When we're diagnosed with multiple sclerosis, does a sign appear on our foreheads, saying, 'Now Soliciting Medical Advice'?
"When people would see me on the scooter," said Colleen Voith, who has remitting-relapsing MS in Chicago, "they would say things like, 'I know a lot of people who have MS and walk just fine,' or 'Are you getting enough exercise and taking the right medications?' I would get so angry.
"I think people need to be more educated about MS and how no two people are alike."
Since she was diagnosed 27 years ago, Colleen and her husband Dan raised a family of four and now have two grandchildren. She's also gone from cane to walker to scooter, and had to give up driving and working. But she got a phone call with an unusual request, one that led her down a new road in life through volunteering, joining thousands of others with MS who give their time and efforts to help others. With so many of their own challenges, why do they do so? This National Volunteer Week is a good time to hear a few of their stories and the values that drive them. Opportunities for volunteering can be big or small.
The call to Colleen was from her niece, studying physical therapy at Northwestern University. She asked a question you don't hear every day: would you be interested in coming to my class and answering questions about MS from my teacher and fellow students?
Hm, what do you say to that: complete strangers staring at you and asking you questions about... who knows what they'll ask? But sometimes a mischievous dimple winks from Colleen's cheek. Sure, she said, I'll do it.
"I loved doing student labs," she says. "The students are brilliant and said hands-on with a neuro patient helped them better understand how physical therapy helps with MS."
They all liked the experience so much that she appeared the next three years as well, the last time remotely (with Dan's tech help). It was fulfilling, and surprising how fun – but kind of not. Because Colleen was also volunteering in another role.
The local hospital was knocking down its aquatics center, relied on by Colleen and many others for MS Aquatics and water fitness. "This became my exercise and support group," she says. She helped organized a protest campaign (Saved OPHFC on Facebook), and they won and saved 100 jobs! The renamed Orland Park Health and Fitness Center remains open, and pending Covid, will offer MS Aquatics and MS Yoga.
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| Don't rile up the red scooter mom: Colleen Voith in action |
"It was so fun. I love to volunteer. It makes me feel good to help others, especially those newly diagnosed," she says. "The best therapy for me was fundraising and volunteering for various events."
Another event Colleen took part in was Skydiving for MS in Rochelle, Illinois, when she jumped out of an airplane (twice, because Colleen) along with Dan and some 20 other family and friends over the years, codename: "Colleen's Commandos." But just as important, she started lending a hand to the volunteers organizing the event, Cecile and Dave Perez, who had grown it from a one-person fundraiser to a yearly occasion that drew people from across the country. During the year, Colleen helped Cecile raise donations and raffle-items from local businesses.
"It was the best time ever! I really can't see going back," Colleen says, but the dimple gives her away, "but you never know."
Cecile has RRMS and jumped twice. She was also the co-chair and chief enabler, the Mama Bear of the event, working year-round to stage the epic fundraising raffles (and catered meals) in the evenings. MS fatigues you, but on event day she worked through afternoon heat and anything else that might pop up to make the event happen and the skydivers (with and without) MS jumping. With characteristic humility she calls the event "a collaborative effort."
"I had so much fun and help from my family and Colleen with prizes," she says. "The volunteers that day were the backbone of the event and made the event special." Skydiving for MS raised over $250,000 for the National Multiple Sclerosis Society.
Cecile also volunteers in the MS Society's Peer Visitor Program, keeping contact with people with MS living in nursing homes. Once a month she visits participants who may be dealing with isolation and loneliness. Simply listening and supporting each other over time builds friendships, each looking forward to seeing the other.
"We are in this together," Cecile says, "and helping someone with MS, we are helping ourselves."
Since the pandemic closed many of the facilities to visitors, the volunteers have taken to sending encouraging cards. "To let individuals know they are not alone, that we miss them," she says, "and to put a smile on their face. Better times are coming." It is a workaround that allows volunteering from home.
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| Awards night: Dave and Cecile Perez, Dan and Colleen Voith |
In 2016, Colleen, Cecile and Dave Perez won the NMSS Greater Illinois Chapter's Volunteer of the Year Award.
On a different coast and a different part of the MS journey is Pam Swint, a married mother of two in Redwood City, California, who in February 2020, had two shoes drop at once: imagine learning you have primary-progressive MS at the same time that the world is shutting down for the worst pandemic in a century. Thankfully, her sense-of-humor-as-coping-skill remained open for business.
"Everyone masking up right as I became immune-compromised with Ocrevus?" she says. "Awesome."
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| Taking a stand: Pam Swint |
During lockdown, she took advantage of MS Friends, and was able to sort through some of her own issues by talking to volunteers with MS. She liked the experience so well, she wanted to try volunteering herself. Doing so from home made it more accessible.
"I'm the Mayor of Muscle Fatigue," she says. "I visualize that I have a little vial of energy for the day. I use it up pretty quickly, and it takes a long time to recharge."
Now she's a moderator for an MS Society Facebook forum, and so far the shoe fits fine.
"Volunteering has been huge for my mental well-being. Being part of a team, interacting with a consistent group, and problem-solving are all wonderful ways to not only distract myself from this disease, but also learn more about available resources." Pam considers the other volunteers her support group. "They tend to [be] proactive and supportive people.
It's helped give her the energy and desire to do in-person volunteering with Bike MS and Sail MS, putting together a crew of MSers to sail the San Francisco Bay and down to Mexico.
Thanks to all MS volunteers, with the disease and without, whose efforts of all sizes are step-by-step making this a better world.
To volunteer: https://www.nationalmssociety.org/Get-Involved/Volunteer
Find your local Walk MS, link shortcut: https://tinyurl.com/2byzpw4y
For the #SavePHFC campaign, go to Saved OPHFC on Facebook and scroll down a couple years. Fun David vs. Goliath stuff.
SailMS: https://sailms.org/
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