12.15.2016

10 Easy Ways To Survive The Holidays with MS

Growing up, Christmas in my family was a BFD. It still is. Like an insanely, big deal. My mom gets up at 5, anxious to tear into presents and eat pie. My dad only encourages her by throwing open the sash (pre-dawn, natch), to bellow “Merry Christmas”, causing all the dogs within a 1/2 mile radius to completely lose their shit. Compared to these two, Clark Griswold was a hack. I can hardly be blamed for the sugarplums that dance in my head. It’s in my DNA. But being able to fully participate in all the holidays have to offer when you've got a chronic illness like multiple sclerosis, is easier said than done.


Santa's little secret? It's mostly Irish cream.

Of course, what happens in December starts in November. And everything seems possible in November. I eagerly say yes to it all, seeing no problem in filling my calendar with concerts, parties, dinners and overall excess. But naive November, with its fall leaves and sense of can-do, is over. It’s mid-December now, which means colds, calories, and credit card debt. The half-decorated tree sits unwatered next to a mound of unwrapped gifts and a sink full of dishes, and somehow I thought I could go to not one, but two parties tonight. And, oh yeah, I promised to bring homemade cookies. 

What the hell was I thinking? Who do I even think I am?

Rather than dropping my phone in the toilet and hiding under the covers for the next ten days (OMG there are still TEN DAYS of this madness), I’ve decided to come up with a plan. Turns out, my main concerns during the holidays are really my main concerns IRL, but in December they’re jacked up on cheap champagne. 

Among them:
  • I won’t have enough energy to entertain or shop for gifts.
  • Changes in diet will eff up my delicate system. 
  • I’ll catch a cold and send my MS spiralling out of control. 
  • I won’t have the strength to do all the fun things. FOMO. 
  • People who haven’t seen me for awhile will be startled by my progression.
  • I'll look drunk without the benefit of actually being drunk.
Thankfully, all of this shit can be managed. Herewith:

My 10 Best Holiday Survival Hacks

Outsourcing

Did you know you can get a turkey on the internet now? Yup. A turkey. I’d like to be the kind of girl who can pull off a turkey dinner. And I am. Sort of. Secret sharing time: after deciding it would be super fun to host said supper, when the time finally came, I didn’t know how I was going to will my body into cooperation. Instead of bailing, I unapologetically ordered a pre-cooked turkey. And why would I apologize? I've cooked 4 turkeys in my entire life and Pusateri's has cooked at least 7 thousand. They definitely know better than me. The goal wasn’t to prove I’m an awesome cook (I’m not). The goal was to eat a skin bowl with some of my besties and play fairy godmother to my godchildren. Fait accompli.

Drink Through It

I know what you’re thinking. Here she goes telling us how alcohol is the solution. And you would be right. But downing 2:1 water for every cocktail is a life hack. You’re welcome. Because changes in my diet will affect how I’m feeling, I really do try to stick to my exercise and sleep routine. And to avoid the side-eyes of those who will blame my loopy gate on liquors, I like to do most of my drinking sitting down. 

No Touching

If you ask me, there’s simply too much hugging at Christmas. At a time when passing the peace can feel more like passing the plague, a good quality hand sanitizer is my best accessory. And all the extra scrubbing means I also need a great lotion. I love my l’Occitane. This post isn’t sponsored, but I wish it were. 

Online Shopping

Duh, I know. This one is so obvious, I don’t need to plug its benefits, but it’s the reason why anyone who gets a gift from me, ever gets a gift from me. Santa is a MacBook for whom I don’t ever have to put on a bra.

Shoving Shit in a Closet

People are coming over. I’ve known for weeks, and yet here we are shoving shit in a closet. Everything in its place. Sometimes that place is a sky-high fire hazard behind your bed.

Pre-napping

Like pre-drinking, but cheaper. Even if I don’t actually fall asleep, it’s important for me to be totally off my feet for an hour before going out or having anyone over in the evening which is typically a challenging time of day for me.

