Month: January 2018

Remembering My First Official Day With MS

40 Comments / Welcome to MS. / January 10, 2021


This morning as I wrote the date in my diary: 01.11… I stopped short before writing the year. Not because it’s still a new year and I refuse to accept it, but because January 11th is one of those dates that strikes a chord deep inside my mind. It makes me stop and say, “Oh yeah. January 11th.” This morning, still sleepy and under-caffeinated, when the date finally clicked for me, images from years ago started filling my head in vivid detail, like I was reliving the events of yesterday and not of 2001. 

 
I remember waking up in the canopy bed that was too big for my small student apartment, with the fake fireplace and the moss-green walls. The weather, like it is today, was grey and drizzly, kinda mild for the dead of winter. I remember my dad picking me up in his mini-van to take me and my mom to my neurology appointment. I remember the long hallways of the hospital, the crowded waiting room full of weary faces, and finally, the doctor pointing out 6 white spots on my MRI that confirmed I had multiple sclerosis. I remember the calm with which I’d received the news, and later, the hostility I’d shown the clinic nurses. I remember trying to crack jokes with my humourless neurologist, because even back then I had a sense that part of the burden of this disease would be to reassure others that it’s okay, that I’m okay. 
 
This was not pink in real life. IRL it was scary AF.
I remember the relief my dad felt when he heard ‘MS’ and not ‘brain tumour’, and the discomfort he must have felt when, as I was flipping through pamphlets, scrolling through possible symptoms, I shreiked, “Sexual dysfunction? What the fuck does that mean?”. I remember wondering what the people who’d promised me “Pretty girls don’t get diseases” and “The good Lord would never let this happen to someone like you”, were going to say now. I remember sitting on my bed, next to my mom, making her call my friends and deliver the news. It wasn’t that I couldn’t bear to say the words “I have MS”, it was that I couldn’t bear to hear their reactions.
 
January 11th, 2001 frames the BC and AD of my life. 
The Before and After. 
 
It was a day that moved in slow-motion, where random details worked hard to secure a place in my long-term memory. I can recall its minutiae with technicolour clarity; except, it wasn’t a colourful day, everything was in black and white. I remember going to the movies that night, just to do something normal, to convince myself that life was going to stay the same. I remember that the plot of the film (Billy Elliot), was not distracting enough to pull me out of my own reality. I even remember looking around the theatre, and being struck with that strange feeling that comes when the world stops for you, but keeps moving for everyone else. Like, why wasn’t everyone leaving the theatre looking as slack-jawed and stunned as I felt? I heard laughter and wondered how come these people didn’t know that EVERYTHING IS DIFFERENT NOW?
 
Psychologists would call my unplanned trip down memory lane an anniversary reaction, which sounds vaguely fun, but isn’t, really. The good news is, it’s a predictable and totally normal response to unresolved trauma, and while it can seriously mess with some, my own experience was nothing more than melancholy that made me wonder if anything good could come from peering into the past, and re-experiencing those early emotions. 
 
Thinking about that day and what it has led to, made me appreciate that being diagnosed with MS is a big fucking deal, and that from time to time, I deserve to pay tribute to that. To say, holy eff, that happened to me. 
 
Someone should give me a present. 
 
But it’s hard to congratulate myself for having gone through something when I haven’t yet made it to the other side. If anniversary reactions are about your brain forcing you to explore unresolved trauma, it would seem that the cure would be to resolve the damn trauma. 
17 years after my diagnosis, I can’t say I’ve done that. The feelings I remember from that day, when I was barely an adult, still relying on my parents, are so familiar, I feel like I’ve failed at the acceptance part of having a disease. I’m a grown-ass woman. Why aren’t I better at this yet?
 
But 17 years of perspective has taught me that MS is a moving target and it’s impossible to get through the grief that hasn’t happened yet. That’s not even grief yet, it’s anxiety and it’s useless, and yes, I really need to learn to properly meditate. And maybe I don’t deserve props for being totally chill about my progression, but I realize there are some props I do deserve. Because, actually I’ve done a really good job of accepting all kinds of shit. Par exemple, my vision sucks, I don’t drive. Over it. The whole catheter thing? In my sleep. Even the use of mobility aids. It’s tough, but so am I. And that’s the real lesson of the past 17 years. I’m still gonna freak out from time to time, but at the end of the day, I’m pretty resilient. I’m still here.
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5 Things I Did Right Last Year & What I Want Out Of 2018

13 Comments / Life hacks / October 29, 2019
2017 went out with more of a whimper than a bang. I spent a solid chunk of December dealing with disease, mired in fear, and feeling pissed at myself for crying at Christmas. Facing another new year with multiple sclerosis while taking stock of 2017, it’s tempting to tick off a list of things lost, things I’ll never do again. Which is depressing AF. You don’t want to read that self-pitying barf, and I must force myself to agree, it’s way more appealing to look at the blank slate of possibilities for 2018, than to obsess over the ways in which 2017 went off the rails. 

