Relationships

How To Find MS Friends With (Health) Benefits

Ever met someone randomly and found out you have something unusual in common and squealed “OMG ME TOO!!!” Why do we love that so bad?

How To Find MS Friends With (Health) Benefits

This blog post is sponsored by MS Healthline. All opinions are my own. I have partnered with MS Healthline to lead discussions on style, sexuality, and representation. Scroll to the end for deets.

When I was diagnosed with MS back in 2001, the internet was for nerds or creepers with hotmail. I assume. I mean, I honestly can’t remember how life was before Instagram, but I think I spent a lot of time at the mall, hiking up my low-rise jeans and listening to one whole CD at a time. Facebook wasn’t born yet. Amazon was just a river; and, if I’d wanted to know where, I would have had to go to the library to look it up. No thanks. But, when instinct told me I needed to connect with somebody—anybody who was dealing with the same unknown future MS had dealt me—I had to seek them out at a support group in a sketchy basement somewhere in the east end of Steel Town.

Oh, boo-hoo. Everybody’s future is uncertain. You don’t need someone with MS to relate to that. 

Not to diss my friends and family, but our emotional needs can’t all be met by one person. I love my husband, but The Banker isn’t that fun at the nail bar, nor is he qualified to provide outfit approval. (That pink eyeshadow fail was not his fault; it’s Covid-times and I don’t have access to my usual squad.) The point is, it takes a village. If I want to polish off a bottle of rosé and gossip about the neighbours, I’m calling Lisa. If I wanna be talked into buying just about anything, that’s a job for Tracy. And if I need help hiding a body; well, I’m not naming names, but you know who you are.  

Despite the love and support I get from my friends and family, it can be exhausting and futile to try to explain MS. When it comes to managing my MS, I’ve got a team for that too. In addition to my posse of medical experts, if I want the latest MS research dumbed-down for me, I’m emailing Wheelchair Kamikaze. I’ve been known to panic-text Bethy Bright and Dark while on steroids, and there are things I’ve said to Darcy that I’ve never said to anyone. Darcy can handle it. 

Social networks aren’t going to cure your disease, but they are going to make it better. Loneliness has been proven as deadly as smoking. Covid is making isolation worse for everyone, and that kind of stress can impact sleep patterns and eating habits, and even shorten lives. If you have MS, you need an MS bestie. You probably need two. Why not? They’re free!

Reasons why MS friends are friends with (health) benefits. (I mean, unless you’re Dan and Jen Digmann, then it’s all the benefits 😉)

Having MS friends lessens feelings of isolation

Why does misery love company? I wouldn’t wish this on my worst enemy, but my heart skips a beat when I meet someone with MS. Intimacy is created by swapping secrets; but, what happens when your secrets are completely unrelatable? I’ve fantasized about a magical compound where everyone has MS (like Crip Camp, but with fewer STIs and an open bar). Not because I want the whole world to have MS; but if everyone around me did have MS, I wouldn’t feel so freaking different all the time. 

It’s validating

Connecting with other interesting, fun, cool, smart, accomplished, funny people who have MS is a reminder that I’m still those things too. It’s a reminder that it’s okay to have MS; that having MS is just another way to be human. Duh.

What’s the BFD?
Source: https://tenor.com/IZCa.gif

Symptoms and freakouts happen

MS is often portrayed in a sanitized palatable narrative that can make you feel like you have the ‘wrong’ kind of MS if you don’t recognize yourself amongst the happy-go-lucky ice-cream eaters who appear unaffected by the disease. So many of us are encouraged to hitch our wagon to best-case scenario outcomes, that it can feel like we are the outlier, the exception—even the failure—if symptoms persist or disease worsens. It can be a relief to know someone else struggles the same way we do.

Connecting provides an outlet

Most of us have been told not to let this disease change us. The pressure to be the ‘same you’ is a toxic message disguised as encouraging advice that doesn’t hold any space to process what we’re going through. We may try to keep up because we don’t want to be excluded. We might keep our feelings to ourselves because we don’t want to be a burden; we don’t want to be pitied; and we don’t want to be ‘all about MS’. With MS friends you can be the person you are, instead of the person you were. 

Finding MS friends means discovering resources

There are so many life hacks I’ve sourced from other Trippers. There are even symptoms my docs have shrugged off: my freezing cold, purple fucking feet par exemple. Connecting with others who have the same gross photos to confirm my suspicions keeps me from the insanity of feeling gaslit. 

It’s reassuring, strengthening, empowering

When I was learning to drive, I remember feeling like it was this huge, impossible thing, until I reminded myself of all the not-quite-as-smart-as-me bros I knew in highschool who already had their licences. I told myself if Ferris Rafauli could learn to drive, then so could I. (Don’t feel bad for Ferris, guys. I just googled him, and—holy shit—he’s designing homes for Drake. Who’s the smarty-pants now?). The point is, seeing other people handling their MS, reminds me that I can too. 

