It has been 11 years since the Thursday morning Shani Am. Moore woke up blind in her left eye.
She jumped out of bed and ran to the bathroom, thinking she forgot to take out a contact lens. But there was no contact lens. She had lost her sight in that eye.
Three weeks later, she started losing vision in her right eye.
That was Moore’s first experience with multiple sclerosis, a chronic disease in which the immune system attacks healthy tissue in the nervous system, causing fatigue, pain and even paralysis and blindness. Moore’s sight has mostly returned, but she still experiences agonizing muscle spasms and the left side of her body remains partially paralyzed.
Additionally, the medication Moore is taking for MS suppresses her immune system, meaning she is vulnerable to diseases – including COVID-19.
Some are even recommending that those with MS suspend such treatment because of the pandemic. Because each case is different, however, MS patients should be talking with their healthcare provider about treatment options before making a decision, according to Jennifer Wise, the National MS Society’s president for the Southern California and Nevada regions.
"Every time I walk out my front door, there’s a threat that’s invisible to my eye that is potentially going to end my life," Moore said. "There is also a threat that is invisible to my eye that is living within my own body that is also at risk of ending my life."
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There is no cure for the disease, which affects more than 2.3 million people worldwide, including 1 million adults in the United States. Moore is hoping to change that. On Sunday, she’ll participate in a fundraising walk for the MS Society, walking three miles of laps in front of her East Los Angeles home while wearing a mask.
Her fundraiser team’s original goal was to collect $11,000 in donations – a reference to the number of years it has been since her symptoms appeared. After surpassing that benchmark within a matter of hours of launching the fundraiser, they kept increasing the goal.
As of Saturday afternoon, they collected $37,000 – most of it raised by Moore, the organization’s top participant by donation. The team’s new goal is to raise $50,000 by Sunday. The funds, and those collected in similar "virtual walks" organized by the society will be put toward MS research.
"People have put me in absolute awe of how extraordinarily generous people are especially in the hardest times," Moore said.
Moore’s disease has not stopped her from achieving other lofty goals. A graduate of Princeton University, she’s also writer and a lawyer. Living with MS, she says, has helped her appreciate each day – and the sunrises she couldn’t fully see for some time.
When she walks on Sunday, she adds, she will encourage others with MS by reading out inspirational quotes, the names of people with MS or COVID-19, and the names of healthcare workers on her Instagram story.
For Moore, living life is an exercise in courageousness. The MS within her and the coronavirus outside her door are both dangers.
But there is hope, she believes, for both diseases.
"My fear [of MS and COVID-19] is tempered by my faith that everything is in God’s plan, and my absolute confidence in the collective good of people. There are a lot of very smart, very hard-working individuals who are pushing for what seems to be impossible – a cure to some of the greatest plagues of our lifetime," Moore said.
"With MS, it’s a daily battle against pain, against the anxiety of what future disability will come. With COVID, it’s the same thing. And with both, there’s the hope, again, that united, there is every, every possibility of attaining seemingly impossible dreams."
For more information on the MS Society's virtual walks, or to donate to Moore's campaign, visit her fundraising page.
