1.13.2018

Remembering My First Official Day With MS

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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1.01.2018

5 Things I Did Right Last Year & What I Want Out Of 2018

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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12.12.2017

It's The Worst Symptom of MS. Do You Have It?

Two weeks ago, I had a really good day. Not just a good day, a good MS Day. This was kind of a big deal, because for the last couple of years, almost all the fluctuations of my multiple sclerosis have been towards a worsening of symptoms; the pendulum almost never swings toward improvement anymore. I struggle to feel grateful for stability at the best of times, and for slower progression the rest of the time. But then, two weeks ago, in the gym with my awesome physiotherapist, Megan, we were both pretty surprised at how my hip flexors were performing. My balance seemed better than normal, too. I’d been intending to budget my energy in anticipation of a busier than average day ahead, but suddenly felt strong enough to party like it was nine months ago, so I powered through a full workout instead.

That evening, The Banker and I went to Toronto’s massive Christmas Market in the historic distillery district. It’s a popular place, with crowds and cobblestones to negotiate, but I was bent on sipping cider and seeing the 50 ft. tree. I wanted to wander through the light tunnel and see for myself what kind of people actually traipse around gnawing on massive turkey legs (spoiler: tacky ones). We took Optimus Prime, my badass convertible rollator/transport chair, because my plan was to walk as long as possible, knowing eventually I’d need a push.

And then I didn’t.

With one little break to sit and look at the enormous tree, I spent the rest of the evening on my feet. And I was stunned and happy and hopeful about how much stamina I’d had. Was my ketogenic diet finally kicking in? Was my increased strength because I’d recently given up sugar and dairy? Has the biotin I’ve been shelling out for over the last year finally paid off?

I’m not one to find something where there’s nothing. At the end of the day, I’m a realist. But any little improvement when you’re doing everything you can just to slow down decline can feel like a massive win. And, I felt like it deserved to be acknowledged.

So I said it out loud. 

Which was obviously a mistake. 

Two days later, I tried to ignore the weird feeling I woke up with on my head. Like I was wearing a hat. And then, the burning nerve pain that usually hangs out in my feet, started showing up in patches on my legs, and my hip, even though I’d stopped eating gluten a full 6 weeks ago. In my experience, new patches of nerve pain are often the first sign that the beast is waking up. Still, I didn’t freak out.

Two days after that, it was time to check in with my physiotherapist, and do a timed, 2-minute walk test; a standard, if surprisingly unsophisticated, measure of worsening disease in the MS world. I gripped my walking sticks, and tried to go as fast as possible without actually falling. I was in a race against my own decline, and I was desperate to get even one step farther than I had during the last test. But nobody watching me lumber along would have ever guessed I was in any kind of hurry, let alone what felt to me like running for my life. 

When Megan’s phone finally beeped to indicate my two minutes were up, I was nowhere near my goal. In fact, I’d lost about 20% of the ground I'd been able to cover since we’d last tested a few months ago. My heart sank with that familiar feeling. Progression. 

Then, 3 days ago, I met a friend for lunch. The Banker dropped me off, and knowing I only had to travel from the car to the table and back, I opted to bring my cane rather than my rollator. I knew it would only be a handful of steps, and sometimes the rollator can feel like such a pain in the ass. My friend and I had a lovely, productive lunch. Afterwards, I almost made it safely to the car. In fact, I was so close to the car that as I went down, I really hoped it would be what would break my fall. Alas, it was the sidewalk that caught me. And my face. 


Oh, hey, it's cool. I'm just gonna hang out on the ground for a bit.

Since then I’ve been replaying the walking test and the stupid fall, over and over again in my head. What happened to my good day? Why are my hip flexors still kicking ass while my right foot has just decided to stop trying? 

Is this because I forgot what beer is made of, and had half a bottle of Stella last week?

