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Why I Really Hate The C-Word: Caregiver

that will be $100, please

Why I hate the C-word: Caregiver

Last week The Banker and I were enjoying Martini Monday, catching each other up on our respective work days when he casually recounted a conversation he’d had with one of his banking bros in which he referred to himself as my caregiver, and let’s just say it’s a good thing I had a bit of a buzz on.

While you were at work I refilled the Brita and made ordered your dinner. Who’s caring for who, mother-fucker?

Until last week, the C-word is not a word I had ever heard The Banker say. At least not as it pertains to me. And I was not impressed. Not impressed at all.

You know when someone casually starts using a word you’re sure they’ve never used before? Like, in 20 years you’ve never heard them say hegemony. Or, propitious. Suddenly they’re using it all the time. Nice try, poseur, you’re not even saying it right. What kind of chat room taught you this fancy foreign vocab?

The Banker and I have a list of ‘Things You Can’t Say’ in our home. Okay, it’s more like I have a list of things he can’t say. It includes intrusive questions like, “How did you sleep?” (I didn’t), “What time do you want to get up?” (I do not get up at “times”), and “Do you want me to add Miss Vickies to the grocery list?” (don’t make me say it, the answer is always yes). We haven’t had the don’t say the C-word convo because until last week, I didn’t think we needed to.

I hate the word caregiver.

Before I tell you why I hate the C-word (and apologies to C-word seekers who were driven here by the SEO looking for something completely different), let’s just clear up exactly what a ‘caregiver’ is. While urbandictionary is my go-to resource for unsavory word definitions, none of their interpretations are appropriate for even this mouthy blog (tho they do have a spicy perspective on the caregiving role). Merriam-Webster, however, defines a caregiver as, “a person who provides direct care (as for children, elderly people, or the chronically ill).” Merriam-Webster goes on to explain that, “the care of a patient with Alzheimer’s Disease or a related disorder can be a physical, emotional and financial drain on the family caregiver.

And here’s the first hint at why I hate the C-word. According to shitty Merriam-Webster, being a burden is baked into the very definition of ‘caregiver’.

With the right lawyer, The Banker might actually be able to claim the moniker ‘caregiver’. I do have a chronic illness, and I guess ‘direct care’ could include things like helping me into this Shrek boot at bedtime.

Pro tip: if you’re worried about foot inversion and/or sores on your heels, this boner-killing bedroom attire by Posey is 5 stars.

But caring exists on a spectrum, especially when it comes to a disease as variable as MS. The Banker does all the dishes, every dog-walk, and all the driving. I don’t want to diminish how much he cares for me, but is this enough caring for him to qualify as a capital C Caregiver? Because, when it comes to managing my MS, it takes a village of medical professionals and social supports; and while I appreciate that TB puts the rollator in the trunk of the car 100% of the time, I feed and dress myself, I manage my appointments, and make all my own medical decisions. I make all my own every decisions. Yes, he does a lot for me, but it’s worth reminding myself that:

the person who is responsible for the overwhelming majority of my MS care is me.

President and CEO

Am I being extra? Sure. You know my brand. But words matter, and the language we use impacts how we feel. Maybe I’m reactive to the C-word because most of the time I’m trying hard not to feel like the B-word, burden. (And if you need a reminder on the MS F-word, click here.)

Yeah, but isn’t a rose by any other name still a caregiver?  

I don’t introduce The Banker as my lover, because it’s not the 70s and ‘lover’ is a gross word. More than that, our sex-life is part of our relationship but it isn’t what defines it. Even the term ‘husband’ has evolved since the 1950’s. The Banker is my partner, even if I need him to get the chips off the high shelf and fold all my sweaters. How can we feel like equals if we label ourselves by anything else? Using the word ‘caregiver’ would define our relationship by MS, and make MS the Most Important Thing. I feel best about the role MS plays in our marriage when I think of us handling it as we would any crisis: as a team.

And anyway, using the C-word is bad for both of us. There’s a helplessness, and a parent/child dynamic that’s associated with this term. It creates an unsexy vibe (unless you’re into that, in which case, I refer you back to urbandictionary). What’s more, ‘caregivers’ can become overwhelmed with an exaggerated sense of responsibility. Yes, life is easier when The Banker mixes my martinis or preps my two-a-day hot water bottle habit, but I like to remind him of the Trippers I know who have more advanced MS than me, and are nonetheless living and thriving without the benefit of an unpaid caregiver. I stress this because I need TB to know—I need us both to know—that I am here in this relationship because I choose to be, not because I have to be.

It’s true, I wear a lot of blankets (pretty sure this pic is from July). I may look like a shivering consumptive half the time, but I’m not as delicate as I seem.

So, is there ever a time when you can use the C-word? 

Before I finished my cocktail, The Banker backed up his claim to martyrdom by giving me the full context of his foul language. He had been trying to communicate his limited risk-tolerance for Covid exposure, explaining that he is the “caregiver of someone who is high-risk.” My lawyer would argue that he could have just said, “My wife is high-risk.” After all, parents, partners, and friends are already relationships that include an element of caring, of keeping safe. But I decided to let it slide. It was his first offense and it’s worth considering that, ‘caregiver’ and ‘high-risk’ are words we’ve commonly heard in the same breath over the past couple of years. Plus, he didn’t object. He understood how the word sounded in my ear and that my lawyer is a better lawyer than his lawyer.

It’s me. My lawyer is me.

Rejecting the label of caregiver doesn’t mean a rejection of care. My beef is with feeling diminished by how the term puts the balance of caring squarely on one side of the relationship; dismissing whatever care I provide, making me sound like a dependent. I concede that there may come a tipping point when, someday, I need considerably more care. But using the term ‘caregiver’ before we’re even close to that point feels like a rush toward a dynamic neither of us wants. 

So, if I can’t say the C-word, wtf can I say?

The people in our lives who love and care for us don’t always seek or know where to find their own support. In this case, the term caregiver can be helpful in identifying resources and connections with others who can relate. And, if using the term caregiver will net you a sweet tax break, then sure. Cut me in on the deal, just do it when I’m not around, so I don’t have to hear you say the C-word out loud.

And obviously, you do you. If the caregiver label helps you feel cared for, or if someone in your life needs the acknowledgement or recognition the word confers and you’re cool with that, you don’t need to listen to me. These are the details that get negotiated in relationships and it’s none of my beeswax how you define yours.

This rant is for anyone who feels icky about the idea of their spouse as a caregiver, but maybe isn’t sure why, or how to articulate their discomfort. This rant is the half-truth I need to tell myself so that I can still feel like me, when year after year I need more and more care. This rant is the reminder that I’m still in the game. I need you on my team. But, I’m still the captain.

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Medical Assistance In Dying And MS

*If you need support, call the National Suicide Prevention Lifeline at 800-273-8255, or text ‘start’ to the Crisis Text Line at 741741

When MS Makes You Consider Medical Assistance In Dying (MAID)

When I was first diagnosed, I wondered if there would ever come a time when MS would make me not want to live. It’s generally discouraged to speak openly about our darkest and most desperate contemplations, but entertaining worst-case scenarios feels like a pretty natural–maybe even reasonable–thing to do when you find out you’re gonna be sick for the rest of your life.

MS is marketed as a manageable condition. We now have more than 20 disease modifying therapies that promise to make MS boring. And let the choir sing, because these drugs are game-changers for many. But not for all. We can’t ignore the reality that for some people, MS can be so severely disabling that life with MS becomes unbearable. 

One of the biggest surprises of my life is how much more MS I can handle than I once thought I could. Despite my ongoing discovery that a difficult life doesn’t have to be a joyless one, when new symptoms appear I still find myself dipping my mostly-numb toe into the water of  ‘what will my threshold with this disease be’. 

MS is a bfd, and by the power invested in me by God and the internet, I grant you permission to freak out about it from time to time. 

That said, I don’t want you to live there. The occasional existential meltdown is not the same as living with the profound feeling that you can’t go on. I want to acknowledge what those of us with MS are up against and to consider what we can do to protect ourselves from the worst of what MS portends. I also want to acknowledge that for some, death with dignity can be a rational choice.

Who is at risk? 

Suicide risk in the MS population is twice that of the general public. There’s a difference between a quality of life that has been so diminished by severe progressive disease that life becomes intolerable and a suicidality that may be influenced by transient or modifiable factors. When 50% of people with MS will experience a major depression–a massive risk factor for suicide–I feel like it’s up to us–the people living with the disease—to tease apart the difference.

What happens when MS isn’t manageable?

When Canada introduced Medical Assistance In Dying (MAID, 2021) for serious incurable “disease, illness, or disability”, I felt relieved that MS was on the list of qualifying conditions. In my own end-of-life fantasies, a last-ditch trip to Switzerland seemed like the only option for a dignified self-determined death. While dying with jet lag seemed particularly cruel and unusual, death by drug-laced chocolate made the effort seem worthwhile. 

This is how they do it, right?

While my mostly apathetic, half-assed contemplations of an imaginary future I won’t be able to handle feel largely theoretical, the existence of MAID is like a security blanket; a hall pass to a good death, reassurance that I have options if worse should come to worst. 

But MAID got a lot more real for me when fellow Tripper and Internet friend Jenny Angus reached out, first to offer me a device that had stopped being helpful for her, and then to tell me she’d applied for access to Canada’s medical assistance in dying program. 

Note: giving your shit away is a red flag that you might be thinking of checking out.

I don’t trust this bitch

The Canadian government has granted Jenny the right to die. When I asked Jenny how it felt to have someone in authority agree that the suffering her MS is causing is unendurable, she expressed relief. In a body she can’t control, access to MAID has given Jenny the ultimate autonomy.

Globally speaking, medical assistance in dying is not widely available for most people with MS. When it is an option, it’s as a last resort and the gatekeepers of access have an obligation to ensure that everything has been done to manage symptoms and optimize quality of life so that no one’s life ends prematurely.

Making life better 

Jenny is a self-described tough bitch, but her MS symptoms rule her day and have stripped her of her sense of purpose. A former athlete and artist, Jenny no longer has the hand and arm strength to paint. But has Canada, society, the world, done enough to support Jenny’s quality of life? When Jenny vented her frustration at the lack of accessible spaces, the staggering cost of MS, the stigma of disability, and the overwhelming shittiness of homecare, I asked what it would mean to her if the dismissive neurologist who mis-diagnosed her, leaving her untreated for a critical ten years, were to apologize for what his oversight cost her.  

One of Jenny’s paintings from a past life. As a former singer, I relate to how gutting it is when MS strips you of what feels fundamental to your identity.

I can accept that science still needs time to figure out how to reverse nerve damage and cure MS; but in a world where suicide is considered the pinnacle of irrationality while disability is considered a fate worse than death, it’s not enough to say that all life is precious, please don’t die. We don’t do nearly enough to make the lives of the disabled more liveable. We have let the Jennys of the world down.

So how the eff do you survive when MS seems unsurvivable?

The leading risk factors for people with MS in pursuit of an early death include level of disability, depression, and social isolation. If you wanna live that Betty White life, there are some things you can do to invest in your longevity.