Knowing when to say Fuck It

There’s good, and there’s good enough (this blog post). I accept that I can’t be awesome all the time and maybe not everyone I’ve ever met is going to get a Christmas card from me this year (Spoiler: Nobody is). And, if I finish wrapping a gift only to realize I miscalculated how much paper I’d need, leaving a small exposed square, so be it. I already ruined the wrapping job anyway when I ran out of Scotch tape and decided to use painter's tape.

Netflix

It’s important to make time for loved ones and Netflix is no exception. Because Netflix gets you like your family never will. I like to put downtime in the calendar. It helps me recognize it as a priority. 

Just Say No

Sometimes I cancel plans. I don’t like to and I feel guilty, or I don’t. Because I know my presence isn’t going to make or break a great shindig. Plus, secret surprise - everybody wants to bail on stuff this time of year. Let yourself off the hook and then don’t be a dick the next time someone flakes on you. (Unless it’s my birthday. Seriously, I will cut you.)

Just Say Yes

Because often the best nights are the ones where we rally. To get myself out the door when it feels impossible, I always plan a GTFO strategy. I tell myself I’m going for 15 minutes. Most of the time, the energy somehow shows up once I get to the actual event. Just show up.


I have a lot to look forward to as we wrap up this year, and when I look at my calendar and think about all the friends and family I’m going to eat, drink and be merry with, I’m reminded that it doesn’t matter if my base boards are gross (they are). I’m taking my niece to see her first Nutcracker. 

Merry Christmas and Happy Holidays, Trippers. May you drink too much champagne and kiss someone lovely at midnight on NYE.

Love, A.

What are your holiday hacks?


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11.01.2016

What's Wrong with Me? What's Wrong With You!

I’ve just returned from the most fantastic vacay to Spain and France with The Banker and Optimus Prime, my sexy new sidekick and cool, convertible rollator. 

This trip was my first time traveling with Optimus and all three of us were nervous. 

The Banker: “Will it be hard to get in and out of cabs, train stations and airports? Will we be holding up traffic and pissing people off?” 

Optimus: “Will I get thrown around by surly baggage handlers? Will I be damaged in transit, leaving my new BFF stranded and without assistance?” 

Me: “What will people say? How will they treat me differently with my new entourage?” 

These were among our excessively polite Canadian concerns. But in the end, we had no reason to fret. The Banker had practiced packing and converting Optimus and could do it in a slick 90 seconds. OP returned to Canada un-traumatized, with the exception of one inevitable Parisian dog merde encounter. And surprisingly, nobody said anything to me about my obvious accessory. Well, that’s not entirely true. I really did get some compliments on my awesome boots. I’m telling you, they are beautiful boots. 

Optimus Prime is still a bit shy about being photographed. (Not pictured: my bad ass boots)

I was grateful to ease into things with OP without having to respond to any raised eyebrows. We were out and about every day but my differences never came up in casual conversation. This was unexpected because it’s not the same here in ‘polite’ Canada. Sometimes it takes leaving our homes and experiencing a different culture to see things a little more clearly.

On this side of the ocean, I've been fielding questions about my deal ever since I started using a cane a few years ago, and it’s only ramped up since I began using a rollator. What’s wrong with your leg? What did you do? What happened? I get it. You’re not used to seeing people like me; young but using the tools of the old. For whatever reason, we feel we need to comment or ask questions. It’s like our collective discomfort around disability forces us to fill the air, to address the elephant in the room, or on the street for that matter. I end up feeling like I have to reveal personal information, explain myself. I end up feeling like I'm the elephant. 

Why do we think we can make these comments to total strangers? Is it our general feeling of superiority over persons with disabilities? What do we really want to know? Maybe these comments seem benign; people just trying to make conversation. I don’t believe everyone who talks to me is a nosy jerk, but these interactions are not okay. These questions all boil down to "What’s wrong with you." 

“What’s wrong with you?” is not an acceptable ice breaker. 


After two whole weeks of not being put on the spot with questions about my body, things changed as soon as we passed customs at Pearson when an elderly man gestured to my rollator and said, “I’m just glad I don’t need one of those yet.” (At which point OP rolled his eyes and was like, As if I would ever be caught dead with you.) What's frustrating is, I hear stuff like this all the time.

