Spreading Awareness about Multiple Sclerosis with Writing
For some, blogging is a fun pastime. For Nicole Lemelle, it’s a lifeline—a chance to connect with a community of patients and tackle uncomfortable but vital subjects, like severe disability.
Nicole has been fighting multiple sclerosis (MS) since 2000, when she was in her mid-20s. In addition to managing symptoms, she’s also had to deal with subpar care and misinformation: One neurologist she consulted told her that as an African American, she had probably been misdiagnosed because “Black people don’t get MS,” Nicole recalls. (In fact, while the incidence among people of color is lower, symptoms tend to be more severe, according to researchers at the National Multiple Sclerosis Society.)
Another neurologist, who admitted he had little experience with MS patients, told her that she should combat the sudden exacerbation of symptoms she was experiencing by staying inside in the air conditioning and drinking water. “I was sick. I was blind. And he had no answers,” she says. “But I was new in town so I stayed with him. And it was all working out, until it wasn’t. People with MS should really try to find a neurologist who is an MS specialist.”
Her symptoms—which were erratic at first—eventually become disabling. Nicole was forced to give up her career as a high-flying, well-compensated cardiac device specialist in Washington, D.C. Her constant fatigue and occasional “brain fog” (an inability to focus is a common MS symptom) were no match for the long hours and job pressures.
Part of her work involved assisting cardiologists during surgery. “I [doubted] my ability to make precise judgments. That’s not good when you literally have people’s lives in your hands,” she says. “To excel in that position, I not only needed physical strength and stamina, but also the utmost confidence and ability to recall my training. I was lacking both.”
Back to home base
In 2010, as a result of her health, Nicole and her husband, Tommy, decided to move home from D.C. to New Orleans to be closer to family and lifelong friends.
There, she finally found a neurologist she was comfortable with and who took aggressive steps to mitigate the effects of her disease. Even a serious flare-up that landed her in the hospital in mid-2019 was resolved successfully, and she has been stable ever since with few new exacerbations or symptoms. Nicole continues to confer with her neurologist about new treatments and ways to manage pain, including medical marijuana, which was recently legalized in Louisiana.
She can no longer trust her legs, and has gone from a walker to a wheelchair to a motorized cart to get around—on her good days. Sometimes her muscle spasms are so painful, she relies on a fentanyl patch. Even when she finds a helpful treatment, sometimes it means side effects and problems in the long run: After repeated use of steroids in the early years of her diagnosis, Nicole discovered she had osteoporosis.
At first, Nicole had a home aide to help her with dressing and personal care when Tommy was at work. But “we kept having to fire people,” Tommy recalls. “They wouldn’t show up.”
It’s a very common complaint among MS patients who need help with basic tasks, Nicole says. “Most are glorified babysitters. They don’t have any medical background.” For the care she needed, “the choices are slimmer and more expensive. I was paying $110 for six hours, plus gas mileage if I wanted her to drive me somewhere. Tommy worked eight hours [a day] so we always paid over that amount.”
The Lemelles took a look at their savings and figured that Tommy could afford to leave his job for five years so he could stay home and take care of Nicole.
Ten years later, he is still going strong in his role as caregiver.
Finding her voice
Nicole writes about her MS journey in mynewnormals.com, a blog she started soon after they arrived in New Orleans. There, she chronicles her struggles to accept each newfound limitation, only to adjust to yet another barrier as her condition progresses. She has a wide following and hears regularly from patients who identify with her struggles.
In fact, Nicole’s blog posts have led to a number of speaking opportunities at conferences and panel discussions on accommodating people with MS on the job, using public transportation, social media, and living with disabilities.
Unfortunately, being a presence on the internet often opens you up to trolls and bullies. One man posted that her “whining had distracted from the uplifting aspect of your story.”
“You have the right to believe my experiences or not,” she wrote in response. “Just please don’t tell me, ‘It can’t be that bad.’ Because you don’t know how bad MS can get for me.”
Nicole deeply values opportunities to get out of the house—whether to the movies, doctors’ appointments, or to visit family. Nicole especially enjoys physical therapy sessions and has formed close relationships with the other patients. “She liked spending time with people who were on her level with the same physical challenges,” Tommy says.
Then COVID struck. Gone were the social outings, the dinners with friends and family. And when she realized she could no longer attend her physical therapy sessions, “I cried like a baby,” Nicole says.
With the onset of COVID, Nicole has written more about the sense of isolation the pandemic has brought and the added difficulty for people suffering from pain and other chronic conditions.
In a recent blog entry, she described waiting in the car for her husband to return from the grocery store, listening to the news about COVID on the radio. “They say we are in a war,” she wrote. “But I’m not a soldier. I don’t want to fight. Clearly already struggling, I can’t battle anything else. I’m currently fighting for my sanity. For my independence. For some normalcy.”
A beautiful mind
When she first launched the blog, “Nicole would write, write, write,” Tommy says. But as her symptoms progressed, her posts became less frequent. “Now, it might be two or three months between posts. We’ll be riding in the car and all the sudden she’ll come up with an idea, and I’ll try to remember it so I can tell her about it when we get home.”
Through the blog, Nicole puts into words the struggles of living with a disease that can inhibit her ability to talk clearly when she needs to communicate, of fighting brain fog when she needs to understand what her doctor is saying—or even to figure out the plot of a movie she’s watching at home.
“Lately I appreciate the process of getting ready to watch movies more than actually watching. It’s not because the program is boring or I fall asleep. It’s that I just don’t understand the storyline. And I’m too embarrassed to say anything,” she wrote in one recent post.
“I’m even baffled by normal conversations. When someone tells a joke, I wait for the punchline. And I always laugh too late. I know brain fog is one of the main symptoms of multiple sclerosis. I’ve been dealing with it for years. But I hate when I get confused.”
After returning home from her 2019 hospitalization, she apologized to her readers for neglecting the blog and having difficulty keeping up with texts and calls. She delved into the hard truth behind why: she has had to focus on her health and ability to function.
It might be easy day-to-day, but Nicole recognizes that like anyone, she’s just doing the best she can. “But somehow I didn’t see myself as worthless. I devoted my energy to events I could still control. Emphasizing what I had power over. The parts of me the disease couldn’t touch. My body may be deceiving me, but I still have a beautiful mind. I still have trust. I still have love.
“I employ these attributes in my daily life. Directing my thoughts to positive moments. Reminding myself that all my daily efforts aren’t filled with missteps. I want to tell you, thank you for your patience. I’m back, for now. I’m back because when I speak, when I tell my story, I feel better. And those who can relate feel better.”
—by Calli Barker Schmidt