Seek early and highly effective treatment

Degree of disability is a predictor of suicidality in MS. The best way to mitigate and minimize disability is with disease modifying therapies (DMTs). The earlier the better. If you’re like me, and your MS pre-dates the most effective treatments, DMTs might not be able to undo existing damage, but there’s growing evidence they can stave off new damage. 

Build your social capital

Loneliness shortens lives. Find your tribe. 

Get depression treated

If you have MS, depression should be on your radar. Don’t suffer. Get help.

Manage your independence

Ask your doctor or MS clinic for a consult with an Occupational Therapist (OT), and figure out the hacks that will help you maintain independence. And then, for the love of Miss Vickies, learn to say ‘fuck off’ to the stigma around being helped. We all need help. Reject the misguided idea that independence is a virtue. 

Get your shit together

I was shocked to learn that bowel dysfunction is a research-proven predictor of suicidality. Then I thought about how all-consuming my own bowel issues can be. I have definitely felt tempted to roll the dice on colon cancer screening just to avoid the nightmare of prepping for a colonoscopy with a neurogenic bowel. However, like depression, a neurogenic bowel is treatable. It can take a lot of work and more than one doctor to get this under control. Don’t give up.

Okay, I get it. My to-do list just got longer. Thanks. But, WTF happened to Jenny???

Being approved for medically assisted dying doesn’t mean you are obligated to follow-through. The Grim Reaper doesn’t show up at your door once you’ve been cleared. Unlike your cell-phone contract, MAID doesn’t own you. In fact, Jenny has 10 years to decide if or when she wants to use it.

Before Jenny could work out the ending to her story, there was a third-act plot twist. I’m happy to report that Jenny isn’t out of the game yet. With the love and support of her friends, she suddenly had an opportunity to have a hematopoietic stem cell transplantation (HSCT) in Mexico. 

Meet Jenny. HSCT requires chemo which means hair loss. This Rapunzel donated her luscious locks last week.

HSCT is highly effective, especially in early and active MS, and if you have MS you should know about it. HSCT is risky, has serious side-effects, can be expensive, and has limited availability; but when it works, it really fucking works. Do your homework and consult trustworthy resources

After more than 20 years with MS and no new MRI activity since 2017, Jenny knows she’s not the ideal HSCT candidate, and calls this her Hail Mary. She’s done her research and understands that the procedure may not halt her smouldering MS, that chemotherapy may worsen neurological function, but Jenny feels like HSCT is her best shot at exorcising what she calls her MS poltergeist. 

Jenny spent much of last year pursuing medical assistance in dying. Now she’s putting all her resources into a chance at a better life. On February 17th Jenny received her stem cell transplant and celebrated what she and other transplant recipients consider her “second birthday”. There was even a cake.

Jenny’s finding a new sense of purpose in speaking her truth and being a voice for others with MS. She’s thoroughly documenting her HSCT journey on a new blog, because she knows the intel can be hard to come by. 

I want to thank Jenny for trusting me to share her story and for being so candid about her experience with MAID. Kathy Reagan Young was the first to break Jenny’s story on the FUMS podcast which I highly recommend. Kathy is a leader in this space and a champion for others with MS. Plus, her generous use of the F-word almost rivals my own. Almost.

You can follow Jenny’s ongoing journey here. And listen to her speak with Kathy on the FUMS podcast here.

Jenny, we are all rooting for you.

Look after yourselves, Trippers. MS is hard.

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Gifts For People With MS: 2021 Ultimate Gift Guide

It’s that time of year when the answer to, “I wish there was something I could do,” is “Great! Here’s a list.” You can’t cure MS, but you can improve symptoms with these thoughtful gifts that are perfect for people with MS.

like Oprah, but with brain damage

As an eggnog half-full kinda girl, instead of thinking of MS symptoms as problems—just for the holidays—I will approach these challenges as shopportunities. A chance to say, ‘Hey, Santa, MS Sucks. What are you gonna do about it?”

2021 Holiday Gifts For People With MS

Shopportunity: heat sensitivity, fatigue, upper body weakness

Six days out of seven, my hair is gross because washing it when you have MS is a whole thing. You guys know. While gift certificates for salon blow-drys will always be a winner with me, it’s not realistic to get all my grooming on the outside; a fact that hit especially hard in Toronto where we lived through North America’s longest lockdown.

MS gift: a low-heat, lightweight, hair-dryer brush

This 2-in-1 hair dryer brush by Conair is a freaking dream. It weighs less than my conscience after eating all the Miss Vickie’s, and you can brush as you dry, so you only have to worry about dropping one tool on the ground instead of two.

A hair-dryer brush is one the energy-saving gifts perfect for people with MS
Pro tip: I keep my regular hair dryer for blow drying my body. IYKYK.

Shopportunity: difficulty with concentration, and/or problem-solving

MS can mess with cognition. Last year I had some testing that helped explain why I suck at listening to you when there’s competing background noise, and why I’ve spent half an hour trying (and failing) to think of a clever second example of how my brain sometimes fails me.

Gifts for people with MS: physiotherapy for your mind

I always thought video games were for virgins and burnouts—and they are—but research shows that gaming can actually create structural changes in the brain. Video games can improve memory, hand-eye coordination, decision making skills, attention, focus, and reaction time.

The gains aren’t limited to  so-called brain-training games either. Whether you want to be a pill-popping, cherry-obsessed, grinning  yellow circle or an old-timey family on a life-threatening vacation to Oregon, the brain-boosting benefits of gaming can be yours.

Video games make great gifts for people with MS who are concerned about cognitive function
Clearly I know nothing about video games, but this one comes in pink.

Shopportunity: problems with word-finding, verbal fluency, memory

I love languages (in fact, I’m thrilled to share that all of TOA will soon be available en français). If I’m tripping on words, I can always explain it by saying “Sorry, I was trying to think of the English word”. I’m not cognitively impaired, I’m fancy.

MS gift: polyglot superpowers

Research shows that “polyglots have more grey matter and better white matter retention”. I don’t know what that means, but I want it. One of the online language-learning programs que j’adore is Frantastique. The first month is free and make sure you opt into the spicy mode because they don’t teach you how to swear on Rosetta Stone. Merde.

I’m not French, I’m just pissy.

Shopportunity: MS fatigue

After two years of Covid-induced Facetime-only visits, I finally saw my niece and nephew IRL. We spent a gorgeous day at the zoo, which meant I spent half the time slow-walking and the rest of the time getting pushed around in Optimus Prime, my convertible rollator/transport chair. My 5 year-old niece, who was being pushed around in her own wagon and totally gets the concept of ‘my legs are tired, please push me now’, didn’t seem to notice or give a fuck.

Sidney gets it.

My nephew, though, who’s 7, had a few Qs. It was the first time he’d seen me using a transport chair. Apparently, he thought I was just old. Like, really old. And now, he gets nothing for Christmas.

Just kidding, Conor. Auntie Ardy would never play you like that.

Gifts for people with MS: an explanation for kids

If you’ve got questioning kids, this book by Julie Stamm does a beautiful job of making sense of MS on a level kids can understand, while at the same time normalizing the experience. Adults might learn a thing or two about invisible illness, too.

Children's books like Some Days by Julie Stamm make great gifts for people with MS .

Shopportunity: wonky balance, weakness, foot-drop

I’d been holding off on getting a claw attachment to make my cane (which I use indoors) safer, on the grounds that they are ugly.

MS gift: better support and a more natural stride

Click here for a refresher on sick-person presents. As much as I love a bomb mobility aid, you’d better be sure a cane is something your Tripper wants and needs before you try to pawn it off as a gift. That said, this stick could be a game-changer if it’s the right fit for your loved one.

The “3rd foot” Aligned As Designed cane is designed to move like a foot, and I am more stable with this stick. The Banker likes it too; because when I knock it over—as one does—the rubber handle and foot mean the crash isn’t nearly as loud as my previous cane. 

To offset international shipping, Canadians get $10 off with code: CANADA.

Aligned as Designed canes make thoughtful gifts for people with MS.

Shopportunity: stigma

It can take a minute to get used to seeing yourself with a mobility aid. For many, the transition can be an unwelcome identity crisis. In some cases we may even feel we’re letting our loved ones down.

Gifts for people with MS: custom coolness

How can you help? Tell your Tripper you’re proud of them for doing what they need to, to keep up and keep going. That’s free. To level up your support, consider a custom animation from disabled artist, @beautyfromchaos. If a picture is worth a thousand words, an artistic image that includes a mobility aid, elevates, celebrates, and tells us we belong.

Custom animations of mobility aid users make for positive and supportive gifts for people with MS and other chronic illnesses.
tag your custom animations @ms_trippingonair and I will share them in my stories!

Shopportunity: anxiety and depression

I love journaling. Journaling is a form of meditation. Except better, because meditation is boring, and journaling is like gossip. Research shows that keeping a diary can improve symptoms of depression and anxiety and give voice to difficult emotions. Diaries can remind us of what we’ve already survived and give us confidence to keep going the next time life gets tough.

MS gift: a place to put your secrets

I like to barf out my feelings in the most beautiful books I can find. Stickers make pages more interesting, while also making it easier to identify days you might want to come back to. And I am obsessed with finding the right pen.

Baron fig makes bougie pens.

If you’re new to journaling and aren’t sure where to start, there are some brilliant guided journals on the market. Check out The Human Being Journal which borrows principles from mindfulness and CBT.

Shopportunity: loneliness, stress, anxiety, depression

When people ask me what advice I’d give someone newly diagnosed with MS, the first thing I say is to find your tribe. MS is complicated; it’s scary, and it can be lonely. I cannot underestimate the importance of connecting with someone else who gets it; someone of a similar age and life-stage, who is facing the same challenges.

Gifts for people with MS: a little eSupport

eSupport facilitates MS connections and takes things one step further by offering intimate online groups for people with MS. Sessions are guided by licensed therapists who are experts in MS. 

If you want to get a feel for what these sessions are all about before you add eSupport to your list for Santa, you can register here for a free open house on December 7th at noon Eastern or December 14th at noon Eastern. 

  • December 7th, 12 noon EST
  • December 14th, 12 noon EST

Shopportunity: dexterity issues, hand/arm weakness

I love eyeliner but I’m usually rocking a smudgy eye because I slept in my makeup my eyesight sucks, and I don’t have a tonne of strength in my right arm.

MS gifts: makeup tools you can hang onto

If your hands shake or you drop shit, or even if you don’t, Guidebeauty and Kohl, have makeup tools that are universally designed with everyone in mind.

Universally designed makeup tools by Guidebeauty are some of the best gifts for people with MS.
Clean, cruelty-free, vegan, universal. This tool guides your hand to perfectly-lined lids.
Kohl Flex makeup brushes make great gifts for people with MS.
The Kohl Flex Collection brushes stand up their own, are flexible, and easy to grip.

I love these brands because they recognize that people with disabilities care about the important things in life like a precision cat eye. Cat eyes for everyone!

Shopportunity: curling toes and swollen feet

MS makes my toes curl and not in the sexy way.

