My MS and Me
I’m not sure where or how I should start this essay. As I sit in bed with my laptop resting on the special cushion I use for it on my legs, I’m filled with a multitude of emotions and physical sensations.
Emotionally, I’m nervous about how vulnerable I want to be sharing my experiences as a chronically ill disabled Black woman living with Relapse-remitting Multiple Sclerosis (RRMS, MS). To me it’s weird that I even feel this way because I regularly talk about living with MS, being dyslexic and other health issues and as a critic and journalist on my Twitter account. I’ve even written a previous essay about the lack of accessibility for disabled critics, here for the Disability Visibility Project (DVP), but I want this essay to be different to what I’ve said before. I think I need it to be.
At the moment the physical sensations I’m feeling are a somewhat hard to describe mix of hot and cold, along the right side of my body. The best way to explain it would be to compare it to what it feels like when rubbing alcohol is applied to feverish skin: only I’m feeling it under my skin, along my muscles and nerves – including those around my right eye and even in my ear canal and mouth. Which is new. I’ve never felt these particular symptoms before.
That’s the thing about MS. It’s unpredictable. The symptoms are constantly changing.
As more lesions develop, so do my symptoms. During the remission stage, things are fairly constant, though not necessarily ok. The chronic fatigue is *normal – but daily life has become more exhausting since my two COVID-19 infections in 2020 and 2021 (FUN TIMES…NOT), persistent numbness and tingling in my hands and legs, and cog-fog caused by Cognitive Impairment.
Everyday I wake up I’m never sure what this condition has in store for my body. I never know if *today will be the day the tingling in my arms and legs will turn into complete loss of feeling, as has happened before. Will the muscle cramps be a signal that my legs will give out, or my hands will just stop working? This in particular has been a great worry for me as being able to type is what I do for my work as a film culture critic, journalist and busybody on Twitter.
Living with a condition that I think can be best described as mercurial – I like that word – has made it difficult to come to terms with what it means to be disabled for me. At present my MS presents as being an invisible disability, because I don’t have any obvious outwardly physical signs of being disabled.
From a distance people will say I look “fine”, and since my diagnosis in April of 2017, that term “invisible disability” has in a sense made me feel as though I myself am invisible. That my pain, confusion, anger, frustration and depression – which I was clinically diagnosed with by my neuropsychiatrist in late 2017 – are invisible, and therefore inconsequential. That in a way, my disability and condition aren’t real or valid. On multiple occasions, I’ve had people doubt my disability and doubt me.
In 2018 and 2019 I attended San Diego Comic Con as accredited press to provide coverage as a freelancer and on behalf of my podcast So Here’s What Happened! I was in nerd heaven, until I was told that the seat I was sitting in was reserved for diabled people. Despite the gold circular sticker that had been placed on my press badge, I was repeatedly spoken to and looked at by people around me in a way that conveyed they didn’t believe I belonged in the line and spaces meant for diasbled attendees. As a Black woman I’m all too familiar with the disquieting feeling of my stomach “dropping” and the hairs on the back of my neck and along my arms standing on end, when I know I’m being racially profiled. I know what the look of disapproval looks and feels like when it comes from others who believe I don’t belong in their space because I’m Black. And at Comic Con, I had the distinct displeasure of having to figure out if the reactions I received were because I was Black , Black and disabled, or Black but didn’t appear to be disabled. Talk about a mind fuck!
But then I stumble and trip as I’m walking. Due to a phenomenon known as Uthoff’s Phenomena or Heat Intolerance – I, like many other MS patients – have to be mindful of my body’s reaction to any slight change to internal and external temperature.The nerves and muscles in my hands seize up and I can’t move or feel them, and my own body reminds me that while others may not be able to see the hand tremors, disorientation, memory loss or the way I mix up my words and forget what I intend to say or even think, I am indeed disabled.
That last line…that’s what I’ve been struggling with the most for the past five months. Mild Cognitive Impairment (MCI) it’s called. One of the many unpredictable and most mentally unsettling of my MS symptoms, especially during a relapse: as I’ve been experiencing the last few months.
