February 27, 2019
I sat in a series of doctors' offices complaining of fatigue for several years before my diagnosis of Multiple Sclerosis.
Feeling like a terrible mother, many days I couldn't muster the energy needed to get my kids in the bathtub, much less get off the couch and be the mother I always imagined I'd be. You know the one. The one full of energy and sunny smiles, with the clean house and nutritious dinners, made-from-scratch every night.
In the exam rooms, I was given a sympathetic smile, a pat on the shoulder, and an offer of a B-12 shot and an anti-depressant to boost my energy levels.
"You're a working mom! Of twins! Of course, you're tired," the doctors said.
On Tuesday morning, Feb. 26th, actress Selma Blair appeared on "Good Morning America," and described crying tears of "relief" after her diagnosis of MS, which came after years of battling fatigue and other seemingly unrelated symptoms like dropping things and falling.
As Blair recounted the times she felt ashamed of her fatigue and was told by doctors that being tired was a normal part of motherhood, I saw my own story on the screen for the first time.
"I was ashamed and I was doing the best I could and I was a great mother, but it was killing me," Blair said in the interview with Robin Roberts. "And so when I got the diagnosis I cried with some relief. Like, 'Oh, good, I'll be able to do something.'"
I cried those same tears when shortly after my diagnosis my occupational therapist asked me how my fatigue levels were that day. I responded with, "Well, aren't all moms tired?" She gently responded, "Yes, but you need to understand, you are more tired."
For the first time, I also saw media coverage of the disease I've become so well acquainted with, that so many know so little about. MS is known as the snowflake disease because everyone presents differently. Some aspects, though, are very much the same.
Kourtney Robinson Photography The writer, Elsbeth W. Russell, with her twin sons.
Kourtney Robinson Photography The writer, Elsbeth W. Russell, with her family.
A chronic, often unpredictable disease, MS attacks the central nervous system and can cause problems with vision, balance and muscle control.
Like Blair, an MS exacerbation left me with balance issues. For a while, I used a wheelchair and a cane. My left hand still constantly tingles the way they do when your leg falls asleep after sitting cross-legged for too long. Tight with spasticity my left leg is often uncomfortable and sometimes twitchy.
When I first saw the October Instagram post announcing Blair's MS diagnosis, I felt a strange kinship with her.
I understood exactly what she was describing when she explained her symptoms. My diagnosis took place in 2017. Also, like Blair, I became a mom in 2011.
Frequently open about her MS on Instagram, Blair is now viewed in much of the MS community as a beloved sister. Her profiles on "Good Morning America," "Nightline" and in "Vanity Fair" have been shared and dissected by people who, like me, finally see themselves reflected by Hollywood.
Explaining an incurable, degenerative neurological disease to a seven-year-old isn't easy but both Blair and I have done it.
"So I did have to tell him after the MRI. I said, 'I have something called Multiple Sclerosis,'" Blair said. "And he almost cried and said, 'Will it kill you?' "And I said, 'No. I mean, we never know what kills us, Arthur. But this is not the doctor telling me I'm dying.' And he was like, 'Oh, OK,' and that was it."
My boys had very similar reactions, and while I've often mourned the fact that they likely won't remember the me that was their mom before MS, I also celebrate the empathy and understanding they're developing as the children of a mother with a chronic illness.
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I hope they're learning to befriend the person whose voice sounds a little bit different, or who walks a bit strangely. To be patient when the person on the sidewalk in front of them moves a little too slowly or drops what they're carrying. To give themselves a break when their bodies need it, and to take care of their health.
"It's fine to feel really crappy and say, 'I gotta,'" Blair said. "And my son gets it and now I've learned not to feel guilty."
That's a lesson I've learned too, though I often wish MS hadn't been my teacher.