Gifts for people with MS: Compression Toe Sox™

I don’t know why Toe Sox™ keep my toes from curling, they just do. My toes need so much alone time that Toe Sox™ are now the only socks I wear. (Unless you count the bed socks I wear over the Toe Sox™, because Toe Sox™ don’t do anything to keep my feet warm.) Toe Sox™ have been on my list before, and they deserve to be here again because I recently discovered that you can also get compression Toe Sox™. Now, I know compression socks sound medical af, but I have some in fuschia; and as far as compression socks go, these ones suck the least.

Shopportunity: Dysesthesia

Most of my MS pain lives in my feet which are somehow cold and burning at the same time. My dogs are often purple-ish red and their hobbies include cramping and spasming to unholy, Exorcist angles.

MS gift: Heated foot massager

When the pandemic canceled massages, I splurged on this heated foot massager and now it’s part of my nightly routine.

Heated foot warmers are cozy gifts for people with MS.

Shopportunity: insomnia

My favourite way to console myself when I’m wide awake in the middle of the night is to reach for my phone and order a sweater, or a new pair of shoes. This is not a sustainable habit considering how much MS messes with my sleep.

Gifts for people with MS: wearable book light

This book light is my second favourite  insomnia coping device. It lets me read without waking The Banker and it even has a warm light setting. It doubles as a flashlight that I don’t have to carry when I walk to the bathroom in the middle of the night. 

Shopportunity: drop foot

Winter can be complicated when you have MS, and finding the right boot is a whole thing. Icy, uncleared sidewalks are tough to navigate if you’ve got drop foot or balance problems. Weakness means boots can’t be too heavy; difficulty with dexterity can make laces a challenge; and if you use an AFO; well, you might decide to just stay inside and sit the winter out.

MS gift: happy feet

Ugg has got your back. The Lakesider Zip Puff boots are so cute they feel designed for style and not necessity. They are lightweight, warm, and they zip open on the top, so you can just drop your drop-foot right in. Swoon.

Lightweight, universally designed Ugg boots are one of the best gifts for people who have MS and love fashion,
These aren’t Dictus™ friendly, but I sized-up and can wear them with my carbon-fibre AFO.

Shopportunity: MS progression

I don’t have to tell you why MS progression sucks. If you’ve got it, you already know.

Gifts for people with MS: PoNS therapy

Okay, so this is a bit of a baller gift. Maybe a group gift, and your friends have last names like Gates, or Pope (first name “The”). PoNS is technology that when combined with physiotherapy may improve walking in some people with MS. It’s helping me, and if I really was Oprah, I’d make sure everyone that needs one, gets one. You can read my review here.

Still stuck? Check out my past guides from 2018, 2019, 2020 for more gifts for people with MS.

Happy Holidays, Trippers! I hope Santa is good to you.

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PoNS review: good & bad news for a new MS treatment

When’s the last time you heard some truly good news about MS progression?

PoNS review: the good and the gutting news about a new treatment for MS progression

My trial with a new treatment for progressive MS using the PoNS device ended a few weeks ago. I’ve been late writing this review because a) I was busy filming a new tv show, and b) I’ve been waiting for some answers from Helius, the makers of the device. Okay, the delay is mostly because I’ve been waiting to hear from Helius, but get used to me casually mentioning that I have a new show coming that features the bad-assery of the disability community because omg you guys, I have a show.

But first, my PoNS review. 

It’s been a minute, so I’ll remind you that PoNS is a portable neuro-stimulation device that sits on your tongue and tries to rewire your brain when MS has messed with your neural pathways. The hope is that with the magic of neuroplasticity you can retrain your brain to walk and balance better. For more deets check my original post.

And now the PoNS review you’ve been waiting for: a diary of my 99 days in the research study and a sneak peek, anecdotal, unauthorized spoiler of my results before the science–which you should definitely read–gets published.

A woman with MS using the PoNS device and walking with a mobility aid.
Pro tip: Make sure your outfit matches your device.

Day 1

My PoNS journey is being managed by Toronto’s Venn Med Clinic. It’s my first day and I’m feeling hopeful despite myself. I hit “publish” on a blog about the trial before heading out. Helius sees my post right away. (Is PoNS a cult? Am I being watched?) I know this because as soon as I arrive at the clinic I meet Christie, who will be coaching me throughout this journey, and learn that Helius has sent an SOS instructing her to tell me that what I’d said in my blog was wrong. I do not, in fact, get to keep the PoNS device once the study has ended.

Christie: PoNS boss and bearer of bad news.

The rest of my care team includes Maria, a student, and Dr. Demien, who graciously lets everyone call him Daniel, and patiently answers my 1000 Qs, most of which are some version of “Is this really gonna help?”

For the next two weeks, I’ll spend every afternoon at the clinic, doing targeted rehab, after which appointments will drop to weekly and I’ll be required to do an hour of physio a day, on my own, for 12 weeks. This feels like a lot. Sort of. Because, how much can really change in three and a half months? 99 days is basically the lifespan of my mascara (note to self: replace your mascara), and the goal of this trial is to undo two decades of brain damage. And now it’s 98 days because we don’t actually use the device on day one. Day one is all about paperwork and intake evaluations. 

The stats: my 25-foot timed walk takes 14 seconds with my rollator, and 24 seconds with a cane. 

The diagnosis: slow af, but still walking.

Day 2

My first day using the PoNS. The mouthpiece is made of nickel and gold (fancy) and I’m asked if I’m allergic. This feels like a Q that should have been asked weeks ago, since anaphylaxis is kind of a dealbreaker. Fortunately, I’m only allergic to nuts, which I don’t feel too sad about, because nuts might improve heart health but they can’t do anything for my legs. 

The mouthpiece is attached to a hard plastic device that sits around the neck. Rehab sessions are divided into 20 minute intervals which are counted down on a display screen that I can’t see because I don’t have eyes in the back of my head. I recognize that part of the reason PoNS is big bucks is because we’re paying for research and development; so I make another mental note to tell Helius to throw a little more R into the D, as the hard to reach on/off buttons might be tricky for anyone with dexterity issues.

The PoNS device.

When I ask more questions about the mouthpiece, Christie casually mentions that it has to be replaced every three months to the tune of $500. Apparently Health Canada requires electrical devices that go in the mouth to have an expiry date. I probe some more. My electric toothbrush recommends I replace its mouthpiece every three months too, but I’ve been known to test these limits. Couldn’t I do the same with the PoNS? 

No. The answer is no. Whether you use your mouthpiece for ten hours or two thousand, after 99 days, it’s programmed to die.

The PoNS device and its display screen indicating the PoNS mouthpiece will soon expire.
Guys, I don’t know how, but this thing knows what day it is.

I turn on the mouthpiece and it feels vaguely like champagne bubbles on my tongue. I briefly wonder if I could just hack this process with real champagne, since that would be cheaper.

to your health

I’m still getting to know my PoNS (well, my loaner), and I ask if the battery life is similar to the suckitude of my iPhone. Christie throws me another btdubs–the device (the thing that sits around your neck that the mouthpiece plugs into)–has to be replaced every 3 years, when it Inspector Gadget-style self-destructs.

FML. Can PoNS get any more expensive? (Spoiler: It can.)

I try to put my crustiness about the cost aside. I’m introduced to electrically stimulated acupuncture, which proves to be an effective distraction. Electroacupuncture is like regular acupuncture but painful. Ish. It’s more uncomfortable than awful, and anyway, I don’t complain because I’m willing to do whatever it takes to make this shit work. (This shit: my walking.)

Sorry legs, that was mean. I know you’re trying and don’t need any crap from me.

The acupuncture requires access to much of the right side of my exposed body which introduces a new layer of discomfort. I make yet another mental note not to wear period underwear tomorrow. 

Sidebar: electroacupuncture is kind of a bonus of treatment at Venn Med. (I mean, it doesn’t sound like a bonus, because, ouch, but I actually think it helps.) You may not receive electroacupuncture as part of your PoNS therapy. Then again, you could seek treatment with electroacupuncture independent of PoNS therapy, but that’s a post for another day.

Day 3

I wear a shirt dress that barely covers my bum because it feels like the easiest way to provide lower body acupuncture access. It’s not like Venn Med is giving out paper gowns. The room gets the full show and in hindsight, I should have worn shorts but I don’t own any. I have no bum and I’m always bloated. I don’t do shorts. 

Christie tells me she sees encouraging signs, but I don’t know. I’ve been to rehab before. I feel like cheerleading is what these guys are trained to do. 

Later that night, I start to say, “I knew I would be tired, but I didn’t think I would be this tired”, as I full-on fall to the ground. The Banker offers to help me up, but I ask him to just let me lay there for a while.

Day 4

I have more electro-stabupressure and do exercises I can only describe as Tummy Time. Relearning to walk can feel infantilizing.

Unlike past experiences with physio, the majority of the work we’re doing is extremely localized. I practice balance exercises, but the bulk of my rehab is hyper-focused on the areas that are the most impacted. We work the right leg almost exclusively.

Day 5

I’m asked to crawl on all fours, on a table, in my denim mini skirt. (Technically, nobody asked for the denim mini.) When Christie wonders if she can film me, I say no, and she doesn’t seem surprised, confirming how obscene I look. 

It’s only my fourth day using PoNS, but we do some tests to look for improvements and there aren’t any that feel meaningful. I’ve spent hours on a table just trying to bring my knee up towards my chest. It’s hard to get excited about the possibility that my lazy right foot is (maybe?) everting a few degrees more.

I feel disappointed and anxious, like, something should have improved by now. Otherwise why else are they testing?

Day 6

It’s Saturday–my first day off—and I wake up in a mood. My PoNS device is spending the weekend at the clinic and I don’t miss it. I have a headache. I’m exhausted. It’s a beautiful sunny day, but I’m too wrecked to leave my apartment. I spend the day contemplating how hard it is to have a disease that pretty much promises to get worse. I blame hope for setting me up like this. And yet, I know I still have to keep trying.

Day 7

2:52 a.m. I wake up in the middle of the night (as one does) and pull my knee towards my chest without thinking. It feels easy. I decide to try it again, telling myself that if I can do it one more time I will no longer want to die.

While The Banker sleeps next to me I do it 9 more times.

Suddenly, I’m a believer.

Day 8

At the clinic I can only manage a few partial knee bends with Christie, which is more than I could do last week but it feels crushing after what I did after dark. I start to wonder if I only dreamt those nocturnal knee bends.

Later, I will realize that re-learning to walk isn’t like the movies. It isn’t linear.

This is hard. Mentally, physically, emotionally.

Day 10

It’s the last day of the phase of my PoNS trial that involves daily afternoons of physio. I wake up singing ‘I don’t wanna go to rehab’, but without the singing. I can only do one knee bend in bed and wonder if I would have had this much ‘improvement’ if I’d done two weeks of rehab at this intensity without the PoNS device.

But then I do 10 knee bends in the clinic. Fast. I have witnesses to keep my brain from gaslighting itself. There’s cheering. Maria says she feels like a proud mom, even tho she’s young enough that she’s never seen When Harry Met Sally. Neither she nor Christie have even heard of Nora Ephron and it’s a good thing I didn’t know this before I put my trust in them. 

It’s a massive win and the motivation I need to keep going.

