MS, Mobility and Erasure: A Problematic Narrative

Y’all. Maybe I’m extra emotional lately, but I read an article (inspiring, really) that once again triggered me. Her story isn’t what triggered me, because it is quite inspirational, but the folks (including myself) that are silenced when peddling this inspoporn (yes, I said) narrative, bothers me. A lot.

The brief article shares the story of a woman with MS who runs, with her husband, in a Marine Corps marathon. She says,“I think a lot of people don’t understand because people do associate MS with a wheelchair and it’s not true.” And she’s right. MS does not automatically mean that one will end up in a wheelchair. I, too, grow tired of the automatic assumption that MS equates wheelchair. It is uninformed. And couldn’t be further from the truth.

That said, what this narrative does too, perhaps unintentionally, is validate the assumption that people with MS who still have the ability to walk are  living their best lives (and in effect living better), and somehow free from the grips of this awful MonSter, and people who use wheelchairs have somehow succumbed to the beast and are…stuck (and the focus of your pity).

It is rare that we hear inspirational stories in mainstream media (I’m not talking about publications geared towards people with MS) about people with MS who use wheelchairs and are living their best lives. We live in a society that values an able body over anything.

MS is a complex and unpredictable disease. Its symptoms can not and should not be viewed hierarchically. They are all awful.

Does someone who is able to walk unassisted, but suffers from acute and long term memory loss and cognitive issues somehow live better than someone, who because of spasticity or paralysis, uses a wheelchair, but lives life free from cognitive issues? Of course not. They are different chapters in the same book. 

People who suffer with MS should not be (innocuously) shamed because the way their disease has manifested itself scares people or makes folks uncomfortable. Our lives are just as meaningful, and should be celebrated as such. I am talking to people with MS, too. Some of y’all are guilty of this.

Lets not rank people’s MS successes by how well they maintain their physical abilities. It dishonors the experience of all MS Warriors.

MS, Media & Hysteria

Selma Blair (Photo: Getty Images)

As many of you know, actress Selma Blair revealed, in a (poignant and brave) Instagram post, that she was recently diagnosed with Multiple Sclerosis. After 15 years of thinking she was suffering from a pinched nerve, she was finally diagnosed with MS in August.

Whenever a celebrity is diagnosed with MS, there’s a resurgence of interest in MS in the media. This, for many reasons, can be a bit triggering for those of us who suffer from MS. That’s another story for another blog post.

In any case, amid all of the MS hoopla, I came across an article in Women’s Health titled 15 Early MS Symptoms in Women that Shouldn’t Be Ignored. This is one of the most outrageous articles about MS that I’ve read in a long time. I guarantee that just about any woman, after reading this article, will second guess the myriad of general ass symptoms outlined in this article that she may be experiencing, and think that she has MS.

Being forgetful, clumsy, tired, feeling “weird sensations”, menstrual irregularity — all things that can mean just about anything — are not automatic indicators of MS. Further, the fluffy way that the author discusses and describes optic neuritis is laughable. The author writes, “If you previously had a good eye for color, don’t brush this off, Segil says. ‘It’s called optic neuritis and it happens because of a loss of insulation around the optic nerves in the brain; it’s one of the primary symptoms of multiple sclerosis,’ he explains.” Give me a damn break. Optic neuritis is way more than colors being off. Anyone who has ever experienced optic neuritis can attest to this.

This article is offensive.

Don’t get me wrong. I think it’s very important for people to be in tune with their bodies. And yes, I know that MS is one of the most elusive diseases to diagnose, but these fear tactics do not serve a useful purpose. If anything, they minimize the seriousness of these symptoms (fatigue, etc.) and the impact that they have on those who do suffer from MS.

At the end of the day, we should be grateful for any MS awareness I suppose. Let’s just be careful that the information that we are disseminating is accurate, avoids hysteria, and honors the very real experiences of those who live with this terrible disease.

My thoughts are with Selma Blair.

Episode 21 — THC and CBD and MS, Oh My: Marijuana as Medicine

Listen to Episode 21 of Myelin and Melanin!

JD, Wellness Consultant at Greenhouse Wellness

Cannabis, especially as it relates to its benefits for chronic health conditions like MS, has been a hot topic lately. It is one that is very personal to us. As medical (and even recreational) marijuana is being legalized more and more across the U.S. (and the world), we felt it was important to further explore this topic. Join us as we talk with JD, a Wellness Consultant at GreenhouseWellness in Maryland. He educates and enlightens us, while demystifying this fascinating topic. Check out Greenhouse Wellness on the web:, on Instagram @greenhousewellnessmd and Facebook @greenhousewellness — they are fantastic.