I used to politely answer, putting the comfort of others ahead of my own, and feeling like I had no ownership over my personal health status. I felt like I owed everyone an explanation and even an apology, because it often feels like my clumsy presence is an inconvenience. I would insist that "It’s not that bad", doing my best to make others feel comfortable in the awkward situation they'd unwittingly created. A situation where everyone you encounter first sees you and labels you with something negative, with a defect, and then actually says it out loud. Imagine your most personal struggle in life. Now, imagine that everyone you meet asks you to tell them what that is before they even ask your name. What would you say? 

I don’t want to do that anymore. I've been experimenting with alternate answers and lately when someone would ask "What happened?" I would shrug it off saying "Genetics", but that seemed like a cruel response when I was asked and found my mother standing next to me. So, yesterday, when a curious stranger gave me the up-down before declaring, “You’re too young to be using one of those”, Fantasy-Me boldly said, “You’re too old to be asking rude questions.” But, Reality-Me just didn’t answer. When he didn’t get the hint and kept questioning, I awkwardly walked away, muttering something about croissants. I still felt ill at ease, but I also felt good about having protected my privacy. He didn't deserve this kind of intel, and by my refusal to give it, he could only label me as ‘bitch’ and not ‘MS patient’. Turns out I’m both, but it's up to me to decide if you get to know that.

Later when I obsessed over what I should have said that would have left us both feeling better, it suddenly came to me. The answer that I’ve been searching for is so simple I can hardly believe it's never occurred to me before:

“That’s a little personal; I’d rather not say.” 


I can say it in my nice voice, with a smile, using the manners I was raised with and everyone walks (or rolls) away feeling good. It's so easy.

"I'd rather not say"


In the mean time, maybe that excessively polite reputation we Canadians have is not an accurate stereotype. Maybe we need to take an example from our Euro friends. Drink more wine, eat more cheese, and ask fewer questions.  

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9.28.2016

11 Of The Worst Myths About MS Exposed




I've been writing a lot of serious things lately; it's time for an insipid list. Are you listening, Buzzfeed?


Myth #1 Spa treatments will cure multiple sclerosis

While it’s true you cannot spell ‘pedicure’ without ‘cure’, a fresh coat of polish and some attention to your cuticles is not, in fact, a quick fix for drop foot. I mean, I was convinced my pedi was definitely strengthening something when I almost power-kicked my aesthetician in the face; but that wasn't intentional, merely an involuntary reflex, and not a medically significant outcome. My disappointment was reinforced when I tried to claim this spa visit, and my insurance company got really crusty about it.   

Myth #2 You cannot get more than one disease at a time

I believed this was a thing; because, like, everyone has something, but nobody has two things, right? Having MS was my thing, which meant I was invincible to other calamities. I actually used to say this out loud. 

"I don't need a dentist. Duh. You can't get more than one disease at time time." 

So I stopped flossing, thought about taking up smoking, and was playing fast and loose with my breast exams. Then, out of nowhere (okay, Poland), I got diagnosed with a mild arrhythmia called Wolff Parkinson White. All I heard was Parkinsons and lost my freaking mind, until it was explained to me that they’re not really the same thing. Technically, they're not even kind of the same thing. (Which is really what the lab technician should have opened with instead of sending me on my way and telling me to follow up with someone who speaks English.) My life had flashed before my eyes, and now I wear my seatbelt, take my vitamins, and obsess over my own mortality all the damn time. Turns out this paranoia isn't unreasonable, because science says that having one auto-immune disease increases the risk of acquiring a second (or third...) auto-immune disease. Quick, somebody get me a lottery ticket. 

Myth #3 You have to fight to beat MS

Fight whom? Myself? My brain? Should I punch myself in the spine? I don't enjoy conflict, least of all with my own body. I don't know how to throw a punch, and my failed kick at the pedicure girl  missed by about 6 inches and smudged my polish in the process. That is a lose-lose fight. I guess I could slowly poison my liver with booze? That’ll teach my no good body to mess with me. 

Homer gets it.


Myth #4 There’s a cure! 

Wait, what? Tell me more! How have I have not heard of this?