Day 12

I sleep for 10 hours and still need an afternoon nap. Is all this neuroplasticity making me sleepier? It feels weird to be congratulated for sleeping 10 hours, but I don’t know. Sometimes Fitbit just gets me.

I sure did.

Day 14

I wake up motivated and do 40 minutes of training before I have my coffee. I reward myself with a biscotti and an Americano and quickly learn that my taste buds need time to recover. PoNS kind of numbs them, and it takes a beat to be able to taste again.

Day 19

I show up to physio in vintage 1990’s Adidas tearaway pants, having finally figured out what to wear to maintain my dignity while getting semi-clothed acupuncture, assuming dignity looks like a middle-aged woman dressing for a 90’s rave. (It doesn’t.)

Day 25

Am I getting better at walking after wine? Not like, better, better, but kinda?

Day 49

I test my 25-foot timed walk at home and I’m down to 7.49 seconds. I do it in 9.6 seconds with my cane.

Day 58

Fitbit tells me I took more steps today than I have in 3.5 years. I walked home from dinner on a patio in my hood, where I had two glasses of Chardonnay. I am getting better at walking after wine.

Day 65

I’ve been religiously tracking my daily walks around the block since the trial began. Today I clock 17 minutes, which two months ago would have been impressive. Now it feels slow, except I did it without my Dictus. I’m starting to say “I can’t believe it” a lot.

Day 77

Day 89

It’s my penultimate appointment and we’re supposed to be celebrating my gains, but Christie is charged with yet again telling me that at the end of the year the cost of PoNS will be doubling to ten thousand dollars and the mouthpiece will jump from $500 to $2500 every three months. Is this a PoNS scheme? Like a savvy drug dealer, the first three months are free and once you’re hooked on that sweet, sweet, walking high, they own you?

Christie does some retesting that confirms what we both know: I am stronger and faster:

A graph showing improvement in walking speed after using PoNS for MS.

From the safety of my apartment, I’ve started to practice walking without any aids. Drop-foot means my right foot still needs to slide, but I’m able to stay on my feet, unsupported, in intervals of 20 minutes without breaks. I’m prepping meals without needing a chair. I feel safer getting in and out of the murder-tub. Don’t tell The Banker, but I could probably start doing the laundry again.

A graph showing improved walking speed using PoNS for progressive MS.

I’ve been watching my body get slower and slower for years. My go-to proposition to the dark arts mostly consists of pleading for things to just stay the same. I’ll be good. Just don’t let me get worse and you can have my first born baby. You can have all my babies. You can have my Prada sunglasses and all my Sephora points. I’ll even stop swearing if you just let me stay the same. I don’t ask for improvement, because even in a deal with the devil, improvement seems like too much to ask; too much to hope for.

PoNS review: can PoNS help MS progression?

If you don’t have MS, you might be wondering what’s the BFD? I still walk with a walker and pee with a catheter. I still very-fucking-much have MS. But if you have MS too, well, I don’t have to explain these results. For the first time in forever, my MS is changing for the better, with the intervention of a device whose only side-effect is that my hair occasionally gets caught in the hard plastic neckband.

So I ask myself, if this is what’s possible in 99 days, what’s possible in the next 99? And the 99 after that? What is possible for the future of my MS?

What are you saying? PoNS improves MS?

More research needs to be done. We all know that everyone’s MS is different. PoNS isn’t about overnight miracles; there’s hard work involved and PoNS isn’t going to do it for you. But there’s reason enough for me to believe PoNS has contributed substantially to my improving mobility.

If you want to know how to get your hands on your own PoNS device you’ll have to do some googling. I’ve reached out to Helius with a number of Qs, but the PoNS pusher who first contacted me—a guy who genuinely seems to care about people with MS—sadly, no longer works for Helius, and my line of communication has been cut off.

Helius has every right to make as much money as they can from their product (yay, capitalism). But, PoNS can change the lives of a few people or it can change the lives of many. While PoNS waits to qualify for the medical device status it deserves, people with progressive MS will continue to wrack up disability. We don’t have the luxury of time on our side. 

While I feel very lucky to have participated in this research, as trial participants, we’ve invested considerable time, effort, leaps of faith and the significant cost of intensive physio–investments that will contribute to the eventual approval of PoNS as a medical device. 

Helius, you’re not taking my calls, but I know you’re reading this. Please do the right thing and make PoNS available to more people with MS. I urge you to allow your study participants to keep their devices once the data has been collected (a gesture which costs you nothing), and to reconsider your extraordinary cost increase.

I’d love to hear from other PoNS users. Some of you have reached out privately, but if you’re comfortable sharing in the comments, I know others will benefit from your perspective. 

I’ve been without PoNS for a couple of weeks now, but I’m not willing to plateau. I set fire to my credit card and invested in the device and a stockpile of as many mouthpieces as I could manage before prices go up at the end of the year. I’ll start PoNSing again, when my new device arrives, and I promise to keep you posted.

A woman with progressive MS wears a PoNS device around her neck.

Keep moving, Trippers. There’s hope on the horizon.

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Can MS Make You Sick To Your Stomach?

A woman holds her stomach in pain. A superimposed drawing of her intestines suggests her pain is caused by IBS.
I mean, obviously.

Note: This is not medical advice. If MS is causing IBS or other gastrointestinal symptoms, talk to your doctor. 

Can MS Make You Sick To Your Stomach?

You know that puffy, painful feeling you get after a massive holiday meal? The one where your stomach is stretched to the max and you vow never to eat again; but then your mom brings out the pumpkin pie and you convince yourself a “dessert tummy” is a real thing? 

As North Americans, we’re not exactly known for restraint when it comes to food–overindulging is practically part of our value system. Pretty sure it’s treason if you don’t polish off at least two heaping plates at Thanksgiving, and you clearly don’t love your family or baby Jesus Himself if you’re not eating your way through December. 

No judgement here. Food is amazing. From raspberry macarons in a Parisian champagne bar to the biggest, best curbside panini in Florence, to a cricket-topped guac in Mexico City, most of my best memories are attached to great meals. Food doesn’t just keep us alive, it gives us a reason to live.

Living for these pickles rn.

While the occasional overindulgence is normal and definitely worth it (because your dad only makes turkey stuffing twice a year), what’s not a good deal is feeling like a human circle after a kale salad or a saltless mug of bone broth. 

Guys. My tummy hurts. 

All.The.Time. 

It’s baseline for me to completely bypass the satisfied feeling of a belly full of sustenance and go straight to over the belt bloating and stabby pains almost every time I eat. Except I never wear belts and overwhelmingly prefer empire waistlines. The fashionista in me doesn’t believe that “sack” and “dress” should ever be uttered in the same sentence. But when my stomach’s in charge, it refuses to be contained.

My stomach is almost always in charge.

I’m not pregnant, I have IBS. (Also, I see you looking.)

If you have MS like I do, debilitating tummy troubles might be on your list of reasons why this disease is the freaking worst.

My abdominal distress can make it difficult to sleep, exercise, and concentrate. Chronic discomfort makes me say mean things and think meaner thoughts. Socially, I’m either feeling like a party pooper or eating through pain just to be polite. 

I’ve been complaining about early satiety, stomach aches, and bloating for years. I’ve seen naturopaths and a gastroenterologist. I’ve experimented with elimination diets. I’ve gone gluten free and tried Whole30. I never ever eat legumes and I rarely eat processed food. Thanks to my Fitbit I can tell you every single thing I’ve consumed since 2017 and there is no rhyme or reason to what causes my digestive system to wig out.

Bowel dysfunction is a widely recognized MS symptom. It’s easy to pin constipation and incontinence on MS. The bowel will not be ignored. But do not underestimate the power of MS to mess with your everything. From dysphagia to diarrhea, MS can cause gastrointestinal symptoms at all stages of the digestive process. 

Figuring out what’s wrong with my MSy tummy.

Anyone who lives with anything undiagnosed and under-treated knows that the pursuit of answers can wear you down. I can only use so much energy trying to fix any one of the 247 problems MS causes at any one time. At intervals, I calm down, reassured that I probably don’t have cholera or a tapeworm. Probably. I languish in a state that more or less accepts that like so many MS symptoms, stomach issues are something I have to live with. 

But when symptoms inevitably flare again, I re-enter the soul-crushing cycle of searching for solutions. My most recent plea to a new gastroenterologist left me feeling frustrated after I was told my symptoms don’t align with colon cancer, but that he would order a colonoscopy anyway, as well as an anorectal manometry for some reason.

The prep for both these tests is brutal for anyone with a neurogenic bowel. If you’re wondering wtf anorectal manometry is, lucky you. I’m not a doctor, so I can’t claim that an anorectal manometry is more than a bit extra for most of us, but this probe feels like a pretty extreme attempt to prove what we already know about MS.

While I’m tempted to make my gastroenterologist the villain of my gastronintestinal whodunnit, I recognize that this guy was just offering me the tools that are available to him.

One of the most important Q’s empowered patients need to ask is: Is this test/procedure/treatment really necessary?

When I expressed my concerns, my GI shrugged and told me I didn’t have to do the exams if I didn’t want to. When I asked if there was anything else he could offer me, he told me to take Metamucil. (Okay, maybe he is the villain.)

Clearly, I’m on my own here. Feeling like doctors have given up on my gut, I went back to a place that never lets me down: the internet. Here’s what I learned:

MS can cause dyspepsia

The Canadian Society of Intestinal Research validates that MS can cause GI symptoms that go beyond bowel dysfunction and draws a straight line between MS and dyspepsia. Dyspepsia sounds serious and I wonder if that’s what’s ruining my appetite. But when I read further I realize dyspepsia is just a fancy word for indigestion. Indigestion is what your alcoholic grandfather has because all he consumes are Hot Rods and Labatt 50. I refuse to accept that what I’m dealing with can be as simple as indigestion. Do not come at me with a ‘drink-more-water-avoid-carbonated-beverages- chew-your-food-and-eat-fucking-slowly’ solution. I have obviously tried these things.

MS can cause Irritable Bowel Syndrome

Like dyspepsia, IBS feels like a vague non-diagnosis; the thing they call the thing that they don’t know what the thing is. IBS feels like it goes with the word “just”. As in, “relax, it’s not cancer, it’s just IBS.” And, again, I say How dare you? I am suffering here. Irritable is what I become when I order brunch and my eggs arrive over-poached. Talk to me when you change the name to Homicidal Bowel Syndrome and I might reconsider HBS as a valid possibility.

MS is a risk factor for Gastroparesis

Gastroparesis is a condition that impacts the stomach’s ability to move food to the small intestine in a timely manner, and the more I learn about it, the more I start to believe that this is what’s happening with me. My arms, legs, and even my eyes are slow and uncoordinated. Not to mention my bowel and bladder. I also have a touch of dysphagia, which throws my swallowing out of whack. When everything around and connected to my stomach struggles to work together, it makes sense to me that my stomach would also be phoning it in. And nobody’s answering.

Send a text like a normal person.

My physiatrist agreed to send me for a gastric emptying study. Sidebar: I will post about physiatry later; and no, I’m not mis-spelling psychiatry. If you can get yourself a physiatrist do so. Physiatrists are the best people alive.