It reduces distress

All of this sharing can have the effect of chilling us out. Every now and then we all need to be told everything’s gonna be okay; and, nobody’s better qualified to testify than someone who’s actually limped a mile in your safety shoes or slept on a plastic sheet. 

Pay it forward

Are you good? Do you have your MS shit together? Then you’ve got an opportunity to be there for someone else. You don’t have to be an expert with lots of tips and advice. Being able to say “I see you. I know you’re not drunk; but if you wanna be, I’m here for that too”, can be a lifeline to someone else with MS.

Get empowered

When we see others advocating for themselves or demanding better treatment or care, it encourages us to do the same. Your MS tribe is about surrounding yourself with the people who are like you, and the people who can help you become the ‘you’ you want to be. 

The language around disability and disease is so often infused with calls to battle that it can be confusing to feel love for any part of ourselves that we associate with MS. Ultimately, my love for my real, and virtual, MS friends is a way of loving myself. 

Okay, cool. But where do I find all these awesome friends with MS?

We’ve come a long way since 2001. I don’t miss trucker hats or my pencil-thin eye-brows, and it’s never been easier to find and connect with others who have experience with MS. The MS Healthline app is a great tool, because it goes one step further and matches you with those who are not only living with MS, but are of a similar age, or taking the same medication. Plus, there’s way more to the app than making friends, including some guided live chats, brought to you by some OG MS’ers like moi.

“The antidote for 50 enemies is one friend” – Aristotle


To join the chats, download MS Healthline on iPhone or android and make sure your notifications are turned on, so you know when chats are happening.

Here’s what’s coming up:

June 10th 4pm EST – Product Round-Up: I have yet to meet a crisis I couldn’t shop my way out of. Tune in for my recommendations on everything from where to get the new ‘It’ bag to who makes the best catheter.

June 17th 4pm EST – Let’s talk about how MS is reflected in social and traditional media. 

June 24th 4pm EST – MS Can Mess With Your Mojo: Let’s talk about intimacy and MS.

See you in the chat room!

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What Do My Parents Think About My MS?

An interview with my parents about what it’s like to have an adult kid with MS.

What do my parents think about my MS?

It’s Valentine’s Day and even though this is a holiday reserved for chocolate romantic love or drunk-dialing your ex, I’ve already written about how MS impacts my love life, not to mention my sex life. When you have MS, it affects everyone who loves you. I can’t choose to live without MS, but anyone who chooses me, chooses to adjust to life with MS. That’s love.

When I was diagnosed with MS in my early 20’s, blah blah years ago, I was technically an adult, but just barely. My parents were still my primary support system and were a big part of my diagnosis story. So, this Valentine’s, I thought I’d interview the first people who loved me: my parents. 


Meet the parents: Norma and Jim

Before we talk about love and MS, tell me, what qualities do you think I’ve inherited from each of you?

Mom: I think you get your logic and your teachable spirit from me. You’re a learner and a hard worker.

Me: I’m also a blabber-mouthed, reckless spender. I believe you taught me the valuable lessons: “It’s not gossip, it’s information” and “It’s just money. You can get more”.

Mom: You love things, you definitely got that from me, and that joie de vivre. Life is exciting. Life is beautiful. You got your looks from me. And your sense of style, of course.

Me: Right. “The price of beauty is pain”, and “If you can’t hide it, decorate it”.

Mom: Style goes along with knowing who you are. It’s not just being fashionable, it’s like you know who you are and you express it outwardly.

You think I’m extra? Allow me to introduce you to Norma.

Dad: Well, you get your sense of humour from me. I think you get your compassion from me too.

Me: You once gave an apple to a woman with no teeth.

Dad: Yes. And she told me to stick it up my ass.

It’s been 19 years since my MS diagnosis. What do you remember about that time?

Mom: I was worried you’d had a stroke. MS surprised me. You seemed totally hopeless, you were sobbing. I was in denial and trying to get you to deny it. It was a shitty day.

Dad: I have to confess, I’m quite embarrassed because I did not accept it. When you started telling me the different things you knew about MS, I just turned myself off. I don’t wanna hear this because my baby hasn’t got this; she can’t possibly have this terrible disease. 

Me: When did you finally accept that it was MS?

Dad: It was a gradual acceptance. I had to listen to you. 

Mom: Well, seeing it is different too. When you came home from that vacation and I saw you walking, it’s not here anymore (points to head), it’s here (points to heart).

Dad: The first time I saw you struggling to walk it was like a punch in my stomach. 

What’s the hardest part of being the parent of an adult child with MS?

Dad: The helplessness. I see what you’re going through, and there’s not a damn thing I can do about it. My one strength, I think, is that when you’ve been in a real mess, and I can get you laughing.

Mom: I don’t feel helpless. I feel like there’s maybe some things I can do. Like talking to you when it was time to catheterize. Of course, sometimes I go overboard with the advice. But the hardest thing is that I feel I have to really look after my own health so I can always be there for you.

