“They found a way to create community, even though we had to be apart.”
It was a Thursday morning in 2009 when Shani A. Moore woke up and realized that she couldn’t see a thing out of her left eye.
“It was like a thick black ink had been poured over it,” Moore says, “but there was nothing in my eye or on my eye.”
“It was terrifying,” she continues. “All of a sudden, I woke up and half my world was gone.”
Her husband at the time rushed her to urgent care. After a round of steroid treatment, a series of MRIs, and multiple blood tests, she was diagnosed with multiple sclerosis (MS).
MS is a chronic illness where the immune system attacks myelin, the protective layer around nerve fibers in the central nervous system. These attacks cause inflammation and lesions, affecting how the brain sends signals to the rest of the body. In turn, this leads to a wide range of symptoms that vary from person to person.
While Moore ultimately got her sight back, she’s partially paralyzed on her left side and experiences muscle spasms throughout her body. She also has days when she struggles to walk.
She was 29 years old when she got her diagnosis.
“I was working at a big law firm, I was on the cusp of closing a big case,” Moore says. “MS is often called the ‘prime of life’ disease because it often comes on in these moments of high expectation.”
Moore, now divorced, has lived with her diagnosis for 11 years.
“I think of my treatment of MS as multifaceted,” she says. “There’s the medication that I’m on, there’s the exercise, which is really important. Relaxation, too, so I meditate. My diet is also very important, and I have a support network that is very important to me.”
However, since the outbreak of COVID-19, access to her support network has become a lot more difficult.
“Because the medication I’m on shuts down my immune system, I’m in the high-risk group for COVID,” Moore says.
That means it’s incredibly important that she stay away from others for her own health and safety.
“I have been self-isolating since March. I try to limit my grocery runs to once a month,” she says. “The forced separation has definitely been one of the biggest challenges.”
Staying connected to people, even when she can’t be physically close to them, has been a huge challenge for Moore.
Of course, technology like Zoom helps with that, but some days she says “it feels like everybody is paired up on Noah’s ark with their loved ones, except me. And I’m just in this little cocoon by myself.”
She’s not alone in feeling this way.
Many people living with chronic illnesses like MS are at risk for the worst symptoms of COVID-19, and so they’ve had to take physical distancing incredibly seriously.
For some, that’s meant staying away from loved ones and family for months and months on end.
To try to relieve some of that loneliness, local and national organizations have stepped up to support those living with chronic illnesses. Many have delivered food and personal protective equipment (PPE).
Others have created free online therapy programs.
And some, like the National Multiple Sclerosis Society, have moved their services and programs online so that even with physical distancing, no one is alone in facing their chronic illness.
“We created virtual connection opportunities quickly and have virtual events launching to minimize feelings of isolation and anxiety for those living with MS,” says Tim Coetzee, chief advocacy services and research officer for the National MS Society.
This includes more than 1,000 interactive support groups that are meeting virtually across the country.
In addition, the MS Navigator program provides folks with MS a partner to navigate the problems and challenges caused by COVID-19, including employment, financial, care, treatments, or otherwise — no matter where they live.
“These are difficult times, and the [National MS] Society wants people with MS to feel that they have an entire organization in their corner,” Coetzee says.
This past April, the National MS Society moved their Walk MS event online. Instead of one big walk, they held 30-minute Facebook Live events, and participants did their own individual exercises, be it backyard activities, walks on their own, or another physically distant activity.
“They found a way to create community, even though we had to be apart,” Moore says.
That went a long way toward making her still feel connected to others.
Moore participated in the Los Angeles Virtual Walk MS and walked 3 miles of laps in front of her home while keeping 6 feet apart from others and wearing a mask. She also raised $33,000 for the cause.
Despite fundraising efforts, the pandemic has taken a toll on advocacy organizations, just like it has on small businesses.
“With the hit of the pandemic and cancellation of our in-person events, the Society stands to lose one-third of our annual revenue. That’s more than $60 million in vital funding,” Coetzee says.
That’s why, if you can, organizations like the National MS Society need your donations (and volunteers) now more than ever to support the important work that they do.
One important way that the National MS Society is working during the pandemic is by reaching out to people like Laurie Kilgore, who lives with MS.
“The greatest challenge [during the pandemic] has been loneliness, and not being able to see or spend time with others. Social media helps, but only a little. I miss the hugs and kisses, and the times we used to spend together in person,” Kilgore says.
“The MS Society has reached out to see how I am doing during this time, which means so much and is a great comfort and support,” she says.