Preparing for a gastric emptying study

Unlike prepping for a colonoscopy or an anorectal manometry (I swear that’s the last time I will type that vile word), the prep for a gastric emptying study was not the worst. The hardest part was the need to skip my bowel meds (magnesium hydroxide, and psyllium, aka Metafuckingmucil) for 48 hours beforehand. And sure, this sounds like NBD, but if a butterfly flaps its omnipotent wings in Timbuktu, the delicate balance of my precious bowel routine will be thrown completely off course. It will take me at least a week to get back on track.

The day of the test I arrived at the hospital at 8am to eat a radioactive cheese sandwich. Then, at regular intervals, I slid into a scanner so a tech could take pics to see how far my breakfast had traveled. 

But like, half a cheese sandwich. It’s Canada and the healthcare is free. So.
Sandwich selfie station.

I was told I could leave after my 10:30 photoshoot if the sammy had traveled far enough. When I wasn’t released until 12.30–the maximum length of the test, no matter how far that sandwich had journeyed, I felt vindicated–certain that my advanced patient-knowledge and self-advocacy had led me to the solution to my problem. No matter that the tech, who for legal and bureaucratic reasons was not allowed to give me any actual intel, cautioned me not to interpret my own results. 

As I waited for my test results I started looking into gastroparesis diets. Fruits and vegetables are the foundation of my current diet but can be problematic for GP patients. Would my gastronomic future be limited to boiled chicken and baked potatoes? What would Terry say? Of course, the good news here is bagels, because unless you have celiac disease, the GP diet gives two thumbs up to bread. Still, it felt a bit sketchy because no diet ever recommends bread.

Tolerance is accepting someone who prefers NYC bagels to (real) MTL bagels.

I got my test results by email later the same day. You guys already know what happened. In the frustrating double-edged gut-wrenching reality of the chronically ill, my test results were normal. Of course they were.

I would eat crow if I thought it would help.

MS and IBS

I can’t help but wonder if the test had been done later in the day, there might have been a different result. My legs perform dramatically differently at 8 am than they do at quitting time, so why wouldn’t my stomach? Nevertheless, I’m willing to reconsider that IBS is more complex than I give it credit for and that maybe that’s exactly what’s going on. The most compelling evidence of the potential of “just IBS” is that despite feeling like my own death is imminent, I’ve been suffering for literal years and I’m not actually dead.

I went back to the Canadian gastro site looking for IBS life hacks and found this gem

Over time, with understanding and faithful adherence to an individualized treatment plan, many patients with irritable bowel syndrome can look forward to a notable improvement in their condition. In fact, statistics show that approximately 10% of IBS patients get better each year.”

Excuse me? 10%? TEN PERCENT???

Back to the naturopath I go for more tests and guidance. Spending more of my money and time and mental and emotional real estate just trying to feel okay. 

In the meantime, if anyone knows where I can get a fecal transplant (is that a thing yet?), lemme know. I will try anything.

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Can PoNS Treatment Make My MS Any Better?

Can PoNS Treatment Make My MS Any Better?

Lately I’ve been having more MS days than not. I’ve been spilling shit and falling down and taking fewer steps than average. It takes an increasingly ridiculous amount of time to get my legs through leg-holes. This morning I picked up the French press and poured my coffee down the sink instead of into my mug. Pretty sure I’d be spiralling into What Comes Next worries if not for this PoNS trial I’m about to jump into. (But like, hobble into.)

The Banker will tell you it’s been hot, that I’ve just gotten over a UTI. Or maybe this is the elusive Ocrevus Crap Gap I’ve heard rumours of but never fully understood. (I’m 5 1/2 months post-infusion and could someone gently explain with science how the Crap Gap impacts progressive MS?) That there’s a reason, or an explanation for all these stunts is little comfort. I might come back a bit from bad days, but the trajectory of my MS isn’t changing. Things are gradually getting worse for my tired little body. From time to time, the damage needs to be assessed and freaked-out over, before I can move on.

vodka cran, cause I have a UTI

Like getting older, MS progression is a sneaky mother-fucker. You don’t notice your face changing from one day to the next, but every now and then you catch a glimpse of your bare bum in a full-length mirror and wonder when the hell your ass fell down.

With MS, it’s wondering whether you’re actually getting slower or just not trying hard enough. It’s asking yourself ‘when did I stop being able to put my pants on standing up’. One year ago? Two? It’s seeing someone on TV bolt upright in bed and being stunned that they didn’t need to grab onto the sheets and wriggle themselves up in a complicated process. Was I ever able to do that? 

This is the Olympics, right?

 

Yeah, yeah, sucks to be you, but what the heck is a PoNS trial?

Right. PoNS stands for Portable Neuromodulation Stimulator, and I’m not sure why they didn’t just call it a PNS device. 

Oh wait. I just said it out loud.

The PoNS is a science fiction-sounding deal that electrically stimulates the surface of the tongue in an effort to trick the brain into neuroplasticity. It’s used with intensive physiotherapy to improve gait and balance in people with MS. 

I first heard about the PoNS from my friend Joe, who sent me Norman Doidge’s book The Brain’s Way of Healing. Joe included a note telling me to check out how the PoNS had helped a singer’s effed-up MS voice. The singer saw his first results after four minutes with the device, and after 30 years of MS, went from using a scooter to tap dancing in 2 weeks. I don’t have patience for miracle cures and things that sound too good to be true, so I shelved the book. I don’t wanna sound like a doubting twat, but guys, I’ve been burned by hope before, and this book was big on stunning anecdotes and light on critical assessment. 

As far as I know, Heather doesn’t have MS. I do not endorse this book.

Before the book could collect too much dust, I was coincidentally contacted by a representative from Helius Medical Technologies about the PoNS device. The rep had big used-car-salesman energy which only increased my skepticism. I didn’t take the potential for the PoNS seriously until I learned that my own doctor, was conducting a study at my MS clinic. The PoNS pusher (actually a lovely, intelligent guy, who seems to genuinely care and doesn’t deserve any sass from me–but for sure has a buddy who can hook you up with a good deal on a Ram 1500), shared some of the PoNS research. The data was much more reasonable than Doidge’s claims, and therefore, almost believable.

I qualified for the trial, took a deep breath and when I asked my physiatrist for her opinion, she noncommittally shrugged, “It can’t hurt”. 

Preparing for PoNS treatment for MS

Before the trial begins I had to do a timed 25-foot walk test. It took me 24 seconds with my cane and 12 seconds with my rollator to walk 25 feet. Then I spent several hours in my head, grieving my decline, while simultaneously trying to feel grateful for legs that are as effective as they’re ever going to be. 

For all my self-love and #babeswithmobilityaids pride, don’t kid yourself. Getting worse is hard. There are many days when I have zero chill about what this disease is doing to me.

This is the point where, normally, I would shop my feelings, and rewatch Gossip Girl. And, sure, I did buy two dresses and drop a sick amount of money on socks. But this PoNS trial is giving me another option beyond coming to terms with my weakening legs. The PoNS treatment is trying to seduce me with thoughts that my MS gait could actually get better.

Not like, better, better. But like, less bad.

What happens during a PoNS trial for MS?

The trial lasts 14 weeks, and I get to keep the device and can continue using it forever. The first 2 weeks involve intensive in-person training sessions that will require me to be at a clinic for half a day, but let’s just call it a full day, and don’t try to reach me, because it’s going to be mentally and physically exhausting as I work to override my own brain. This will be followed by 12, weekly in-person sessions. The rest of the time I’ll be required to work with the device on my own to improve my gait and balance.

Sounds unbelievable 

That’s what I said. The Helius rep connected me with a PoNS user who talked about people getting up out of wheelchairs. She was certain I’d soon be able to ditch my rollator. You won’t find these kinds of claims on the PoNS website. The reviews are positive but restrained and they don’t overhype the device. The study was small (20 people), which is why we need ongoing research. But PoNS treatment is already available in Canada and recently received FDA approval in the US.

A physician review on the site says “It has been a privilege to witness the amazing efforts put into this program by our clients, and then in turn, the impressive outcomes! While not true for every single case, many clients with MS have found the PoNS to be the missing link that helps them to see results from their dedicated rehabilitation regimen.” 

While I definitely don’t trust people who use exclamation points, this is hardly Lazarus rising from the dead level enthusiasm. Even so, I stopped cold at “not true for every single case”. While I’m starting to believe this device is a game-changer for some, if it doesn’t work for me, what then?

It can’t hurt

My cautiously optimistic physiatrist added to her Hippocratic endorsement that I was sure to gain muscle and sleep well by the sheer amount of physio I’ll be receiving alone. 

She’s not entirely right that it can’t hurt tho. 14 weeks of hard physical and mental work cannot be underestimated when fatigue is so debilitating that I have to make careful choices about how I spend my limited spoons. I don’t think people realize how hard we have to work for even small gains. Or worse still, when all this exertion doesn’t actually make us stronger. You can’t blame us for choosing to use our precious energy out in the real world rather than on barely noticeable leg lifts and tedious toe curls.

But bigger than the physical investment is the emotional one. If it feels like I’m being overly dramatic about the potential for even tiny changes in my ability to walk, then congratulations. You probably don’t have difficulty walking. It’s hard to articulate how scary it feels to allow myself room to believe the PoNS could help. On the other hand, it’s impossible to invest this kind of effort and energy without believing it might pay off.

Don’t you have to leave room for the possibility of miracles to work this hard?

I never wanted to get my hopes up with the PoNS device. I push myself to accept my declining ability to walk because the futility of railing against the inevitable is heartbreaking. But it’s too late. My hopes are up, and here I am, railing against MS anyway. 

Here goes everything.

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Managing Re-Entry Anxiety When You Have MS

Are you seriously gonna touch that with your bare hand?

Managing re-entry anxiety when you have MS

The big news chez nous this week is that The Banker and I are finally both eligible for our second Covid vaccines.

Cue the fireworks, bust open the champagne, it’s time to party. Right?

Appointments have been booked. The end is near. I can finally start having dinners with friends, hugs and high-fives, a proper manicure and a long overdue brow-wax.

Can’t wait to be high maintenance again.

When I asked about The Banker’s post-Covid bucket list, he said, “I’ll get to do groceries in person again!”

Okay, so The Banker has obviously forgotten how to live his best life. Nobody tell him that free samples are cancelled forever. But my goals are great–noble even. So, why is there a knot in my stomach? And a pang of something else. What is that, jealousy? 

Jealousy, FOMO, and re-entry anxiety

With a vaccine end-game in the calendar, it hit me that not a lot will change for me.

To be fair, not much will change for anyone, at least at first. Toronto is just starting to dip its toe into loosening restrictions. Outdoor dining only begins this Friday (June 11). Salons are still on lockdown, meaning my elusive brow wax is at least a month away.

In Canada, masks aren’t going away anytime soon. 

But even modest progress seems like a BFD after so much hunkering down. As restrictions begin to lift bit by bit, breadcrumb by breadcrumb, I won’t get to experience the relief and peace of mind of the fully vaccinated. I still have to ask myself if it’s a good idea to participate in whatever it is the government has deemed acceptable at every stage of reopening.