Me: You feel like you have to live forever so you can look after me???

Mom: No, it’s not that. It’s just, I can’t cure your MS. I can pray about it and that’s what I do. But I would do anything for you that I can do. Like, when you needed draperies and I sewed you 14ft wall to wall curtains. It’s silly and it doesn’t make sense.

Me: So, you wanna stay alive so you can make me fruitcakes when I’m sad?

Mom: Pretty much.

Me: I accept that. 

The Banker: Do you have any fruitcake now?

Dad, what’s the hardest part?

Dad: That MS is devastating. And it’s far more widespread than I ever thought. 

Mom, you already knew a lot about MS from having been a nurse, but what have you learned since my diagnosis?

Mom: Well, how much MS has changed medically over the years. And I’ve learned how expensive it is; how horribly financially devastating it can be. 

Dad: I remember the first time you were told there’s a new drug and not everyone can get it, but you’re gonna get it. So, everybody’s thinking that’s the answer. In my heart I’m thinking, is this the thing? Is it? And then it turns out it wasn’t, and then you end up going for something else, and something else, and then to Poland for God’s sakes. All these terrible things you’ve gotta go through. You’re not just going to Poland for the perogies.

Me: That vodka tho…

Mom: I believe in miracles. There’s an answer out there. We don’t know what it is. I am hopeful. I’ve also felt guilty. Many times I’ve thought it’s from my genes or that I didn’t breast feed you. It’s true.

What do you think is the biggest misconception people have about MS?

Dad: I think people in general have the same opinions I had. They don’t know what it is, so it can’t be that bad. If you say someone has cancer, people know what that is, and the reaction is that there’s nothing worse. But, I’m sorry, there are other things besides cancer, and that was a revelation to me as well. One thing that pisses me off is when people say “Well, how did she get it?”

Me: Like, they think it was lifestyle factors?

Dad: Some people, yeah. Or they just think you should be taking vitamin D. Or they say “I know people that have MS and they’re getting along fine”.

Mom: I think the biggest misconception is that people who don’t have a good course of the disease, it’s because they don’t follow the right diet, or so-and-so has a friend and they have MS and they’re fine.

Dad: I’ve heard that many times.

Me: People say that to you guys? (My head explodes as I realize I’m not the only one subjected to this kind of micro-aggression bullshit.)

Mom/Dad: Yeah/Oh, yeah.

Mom: Someone said to me recently that you should be doing Tai Chi. And that there’s no word for MS in Chinese medicine; that there’s something we’re doing wrong here.

Me: Oh for fuck’s sake.

Dad: It’s ignorance. And that was me, initially. Sadly, I know a hell of a lot more about it now. I’d rather be one of the ignorant ones.

What advice would you give to parents of someone newly diagnosed?

Dad: Listen. Cause they’re gonna have a lot to say, and the more the disease progresses, the more they’re gonna have to say.

Mom: Try to understand what your child’s perception of the disease is. And understand that there’s going to be a whole lot of choices along the way, treatments to take, and things like that. I think the biggest thing is to continue to see them as who they’ve been all along and support that, and not let them collapse under the weight of public opinion or misconception.

Dad: I agree and you do a very good job, because, and I have to get this out there, you know who you are. And you know what you are. And the fact that you’ve got a disease, that doesn’t change it. “I’m Ardra Shephard, get out of my way!”

In case you forgot.
photo: Alkan Emin

Mom: And when young people are diagnosed, maybe they don’t know who they are yet, and to me that’s the biggest danger. 

What’s the most important quality someone with MS needs to have?

Mom: When I was a nurse, a lot of nurses thought people with MS were impatient with them. I think they had a right to be. You need to have a fighting spirit.

Me: To be able to advocate for yourself?

Mom: Yeah.

Dad: I see what you do, I see how you handle this, and I ask myself if this were me would I be doing the same thing?

(Mom shakes her head vigorously. That’s a hard no.)

Dad: I’m extremely proud of you, because not only is this (blogging) helping you, you’re helping so many others. To me, that’s the most important thing. That, and I wish you’d stop using the F word every third sentence, I can’t show this to anybody at church.

Mom: It’s because you’re brave enough to be honest. Society’s taught us not to talk about these things. I love reading people’s comments.

Do you still worry about me, or do you feel like on some level you know I’m gonna be okay?

Dad: Seeing you sitting here, my heart tells me she’s gonna be fine. But when you get up, I’m gonna watch you walk to the door and it’s gonna shatter that dream. She’s not gonna be fine, this isn’t going away.

Mom: When you’re here we’re talking to Ardra the spirit. When we see you leave and struggle to the car we see your body and we cry. 

Me: Oh good lord. Who invited Sarah McLaughlin? I don’t want you guys to be sad, or feel sorry for me when you see me walk…

Dad: Well, I can’t help it. I don’t feel sad or sorry for you, but I feel angry about what that is doing to you. 