Last night I was more preoccupied than usual, thinking about this failing body, trying to be grateful for what it can still do. As I was rubbing my feet in my nightly attempt to get them to feel something other than constant burning, The Banker, seeing that I was in distress, asked me, “What’s your worst symptom right now?”.

I didn’t even have to think about it. “Fear”, I said. It’s always fear. 




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12.04.2017

What You Need To Know About Colds And Flu With MS

If, by the time you’ve finished reading this, you’re afraid to come anywhere near me, then I’ve done my job. It’s not you. It’s your pathogens. Notorious germaphobe and paranoid recluse, Howard Hughes, was on to something with his habit of setting his clothes on fire after a brush with someone sick. The dictionary makes mysophobia sound like a bad thing, and okay, maybe Hughes was a teeny bit mentally ill, but seriously. If cold and flu season has taught us anything, it’s that the majority of the population could stand to dedicate a little more time to soap and water. 

As a paranoid germaphobe myself, I spend the winter months nervously giving the side-eye to everyone with a bit of a red nose. I’ve perfected the art of opening doors and pushing elevator buttons without ever making contact with my skin. I wear gloves as much as possible, and never miss an opportunity to give them a swipe of hand sanitizer. I hate passing the peace, handshakes and hugs, free samples, and food on platters. When I hear anyone cough in public, I say a silent prayer that it was a smoker’s cough and not something communicable. I don’t care if it came from a ten-year-old. Ten-year-olds are first-rate germ factories.  

I am straight-up annoying to everyone I know. 

Annoying or otherwise, my fears have been validated by someone with a PhD. The last time I saw my neurologist we talked about how my MS is sadly progressing, despite my having had all the drugs. The big guns. There are no new DMD’s for me to try, and instead of leaving with a prescription, I left with strict instructions that the best thing I could do to prevent faster progression would be to stop getting UTI’s, and to avoid getting colds or flus like, well, the plague. 

While nobody likes getting sick, the consequences of a cold or infection for someone with MS can be catastrophic. I know, you think I’m being hysterical. But here’s the deal.

People with MS already have out of control immune systems that aren’t good at multi-tasking. Exposure to immune-modulating therapies can make it easier to contract infections, and they can last longer and hit harder. When MS is already messing up your life, getting sick can be debilitating. While this sucks, it’s not even close to the worst part. I could deal with bedrest and Netflix a few times a year. It’s unpleasant but temporary, right? Wrong.

The scariest thing about these infections is that, the trigger-happy MS immune system might be well-intentioned as it seeks to destroy that which it thinks is threatening, but more often than not, it’s completely fucking wrong. Poking at it with a stick can prompt an actual relapse that has nothing to do with snot, coughing, or phlegm. The consequences of a relapse can be permanent neurological damage. Yeah. All because of a cold.                                                                   

What do I know? I'm just a paranoid blogger. 

You don’t have to take my word for it. In 2006, brainiac neurologist Dr. William A. Sibley won a fancy prize for his research showing the influence of infections on MS relapses. His work proved that up to one-third of MS attacks follow a viral upper respiratory tract infection (that’s colds and flus, bitches).

One-third. 

When I think about the relapses that could have been prevented, I want to barf. 

Colds and flus are a part of life. We have a whole season dedicated to them. But the situation doesn’t have to be as bad as we let it. We live in a culture that values work over well-being, and showing-up over shutting-down. Between our obsessive work culture and out of control FOMO, we’ve convinced ourselves there’s something noble about ploughing through when we’re under the weather, regardless of how this might impact other people. Are we insane?

If you're coughing or sneezing, put on a Hazmat suit or just stay home.

Obviously, the answer for me is to live alone in a castle with a moat full of dragons. But that seems expensive, and unlike Hughes, I have no desire to completely withdraw from society, cootie-ridden though it may be. It’s December. Party season. And I intend to make merry. In fact, The Banker and I are hosting a holiday bash next week. But there won't be any making out under the mistletoe, and no, you may not have a sip of my drink. If you are lucky enough to be on the guest-list, there will be a bouncer at the door, disguised as a triage nurse, who will take your temperature and give you medical clearance before letting you in. 

