put her through another battery of tests including a spinal tap. “When you have MS,” Jo explains, “they try to rule everything else out, because the symptoms could be a lot of other things.” There’s no blueprint. Every case of MS is different.
For Jo, getting that diagnosis was emotionally devastating. She didn’t know what to do. One doctor put it bluntly: “This won’t kill you.” While that statement might be considered cold comfort, Jo has found consolation in it. In the beginning, she really had wondered, Is this going to end me? After time, she realized that it doesn’t end you, but it does change you.
When you have MS, you have to learn how to adapt. “It’s a deteriorating disease,” she explains. Some people lose functionality or cognitive abilities right away, and some will go twenty years without an episode. It’s so unpredictable. Jo can be fine in the morning then brought to her knees, instantly, that afternoon.
There’s the things people say. Chief among them: “But you look so healthy!” Jo has to help people understand that when you look at someone, and they look fine, that there may be physical hurt in their body that might not show. It’s an important reminder that you never really know, from looking at someone’s outside, what might be going on in the inside. For example, there’s a phenomenon known as the “MS hug,” which is a pain that radiates from your back, like fingers around your ribcage, and you feel like you can’t breathe. No one can see that. And unless you’re someone who’s verbal and will explain it to people (Jo is not), people never know.
One of Jo’s biggest struggles remains knowing how much to share with people so they know how she is, but without coming across as complaining. As awful as her disease is, Jo has a friend who woke up and was blind—and that’s how she found out she has MS. Another friend found out because one morning the entire side of her body stopped working and she couldn’t get out of bed. Jo wants to be grateful that she can see and walk. However, “It’s not that it doesn’t suck,” Jo says. “If I could get rid of it I would in a heartbeat. I loathe it.”
On top of managing the disease, life goes on. Jo has a husband and five daughters: a 14-year-old, two 12-year-olds, and two 10-year-olds. Her youngest will crawl into bed with her and ask, “Mommy, when is this MS going to go away?” And rather than shrug, roll over, and go to sleep, Jo answers by fighting hard for a cure. You see, immediately upon being diagnosed in 2009, she found Walk MS in Raleigh. “I needed to take this diagnosis and do something positive,” she says. And so by the following April, Jo had formed a team, aptly named, The Village People. The proverb “it takes a village” had popped into her head after realizing that her usually self-reliant self was going to need to lean on friends.
The atmosphere of Walk MS is pretty phenomenal, Jo says. She describes it as intensely personal. It’s not a race. It’s more of a big party. You can do a 1-, 3-, or 5-mile walk around the PNC Arena. They have face painting, bouncy houses, and lots of booths where Jo’s five daughters love snagging free stuff. It’s a family event, with a fun atmosphere, but it’s also very moving and inspirational. “You see people who are definitely worse off than you,” Jo says. But when she locks eyes with some of her fellow participants, she says, “You both have this understanding of what each other’s going through, even if you aren’t in the same situation.” This uplifting event fuels Jo each and every year. It helps her girls understand, too, not only what’s going on but also the positive stuff that can come out of it, including the way you can help others.
When Jo and her friend attended the soft grand opening of The Mason Jar Tavern, they never dreamed of the generosity that would be extended to their cause. When owner Jon greeted them, he spoke about the excitement of owning a new restaurant and mentioned wanting to really be a big part of the community. So Jo and her friend took a chance and asked him how he would feel about donating to Walk MS. She was hoping they might do a little fundraiser at the establishment so that a small portion of the proceeds could be donated to the cause. Instead, Jon came back with, “How about I give you a stack of $20 gift cards, which you can sell for $10, and all of the money can go to MS?” That first round of gift cards went in 36 hours, so Jon came back with an additional 75. “He was so excited to find out that we needed more,” Jo says. “I won’t pretend to know him on a personal level, but it was an amazing gesture and his generosity blew me away.”
Bombshell Brewery kicked off a huge party the day before the walk, which included a cornhole tournament, a pig on the smoker, raffles, and live music. Having the support of local businesses has helped Jo and her team raise over $60,000 since inception. But the truth? Fundraising is a huge fear of Jo’s. “I only do it because I want a friggin’ cure,” she says. The kindness of strangers amazes her each and every spring. “I mean, someone like Jon Pierce comes into town and basically hands you $2,000,” she says, in awe. And then there’s her 14-year-old daughter, who has organized a loose change drive, earning $1,300 in her first year alone. Many of their neighbors in Sunset Ridge North have donated, and some have even taken their loose change to a Coinstar kiosk, cashed it in, and left checks under their doormats if they know they aren’t going to be home. “It takes small steps to make a big difference; that’s what Walk MS is about to me,” she says. Small steps.
Jo has found, over the years, that the more people she talks to, the more people she realizes have a connection to MS. You learn a lot about yourself and the type of person you are with this disease, she tells me. People tell her things like, “You’re such an inspiration,” and, “I could never do what you do!” But Jo says she just tries to get up and do something every day. When people allude to her having a kind of grit that they don’t have, she tells them that they have absolutely no idea what they are physically or mentally capable of. Jo asks herself, “Am I gonna rise to the challenge or am I not?” Make no mistake, there are days when she has some pretty choice words for this “challenge,” but ultimately, Jo has decided that MS is not going to take the most beautiful things from her hands.
The Walk MS already took place this year, but fundraising is still open. To support Jo and her team, The Village People, visit www.nationalmssociety.org, click on “Support an Event Participant” and then enter Jo Haines. Or, you can find The Village People on Facebook by searching for “The Village People MS Walk Team.”
