MS Awareness Month Read: Fall-osophy
Fall-osophy has been my Go Train read of late.
I’ve been reading Ardra Shephard’s witty, self-deprecating, and above-all-else honest blog, Tripping On Air, since before I received my MS diagnosis. My bout of Optic Neuritis sent me searching for everything and anything that I could learn about MS. I quickly became a “Tripper” – what Ardra calls her readers. Ardra’s blog has a tone that immediately puts me right at ease. I’m not sure if it is her candour or her liberal use of F bombs, but her style speaks to me. Reading her blog is like having a no-filter chat with a close girlfriend over a great glass of wine, even though I don’t know Ardra and she’s often writing on heavy topics. When she launched a podcast by the same name, I was one of her first listeners. So, when I learned that Ardra wrote a book, I pre-ordered it right away.
Fall-osophy doesn’t disappoint. Her no-holds-barred writing style that I have become accustomed to in her blog carries through to this candid account of the challenges of living with MS and the resilience demanded of her as each new symptom makes its unwelcomed appearance.
Ardra was diagnosed with MS in 2001 at the age of 23. She writes: “MS is the first immutable thing I get to know about my grown-up life” (page 9). I have the utmost empathy for those who have to hear the life-altering words “you have Multiple Sclerosis” at such a young age. I’m grateful that I didn’t face these words until age 36. I had already experienced a lot in life when MS reared its ugly head. I had two university degrees. I had a career as a lawyer. I was married. I was a mom. I owned a house. I had been fortunate enough to get lots of opportunities to travel. I knew my adult self before I was confronted with the need to get to know my adult self with MS. Having to navigate early adulthood while also navigating life with chronic illness takes a lot of strength and perseverance.
Discussing her first attendance at an MS Walk event, Ardra describes: “It was scary to see people more disabled than me” (page 193). I think that everyone living with MS can relate to this sentiment. On the one hand, I want to be realistic about the challenges that likely lie ahead when living with MS, but on the other hand seeing someone further along the path rattles me. When I see someone with more advanced disabilities from MS, I experience of complicated mix of compassion and panic. It’s like staring into a crystal ball of what the future may hold and seeing things that I don’t feel ready for, and, honestly, may never be prepared to handle. Reading Fall-osophy is kind of the same. Despite the fact that we are fairly close in age, Ardra has two decades of experience living with MS on me. She deals with many MS symptoms that I hope that I will never experience, but that, realistically, need to be on my radar as possibilities (maybe even likelihoods). However, just as seeing her more advanced disability scares me, it also inspires me. Ardra has met every challenge that MS has thrown at her and she has managed to not just persevere but to live a pretty great life. She didn’t just figure out how to adapt to life with mobility aids, she made mobility aids fashionable.
Fall-osophy speaks to many of the persistent fears that I carry living with MS.
In Chapter 14: Home Is Where the Elevator Is, and Chapter 46: Mourning Routine, Ardra speaks of the challenges that MS poses when buying property. In 2019, my husband and I bought a 4-bedroom house with a big backyard in the middle of suburbia. I wouldn’t have chosen a house with so many stairs had I known that I would be diagnosed with MS, but MS wouldn’t make itself known for another 2 years. There are stairs to enter the house. The bedrooms are all on the top floor. The laundry is in the basement. I am currently able to climb up and down stairs without any issue (knock on wood), but I worry that when my next MS attack inevitably arrives that it will bring into sharp relief the fact that my home is inaccessible to the extreme. Ardra writes about choosing a condo without stairs: “I know it’s an abundance of caution, but I never want to get sucker-punched by MS again” (page 55). I am acutely aware that a future MS attack may deliver a brutal reality check about my not-disability-friendly home.
In Chapter 39: Worst Day Ever So Far, Ardra discusses how getting sick hits differently when you have MS. “Yeah, I might have a cold, I might even have the flu, but worse than both of those things is the possibility that I’m having a pseudo-relapse” (page 173). I wrote a blog post on this topic: Avoiding the MS-ery of Cold and Flu Season. Earlier in Fall-osophy, Ardra describes, “the deals with the devil that patients strike when they decide the risks of untreated MS are scarier than the risk of developing… opportunistic infections” (page 143). This is an apt description. The most highly effective Disease Modifying Therapies (DMTs) suppress or modulate the patient’s immune system, leaving them more susceptible to every bacteria, virus, or fungus that comes along.