Check us out, stream and subscribe to the podcast on Apple Podcasts, Spotify. Google Play Music or SoundCloud. Also, follow us on Facebook, Twitter and Instagram @myelinmelanin to keep abreast of our latest goings on!

Episode 21 | THC and CBD and MS, Oh My: Marijuana as Medicine — feat. JD from Greenhouse Wellness

Cannabis, especially as it relates to its benefits for chronic health conditions like MS, has been a hot topic lately. It is one that is very personal to us. As medical (and even recreational) marijuana is being legalized more and more across the U.S.

Airport Anxiety

Check out the following article (below) that was published by It deals with some of the anxieties and insecurities that people MS feel when traveling (in airports, specifically).

Take some time to check it out. When you’re done, check out Episode 7 (from way back in March) of our podcast where we touch on some similar issues.

This excerpt, in particular, touched me:

“Why did this feel like such a big deal to me? Because my “disability” is now on show for all to see. Like being naked in public. It was the only thing that had ever made my invisible illness visible. It was scary. In some ways it was like being diagnosed all over again, but this time, people saw what they didn’t see before. They saw a visual representation of MS. My MS.”

Wow. Yes.

Love & Light.

D & D

The Mindful Body

Wow, this is a fascinating study. Both Dawn and I can relate so deeply. Stay tuned for this topic in Season 2.

“After a long enough period, these unusual symptoms become mainstream. They become familiar with the strangeness.”

Just…wow. Yes!

The name of the study is: The Mindful Body: A Phenomenology of the Body with Multiple Sclerosis. Check out the abstract here:

A great article that sums up the research is below.

Love & Light.

Episode 20 — Tricky Territory: Relationships and MS

Listen to Episode 20 of Myelin & Melanin!

Relationships are complicated enough by themselves. Add multiple sclerosis to the mix and the complexity is multiplied. When do you divulge that you have MS? How do you approach the topic? To tell or not to tell? Join us as we tackle these oftentimes tricky relationship questions.

Check us out, listen and subscribe to the podcast on Apple Podcasts or SoundCloud. Also, follow us on Facebook, Twitter and Instagram @myelinmelanin to keep abreast of our latest goings on!

Episode 19 — MS and the Case of a Stolen Life

Listen to Episode 19 of Myelin & Melanin!

MS is a thief. There’s no other (or softer) way to put it. It robs us, and what we’re left with is often a shell of what used to be. Join us as we grapple with this layered issue.

Check us out, listen and subscribe to the podcast on iTunes or SoundCloud. Also, follow us on Facebook, Twitter and Instagram @myelinmelanin to keep abreast of our latest goings on!

[ Episode 17 Recap ] Shift the Paradigm: Living Your Best Life Despite MS

Changing your way of thinking is a big adjustment for a lot of people. Of course, we go through life expecting our lives to look different as we age, but when it comes to those of us with MS that’s a hard pill to swallow.

In episode 17 we talked about how difficult it can be to accept the fact that yes, life has changed, & we HAVE to alter our lives a bit.  So what does that look like?  For those of us with MS, it means we paradigm shift.  This week we had the pleasure of having a brilliant neurologist, Dr. Aaron Boster, provide us with vital information about paradigm shifting, and what it looks like for Multiple Sclerosis patients.  Dr. Boster of Ohio Health MS Center in Columbus Ohio says that paradigm-shifting is, learning how to adapt despite the MS challenges that step in your way.  Take a look at his video on Youtube about this topic and ask yourself if there are areas in your life that can benefit from a shift.

Dr.B discusses the concept of “Paradigm Shifting” to thrive despite having Multiple Sclerosis. Multiple Sclerosis can result in loss of functions (for example balance). When this occurs it can be challenging to learn to adapt and eventually overcome, despite this new limitation. Learning a new DIFFERENT way to accomplish the old tasks using new ways can result in success. Paradigm shifting is important.”

During the podcast, both Daana & I mentioned the emotional toll it can take when you find yourself living a new normal.  Quite often this “normal” isn’t one that we are ready to accept into our lives.  That’s OK!  There is a process when planning and thinking about how life will look as you go through the phases MS.

Start with changing your narrative then allow the shifting to begin.  Be KIND and GENTLE with yourself, remember this is a “marathon and not a sprint.”

Happy shifting MS warriors!

Dawn & Daana