Recently I ripped off the popular podcast Ten Things I’m Afraid Of by posting my own morbid list on my Insta stories, but with the added qualifier ‘with MS’. Because everyone already knows centipedes and talking on the phone are scarier than death.
If you have MS, a healthy fear of prescription costs, PML, and progression are probably already on your radar. Rest assured this light-hearted list is not meant to jack up your anxiety about everything that can go wrong when you have this disease. This is about airing my own brand of neurosis that maybe some of you can relate to. If you don’t have MS, consider this tally a touch of insight into the day-to-day drama of coping with a chronic illness.
I drop stuff all the effing time. Ask The Banker or the dog how many times a day I drop my cane on the hardwood (it’s 87) and they will slowly shake their heads in silent rage. Sometimes I drop something, pick it up, then drop it again. If I’m in a good mood, I assume the universe is providing me with free physio, then give myself permission to skip the gym. That’s a level one drop.
A level two drop is a bit more consequential. Like the time I dropped my cute cigar-box purse at a production of Mary Poppins spilling all my tamps and caths into the aisle. Despite my protests, the stranger-man next to me insisted on picking up my swag until he realized what he was touching. That’s fine, he should grow up.
Because the very, very worst, level 3 shit to drop is something that breaks. Especially if that something is full of liquid, like smoothie or vase-water, and I’m all alone and have to clean it up before someone eats broken glass and the floor turns blueberry. My lack of balance and shoddy hip-flexors make this a Survivor-level challenge where the only reward is that the dog’s not bleeding and I no longer have breakfast.
My fear of rain as someone with MS has everything to do with not wanting to wreck my blow-out, because blow-drying my own hair is a fucking nightmare, and it’s impossible to wrangle an umbrella and a rollator at the same time. When I posted this fear on Insta, someone was like, why don’t you just get a rain hat? I don’t know, Becky. Why don’t I just leave the house in a shower cap?
One day, about a month ago, I woke up without pain. As I found myself assessing this unfamiliar phenomenon, I also realized I’d somehow slept through the night. I felt like singing, or at the very least not scowling. And then I was like, hold up. What is this feeling and who am I?
What if I have this whole other (way better) personality without pain and insomnia? I’m a skosh afraid that having MS facilitates a bitchier, harder-to-be-around version of moi than the ray of sunshine I might have been in an alternate reality. Damn, Becky. I’m sorry for my tone earlier. Thank you for the suggestion.
Update: I just googled rain hats, and Becky can go to hell.
I’m cold right now, but I’m also afraid of being cold in the future. MS means my temperature regulation is broken, but my anxiety is working just fine. I can work myself up into a state in July thinking about how much January is going to suck in this cold Canadian tundra. Recently, my order of Little Hotties got lost on Amazon and I had to go without this life-saving, foot-warming product for five excruciating days. You don’t even know. Now I feel like I have to stockpile them so that this never happens again. I’m afraid my fear of freezing will turn me into an MS Doomsday Prepper.
I have too many purses, so I try to make sure there are a few disposable caths in every bag (too much catheter talk? welcome to MS), but occasionally I fuck this up (not to mention I recently discovered that caths for real expire, which does not help my doomsday plan).
One time, after I’d left to do my Lemtrada labs and get a hair appointment, I realized I was sans Cathy when it came time to give my urine sample. This was especially troubling because I’d been saving my pee for the test, and I needed to go. No worries, I thought. I bet the lab has some. They did not. Fortunately, we were next door to a pharmacy. But when I asked, they were like “ew, no”. Okay, they didn’t say ‘ew’ but they might as well have.
That forgotten pee-mate almost caused me to pee my pants (ironic, I know), forced me to return to the lab with a urine sample, made me miss my hair appointment, and cost me an extra $14.67 in round-trip Ubers. In addition to the price of the tiny plastic tube (you don’t wanna know), this particular pee cost more money than the time I was in France and didn’t have any coins for the pay toilet AT A BAR, which meant I had to buy a drink just so I could pee, creating a vicious cycle. Bien joué, Frenchie, bien joué.
If you need a refresher on what getting sick can do to MS, please click here. My fear of flu makes me terrified of hospitals, holiday parties, and most of all, children.
“What’s that scent you’re wearing?”
“Oh, do you like it?”
“That’s because it’s Purell and Clorox.”
There are a million things to do before a big trip, and they all come to a head at the last minute. That sigh of relief you breathe once you’re through security, checked into your flight, and ready to check out of your life is what a cocktail at the airport bar tastes like. Oh, my flight’s delayed? That’s cool. I have time for one more vodka soda (soda because it’s important to hydrate). Bonus points if you’re flying Air France where I defy anyone to not drink the wine in those adorable mini bottles.
So, it’s pretty freaking rude, airlines, to ply us like this and then tie us to our chairs and turn on the seatbelt sign. You know you’re just messing with us anyway. Like, I’m not that good at walking, but even I feel like I can handle it basically every time.
I don’t have any confirmed cognitive decline (update: I do now!); the lesion load on my brain is light in comparison to that of my spinal cord, where all my damage likes to party. I will cop to having difficulty focusing on any task when there’s competing noise. If you want to talk to me and the radio’s on we’re gonna have a problem.
My real cognitive problem is that I don’t recognize faces. Like, unless we’re related, or we’ve made out (and even then), I’m not gonna recognize you. Dear everyone in my building, I may have had five separate convos with you in the elevator this month, and if I see you at Ezra’s Pound I won’t know who you are.
My ability to rock a blank stare whenever someone thinks I should know them has earned me the reputation of a witch with a b. Luckily, that’s kind of who I am anyway.
MS can take a lot. What’s more maddening to me is what’s taken that doesn’t have to be. As my mobility needs change, I fear my world getting smaller as fewer spaces are available to me. I fear being disabled by my environment as much as by my body. Ok, this one’s a true bummer. Let’s move on.
I mostly subscribe to the philosophy that fear is a waste of my imagination; but sometimes I let my flights of fancy run the show, and that’s when I visit a future day-mare where I don’t get to make all my own choices. Seems reasonable, right? Here’s where I lose you.
The choices I’m prematurely wigging out over are food choices. Like, I did not spend the best years of my life cultivating a palate that appreciates stinky cheese and truffle salt only to spend my senior years in a care facility eating boxed potatoes and off-brand chips. I am way less worried about condescending nurses who speak to the elderly in baby-talk than I am about the possibility of being served baby-food. Did you know that most of these places don’t even have a bar???
Roosevelt famously blah blah’d about fear being the real enemy, and I will co-sign that fear is the worst symptom of MS. That said, I feel like Roosevelt didn’t totally fact-check his whole thesis, because needing to pee without access to a bathroom is hardly unjustified terror.
Do these fears resonate? Comment on what you’re afraid of with MS, and check out the original podcast.