But, making resolutions can feel like we’re announcing our shortcomings. Like we’re publicly identifying the (usually trivial) ways in which we feel we suck. And maybe that’s why so many people hate them. Nobody wants to feel like they’re failing at life. Gross. Building a brag-sheet of last year’s wins can help us recognize just what we got right, and give us the confidence to sign-up for what’s to come. Taking stock of 2017 helps me realize that change is possible. Heck, anything is possible. And isn’t that what the new year is all about?
There is no suck. Only degrees of awesome.

How I Slayed in 2017

Travel
Travel is hard when you have a dumb disease. With its stupid cobblestones and complete lack of curb cuts, Rome kicked my ass last year, as the least accessible place I’ve ever been. I left Italy feeling smug and secretly satisfied at the fall of the Roman Empire. They deserved it. Despite this, I was truly glad I came and saw and conquered. Instead of feeling defeated, I felt inspired to travel more, and to places even further outside my comfort zone. Because as I’ve said before, if not now, never. 

And I don’t believe in never. 
Stopped Singing
For most of my life, singing was a major part of my identity. For a long time, I believed every lesson, every hour spent practicing, every moment of performance, was saving my life. And it was. Until it wasn’t. It’s too long and boring to get into here, but MS fucked it up for me, and as my body weakened I began to feel diminished by the very thing that once made me feel invigorated. After trying for too long to keep it in my life in any capacity, I was finally able to accept that singing was no longer bringing me joy. I walked away, and somehow, felt relieved. 

Memorized All the Words to Despacito 
Okay, I didn’t totally stop singing. I mean, I’ll never stop Beliebing. 

Gave up gluten, sugar, and dairy
Relax, guys. It’s not like I gave up bacon. This lifestyle sounds so crazy hard but I swear to you it hasn’t been. I think it’s partly because I’m good at making healthy food taste like not garbage, and partly because my tummy and neurogenic bowel feel legit better without cheese. Mostly though, it’s because it’s a way to feel I have some control. When I go to sleep at night thinking there’s nothing that can be done for my progressive MS, I quietly tell myself that maybe this diet will help. That tastes better to me than any croissant ever could. And that’s saying a lot. 

Became a glamorous, rich lady
When I was a teenager, I interned at an opera company where my fancy but terrifying employer would get her hair ‘set’ every week. My blue-blooded, bougie-boss was so sniffy and serious, and guys, did I mention terrifying? Like Anna Wintour, but taller and Italian. I definitely wanted to be her when I grew up. Then, last summer, MS finally gave me the justification to be a little more like, uhm, let’s call her Mary. 

Because, showering is hard. 

As MS worsens, the thought of holding my arms up long enough to dry my hair makes me long for the days of wearing wigs and obscene amounts of cheap perfume. So in July, I splurged on a package of blow-dry’s and now I can never go back. Can I afford this? Maybe not, but I’d sooner give up groceries than go back to washing my own damn hair like a nobody.


Clearly I nailed 2017. I’m high-five’ing myself for what were obviously some kick-ass self-care habits I’ll be bringing with me into the new year. But self-improvement never stops. It’s what makes you better than other people. So here are my goals for the upcoming year:

What I Want In 2k18

Exercise
Yup. The old New Year’s cliché. But hear me out: there’s so much compelling research about the effects of exercise on MS that I’m convinced it’s time to step up my game. I’ve always exercised and I work with a great physiotherapist (#megan). But there’s no reason I can’t be at the gym every freaking day. Even if it’s just 5 minutes. Because 5 minutes turns into 6, and 6 becomes 7, and 7 becomes slower disease progression than if I’d just sat on the couch eating raisins and watching The Crown. I know what you’re thinking: ‘This sounds like Sophie’s Choice’. But here’s the thing. The gym is in my building. Which means, I have time for weight training and binge-watching. (Wait. Were you thinking ‘raisins are disgusting’? Then screw you. Raisins are a delicious snack.)

Minimize Time Sucks
It’s hard not to get sucked down an internet hole when you write a blog; when you’re on your laptop at all hours so you tell yourself you’re “working”. But let’s face it, I’m mostly sucked into online shopping and celebrity gossip. OMG PRINCE HARRY AND MEGHAN MARKLE ARE GETTING MARRIED, GUYS. Like, who am I to ignore living history? Furthermore, what kind of feminist would I be if I didn’t know why we’re all pissed at you-know-who, and you-know-who else, and you-know-who else, and so on forever. Strike this. This is no time to cut back on the internet. I’ll just have to cut something else, like laundry or brushing my teeth.  

Peace
Obviously world peace and blah, blah, but what I’m really talking about is inner peace, and this might be my biggest commitment to change this year. MS isn’t going anywhere, and I need to get my shit together, figure out how to maintain my sanity when symptoms are at their worst and my brain feels like it’s gonna explode. I think this means learning to meditate and finding some counselling that is more reputable than fortune cookies and the occasional episode of Dr. Phil. I’m going to detox my mind and I’m going to do it with help. 

Happy New Year Trippers. Cheers to possibilities, blank slates and optimism. And if you feel like sharing your own ’17 brag-sheet and 2k18 goals, I’d love to hear them. 

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