In Chapter 45: At Least It’s Not Cancer and Chapter 50: Amazing Grace, Ardra tackles the complex and emotionally charged subject of Medical Assistance in Dying (MAID). I would be lying if I said that I hadn’t consulted Google on the subject of whether MAID would invalidate life insurance coverage. Everyone has opinions on MAID, but when you live with chronic illness those opinions are very much coloured by the likelihood of some day having to make that decision. As Ardra says, “MS gets harder. That’s MS’s MO” (page 233).
Beyond the common fears that come with living with MS, Ardra hit on a lot of themes that I think likely feel familiar to anyone living with MS.
Where there’s a incurable disease, there’s a snake oil salesman ready to defraud patients. In Chapter 21: Lie-beration Therapy, Ardra chronicled her experience with seeking treatment of Chronic Cerebrospinal Venous Insufficiency (CCSVI). This treatment became popular around 2009-2013, before being thoroughly debunked.
“What’s wrong with you? is not an acceptable icebreaker” (page 149). While my MS is still an invisible disability, I nonetheless have some experience with the rudeness of utter strangers asking for personal medical information. In addition to MS, I also have Congenital Adrenal Hyperplasia (CAH), a rare genetic disease affecting the adrenal glands. I am supposed to wear a Medic Alert bracelet for this condition. I did wear a Medic Alert bracelet during my childhood. I stopped wearing a Medic Alert bracelet in large part because of a similar question to the one Ardra complains about. I would be asked: “what are you allergic to?” with a gesture to my bracelet. Sometimes I would lie and give them a made up answer just to get them to leave me alone (“penicillin” - my code word for “please fuck off”). Other times I would tell them that a Medic Alert bracelet doesn’t mean that a person has an allergy, but this usually led to more inappropriate questions. You don’t know me. You aren’t likely to ever see me again. You aren’t responsible for my care. Why on earth do you need to know about my rare adrenal disease? Now, I’m sure that this question which plagued my childhood and led to my admittedly less-than-responsible decision to stop wearing a Medic Alert bracelet didn’t come from a place of malice. But it always rubbed me the wrong way that complete strangers felt entitled to my private medical information (perhaps ironic from someone who now writes a blog – or as Ardra puts it “oversharing on the internet” – about living with MS). I can make my CAH disappear to the average viewer by removing my Medic Alert bracelet, but Ardra and others whose MS affects their mobility can’t dodge questions about their mobility aids quite so easily.
“I still don’t know how to tell if I’m having an attack or if this is what I should expect from MS” (page 39). Truer words have never been written. I keep an MS Symptoms log in my Notes app on my iPhone so that I can discuss possible MS symptoms with my neurologist at my annual appointment. I’ve had MS for 4 years now and I still don’t really know what’s attributable to MS and what’s just attributable to getting older. Some things are obvious, e.g., the chronic tingling and weakness in my left arm and hand, the vision loss in my left eye from Optic Neuritis. But others are harder to pin down, e.g., fatigue, muscle cramping.
I laughed out loud when I read Ardra’s description of exercising at Toronto’s Baldwin Steps, “it’s nice to have my fitness journey acknowledged by these self-loathing psychos” (page 108). Back when I lived at Yonge and St. Clair, the Baldwin Steps were part of one of my usual running routes. I may well have been one of those “self-loathing psychos” referenced here.
I’m stealing Ardra’s description: “My feet are medically cold” (page 198). Me too, girl, me too.
One of Ardra’s greatest achievements is pushing the boundaries of fashion for disabled people. Ardra found herself yearning for a style icon with a disability, so she became one. Later she became the host of Fashion Dis, a television series dedicated to adaptive design and inclusive beauty standards. Her advocacy isn’t just about clothes. It’s about visibility, representation, and the right to be seen as vibrant, stylish, and worthy of celebration.
Fall-osophy would be an excellent read for anyone, but if MS is part of your life in any way, you’ll see yourself in its pages. Consider this your must-read for MS Awareness Month. And yes, I do enjoy the delicious irony of recommending a book for MS Awareness Month with a chapter dedicated to the author’s general discomfort for awareness campaigns.
You can find Ardra Shephard’s Fall-osophy: My Trip through Life with MS here: https://www.indigo.ca/en-ca/fallosophy-my-trip-through-life-with-ms/9781771624305.html
Meeting the author back at the #soTHISisMS event in October 2023.
