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Life with MS
Emily B. and Mr. Oscar Monkey
By Kimani Hendricks
At the start of her eight-grade year, Emily Blosberg noticed a strange sensation in her hand on the way to school. "It was similar to wearing a glove, but I only felt it on one side of my hand; within two weeks, my entire body felt as if it had fallen asleep," she said. "Soon after, my vision was similar to those old, scrolling televisions, and my family took me to a doctor." One told Emily her symptoms resulted from anxiety following a battery of tests and to "breathe in a bag and you'll be fine." Fourteen months, more than 800 needle counts, several opinions and MRIs later, Emily was diagnosed with multiple sclerosis on Nov. 18, 2011.
"My dad has lived with MS since I was two years old, so I grew up with the disease in my family and life," said Emily. Over the years, Emily's parents taught her and her siblings to read their father's MRIs, and once she underwent her own, Emily requested copies of her scans and noticed two lesions before her neurologist visit. "That day, my dad reminded me that although I had MS, it did not have me; he showed me how not to allow multiple sclerosis to get in the way in dealing with the uncertainty of my symptoms," Emily said.
Extra Credit Assignment
Despite being at the top of her advanced classes and student council president, Emily's closely-knit friendships unraveled, and she contacted the National MS Society to connect her with other youths in the area with MS. "They told me that they didn't know of any, which made me feel more isolated, because the only other people I knew with multiple sclerosis were adults," she said. Eager to start anew as a freshman, Emily remained discreet about her illness until rumors swarmed the school.
"My peers convinced themselves that I was a teacher's pet; they wondered why I was allowed to arrive late, leave early, and turn in homework after everyone else." Emily continued, "But they didn't know my struggles with pain or dizziness, nor the fatigue that prevented me from staying awake long enough after school to complete my work." To disperse the gossip, Emily chose to open up about her diagnosis.
As an extra credit assignment, Emily's biology teacher greenlit her presentation about MS and the effects on individuals; culminating the presentation, Emily said, "The reason I know all of this is because I have MS." About a quarter of the class embraced her, offering support of any kind. Within months, that support multiplied during an all-school assembly; she replayed a recent local news story about her and her father's diagnoses and recruited her teammates for Walk MS, a National MS Society event.
Adolescents Unite
More than a year after her initial inquiry, a staff member from the Society informed Emily that they found another teenager with MS in Sioux Falls, S.D., approximately five hours away from her home in Minneapolis. In no time, she and the girl were friends on Facebook. "It was an incredible relationship because we understood each other," Emily said. "And then two of us turned into five of us! The girl with whom the MS Society connected me shared a neurologist with a few other teens in her area that had multiple sclerosis."
One day, the idea of meeting in person arose in their group chat, and by Friday of that week, Emily and her father drove to Sioux Falls and met her new friends at IHOP on Saturday morning. "We spent the day just being teenagers; we teased each other about our balance and vision issues, you know? Everything MS," said Emily. "We never did it maliciously, but as a way to show we were not alone. As we returned home to Minneapolis, I thought to myself: there have to be other teenagers with MS out there. We can't possibly be the only ones."
Emily spoke to the president of the National MS Society about an idea to unite adolescents with MS. While they liked the concept, the organization thought the focus should be on children whose parents live with MS. At that time, 10 years ago, Emily took the initiative and did the footwork alone. "I found many youths on social media from Facebook to YouTube and requested to connect with them.
Eventually, I put a large map over my bed and used push pins to keep track of the other kids with MS that I found. Once I had a bunch of pins in one area, I informed each child about the others in their vicinity and asked if they wanted to contact them. I remember a girl in North Carolina who, like me, was 16 at the time, but had been diagnosed when she was only four years old," Emily said. "I was the first kid she ever met that also had MS. That day, I put my foot down and said, 'this has to change.'"
Oscar, a Winner
Emily knitted her first sweater at seven, and throughout her time in school, she earned the reputation of being 'the girl with the knitting needles,' but at one point, her skin sensitivity forced her to stop. "The yarn running across my fingers was very painful," she said. "It was devestating, and I had to find some way to keep my hands busy."
One of Emily's friends taught her how to make sock monkeys, and she began selling them as fundraisers. After finding a pair of orange socks in the hunting department of a store, Emily decided to make a sock monkey for herself for the first time in a while. "I name all the sock monkeys I make; usually, the name comes to me, and I'll introduce them to my family as 'so and so,'" said Emily.
"Other times, I'll make a sock monkey, go into the living room and ask my family what their name should be. I remember making Oscar and telling my family that was his name, but my dad remembers naming Oscar himself; no one knows for sure."
Oscar would accompany Emily to several MS events, serving as a conversation starter and allowing Emily to share her story. "I got diagnosed as a kid, and Oscar is sort of a kid's toy," Emily said. Someone suggested she start a Facebook page for Oscar so the community could stay in touch with him and see what he's doing. With that page came the organization: Mr. Oscar Monkey.