Me: You keep pointing to the rollator, but that’s a tool…

Dad: I know that, it’s a symbol for me. It’s not the rollator; what I’m trying to say is what the disease is doing to you.

It is my dream for us to collectively see mobility aids as symbols of liberation, rather than of restriction.

Me: I think of my walking differently now. I feel grateful for all my crooked fucked up steps. I’m not staying home or checking out. If my walking days are numbered, I don’t wanna waste them wishing I was walking like I was three years ago. I’ve done that. It’s exhausting.

Mom: I totally agree with that.

Me: I don’t want people to look at me and feel sad. Or pity. I’m doing stuff. I’m traveling, I have a great life. 

Mom: You don’t have to convince us. The invitation to answer your questions makes us a little more open. You’re asking us how we feel and you’re our little girl.

Dad: That’s the bottom line. 

Mom: And you’re still kicking ass. 

I didn’t look back to see if they were crying when I left.

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How To Hack Your Sex-Life When MS Messes With Your Mojo

I’ve been reluctant to write about sex and MS because whenever I include words like ‘boobs’ or even ‘high heels’ in my posts, I get spam from Russian porn sites, and creepers from wherever creepers live (Alberta?). Plus, my parents are alive and they tell everyone at church how great this blog is. And anyway, if you have MS, you already know that sex can be complicated. Unless you don’t. In which case, you might be beating yourself up over something that isn’t actually your fault. And that seems like a good enough reason to write about this *ahem touchy subject even though we have a family baptism coming up, and I’m gonna have to look all those church people in the eye (Wassup, St Matty’s).

I’d read about the possibility of MS messing with my mojo in a pamphlet when I was first diagnosed at 22, and once I was married in the eyes of God (cough), I experienced a handful of the symptoms that are collectively known as sexual dysfunction (SD) first hand. It was scary and confusing and frustrating. Though SD is extremely common in MS, most patients never discuss it with their neuros (R-Dogg would literally faint); or, I should say, most neuros never discuss it with their patients, because the onus should really be on them.

Sex with MS

The first few times my elevated body temperature and physical exertion left me incapacitated after intercourse, I think The Banker thought he was the man; like, what kind of super-hero love-making skills does it take to render your girlfriend (he means wife) temporarily paralyzed and literally seeing double?

As I would later find out, MS can do a lot more than turn your post-coital (ew) legs into spaghetti while you try to cool down and focus on how many fingers you actually have. According to every edition of Cosmo I ever read, the brain is the most powerful sex-organ. Which isn’t particularly helpful news for those of with brain damage. Like, duh. We know. That’s the problem. The brain is in charge, and if you have MS, this complicated organ can come for your sex life from three directions. Here’s the skinny:

Primary Symptoms

Demyelinated nerves can directly impair sexual function by causing diminished sex-drive, decreased lubrication, problems with orgasm, and erectile dysfunction.

MS is literally a boner-killer. Medically speaking.

Before you say Netflix and no thanks, know that there are some ways you can outsmart your brain and manage these symptoms.

Diminished sex-drive

A low sex-drive can be caused by MS, but certain meds can interfere as well. Talk to your doctor to see if your prescriptions are possible culprits and if a medication change is possible. Low levels of testosterone are more common in MS, and can contribute to feeling over it, so consider getting your T tested. This goes for women as well.

You don’t have to want to do it. You just have to want to want to. Then figure out what gets you there. I’m not gonna tell you to turn off all the lights and drink a bottle of Arbor Mist. You do you.

Dryness

Seems obvious, but get yourself a proper water-based lubricant. Then use lots of it. Do it on your partner’s side of the bed.

Problems with orgasm

I’m not particularly into Spoon Theory (technically it’s a metaphor); but if I were, I’d tell you that sex costs all of today’s spoons and some of tomorrow’s. And anyway, energy reserves should be measured in batteries. And speaking of batteries, get yourself something with batteries. Powerful ones.

Erectile dysfunction

Dudes, if you haven’t heard (seriously?) there are highly effective medications to manage your man-stick, and you don’t have to wait until you’re going grey to get them. So like, get them.

Secondary symptoms

The secondary symptoms that further try to cancel your sex life, are the symptoms that aren’t directly related to sexual function but definitely get in the way of it. Like, it’s hard to be in the mood when you’re dealing with bladder and bowel dysfunction, pain, fatigue, spasticity, weakness, and 17 other things I’ve over-looked. Communication is great, but it isn’t always easy to say:

“Not tonight, honey. I can’t trust my bowel RN.”

When you’re dealing with any combination of these symptoms (because really, who has just one?), sex can feel like yet another thing you have to do while you’re struggling just to get through your day. And, of all these symptoms, fatigue might be the joy-sucking Dementor-In-Chief.

Oh, you wanna do it? Okay, but do you also wanna make dinner? Finish the laundry? Clean the bathroom and everything else I was gonna do tonight?

