Episode 23 — Beyond the Physical: The Other Harsh Realities of MS

Listen to Episode 23 of Myelin & Melanin!

Join us again to hear more musings about Daana’s ongoing rehab journey, and to listen as we reflect on some of  the harsh realities of MS that extend beyond its physical manifestations.

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

Rehab Reflections

As some of you know, I was admitted to the hospital 10/30 for a pretty scary MS exacerbation. An experience that I had while in the (first) hospital started me on a journey of reflection about the power of language.

As anyone who has been in the hospital knows, daily visits from occupational and physical therapy are to be expected. That said, the therapists are typically generalists, in that (as it relates to me) they do not specialize in MS. Some know more than others, but I’m always curious about whether or not they’ve worked with people who have MS before. And I ask. During one of my PT visits (again, this was the first hospital — this will be significant later), I casually asked the therapist if he’d worked with MS patients before. His response kind of…shook me. Not because what he said was shocking to me; rather, I was shocked that he lacked enough sensitivity to allow him to respond this way. So the therapist says to me: “Oh yes, I’ve worked with MS patients. It’s a chronic (insert an expression of pity) disease. In fact, I just worked with a patient who couldn’t even move — she couldn’t even feed herself. It’s a terrible disease.”

Okay, several things. 1. How dare you? You don’t know how long I’ve had MS; how do you expect me to react to that morbid characterization?; 2. Further, I asked you a yes or no question; 3. Do you really expect me to be motivated to even do PT after your nightmarish MS description?

Case in point. Language matters.

After about a week in he hospital, I was transferred to the (acute) rehab unit of another hospital. I feel very lucky to be in a place where I am given 3-4 hours of PT and OT a day from a professional and dedicated staff who specialize in rehab, versus a subacute rehabilitation facility (nursing home) with PT staff that often has relatively high turn over — and let’s face it, is an environment not conducive to a 38-year old’s  mental and emotional well-being.

Having never been in rehab before, this has been an enlightening (both good and bad) experience.

Allow me to share some of my reflections.

So, I am wearing a Depends in here. It’s both humbling and humiliating. Typically, the staff refers to the Depends as a brief. On one particular day, however, a PCA referred to it as a diaper. More specifically, she informed me that she needed to change my diaper. I’m fairly certain that I do not need to explain how incredibly inappropriate, insulting and disrespectful that was. I directed my concerns to the social worker who directed it to the appropriate supervisor. That said, though, this should never have happened. I am a grown woman — I deserve dignity and respect. Wearing Depends is humiliating enough. Language matters. I encourage folks to take a look at our Emotional Intelligence Tips & listen to Episode 22.

Those cryptic codes…

Another thing. Every week, your team (OT, PT, nurses, social workers, etc.) meets to discuss your progress. They discuss cryptic codes that are meant to essentially summarize you and your abilities, and come up with goals for you to work on to get you discharged.

The problem is that the goals aren’t always discussed with the patient (well, mine weren’t/aren’t always), and are often  not reflective of an attainable reality. For example — how can I “improve my ability to move in bed” when any assistance I get is to assist in things (moving my stiff legs, sitting up when my back is as stiff as a board) I can’t do because of my MS. It’s kind of a slap in the face. At the very least, it’s frustrating.

Plus, it feels a bit weird to know that a group of people are having a whole closed door meeting about you where you have no opportunity to provide feedback, input or insight to frame the goals designed to help YOU go home.

One more thing. This is not a criticism. These are my reflections. In occupational and physical therapy, you are asked to do things that in your day to day life, you don’t normally do — at least consciously (raising arms above your head and maintaining the position, flexing your ankles up and down — things like that). I totally get why, and have no issue with that. OT is meant to assess and strengthen your functional mobility. It’s therapy.That said, it’s a sad, harsh reminder of the abilities that MS has stolen from me. It’s a lot to process.

We are kept to a pretty rigorous schedule. At around 3 or so, we’re on our own — free to do what we want. For me, that’s meant ruminating on all of my lost functionality. It’s depressing.

I digress.

I apologize that my thoughts and musings are scattered. I’m still processing.

 

Episode 22 — Emotional Intelligence: Dignity, Sensitivity & The Power of Language

Listen to Episode 22 of Myelin and Melanin!

Tune in to hear about Daana’s rehab experience, as well as musings about emotional intelligence and the power of language.

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

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: www.greenhousewellness.com, 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!

Airport Anxiety

Check out the following article (below) that was published by msconnection.org. 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: http://journals.sagepub.com/doi/10.1177/1049732318796831

A great article that sums up the research is below.

Love & Light.