Because there is no cure. There are some treatments that are effective for some people. I swear to you; I know all about them. Please stop telling me about something you sorta remember in Russia, or maybe it was Lithuania, but really it was just the headline of an article you saw on the inter webs; and anyway, I am not going back to Poland. I promise you that when there is a cure it is utterly impossible that I will first hear about it in a link you tweet me. Stick to updating me on the latest #timesup jerk, or why Meghan Markle's dad is ditching his own daughter's Royal wedding. This is the breaking news I trust you to deliver. 

Myth #5 Getting liquored and engaging in séances with your besties will give you MS

Every super hero has an origin story, and as the heroine of my own, I'd convinced myself that some cheap red wine and a sketchy book of spells gave me some bad karma when I started experiencing my first MS symptoms one week after Halloween. I wish I were making this up, but I believed in the power of my own shoddy witchcraft for at least three years. I may be a true Slytherin, but the fact is, Hogwarts isn't real. 

Myth #6 MS is contagious

I wish. Then I could give it to my enemies. Okay, I’m obviously kidding. No, I’m not. 

Myth #7 Pretty people don’t get diseases

Someone actually said this to me. Turns out pretty people can also get new friends.

Myth #8 Everything happens for a reason

Oh really? Tell me more about the holocaust.

Myth #9 It all works out in the end. God doesn’t give us more than we can handle

See #8

Myth #10 People with MS are descended from Vikings

This one might be true, and that’s good enough for me to claim to everyone I know that it definitely is true. Our pets were dragons. It’s the only cool thing about having a horrible disease. Or about having super pasty skin, for that matter. 

 
Thanks, asshole

Myth #11 MS is a journey

Journey was a band that your parents listened to. Journey is a PS3 game for nerds. Journey is an affordable midsize crossover. Multiple Sclerosis is a vile disease. Calling MS a journey is an insult to the ’70’s, gamers, and sensible family vehicles everywhere. Don’t stop believing, MS sucks.

The internet is full of bad information about MS. What are some of your favourite misconceptions? Anything you wanna clear up?








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8.27.2016

Friends Don't Let Friends Buy Ugly Mobility Aids

I never thought I could get excited about a mobility aid. Obvi. I love shopping, but of all the packages I’ve welcomed into my life, this isn’t one I ever thought I’d sign for.

Recently, I’ve had to accept that multiple sclerosis has caused me to need a little help staying vertical. A cane isn’t cutting it so I’ve been experimenting with rollators (formerly known as walkers). But on long days when my legs straight up quit, a rollator just isn't enough to keep me on the dance floor (okay, the regular floor). Luckily, we live in The Future where rollators exist that, with a few slick moves, convert to pushable chairs for just such occasions — like real-life Transformers but with less fire power. What? This blew my mind. 


Until I actually saw them.

Because BMW doesn’t make them yet (and neither does Hasbro), most are not designed with style in mind. After much research, I narrowed my choices to two. Frankly, there aren’t many on the market.

Option A

Pros: Reasonably Priced

Cons: An electric-purple, clunky assortment of cables complete with side bags, front bags, rear bags (wtf does anyone put in all those bags?) plus an unnecessarily wide seat belt and a Super Big Gulp sized cupholder. Had it come to this? What would attachment to this device say about me? Were all those bags just a sneaky stepping stone on the road to becoming a full-fledged Bag Lady? Despite its accessories, and its overwhelming purpleness, it looked so medical. I hated it. If this were indeed a Transformer, it would surely be a Decepticon.

Option B

Pros: Sleek, streamlined, European (natch). Comfortable and easy to maneuver. Available in colours like ice blue and cloud grey, for the born after the 1930s crowd. Almost cool. I mean, it’s still a walker, but it was a lot closer to Optimus Prime than Option A.

Cons: It costs all the money

Ignoring some functionality concerns and the obvious style ones, I decided to suck it up and go with the morally sketchy Decepticon. The Banker looked at me pityingly as I held back tears and told myself I was gonna need some killer outfits to distract from its heinousness. I was desperate to get the purchase over with but the hunk of aubergine anxiety wouldn’t fit in our car. (NB: Calling it ‘aubergine’ didn't make it suck less. I tried). We left frustrated and empty-handed.