Just kidding. I was gonna do none of those things (scroll through Insta, drink wine from the bottle, sleep in the shirt I wore all day). The point is:

Sex tricks the chronic illness brain. You see a bed and your brain is like, Oh yeah, I wanna lay down. Ooh, are these flannel sheets? Sure, I’ll have a glass of wine. How relaxing. Then suddenly someone expects you to do stuff. And that stuff is suspiciously like exercise.

This was not supposed to be a place of exercise.

traitor

But, just like exercise and the surprised feeling I have every single time I don’t wanna do it but then I’m glad I did ‘cause afterwards I feel awesome, the feeling only lasts until I try to bend my legs. Or stand up. Or make it to the bathroom before a UTI sets in.

What you can do about secondary symptoms

Secondary symptoms need to be addressed regardless of their impact on your sex-life. There are medication and lifestyle modifications that can improve things. The following strategies are add-ons to an existing MS management plan. As always, not medical advice.

Spasticity

I try to take an extra dose of my spasticity medication before the main event, but always talk to your doctor. Try stretching; or better yet, get your partner to help you stretch. Too medical? I don’t know. Guys; I don’t write for Cosmo.

Pain

Remind your partner about spots that are painful or sensitive to the touch. And then remind them again.

Bladder/bowel

If you’re stressed about the state of your bowel or bladder you are not gonna have a good time. A sense of chill is important. The Banker is used to hearing, “Can you hang on a sec, I have to pee”, and he will take what he can get. But this might be trickier to navigate in new or casual hook-ups. Do it when you feel safe.

Weakness

Cosmo didn’t cover this (note: I did not verify this); so, talk to your doctor, or just do what I do, and let your partner do all the work. If this seems selfish, it’s because I am.

Fatigue

Hacking your sex-life with MS may mean the death of spontaneity; but like, get over it. Like most things with MS, sex takes planning. Put it in the calendar, and budget your energy accordingly. Maybe don’t hit the gym and the hay on the same day. Sex should totally count as physio anyway. Make a plan, but agree on an exit strategy. MS can turn on a dime, and it can be comforting to have an agreed-upon, no-blame, safe-word pact that lets you opt out without having to explain away pain, fatigue, or a sketchy bowel. Just say ‘banana’, and write a rain-cheque.

Tertiary symptoms

MS can lead to depression and anxiety, even low self-esteem. MS can change how you feel about your body. There may be times when you don’t even recognize yourself. I’ve sometimes felt like so much has been taken from this body, it’s hard to imagine it has anything left to give, and in my darkest moments that someone else should want it.

Internalized ableism would have us believe that people with disabilities don’t need, want, or, worst of all deserve to have a healthy sex life. We don’t have enough (any?) sexy role models who happen to have disabilities; so we can hardly be blamed for struggling to recognize our own desirability.

I’m too sexy for my rollator.

Partners of people with MS have admitted to feeling confused by invisible symptoms. They may blame themselves for a lack of bedroom action. They may feel rejected, believing that your pass at passion means you’re no longer into them. They might feel guilt for wanting you so bad when they know how expensive sex is for you. Maybe they’re afraid to bring it up.

And maybe you feel for them. And maybe you don’t. Because, as if the list wasn’t already long enough, now you have to manage the emotions of someone else. You find yourself re-assuring them:

It’s not you. It’s me.

Which is bullshit of course. And a lousy thing to tell yourself. It’s not you, it’s MS. And you are not your MS.

What you can do about tertiary symptoms

Address and treat depression and/or anxiety. Not just for the sake of your sex-life, but for your overall well-being.

Do what you need to remind yourself of who you are, and to feel a little more desirable. It can be hard to feel sexy when you haven’t showered since the solstice, and you don’t want anyone to smell your hair. Spiffing up can add to fatigue, but even I can admit there’s something energizing about smelling like not dirt. Being the version of you that feels the most welcoming doesn’t have to happen every day. Budget accordingly.

Sex can make any of us vulnerable. While you’re worried that a mobility aid has you looking more feeble than fetching, your partner definitely has their own weird issue, like a third nipple they’re terrified you’ll discover. If you’re having trouble finding style role models, check out hashtags like #babeswithmobilityaids. It’s not just me posing with cute rollators. There are people with varying degrees of disability putting themselves out there to help change the narrative about what it means to be fab.

What your partner can do

Partners, know that we want to be the sex-machines you deserve. Managing any or all of these symptoms is exhausting and overwhelming. You can help hack this. In fact, you must. The effort to keep the flame alive can’t be one-sided.

You can always make me a Cosmo. Wink.

Don’t give up on sex with MS

Loneliness is a major problem in MS; one that can literally shorten lives. Doing what you can to stay connected is as important as any medicine you could take.

It’s normal to grieve what you’re going through. Cosmo promised me my sexual peak was at 30, and the universe gave me MS 8 years earlier. It’s not fair, and freaking out is entirely justifiable. But grieve and get on with it. You don’t have to let sex become another casualty of this disease.