Same old normal

I’m not talking about all the ways MS interferes and already keeps my life at arms length from normal (whatever that is) without a global pandemic to consider. Many people with chronic illnesses and disabilities have existed in various stages of lockdown long before Covid was on the scene. MS has meant I’ve had to sit on the sidelines before; and for the most part, I’m used to it. I’ve got my routine and my workarounds. I’ve adapted to life with a disability.

Re-entry anxiety with MS medications

The post-vax blues I’m predicting are more about the fact that even after that second shot is in my arm, I can’t assume full protection against Covid. My MS is managed by an anti-CD20 agent (Ocrevus), which is a fancy way of saying there’s a good chance my immune system has only mounted a half-assed response to the vaccine.

This isn’t to diss Ocrevus or the vaccine. I’m enormously grateful for both, because MS is still very much prepared to mess up my life at every opportunity, and in terms of the vaccine, some protection is better than no protection.

To be clear: Get the vaccine.

But some protection doesn’t equal enough protection for me to throw away my mask and start hugging my nieces and nephews. As we wait for studies to be published about the efficacy of the vaccine on immunosuppressed populations, the double-vaxxed are easing into that sweet, sweet life of fewer restrictions, enjoying boozy brunches on outdoor patios and the occasional retail experience. It’s not yet clear how I get to safely rejoin society, and me and my out of control eyebrows are feeling a little left behind.  

I miss brunch so bad. Also, those nails.

Re-entry anxiety affects more than people with MS

Feelings of nervous re-entry and anxiety aren’t unique to people with MS. Plenty of people without complicated immune systems are coping with the kind of mind-fuck that comes with having lived through a mass-death event.

In the face of all this anxiety it can be tempting to keep doing what we’ve been doing, and just stay home. Covid is the enemy we know, and isolation is the best defence. I’ve felt the fear that lingers after you’ve been told something is safe that was formerly life-threatening before. I grew up with an anaphylactic nut allergy. Yup, I was that kid. In my twenties, I saw an allergist who confirmed that, actually, I’m only fatally allergic to walnuts, peanuts, and pecans. I was told to ‘have at it’ with cashews, almonds, and pistachios.  

It was nerve-wracking to eat my first nut when I’d been conditioned to associate them with certain death. For a long time, I didn’t see the point in trying to overcome that fear. And yeah, I could have lived my whole life without Nutella, but have you tried Nutella?

Even worse than a life without hazelnut crèpes, social withdrawal has serious consequences. So many with MS already live with insufficient social capital. If we don’t actively invest in our connections we could find ourselves dangerously lonely, and fast. Because, as things start to open up, many of the people in our circles will be returning to the outside world. How quickly will they forget what isolation feels like? When there is no longer the necessity to connect in creative ways, how many people will get left behind?

We were never all in the same boat, but at least it was the same storm. 

We need to see other people

Which isn’t to say I’m interested in holding anyone back. Not even a little. The Banker has been banking from home for far too long now. At some point he’ll go back to the office, and let the choir sing. Yes, there have been perks to having him around. It’s nice to wake up to freshly brewed coffee. But, he’s a loud typer, and in our one-room open-concept loft, I have to schedule my smoothie-making around his many video calls. Calls which have taught me that banking is mostly about repeating words like, ‘initiative’, ‘core competency’ and ‘circling back’. For something as traditional as finance, there’s a lot of talk of ‘thinking outside the box’. Meanwhile, I’m a loud talker, and he’s hitting mute while I’m giving interviews about incontinence. We’re both ready to put a little bit of mystery back into this marriage. 

In defence of continued caution

Maybe I’d feel safer if we applied some of what we’ve learned from this pandemic to post-Covid life. Lockdown sucks and I hope we never have to do this again (fourth wave anxiety is real), but masking and distancing virtually eradicated flu season last year, and with one third of MS relapses being traced to colds and flus, this has no doubt had implications for the MS population. I wonder how many MS relapses were avoided and subsequent disability was prevented without infection-triggered attacks.

We don’t have to just accept that we’re going to barf our brains out or hack up a lung every winter. I’m not talking about the extreme measures we had to take for Covid, but why not normalize wearing masks in crowded indoor spaces for the wellbeing of our most vulnerable. The painful answer is that, I don’t think our society actually cares enough to do this, but I for one can’t imagine bumping elbows in a theatre or on the subway without a mask. To whatever degree I can, I will be protecting myself. 

Minimizing pandemic re-entry anxiety in a way that feels safe for me

Anxiety amounts to fear of the unknown. Welcome to MS. I should be better at processing this by now. Like the Nutella crèpes of my 20s, the potential for gossip with friends and some professional grooming are strong motivators for me to figure out a re-entry plan that feels safe for me. For those of us on anti-CD20 agents like Ocrevus, Rituxan, or Kesimpta, our vaccination status is not black and white, but more of a dimmer switch into a grey area where the rules and guidelines that the government sets out require careful consideration. 

As I mentally issue vaccine passports to the country that is me, the Dominion of Ardra, granting clearance only to those deemed trustworthy, it can be hard not to think about the choices of others in terms of who cares enough to protect me and to take my concerns seriously. But the logical part of me is also the more gracious part. The vaccine has become a polarizing proposition at a time when we need compassion more than ever. Even if I disagree with how others are approaching the pandemic, I realize their decisions are not about me. We’ve all been through trauma. Everyone is doing what they think is best, and I am free to limit my interactions accordingly, without taking things personally. 

For real, there was a country called Ardra in the 17th c. (now Benin). This crown was a gift intended for its monarch. So. (Rijksmuseum, Amsterdam).

The theme for my post-vaccination summer is: tentative, calculated. I will figure out what are safe, acceptable risks and cautiously inch my way back into society. I never wanted to do the groceries anyway.

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How Disability Benefits Can Make MS Suck Even More

A judge sits behind a gavel, reviewing paperwork.
It’s about to get judgey in here.

How Disability Benefits Can Make MS Suck Even More

*scroll down for tips to manage the stress and stigma of the disability benefits process

One of the reasons MS sucks so bad is the stigma that comes with having a disability. This is especially enraging, because on some level I can accept that science hasn’t yet figured out how to fix my legs, but it feels like it should be easy for society to just get its shit together and stop acting like the chronically ill are second class citizens.

I’ve talked a lot about other stigmatizing aspects of MS–bladder and bowel issues, sexual dysfunction, and mobility aids—but I’ve so far stayed away from the D-word: disability, as in, I’m on disability. Maybe it’s called something else where you live: SSDI, DLA, PIP, LTD, ODSP, CPPD or FML, because the details regarding what kind of income benefits you may be entitled to are different depending on where you live and what kind of employer coverage you might have, but the stigma around being on benefits, the difficulty in acquiring them, and the struggle to exist on the income they provide, is universal. If you’ve ever needed to make a disability claim, you know that this can be a cringey, stressy, miserable, demoralizing af experience. 

And the worst part is, the system seems designed to make us feel this way.

Literally rather do my own root canal than fill out this paperwork ever again.

The MS learning curve is steep. Navigating the tremendous financial burden of MS takes a bit of know-how. We need guidance on when it’s time to apply for disability benefits, and how to do it, with a side-order of how to go through the process with your self-worth intact. We are under-qualified to challenge a system that’s motivated to deny us resources. 

My early experience with disability insurance

20 years ago, when I was diagnosed with MS, I was working in finance using my bilingual skills to get paid more than I was otherwise worth, in an industry I had no interest in beyond hooking up with Soul Patch (it was a different time), the occasional ride in a private plane (okay, it was one time) and recklessly spending my paycheque on handbags and vodka lemonades, while I used what little free time I had to pursue my actual dream of becoming an opera singer. My stint in finance was a place-holder to satisfy my shoe habit while I figured out my real life. 

As soon as I was diagnosed, I had an idea of the kinds of things MS might take from me. Physical things. My vision, my ability to walk, whatevs. But when my neurologist told me to never quit my job, the wind was sucked out of me as all the possible futures I’d imagined for myself felt threatened. He knew what I was still too naive to realize: that I had a job with great benefits, that MS is expensive, and that my now pre-existing condition might make it difficult for me to find employment or get insurance elsewhere.

I felt stuck at a job I was grateful for but couldn’t move on from, because I was dependent on the medication that cost tens of thousands a year, not to mention the disability benefits; a safety net that felt like a crappy consolation prize for a future without a career.

Of course, what I also didn’t know was how difficult and demoralizing it would be to cash in on those benefits and how soon I would need them. 

Sidebar: can we stop calling the fulfillment of a mutually agreed upon contract benefits, like it’s Clinique Bonus time? How about “the least we can do considering the shitty situation you find yourself in”

Enter disabling symptoms

Vision loss, fatigue, and frequent relapses meant I almost immediately needed accommodations to continue working. Oh, I had plenty of other symptoms that made office life hard. Bowel and bladder issues and problems with mobility that made it look like I was stealing sips from the bottle of Bailey’s that Kate kept in her desk drawer (we all knew, Kate), not to mention the all consuming stress and anxiety that came with a life-changing diagnosis.

I was quickly introduced to the world of disability benefits, and I knew how lucky I was to have them. It was only a year or so earlier that I’d scoffed at coverage. My monthly birth control (the only drug I thought I’d ever need) cost less than the potential insurance; so naturally, I declined to pay into a plan that would cut into my party fund. The only reason I had coverage at the time of my diagnosis, was because the company had made it mandatory just months before. 

Social stigma of disability benefits

For a few years, I worked reduced hours with modified responsibilities. I wasn’t taking home as much money as I had before my dx, but my part-time paycheque was supplemented by my disability insurance. At the time, my symptoms were invisible; and I’m pretty sure more than one person thought I was living the dream, rolling into work on days when I felt like it, making my own hours, and doing what I could. 

The first time my benefits, and therefore my livelihood, were threatened, I was on my way to the airport for my bachelorette party in NYC. I checked my voicemail only to hear a message that said my coverage was being canceled. I was panicked and terrified. My weekend was ruined, of course. I was freaking out about my whole future being ruined.

Outrageous, right?

At this point your outrage might be more directed at me than at my insurance claims officer. I mean, how could I have been jetting off to NYC for a girls’ weekend when I was receiving disability benefits, and only working 20 hours a week. I should have been sick in bed, living my sick and sad life. Did I mention that I’d gotten engaged in Paris the year before? 

The rule is that anyone who needs help must be helpless, dependent, pitiful. Poor.

I felt this vibe from my co-workers. Not all of them, but it only takes one or two raised eyebrows and a snide comment to poison your psyche and make you come undone. I was defensive. I felt I had to justify everything to everyone, explaining that I wanted to travel while I still could. I shared excruciating details of how MS impacted me in an effort to have my illness taken seriously, as if explaining invisible symptoms ever helped a disbelieving doubter understand anything. My justifications only made me doubt myself.  

What I didn’t realize at the time was that, disabled or not, it’s actually nobody’s business how anyone spends the hours when they’re not at work. 

One month before my wedding, my employer decided my needs could no longer be accommodated and at 27 years old, I was medically retired. This isn’t an essay about the grief of not working. I’ll save that identity crisis for another day. 