That night, I sent my ginger bestie a pic of the twisted piece of purple scrap metal and shitty nylon bags. My phone rang immediately. “Absolutely not. You cannot take that to Barcelona.” (I’m going to Barcelona.) The next words out of GB’s mouth were, “What happened to the sexy one? Why aren’t you getting that one?” Sexy walker; her words, not mine.

My ginger bestie and I have been informing each other’s shopping decisions since 1998. Our post-work retreats to unwind and gossip about that B who was always trying to steal our boyfriends were a critical part of our early friendship. A sideways look, and we knew we were headed to the mall as soon as 5 o’clock hit. And not just any mall. We happily drove the extra 40 minutes to get to the good mall. The history of our sisterhood is marked by our most memorable scores. The lavender python boots of Amsterdam. The lemon yellow silk skirt. She even helped me buy my four poster bed, which I later gifted to her after I got married.

We are experts on rationalizing each other’s extravagances; easily coming up with a quick 10 reasons to justify a splurge. We’ve cultivated a legit fear of the outfit that got away. Most recently, "You don’t have red patent leather ankle boots. That is a glaring hole in your fall wardrobe," helped push the plastic to the register.

If this sounds materialistic and irresponsible, it’s because it totally is. Fortunately, we’ve matured some since the early aughts and are less likely to haphazardly wreck our credit scores. But these are life skills that die hard. After years of friendship, she was qualified and well within her job description as bestie to question the Decepticon purchase so ardently.

I also consulted with my barrister bestie (because every modern girl needs a good lawyer). My BB is decidedly more practical and way less likely to encourage a wallet apocalypse. Even she said, “You HAVE TO buy the nice one. Who CARES about the money? What if you have an event?”

Oh my God. Events. I hadn’t thought of that. I imagined myself struggling with the purple beast in a chic restaurant. Suddenly it seemed ludicrous to even consider taking a saddle-bagged Decepticon anywhere. This thing is going to be an extension of me, in a way. An expression of me. And everyone knows Decepticons are notorious douchebags.

It’s hard needing a mobility aid. Really hard. There's so much beyond my control that I must sacrifice because of MS, but there is no need for me to give up style. I accept that using a mobility device adds a certain je ne sais quoi to my image. But I don't accept that we can't do better than this. So how about designing a few more of these things with the cool kids in mind? Shallow or not, our stuff helps us establish our identities and Option A was crushing my soul.

In the end, our tribe sometimes knows us better than we know ourselves, especially when we get overwhelmed with change. Ultimately, Optimus Prime maintains several functional advantages in addition to the superficial style ones. (For one, it fits in the damn car). I know how fortunate I am to be able to find the scrilla for this purchase, and the fact that these items should be more affordable for everyone is an angry argument for another day. The sexy rollator has been ordered and truth be told, I’m actually kind of excited about it.


ooh, nice shoes

Geriatric purple would have been a disaster with my red leather ankle boots.


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8.16.2016

What I'm Reading

A couple of weeks ago I received a package in the mail. Fellow writer and Tripper Jennifer Evans, had sent me a collection of poems she had compiled, penned by MS’ers about their experiences, called Touching MS, Poetic Expressions.

My first thought was delight; how nice to have received such a thoughtful gift from a stranger.

My second thought was Oh God, amateur disease-poetry. This is going to be terrible.

I poured myself a big glass of wine and decided to give it a peek, because these are my people. To my surprise I ended up reading the whole collection in one sitting, cover to cover. It’s not all Tennyson but some of what I read rang so true to my own experience that I easily could have signed my name to it. (I mean, not enough swearing to convince you I’d actually written any of it, but that is why I don’t write poetry, bitches). 


Don’t be fooled by the flowery cover. There’s nothing sugar-coated about what’s inside. At times hopeful and at times raw, it will remind you that you are not alone.