Stay sexy, Trippers.

Update: I just googled Cosmo, really to see if it still exists (I read VF now, because I’m an adult). Anyway, it does. And let’s just say, it’s way more…thorough? than I remember. There’s a whole section on interabled couples, with some very NSFW images. Go and be inspired. Nice job, Cosmo (things I thought I’d never say).

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The Pain And Anger Of Being Excluded For Having MS

I could list the ways I’ve been left out, treated differently, or whatever gentle words you wanna use to describe being dissed and discriminated against for having MS. 
 
There was the New York City girls trip that happened in secret, because I might have ‘slowed them down’. There were professional opportunities for which it was assumed I was ‘not well enough’. There was even the chance to be in a docu-drama and reality series that I was forced to forgo once my diagnosis had been disclosed.
 
But none of these indignities comes close to impacting me like the gut-punch that came with the first time I felt othered for having MS. 
 
When I was first diagnosed I worried about what would happen to my body, natch, but I never considered people would treat me differently. My obnoxiously confident younger self had no idea I’d just become that girl with MS, and was thus protected from feeling reduced by my disease, at least for a little while. 
 
The first year AD (after diagnosis), as I struggled to come to terms with my new reality, I found comfort in a network of support. I had good friends who rallied around me (the epic NYC diss still a few years away), my employer was accommodating; and sure, I had a break-up or ten with my on-again, off-again bf, but I didn’t think that had anything to do with MS, break-ups and drama being part of the deal when dating a bartender with a soul patch.
 
Fast forward a couple of years AD. By now I was rocking the whole invisible illness look. The shock of my dx having worn off, my employer stopped feeling sorry for me and started giving me the side-eye of doubt for taking so many sick days. Things were getting trickier for me at work, but my relationships were better than ever. 
 
In fact, my Justin and Selena situation with The Bartender was in an on-again cycle, and I was starting to think things were actually getting serious. Except for one thing. I was never invited to his house, where he still lived with his parents. For a long time I didn’t notice this slight. I mean, I wasn’t exactly interested in seeing this guy’s childhood Lego collection, and it made sense for us to hang at my apartment where there was unlimited vodka and no chaperones. 
 
Then came Easter.
 
I knew all about The Bartender’s complicated, symbol-heavy, Ukrainian Easter tradition. For weeks leading up to this particular year’s dinner, I’d been not so subtly gunning for an invitation to the main event, under the pretext that I’d wanted to see for myself just how strong you have to make homemade horseradish to invoke the passion of Christ. Of course, I was only pretending to care about Paska and whatever the hell Pysanka is. I needed to know Soul Patch was serious, and that meant meeting his damned parents. But every time I referenced the Resurrection, The Bartender found something else to talk about. 
 
By Good Friday my weekend was still wide open. I determined he just wasn’t into me, and we needed to break up. This time for good. I was pissed at his cowardly inability to just come out and say what seemed obvious. So, I confronted him. 
 
I fully expected to hear some excuse about how he wasn’t ready for a commitment and blah, blah, bullshit blah. But when I asked if my invitation had been lost in the mail, he was defensive and evasive. He didn’t want to break up, but I couldn’t come to dinner either. He refused to tell me why.
 
You already know what was happening here, but I didn’t. When I insisted he tell me what the eff was going on, he confessed that his father didn’t approve of our relationship. Uhm, what?
 
Growing up I was the kid other people’s parents wanted their kids to hang out with. A straight-A student, mature like a boss, I was a modern day, Catholic school, female Eddie Haskell.  
 
So, even when The Bartender said, “What’s the one thing you have that nobody else does?” I literally said, “RED HAIR?” 
 
I was that fucking clueless.

I made him say the words, not because I’d needed to hear them, but because I honestly didn’t know how someone who didn’t know me could possibly disapprove of me. It’s not you; it’s me your MS

Not exactly a WWJD attitude if I’m remembering my Sunday School correctly.
.

The Bartender didn’t want to tell me, because he was trying to protect me. And when he spelled it out with those two vile letters – MS –  I was devastated. 

In the months that followed, whenever I would tell this story, I’d feel wounded all over again by the number of people who sympathized with The Bartender’s dad, telling me he was just trying to protect his son. My hurt feelings turned to alarm when I realized this wasn’t an isolated attitude. So many people were comfortable telling me how scary it would be to contemplate a future with me – like I was expected to roll over and accept that I’d become a poison to be avoided at all costs. How could I go through life thinking of myself in this way?
 
I couldn’t. I wouldn’t.
 
I know I can’t convince someone else of my worth, but I sure as hell can convince myself. I dug in my heels and refused to believe I was any less of a prize than I’d always been. I refused to accept that because I had MS, I wasn’t just as entitled to my happily-ever-after as my mother had always lead me to believe.
 
In the end, we didn’t break up. The Bartender held his ground with his father, while his mother sent me secret notes, letting me know I had at least one silent ally. And then, the following year, like the Ukrainian kielbasa that symbolizes God’s favour for some reason (look it up), I was unexpectedly invited to the Easter table.
 