Medical Retirement

When people would ask, “So, what do you do?” I could never bring myself to say the basic truth that, well, I paid into a disability insurance plan, and then I acquired a disability and made a claim. Of course, the short answer is actually none of your fucking business, but that’s an unreasonable amount of hostility to bring to a cocktail party. I choked on saying I’m on disability because I felt the interpretation would be, oh you’re one of those people. Lazy, living off the system. A loser. Ironically, my shady and evasive answers probably fed my own raging internalized ableism. The truth is, it takes a tremendous amount of energy to assert your worth to some rando who almost certainly isn’t going to get it anyway.

When people knew I wasn’t working, I’d often be asked what I do all day; a  question I still bristle at. I assume this Q is more along the lines of what the hell do you do all day than a genuine interest in my routine; an invitation to defend how I spend my time while the rest of the world is engaged in the morality of work.

People on disability are expected to exist without really living. We’re conditioned to feel shame for being a drain on society and thankful for whatever crumbs the system throws us. We feel guilty for feeling happy or experiencing anything remotely positive. Disabled or not, we wear being busy like a badge of honour; because culturally, we live in a world that doesn’t even allow us to rest, let alone do anything pleasurable until we’ve earned it. 

The demoralizing disability benefits process

Every time one of those big brown claims envelopes would arrive at my door I’d feel a pit in my stomach. The need to assert my deficiencies, over and over again, to strangers who didn’t understand my disease and were trained to doubt me, felt like a situation designed to break me. Aside from the fact that a liveable income should be a human right, it costs hella money to live with a disability. Par exemple, it costs me more than $3 every time I pee, and that’s not just because of how much champagne I drink. Medications, medical supplies, mobility aids, physiotherapy–M$ is bougie. Having access to any of these resources threatened on a routine basis is traumatizing. But even if MS wasn’t so costly, we shouldn’t have to merit our benefits by being broke. Whether by taxes or policies, insurance is something you paid into

Even when benefits are approved, people with MS never feel safe that they’ll be able to keep them. There’s a constant fear of reassessment. The stress of the claims process is exacerbated by a system that lowkey treats you like a criminal. Like, literally, some of you will have to go to court over this. And stigma makes the process so lonely. Because who can you even talk to? Who will understand without judging?

Worse still is the privilege that exists within the marginalization of disability. I know I have a lot of disability P. My story is far from a worst case scenario. The stigma and difficulty around accessing disability benefits is exacerbated the more marginalized identities you intersect with.

I can’t undo our misguided cultural values with a blog post. But I can say that I see you. You’re not alone. You don’t suck at life. You got a raw deal and you don’t deserve an obstructive, uncaring, bureaucracy on top of it. And maybe I can give you a few tips about how to navigate the system with a little more chill. 

Tips for navigating the stressful world of MS disability benefits

Keep Notes

Invisible symptoms like fatigue and pain are especially hard to prove. Keep daily notes and record every symptom and what you had to sacrifice because of it. Overload your claims officer with honest and accurate intel. Many of us try not to dwell on the downside of this disease. This is not the time to grin and bear it. 

I found documenting my deficiencies to be unsettling. Seeing it all laid out can create anxiety. Keep a gratitude journal on the side for your own personal sanity and to help you maintain perspective. There are lots of apps that can help with symptom tracking. 

Communicate with your doctor

Sadly, sometimes stigma and condescension can come from your doctor. Make sure you have a physician who understands and supports you. Ask for your medical records. You need to make sure all your symptoms are documented.

Get professional help

Do your research and consider hiring a lawyer experienced in disability claims. It can feel expensive and intimidating; but it can be worth it to have someone who understands the system and will go to bat for you. There are other professionals who can intercede on your behalf like social workers, and non-profit organizations. Reach out to your MS clinic for resources.

Get your shit together

Cross your t’s and dot your i’s. Don’t miss deadlines. I know you don’t wanna talk to the insurance company (pretty sure their own mothers don’t want to either), but answer the phone. Keep your paperwork all in one place. Request copies of your consultation reports and medical records in advance so that you’re not dependent on your doctor’s busy assistant when the insurer is threatening to cut off your benefits.

Don’t give up

The system feels designed to make you give up. Don’t. If you are rejected, get legal advice and appeal. 

Steel Yourself

Get ready to lay yourself bare; to tell cold and uncaring strangers about your bowel incontinence or cognitive dysfunction. Be prepared for the humiliation of having to work hard to prove what you are incapable of, while processing the grief of not working, and the utter stupendousness that anyone would think you’d actually choose this path. 

Don’t apologize

While you do have to spill to your insurance company, you don’t owe anyone at work or in your personal life an explanation. Constantly defending yourself can undermine your confidence. You don’t need to apologize for enjoying your life. Disability insurance isn’t charity, even if we are expected to receive it as such.  

Save

I don’t know what programs exist in other countries, but if you’re a Canadian with MS, you need to know about the RDSP. You can contribute to this plan even if you’re working, and you can triple your investment every year. Apply for the disability tax credit, again, even if you’re working. Start googling what’s available in your hood or talk to a tax specialist.

Never say never

I no longer receive government benefits. Not because my MS got better, but because modern technology and opportunities that didn’t exist all those years ago have enabled me to claw my way back into the workforce. I don’t work in finance or classical music, but MS can make us good at reinvention. I don’t know how long I’ll be able to keep working, but the Covid crisis has changed our understanding of workplace accommodations. I’m hopeful that the lessons we’ve learned might enable others with disabilities to find or maintain meaningful work. Our lives should not be valued by our ability to bring home the bacon; but there are many valid, healthy reasons why we might want to work and why work can be good for us.

So much of crushing stigma is about refusing to accept someone else’s definition of who they think you are. Whether you’re working a lot, a little, or not at all, having MS is also your job. You deserve the fullest life you can imagine for yourself. Unapologetically.

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What’s The Big Deal About Coming Out With MS?

Is MS your sick little secret?

What’s The Big Deal About Coming Out With MS?

One night, years ago, The Banker and I were out for drinks with some new colleagues of mine. Between antipasto and mouthfuls of montepulciano, the conversation turned to trading tales of lowkey medical trauma, like the time my high-school boyfriend accidentally ice-skated over my finger. You know, the horrifying stories of slamming your hand in a car door, or punching yourself in the face as you attempt to put on a bra; anything involving crazy-glue, a crème brûlée torch, or a mandolin, really.  

Not one to let a gross story go to waste, The Banker started sharing his own cringe-worthy anecdote–well, our cringe-worthy anecdote–about the time we were in a Montreal hotel room when my DMT’s auto-injector jammed. While The Banker tried to solve the problem, the device suddenly sprung back to life, catapulting the syringe full of potent medication into the air before landing it dramatically in the centre of TB’s bare-footed big toe.  

Of course, TB never got to share the climax of this harrowing tale. Almost as soon as he started talking, he panicked and went pale as he realized he was outing my MS. His attempt to bail on the story only made things worse as his sketchy plot holes made it sound more like a heroin experiment than however he thought he was spinning it. I should have re-directed the convo by outing his third nipple, but I respect boundaries and that’s his story to tell. Instead, I jumped in and confessed the truth: actually, I have MS.

Wait, what? Who doesn’t know you have MS?

When I was first diagnosed, I never thought people would treat me differently because of it. I was open about my MS. 

I also used to think mermaids were real and that vodka won’t give you a hangover. I was wrong on all counts. I quickly learned that people do act differently when they learn you have a chronic illness like MS. Not always, but enough to make me wary. And eventually, the pressure to prove my invisible illness, the dismay of being treated like damaged goods, and the fear of being left out or left behind, led me to start keeping my MS classified.  

My improv troupe. Not one of them knew about my MS.

Passing as non-disabled

There was something intoxicating about passing. Staying silent meant I could be Ardra, instead of Ardra-with-MS. But it was an imperfect solution. Keeping secrets is stressful, and MS will try to reveal itself in ways that those of us who live with it don’t always recognize are our ‘tells’. I’ve been asked about my fancy walk, and why my fonts are so big you can see them from space. 

I remember the lunch with a new friend, when I was just learning to self-catheterize and had spent an unexplainable 45 minutes in the bathroom. I remember stumbling into an audition, certain the panel thought I was drunk. I remember the European choir tour (where, like everyone, I actually was drunk) but the amount of rest I required led to rumours I was pregnant. 

I was more comfortable being thought rude and reckless than sick and disabled.

Not pregnant. Just need to sit. Again.

Coming out with MS

Coming out and passing are terms we associate with the LGBTQIA community. The disability community is marginalized in different ways, but members of both groups have felt the need to hide an identity over which they have no control. Both communities fear how disclosure could impact  careers, relationships, and safety. Both communities risk being isolated, stigmatized, and seen as less-than. Just like homophobia, ableism exists. 

If you haven’t watched Netflix’s Special do it now. I mean, finish reading this, and then watch, obvi. Ryan O’Connell’s character (adapted from his real life) is a proud gay man who allowed his new coworkers to believe he’d been hit by a car, knowing it was a more palatable explanation for his own fancy walk and unexplained behaviours than coming out with the full truth, that he has Cerebral Palsy.

A recent study shows that for many with MS, the ‘should I/shouldn’t I’ decision can be serious enough to cause anxiety and depression. It’s not enough to be told that the world will understand and that the law is on our side. Because, is the law really on our side when there are systems in place that keep disabled bodies out of sight? When inaccessibility is standard, medications and medical equipment aren’t affordable, and people with disabilities regularly have to fight for benefits?

Coming out with MS can be scary

It can be terrifying to tell someone in a position of power or influence over your life, or even someone whose opinion matters to you, that you have MS, when it’s still acceptable to say, think, and believe that able bodies are better than disabled bodies. To be clear: 

Able bodies are better than disabled bodies is still something you can say out loud and not get canceled. You might even believe it yourself. 

It’s equally acceptable to react with horror at disability; and if you think I’m being dramatic, let me remind you of Tiktok’s viral new teacher challenge where parents–PARENTS–used photos of people with disabilities to scare their children.

The cost of keeping quiet

And so we hide our MS, like it’s something to be ashamed of, from the people we depend on for survival. Who wouldn’t want to keep this shit on the downlow? Sure, passing has it’s perks, but that doesn’t mean it isn’t hurting you, or the rest of the world for that matter. The obvious cost of keeping quiet is that we are left to fend for ourselves, without necessary accommodations. This can lead to frustration, fatigue, and a reduced ability to perform the tasks of daily living. And keeping quiet can have other consequences too. 

Eventually, keeping MS my sick little secret felt gross, like a betrayal of myself. 

When we don’t feel safe enough to disclose our MS, we end up reinforcing a damaging message to ourselves that we have something shameful to hide. Even the language around sharing a diagnosis as something that needs to be disclosed suggests there’s something sneaky going on; something that needs confessing.

I see you looking.

Worse still, we are never free to truly be ourselves. Our sense of self-worth becomes dependent upon maintaining a lie. When we say that’s not me, I’m not one of those people, we perpetuate the stigma around chronic illness. We let the status quo go unquestioned, and we send ourselves the dangerous message that disability is a choice one can simply opt out of. 