Like this one from Marie Kane:

Unsinged
Marie Kane

Charcoal fire lights our patio bricks. You turn the steak,
     reveal crosshatch pattern of the grill.
I sit above you on the porch; we are silent as we often are.
     Perhaps you regret serving steak, which you have to cook
and slice, and regret having to clean up this dinner
     with its vegetables and rice, and even rue the decision

to marry me now that I am crippled, not able to do
     as I used to - 
anything, really - and you are so quiet I want to
     make as much
uproar as I can, rail against you for being so
     confoundingly stoic,
You finish grilling, climb the porch stairs, kiss my shoulder,
     and enter the kitchen. I follow, my cane catching the metal
strip at the entrance. I grab the door jamb to keep
     from falling.

“Are you OK?” you ask. There is nothing in the world that
     could make me tell you the truth. You      remove the red 
cowhide grill gloves, fill the white plate with asparagus 
     and rice,
thinly slice the London broil, reserve the most tender for me,
     and with the same steady hands, help me into my chair,
guide it to the most suitable position at the table, present
     my plate,

and light the candles. We eat by their faint glow, and 
     my most
secret self responds to your generosity with embarrassed
     compliments about the food. Later, I watch you sleep,
scent of the grill in your hair, while your hands - 
     unsinged, wide, loose on my breast - 
claim me this night as your own.

Originally published on multiplesclerosisnewstoday

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7.06.2016

Will I Ever Stop Freaking Out About Progressive MS?


I haven’t written much lately because I wasn’t sure I had anything nice to say and we all know the internet is no place for negativity. The thing is, I’m going through a bit of a thing. A crisis maybe, and a graduation of sorts, to a new level of disability. After 15 years it’s time for me to start using a walker on the regular. And somehow there’s still part of me that is utterly stunned by this. Fifteen years with an MS diagnosis and though it feels like forever, this has been a relatively quick trip to Walkerton (even as I realize there are sadly, many who’ve reached this town even faster). 

I’ve only just gotten used to using a cane and it’s time for a walker. Well, a rollator is what we’re supposed to call them now. And if the cane has taught me anything, it’s that there's no going back. At least with MS, these things tend to be permanent, or they stick around until a new level of suck is reached and a more advanced assistive device is required. It's that whole graduation thing but with less pomp and more circumstance. For there will be no keg party, no drunken make-outs and no prom dress at this grad. My only diploma is a bump in my EDSS score and my award, a clunky mobility aid. Nobody wants to stay up all night celebrating this milestone. Although drinking until I barf does seem rather tempting right about now. 

For several weeks as I waited for Rolly’s arrival (thanks ridiculously slow health care system for giving me ample time to emotionally process all this), I was able to see the bright side. I told myself a Rollator will afford me more freedom. Greater endurance. A cool basket to put stuff in. 

No big deal.

But then a week ago, in the middle of all this healthy acceptance and well adjusted adjusting, something switched. I found myself assigning all kinds of meaning to this situation, leading me to freak out over a cheese plate and a pitcher of sangria on the balcony. The sudden change in my perception was so unexpected, I knew it had to be poisonous. But like the boozy fruit juice in front of me, I couldn’t stop myself from picking it up and taking a big sip of hysteria. Call it a walker or a rollator or whatever you want. Turns out needing this level of assistance just to get around is totally a BFD.

Like always, The Banker did his best to calm me down but I was having none of it. He countered each of my anxieties with hopeful reassurances and hunks of baguette smeared with brie. He told me for the thousandth time we are in this together and insisted his life is at least a million billion times better with any version of me in it. At least. He urged me to try the pâté. I remained unconvinced. He poured more sangria and that helped, but I can be very convincing, and finally I managed to make both of us cry. Somehow we finished our drinks and all the charcuterie and by morning I could breathe again. I’d purged all the grief from my system. I was ready to accept this breakup with independent walking and move on.

Or so I'd thought. We all know the first breakup never takes, and the next night I found myself staring at the ceiling at 3am thinking about what comes next. Trying to hold it together. Imagining the worst and not comprehending how I will possibly cope. Because the very, very worst part of all this is What comes next? 


It’s always what comes next. 

The next night I lay awake doing some random made-up math on how much time I think I have left. This was tiring because I'm not good at math, but not tiring enough to put me to sleep, so I got up to hang with the dog. Not surprisingly, she didn’t have any sage advice. She slept next to me, not judging, but occasionally waking to engage in some questionable self grooming. Ugh. I mean, clearly, she has her own problems.