Halle-freaking-luia
 
Eventually, The Bartender became The Banker and by the time we were married, his dad had come around. We never talked about the stand-off; they’re not that kind of family, but The Banker’s father danced with me at our wedding, and welcomed me to the family. 
 
Unexpectedly, one year later, my father-in-law died. I’ll never know what changed his mind about me, but I’ll always be grateful for his blessing on his son’s choice of bride, and for his willingness to open his heart to me.
 
I know there will always be people who believe it’s acceptable for a father to try to prevent his son from being involved with someone with multiple sclerosis – even that it was the right thing to do. And that’s okay. I’m sure there are lots of people who don’t think they could handle having a partner with MS; a partner like me. That doesn’t make me less-than. 
 
It makes them not enough.  
 
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Sorry. Dating Me Doesn’t Make You A Good Person

Dating Me Doesn’t Make You A Good Person.

The morning after date night with The Banker, I woke up and sifted through my memories of the previous evening, stopping to ruminate on the worst one. As one does. In fact it was a good night; a great night even, and I’m pissed at myself for giving attention to the only negative part of it, but here we are. And you didn’t click this bait to hear about the charcuterie and the champagne, anyway. You’re here because you wanna hear about how some a-hole othered me

Thanks to MS, my walking looks ugly. I’m not in the habit of mean-girling myself, and I’m grateful to be walking at all, but if I’m being real, my walking isn’t cute. It’s bent and twisted, unsteady and insecure. It has more than once been referred to as Frankensteinian. Adding insult to injury, it happens in sloth-like slow-motion. Even when I’m rushing, I can’t help but move slowly. So impossibly slowly. Wherever I go, my stride draws stares of fascination and concern; stares that I swear I can physically feel. I know how uncomfortable it makes people to watch me walk, and yet, nobody seems to look away. 
 
In these moments, I, who am normally so self-possessed, so confident and cool, feel reduced; self-conscious and self-loathing of my un-co-operative body. My poor, wayward body, that’s just trying to do its job, and doesn’t need any extra attitude from me. I feel desperate to remove myself from these situations as quickly as possible, but quick just isn’t possible. And so I want to scream Don’t look at me! But instead, I smile weakly and I apologize.
 
For being in the way. For taking up space. For being inconvenient. 
 
Last night as we were leaving our favourite French bistro that is far too cramped to comfortably accommodate a rollator, I made my way through a maze of tables, dodging busy waiters, with a cane on my left and The Banker on my right, while muttering “excuse me”, and “I’m sorry” on repeat. I tried to tell myself I wasn’t making a scene; that it really is self-indulgent of me to think everyone in the room was absorbed in my struggle to get to the front door, when a diner two tables away, in a tone that could only be considered admiration, called out to The Banker “You’re a good man”. 
 
Oh, really?
 
Quick. Somebody get him a medal.
 
What’s the bfd? The Banker is a good man, maybe even the best man. But that rando doesn’t know that. And his comment stung. All he knows is that a man who looks like he almost certainly works at a bank, had dinner with a beautiful, if slightly busted, woman. This douchebag diner, who looked at me, but wouldn’t look me in the eye, was so impressed by our togetherness, he felt compelled to publicly compliment it. Well, part of it. The implication being that there is something extraordinary about someone like The Banker being with someone like me; the lucky girl this virtuous man took pity on. What in the fucking fuck. 
 
I know this is bullshit. I know it shouldn’t matter what other people think. I even know I’m over-reacting. Normally, this is the part where I say something wise and uplifting, or at the very least hopeful, but this time I got nothing. I guess I’m still getting used to my disease walking into a room before I do. 
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14 Valentine’s Day questions about true love and MS

Love it or hate it, it’s Valentine’s Day, and if you’ve got love in your life, this is the time to flaunt it in everyone’s face. Whether you love your kids, your cat, or your significant other, it’s nice to know there’s a date on the calendar where it’s socially acceptable to drink too much wine on a Wednesday and eat chocolate hearts for breakfast, lunch, and dinner.  

I myself am among the hashtag blessed who are lucky in love, having been happily married for like, ever. And my luck must be obvious, because it’s frequently pointed out to me. It’s a popular idea that women with diseases like multiple sclerosis are especially lucky should they happen to find their Prince Charming and trick him into marrying them. 

Yeah, I said lucky. As in accidentally getting something great; something random you don’t deserve, or haven’t earned. 

Lucky for me, it’s my partner who thinks he’s the lucky one. The Banker and I hooked-up pre-MS, in a life that was so long ago, I barely remember it. We tied the knot post-dx, and from the moment we announced our engagement, our relationship has been judged by some as extra-special. Of course, we smugly agree that our marriage is the bomb. We’re both proud of what we’ve built. But even after all these years, we still find ourselves explaining the whole marriage-with-MS thing, because some are still genuinely baffled that a grade-A guy like The Banker would willingly sign up for a life with, well, a utility-grade girl like me. 