Humans have a need to fit in, and the desire to be included is powerful. But disability is the largest minority in the world. And yet, we haven’t found safety in numbers, let alone pride in identity. So many people live in fear of being found out and seen as damaged, broken, sick, less-than. Disability IS normal. If we can’t raise a hand and say this is me, this is what MS looks like, then we can do nothing to undo the myth that we are different, strange, less-than, other.

Me, after climbing 1000 steps in 2014. This is also what MS looks like.

So, you’re telling me I should always be open about my MS?

Hell no. You don’t have to tell everyone, or anyone about your MS. Even with a gait that gives me away and an openly MS internet presence, I still find plenty of opportunities to deny nosy randos access to this kind of intel. Not because I’m ashamed to have MS (I’m not), but because I’ve decided it’s not in my best interest. I don’t owe anyone an explanation for how I move through the world. And neither do you. 

Coming out with MS in a positive, empowered way takes practice. It’s hard to acknowledge membership in a group that literally no one wants to be a part of. It’s hard to claim status in a society that has a hierarchy of bodies that values productivity and so-called perfection above all else, but asserting our right to be meaningfully included is exactly what we need to do. 

In a more progressive world, where disability is no longer misunderstood, stigmatized, and seen as a liability, people with MS would feel safer sharing their health status. Until then, we can’t advocate for our needs or dismantle stigma and ableism without being open, vocal, loud, and proud.

Nobody said progress was easy.

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How To Quit Feeling Like MS Makes You A Burden

A heavy, metal ball and chain are a powerful visual of how some people with MS might feel like a burden to the people who care for them.
Break these chains, baby.

How to quit feeling like MS makes you a burden

I am a strong, kick-ass, independent boss-babe woman. Also, could you please bring me my phone and my water, adjust the pillow under my feet, plug in the heating blanket, and cover my right foot, but not the left, throw out this handful of used kleenex, turn up the heat, and reassure me it’s your greatest pleasure to do so? If you haven’t finished the dishes or the laundry, no rush. I can wait. Probably.

A white woman with MS is in full hair and makeup is sitting in a bed with a pink tufted headboard. She is wearing a pink feather jacket and a sleep mask sits on her forehead. She looks fancy and more high-maintenance than burden.
I’d like my grapes peeled and my water room temperature.

As someone with MS, I spend a lot of my day mentally triaging my wants versus needs, divided by energy, before half asking/half apologizing for the small (and even big) favours that will help get me through my day. “Sorry to bother you, but…”, “Since you’re up, could I trouble you to…”, “Babe, would you mind…” are things I say all day, every day. And, more often than not, the words taste like bile in my mouth. Thanks to lockdown, lately almost all my requests for assistance go straight to The Banker. As much as I sound like a pampered princess with a man-servant in my employ, the truth is that constantly asking for help with basic things can be demoralizing. I fight feelings of humiliation every single time I get trapped in my sweater or need help getting up off the floor. MS means I’m going to keep needing help, so I need to figure this shit out, because feeling demoralized is not my jam.  

When MS makes you feel like a burden

Life with MS is easier when you have help. Obviously. Hallelujah, helpers. There are a million ways someone with MS might need a helping hand. Help can include everything from grabbing coffee and listening to us rant, to being understanding when fatigue forces us to cancel plans. Help can even include more intimate tasks like helping with dressing or showering and everything in between. I know how fortunate I am to have a husband who does every ice-cold, early-morning dog walk, and a bestie who has more than once offered to shave my legs. I don’t take these gifts for granted.

A white woman with MS stands in profile in front of her rollator. She's wearing skinny jeans which truthfully can sometimes be a bit of a burden to get off if you have MS.
“Can you help me take my pants off in a non-sexy way?” is a real thing that I have said.

But at what point does gratitude cross the line into feeling indebted or like a charity case? Too much gratitude can feel more like lowkey begging for reassurance that your life isn’t more trouble than it’s worth. Barf.

Dependence has an image problem.

I freely acknowledge my dependence on Netflix and Amazon. I’m not ashamed to admit I’m still suckling at Miss Vickie’s salty teet. But my dependence on another person to pick up my Amazon packages and to get the Miss Vickie’s off the high shelf can leave me feeling bummed about the things I feel I should be able to do for myself. MS can erode a person’s sense of independence and needing help can lead to feeling like a B in the worst possible way: Burden. 

A white woman with MS sits outside on a white rollator in front of a white car. She is talking on her phone and smirking, trying to look more bitchy (in a good way) than burden.
You thought I was gonna say bitch? Bitch, please. If you wanna cut me, call me a b*rden.

We live in a culture that values independence and productivity above all else. Even within the medical community we are routinely encouraged to maintain or improve our independence. I don’t object to this goal in theory; in fact, I work hard to achieve it. The problem is that when independence is the only option on the table, we don’t learn to appreciate the value of receiving help. We reinforce the silent, but excruciating, belief that needing assistance or being dependent in any way is a 

Very. Bad. Thing. 

Which serves none of us, because in the broadest sense, true independence is impossible (did you make your own car?), and unhealthy (even Tom Hanks needed Wilson). In the world of MS, when more value is placed on pushing ourselves past our limits, the pressure to be as independent as possible turns toxic when our efforts to be good disabled patients leave us too proud to ask for help, reluctant to take breaks, ashamed to use mobility aids, and feeling like failures.

A woman with MS is in a beach wheelchair. She looks fancy. She is being helped by two men. The men are making it look like hard work, but she insists she isn't a burden.
These guys are being dramatic. I’m light as a fucking feather.

Why you need to stop the belief that MS makes you a burden

Accepting help is accepting love

If your kids have ever made you shitty coffee and undercooked pancakes on Mother’s Day, you already know that graciously receiving even garbage help is a gift to the giver. You don’t have to accept every rando’s unnecessary good deed for the day (I’m looking at you, aggressively helpful elevator button-pusher), but when we stubbornly refuse help that’s needed and freely offered, we risk rejecting love. 

A white woman with MS is in an elevator. She is wearing a trench coat and looks irritated.
My legs are a little slow, so you’d better make a big show of rushing in front of me to push the button.

Accepting help improves relationships 

Asking for help creates trust and appreciation. Letting someone do something nice gifts them the opportunity to feel good. If you got a boost from getting me the chips, you’re welcome. 

Everyone wins

Asking for help when you have MS lets you use your energy for things that contribute to your relationship in a more meaningful way than folding the laundry might.

Cool, cool, I get it–it’s better to give than to receive. Is that why it sucks so bad to always be the receiver?

Relationships are give and take. If you have MS, you might feel like you’re doing all the taking. It’s tempting to wonder what we bring to the table when things feel unbalanced, but maybe that’s because we haven’t put enough value on the right things. The housework The Banker does is more quantifiable than the charm and wit I bring to this tit for tat (tho, to be fair, I also bring the tits). But real love shouldn’t keep score. Maybe it’s not fair that The Banker does all the toilet-cleaning. It’s also not fair that I have all the brain damage. Life isn’t fair. You are more than what you can “do” for someone.

How to get better at receiving help and stop feeling like a burden

Stop apologizing, and ditch the endless thanks

You didn’t ask for MS. MS isn’t your fault. When we repeatedly apologize for having our basic human needs met we reinforce to ourselves (and others) that we aren’t worthy. Offering endless thanks can have the counterintuitive effect of suggesting the helper’s intentions aren’t sincere or that help isn’t given freely. What’s more, perpetual thanks and apologies can reinforce misguided shame and the sting of feeling like a charity-case, which is a slur we sometimes give ourselves.

Accept that sometimes it will be annoying to help you

Sometimes I ask for help and the answer is less than enthusiastic. Nothing outright hostile, more like silent resignation. I’ve struggled with the need to feel reassured that I’m not putting anyone out, that I’m not that effing B word, burden. But I recently had a lightbulb moment when I realized there’s a difference between being a burden and being annoying. I accept that sometimes it is a pain to help me with stuff. Sometimes it’s irritating af to sit down and get comfortable only to be asked to get up and bring the  goddamn chips life-saving medication. Nobody has to pretend they’re excited to clean up the broken vase full of water and dead tulips I’ve just dropped. Because, guess what? Whoever is doing me a solid is almost certainly irritating in their own right. Everyone does annoying shit all the time. We can be annoyed with each other and still have healthy relationships. 

Assistance doesn’t mean burden. It means coexistence. 

I understand that not everyone with MS has a helpful, supportive team 100% of the time. If you care for someone with MS or any chronic illness, it’s important that you never withhold care when you’re angry or fighting. To do so risks causing serious psychological damage, and you don’t wanna do that. 

Let your helpers know they can, and must, ask for help from time to time 

The Banker is helpful to a fault. He puts everyone’s needs ahead of his own. I know we’re all tired of hearing the whole oxygen mask analogy, so lemme tell you a much grosser story about the pitfalls of always prioritizing the needs of others.

The Banker won’t mind me sharing about the time he was prepping for a routine colonoscopy (because, as I just mentioned, my needs first). It was a Thursday night and I had choir practice. Choir practice, okay? Not exactly life or death. After several back-and-forth “are you sure you’re up to this?” texts, The Banker insisted on picking me up, even though I could have easily taken a cab. When I got in the car, he did not look good. He didn’t talk the whole ride home. He couldn’t. When we pulled into the underground he sprung from the car and immediately projectile vomited Peg-lite like he was auditioning for a remake of The Exorcist

The Banker has never denied me help, but he’s not good at helping himself, and he especially sucks at asking for help. There’s nothing virtuous about this kind of self-sacrifice. Even Jesus accepted help from time to time.  

The people in your life might be reluctant to ask you for help because they rightly recognize how much you’re dealing with, living with MS. But, helpers, please don’t deny us the opportunity to support you. Just because we have MS doesn’t mean we have nothing to give.

Brené Brown said, “Until we can receive with an open heart, we are never really giving with an open heart.”

Are you gonna argue with Brené Brown and Jesus? Yeah. I didn’t think so.

Communicate during a neutral time

Are there things you routinely need help with? Instead of asking for a million things a day, I find it useful to periodically communicate the daily things that are especially hard for me, but might not be obvious (making the bed, prepping a hot water bottle, moving a chair in and out of the kitchen). If you pre-negotiate your needs, you might save yourself and your loved one the frustration that comes with being asked to do something repeatedly or at an inconvenient time. 

We all need each other 

At one point, we needed each other to survive in a very real, help me avoid being murdered by this tiger kinda way. Now we’ve been conditioned to believe that needing help makes us less-than. 

Two thousand words later, I still don’t have this whole neediness thing figured out. I still feel like a disabled (but like, self-aware), Mariah Carey-level diva when my socks are being folded and I ask one more time for a glass of water and a room temperature adjustment. But when I think of the big things, when I think of The Banker holding me tightly to stop me from shaking from fever, or sitting with me in a foreign country, folded over a pillow while a doctor takes fluid from my spine, or setting up Optimus Prime in Paris so we can roam the city together, I don’t feel like a burden. I feel the opposite of diminished. I feel stronger; like we’re a team. When I think of these acts of love, I remember that I’m worth helping.

And so are you.

If you’re not convinced and still feel like MS makes you a burden, check out this TedTalk that helped me: “Being asked for help is a privilege.”

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