Then after three sleepless nights I decided not to take any chances and chased a handful of zopiclone with a generous glass of red wine. Guys, this is not a substitute for medical advice, okay? This is a blog.

I slept better (sort of), but was still one more teary meltdown away from turning the corner. The one where I ugly cry and insist I’m not strong enough to deal with this. The one where I panic that I’m running out of time, and sob about the unfairness of it all, convinced my best days are behind me. The one where I conclude I am not okay. Because NONE OF THIS IS OKAY.


(deep breath)

So. Much. Drama. Barf me to death. So I’m freaking out. Again. Sorry, everyone that loves me or has to be around me. I know this gets boring. But does anyone take this in stride? (No pun intended) It’s not spilled milk. The reality of MS is that not everything gets lost at diagnosis and grieved over all at once. It’s like getting a new disease over and over again.


I thought I was cool about this and then it arrived and I started to hyperventilate. The dog is in the picture to distract me from how fucked all of this is.

Though I’m still not really sleeping, I am starting to see my way out. Not because my body is stronger or my disease is slowing down. But because I can’t stay in this darkness for too long. And something I read last night seemed to click. 

LOVE WHAT YOU HAVE 

(thanks Andy, sorry for all the swearing)

We’ve all heard this before. Don’t hate what you don’t have. Love what you have. Somehow this is different from Be Grateful For What You Have, which sounds more like a bossy threat. Like, you’d better appreciate what you have before it gets snatched away - and isn’t that just the epitome of MS? Where any ability you have can be taken in a heartbeat? It can be challenging to be grateful for what seems like it’s only on loan when you know there's a creepy repo man lurking around the corner just waiting to make his move. 

Love what you have feels different. If you love something you don’t just acknowledge it with a polite thank you. You have to take care of it. You have to be kind to it. You have to do something - it’s not passive. Love is a verb. Could I give my MS a hug instead of a side eye loaded with vitriol? Love is patient, love is kind…that’s from the Bible, bitches, so you know it’s good. If I can find love for what my legs can do for me today, can I be patient and kind to them? 

As I struggled to get to sleep last night I started making a mental Love What I Have list. I tried really hard to not take anything for granted, to not make this a ‘love what I have left’ list. I thought about The Banker and the dog and the tremendous comfort their love for me creates; the big obvious haves that go to the top of my list. Someday I will certainly lose my pup. She’s 11 years old. Suddenly I realize that knowing this doesn’t make me love her less. I don’t spend the time I have with her consumed with anxiety about what life will be like without her. I will deal with that later. That is a pain and a loss for Future Me to deal with.

Encouraged, I kept going with this list. I wanted to identify more than the things outside of me. I wanted to find love for the things that are maybe not the same as they once were. I wanted to find  love for the things MS is trying to steal from me. 

I decide to love that I got dressed and into bed by myself. I decide I love that I am independent. I resist the urge to frame this as 'still' independent because it implies impermanence, it implies 'for now'. I love that I am independent. Period. That used to mean Girl Power but now it means I can walk to the bathroom by myself. Make coffee. Put my socks on. It’s an effort but I somehow manage to feel this without bitterness. I am truly thankful I can walk at all. And as tempted as I am to dwell on how desperately I want to walk forever - thinking about it takes me away from what I have today and puts me in an unknown, scary, future place that seems dark and impossible. It’s so nauseatingly throw up in my mouth cliché but I don’t have the future, I only have today.  Sometimes I think I’m selling myself a bunch of Pollyanna bullshit but the only thing more exhausting than convincing myself of some Pollyanna bullshit is spiralling into despair. It's better to decide I in fact have enough green grass right now. It’s time to pick myself up off the floor. 

I don’t want to fight with my legs. I don’t want to resent them or feel frustrated. I want to love them. I want to slather them in lavender scented l’Occitane and whisper Thank you. I know you’re trying. It’s not your fault. You deserve beautiful shoes and regular pedicures.

Remember what I said about the very, very worst part of this? That is Future Me’s problem.

Maybe this graduation does deserve a party. After all, we mark transitions with traditions. So. Who wants to have a glass of Pommery?








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