Is it ever reasonable to wonder why someone would choose the sickness part of “in sickness and in health”, so soon into a relationship? Maybe. Do I have a flat pancake ass? Definitely. The point is, YOU DON’T NEED TO POINT IT OUT, OKAY? Rude. 

Literally fucking everyone knows that marriage is hard, and divorce rates are high, and blah, blah; I don’t wanna gross you out even more with the break-up stats when MS is involved – especially if the partner with MS is a woman. You think it was “brave” of someone to marry me? Well, what about me? I walked down the aisle knowing I’m statistically more likely to offer to help you move than I am to hang on to a man who will nurse me through the worst of what MS can do. This scene obviously isn’t for everyone, and that’s cool. 

I didn’t want to marry you anyway. 

My defensiveness aside, I do understand the doubters who, for their own good luck or utter lack of imagination, can’t envision this life for themselves, or even for someone else. I also know it’s easier to scoff at the ignorance of how uncomplicated our marriage actually is  because, at least for now, we are still true partners. The impact this disease has had on our relationship has been manageable. I know that could change some day, but we’re not there yet. And I’ve been trying really hard to stay grounded in the present lately. 
So today, on this most sacred and holy day, I’m here to tell you that marriage and MS can coexist. Because The Banker and I are nailing it. And you don’t have to take my word for it: I decided to interview my husband so you could see exactly what kind of person does co-sign for MS.

of course I have an adorable nickname


Thank you for coming.
This is our living room. I live here.  

Let’s get right to it. We’ve been married for like, 13 years. What’s the hardest thing about being married?
I don’t ask for help, and with marriage sometimes you need to be the one leaned on, but sometimes you need to do the leaning. I don’t always like to do the leaning. 

Are you saying MS isn’t the hardest thing?

No. It’s not. 


Wow. I would have definitely said MS, followed closely by indoor temperature negotiations, but you usually let me keep the heat jacked. 
Well, I am the more considerate one.

That’s true. Is that why you married someone with MS? Because you’re a hero?
Uhm, no. It didn’t matter that you had MS. I married you because you are you.

Okay, but, I know it’s not always easy. What’s the hardest part about loving someone with a disease like MS?
Watching you struggle when I can’t do anything. There are times when I can’t help; like, I can’t make your legs move for you, and I feel helpless.

What’s the biggest thing you’ve lost or had to sacrifice because of MS?
I don’t think I’ve lost big things. It’s smaller things, like holding hands while walking. When I’m pushing you in Optimus, it’s harder to have a conversation.

You don’t think it’s romantic to yell into the back of my head “WHAT? I can’t hear you”?

What would you say to people who believe you got a raw deal?
You do so much to help me experience life. When you’re in a marriage you do stuff for each other. I don’t see it as stepping up. We work to our strengths. I’m doing what I can to support my wife, but you do so much more for me.

I am pretty great. Let’s explore that. What’s your favourite thing about me?
It’s tough. There are so many things that I like; I can’t narrow it down to the best thing.

Yeah, but try harder.
It’s easy to point out your physical attributes, your mind, and your personality. That stuff’s easy; but like, you make me a better person, and you make me enjoy life.

If you could take on one of my symptoms for me, which one would it be? 
I think I would take on all of your symptoms, in a way to shoulder it; so like, if we could split them almost. So it’s not as big a burden for you.

What, like 50/50?
(Long pause) Uh…60/40?

60/40. You really are a hero.
It would be difficult for both of us to be fucked; so fine, I would probably take on the fatigue just to let you do more stuff. I think I can fight through a lot of tiredness; I don’t get a lot of sleep during the week anyway.


Oh NO he didn’t.


So, you’re saying you could handle MS fatigue better than me? 

(We explored this for the next 27 minutes.)

What do you think is the biggest misconception people have about MS?
Apparently, it’s fatigue.
What do you think is the most important quality someone with MS needs to have?
Empathy.

Empathy?
MS is always gonna be worse than whatever the healthy person is going through. 

Are you saying I lack empathy for your man-cold and dislike of needles? 
This feels like a trap.

Before we wrap this up, let’s find out a little more about you. Did you always know you wanted to be a banker?
No. You know I’m not actually a banker, right? I don’t even work at a bank. 

What’s your favourite thing to do without me?
Eat gluten and sugar. 

Do you agree that drinking every day is a good idea?
Wtf does that have to do with MS?

Nothing, I was just hoping you would make me a drink.

Who would play you in the movie of our life?
James Franco?

Ew. The correct answer is Benedict Cumberbatch. 

Final question. How much money is too much money to spend on Valentine’s?

Valentine’s is a made-up, commercial holiday.


Yeah, that’s why it’s so awesome. You get the presents of Christmas and the candy of Easter without having to go to church.

Happy Valentine’s Day, Trippers. I love you all.


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