So, wash your hands, don't touch your face, and wash your hands again. This holiday season may the only things we spread be joy, love, and cheer. And if you are coughing, sniffling, or sneezing, please stay home. 


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11.17.2017

Why Should I Love The Sound Of My MS?

I love my Mountain Equipment Co-op down-filled booties. Made for campers and people who like, go outside, these booties are built to travel from tent to fire in the middle of the night. And, I guess that’s practical for some people, but let’s be real. Even without multiple sclerosis, I'm never sleeping on the ground, and my fireplace turns on with a remote, the way God intended. I have no business even shopping at a place like MEC. I mean, I’m not exactly sure what “outdoor recreation gear” is, and until recently, didn’t know that Co-op means you have to become a paying member if you wanna buy anything. Is MEC a cult or something? 

I don’t speak hippie. 

Fortunately, the membership was only five bucks, and I didn’t have to pledge allegiance to Gaia, or trail mix, or my favourite rock (it’s diamonds). Shopping on-line meant I didn’t have to reveal my city-girl attitude and complete lack of belonging either, which was great, because, I NEEDED these booties. 

MEC’s whole mountain climber marketing strategy is way too narrow anyway. I wear these extreme slippers in my loft apartment all day and all night, 12 months a year. Because, even in summer, my particular brand of MS means that the blood only kinda flows to my feet, and this is the best, and cutest, solution I’ve found for keeping my toes from certain amputation.

Recently though, I’ve begun to question my devotion to these beautiful booties. More and more, I’m dragging my right leg along behind me. I struggle to get it off the ground at all, and it’s fine if I’m wearing socks, but when I’m wearing the beloved booties, there’s a heavy whooshing sound that happens as I drag my foot across the floor. Like the sound of a slow-moving villain in a classic horror movie, it has become the soundtrack to my demise. 

You can put down the megaphone, MS. I hear you loud and clear.

My formerly invisible illness is not only visible, now. It’s audible too. 

Balls.

And, here’s the kicker (if only I could kick). I fucking have to learn to love this sound, to be grateful for it, even. Because who knows how much longer I’ll be able to make it?

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11.14.2017

Ever wondered if you have other diseases?

Recently, Tripping On Air was recognized as a Top MS Blog by Healthlabs and that was super nice of them, but it’s good news for you guys too because, they’re giving TOA readers 10 FREE Comprehensive Health Test panels, where you can find out cool things like, your blood type or whether or not you have anemia. Non-Trippers shell out a whopping 99 bucks for this kinda intel. 

Cool. But, is there a catch? You have to be American. 

What? That’s not fair! Relax, hosers. Canada already gets this for free. 

So, if you’re in America and you wanna find out about your lipids and your liver function, call 1-800-579-3914 and ask for your free comprehensive health test panel. You don’t need a doctor’s referral, you just need to name drop Tripping On Air. They will hook you up with a lab nearby where you can provide your blood sample. You’ll get results by email a day or two later. If you’re one of the lucky 10, lemme know how you made out. Don’t like, tell me how your kidneys are functioning - that’s confidential. But I'd love to hear how their service was. 

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11.01.2017

Dumb Things I Did Last Week In Defiance Of MS

Last week I decided I wanted to go to the seriously spooky, grown-up haunted house Legends of Horror at Casa Loma, Toronto’s gothic revival mini-castle that sits just up the street from where we live. For most of October, we could hear the terrified screams of visitors to the exhibit from our balcony, and I wanted in. I had an inkling that this indoor/outdoor 2 kilometre ghost-walk wasn’t maybe the most accessible activity in town, but I ignored that inkling and bought tickets anyway. 