"It was a great tool, in that I used Oscar as a way to teach people about pediatric MS and further connecting other children," she said. Afterward, another person messaged a wish to Oscar: that he could come and visit them. Averse to the idea of sending Oscar away, Emily's mother encouraged her to make more of him. Since orange socks are uncommon and pricy, Emily purchased white socks and dyed them orange.
"I taught my mom how to make Oscar, and to this day, we have 'monkey days' where we binge-watch Netflix and make a bunch of sock monkeys,' said Emily. "Each takes two hours, but it's excellent hand therapy and a way to form the community."
The first care package got sent out in December 2015, consisting of brochures about the organization and Mr. Oscar Monkey himself; since then, more than 500 care packages reached other children with MS. "I never charge a dime for any of these items. My only request is that they share pictures or videos with us on social media once they received their sock monkeys," she said.
MS an an Umbrella
Aside from the care packages, Emily sought other ways to extend Oscar's reach. In February 2018, the organization hosted its first annual Buddy Bash, a three-day family camp in Minneapolis filled with team-building, Q and As, and fun. "They make tic-tac-toe bags and other trinkets and goodies to include in their care packages," Emily said.
"For the Q and A, we split up the parents, kids with MS, and their siblings so everyone has a chance to speak with neurologists." Each bash ends with a trip to the Mall of America, adjacent to the Minneapolis-St. Paul International Airport. All of Oscar's programs run between $25 and $35.
While the number of families has tripled since the first Buddy Bash, Emily recalls the immediate change in two young ladies who, at first, were averse to attending. "During our second Buddy Bash in February 2019, a girl newly diagnosed in November 2018 complained the entire drive from Michigan to Minnesota about attending an event hosted by a sock monkey," she said.
"She was very bitter, mad at the world and her diagnosis. Before the camp was over, her father came to me and said that he hadn't seen her smiling since November. The girl opened up to the other teens and families completely; that's when I knew the community needed these camps."
In February 2020, when that same family returned for the third Buddy Bash, their daughter comforted a new and bitter girl at the camp. "She said, 'I know what you're going through,' and they took to each other quickly," said Emily. "That girl who first attended camp with us last year before COVID-19 has, too, blossomed, and it's wonderful to see."
Emily was inspired by the Teen Adventure Camp, exclusive to teens with MS, that she attended in Rhode Island from 2014 to 2018 that changed her life. "It brought me right back to that weekend my dad and I spent in Sioux Falls, but so many more teens came together," she said. "In early-2019, when I learned that the hosts canceled their summer camp, I raised over $15,000, and by July, Mr. Oscar Monkey had its first annual Teen Camp with 25 kids from 14 different states!"
A five-day event, the teen camps consist of MS-friendly and team-building activities; each takes places either indoors under air conditioning or in water. In years past, the kids have gone kayaking and participated in art and yoga classes. The camp mentors are past members who hold discussions with the campers on various sujbects such as personal and professional relationships, college prep/transition, and taking the reins of responsibility in speaking to one's doctors.
Mr. Oscar Monkey also includes children with other demyelinating conditions. "We see MS as an umbrella whether it's NMO, ADEM, or another that's fairly similar," Emily said. "I think half of our campers don't even have MS but one of the other flavors, as I like to call them."
New Firsts
Following the outbreak of COVID-19, Oscar and Emily remain in touch with their teen campers through video chats on social media. "They always remark on how they miss their 'camp family' and anticipate the day we all see each other again once everything is safer," said Emily. "It's more than just camp to us; it is a family reunion."
For nearly a month at the start of COVID, they held daily video calls, then spoke twice a week but now reconnect twice a month since the school year resumed. Mr. Oscar Monkey's latest endeavor is starting an annual scholarship program for teens with MS, their siblings, and those who have parents with MS. Through Oscar's Scholarship, Emily stresses the importance of the inclusion of families affected by MS.
"2021 is the first year we're doing this! We've got amazing applicants, and we hope to help most of them." 2021 crossed another "first" from Oscar's list with its Young Adult Retreat designed for recent high school graduates and those past their teenage years with demyelinating conditions; this weekend affair occured immediately following the teen summer camp.
When asked how she felt about the conception of Mr. Oscar Monkey coming into fruition, Emily replied, "So many emotions overtake me as I witness the newly formed connections of other kids and families affected by MS through our work. It honestly brings tears to my eyes."
Emily continued, "I always thought, 'let me see if this small thing I do makes any difference at all,' but then people who we've reached share their stories, and it overwhelms me. I created something impactful for the MS community, and Oscar bridged the gap. Ending the loneliness, that familiar loneliness I remember when I was their ages, and relief for the parents and families caught in a whirlwind of confusion; it's gratifying."
For more information on Mr. Oscar Monkey, please visit: website,
www.mroscarmonkey.org
,
Facebook, Oscar the MS Monkey
,
Twitter,
and
Instagram
@mroscarmonkey. Lastly, click
here
to watch the Multiple Sclerosis Foundation's profile on Emily and Oscar.