Annually, March (US) and May (Canada) are considered Multiple Sclerosis Awareness Month. During this time patients like me, and organisations like the MS society of Canada, and Multiple Sclerosis News Today bring special attention to the disease, and I thought that I should of course do what I could to do the same, which I did in writing a short article on learning to accept the limitations having MCI has imposed on my life but as life is filled with ironies, it was those very same limitations and newly developed ones that prevented me from writing this essay in March – when I pitched it to DVP founder Alice Wong – and in April. You see, from January until mid April, I went through a period of severe cognitive fog, the worst I’ve ever experienced to date.
Thinking was extremely difficult. To those who don’t have MCI, the thought (pun fully intended) of thinking isn’t a thought at all, because it’s just a part of being human. Thinking is supposed to be as natural as just being. Unless people actively engage in the act of thinking in the case of writing a test or an essay for example, we don’t think about thinking. But having Cognitive Impairment means just being able to think is difficult.
For months just forming sentences (in speech or thought) became so difficult I cried. The inability to recall both simple and monosyllabic words felt like learning a second language. In fact. Thoughts felt foreign to me. Just imagine that. Your own thoughts seem like they’re beyond your control and comprehension. Because of this, writing was and still is a challenge to put it mildly, and I was only able to complete a few of my committed pieces.
After my last cognitive test, I was told my “processing speed” has decreased; meaning that my ability to receive and understand auditory and visual information has slowed down and diminished somewhat. My short term memory has been significantly affected, as well as my long term memory, and the ability to recall words and apply them correctly in language. For instance, I know that I know ‘words’, but I don’t remember them, unless I see them in text, or hear someone say them. One of the cognitive tests I do is reading a list of categorised words, and then reciting them from memory…I’m having a good day if I can accurately remember 74% of them.
Within a matter of months reading, writing and speaking have become increasingly difficult. Having dyslexia – another cognitive disability which comes with its own unique set of challenges – on top of the CI means I’ve more hurdles to overcome just to function in my daily life. As someone with depression – usually triggered by SAD – the emotional toll all of this has taken on me is proving quite difficult to process and work through. It’s been doing a number on my confidence, as I question if I’m good and competent enough to be a writer and critic, not to mention how 2022 seems to be doing its utmost best to outdo the last few years by throwing more at us than we want to bear.
I do my best to stay positive, but truthfully, it’s hard as hell and exhausting. I think that’s partly why just even writing this essay was tough. Not only am I struggling with literally finding the words and language to convey what I want to in a way that makes a lick of sense – Googling words and using a thesaurus has been quite necessary, but emotionally I feel so overwhelmed and underwhelmed at the same time. My capacity to process is increasingly dwindling. It’s as though I’m caught in an undertow where my feet have been knocked from underneath me, and as soon as I make it back up, here comes another wave knocking me upside down once again.
It’s my hope that this essay isn’t seen as just venting, but a piece that helps others to have some insight into what it’s like to have a chronic neurologically and physically debilitating condition like MS, and maybe understand me, too. Or just a bit anyway, for to paraphrase one of my doctors, I’m a delicate flower. A conundrum wrapped in an enigma.
Carolyn Hinds is a Tomatometer-Approved freelance Film Critic, Journalist and Podcaster. Her published work can be found on ButWhyTho?, Observer, Atom Tickets and many other online publications, as well as in print as a contributing writer for the 2021 Canada Media Fund’s Annual Trends Report. She’s a member of the African American Film Critics Association (AAFCA), Time UP Critical, and obtained her Diploma in Paralegal Studies from Seneca College.
As a critic, I believe my personal experiences such as being a Barbadian immigrant living in Toronto, and outlook on life, gives readers and listeners a different perspective they can appreciate, and help them to see things in a new light. I’m the proud host of Beyond The Romance Drama Podcast – a podcast dedicated to discussing Korean and other Asian dramas, Carolyn Talks…, my own YouTube channel, and Co-host of So Here’s What Happened! Podcast (@SHWH_Pod). I also Co-host the weekly science fiction film and TV live tweet event #SaturdayNightSciFi. You can also find me regularly tweeting reactions for my current drama watches with #DramasWithCarrie, and my social media handle is @CarrieCnh12.
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