The day before we were set to go, I went back to the Legends of Horror website just to see how prepared I needed to be. I read something advising guests with “physical ailments” not to participate. That seemed a little too broad and ignorant for me, those of us with so called “physical ailments” not all sharing the same limitations or abilities. Plus, they also said it was “not ideal” for pregnant women, which lead me to seriously question what kind of person was making the decisions about who should and should not participate in what’s really just some interactive theatre. 

You think you can stop me, MS?

I emailed the venue to get some intel, and was promptly told the exhibit is not recommended for walker or wheelchair users; that there were some stairs and tunnels. This still wasn’t very specific. Like, just how many stairs are we talking about? Note: Sometimes people with mobility aids can do a few stairs.

I was conflicted, and not really sure if this would be too much for me, but the thought of sitting at home with Halloween FOMO while my friends were out having fun, was too much to bear. And since I don’t have a walker or a wheelchair (I have a rollator and a transport chair), technically, the suitability information provided didn’t apply to me. Let’s do this.

The Banker suggested we bring Optimus Prime my convertible transport chair; that I walk as much as I was able; that he would push me as needed, and carry OP up any stairs we might encounter. Problem solved. I emailed the venue with my awesome new plan, and asked again just how many stairs we were talking about.

This is what they said:

“I would still suggest that is Not a good idea to carry that up and down the ‘uneven terrain’ that is part of this Legends of Horror experience.”

Aside from the callous reference to Optimus as “that” (rude), this was GREAT NEWS. “Not a good idea, is not a hard no. And those quotation marks around uneven terrain? That was enough to convince me that the terrain might actually be pretty even. Grammar matters, people. Plus, they never did answer my question about how many stairs there were, so I decided it was two flights. Two-and-a-half, max. It would be difficult, but I could swing it. Because here’s the thing Casa Loma doesn’t seem to get: People with mobility aids have a whole spectrum of ability. Not all disability is the same, and it’s not cool to just decide something isn’t available to everyone. Just give us the facts, and let us figure it out for ourselves. 

The night of the show, we bundled up and got ready to get scared. We rolled up to the venue, and a visibly alarmed ticket-taker took one look at OP and said, “Uhm, this is one-hundred-percent not accessible”. I was like, “Whatever. We’ll figure it out”.

And we did. In the end, it was like, 15 flights of stairs, in the dark and under a fog machine.  And what took most people an hour, took us well over two, plus a lengthy break at the bar at the midway point. It was actually completely unreasonable for me to have attempted this. 

And I’m so glad I did. 

In a disease where decline seems inevitable, it’s hard not to measure the passing of time by a yardstick of things I can no longer do. Anything in the grey area of what might be a little too tough or even reckless, forces me to say to myself, “If not now, never”. 

So what? It’s just a stupid haunted house. (It was not stupid, it was freaking amazing.) A fun night out with friends doing something a little different, is an experience most take for granted. But there’s this feeling I sometimes get when I’m most aware of MS insidiously creeping up on me, and chipping away at my options. It’s the bittersweet realization that I’m doing something I'll never do again. It's the unspoken knowing that, this time next year, I’ll not be physically able to do whatever it is I’m struggling to do this year. Experiences take on added meaning when you realize:

This is the last time I’ll do this. 

I didn’t think this haunted house thing would turn into a bucket list accomplishment, but I woke up the next morning feeling satisfied I’d experienced something unique and cool, and like I’d kicked some ass, those stairs being way scarier to confront than the wailing banshees and severed heads trying to spook us at the castle. My ill-advised night out was a kind of Fuck You to MS.  

I must thank The Banker who dodged zombies to haul OP up and down all those steps like a damn hero. And thank you to my squad of patient friends, Trace, Lisa, Chris and Peter: I realize it’s extra terrifying to slow-walk through a graveyard. Thank you for not handling me with kid gloves; for not trying to talk me into the cautious, reasonable, thing, and for supporting my choice to keep bulldozing ahead, even when it seems really fucking stupid.


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