10 Secrets I’d Tell My Newly Diagnosed Self About MS
If I could travel back in time to 2001 when I was newly diagnosed with multiple sclerosis, the first thing I would tell my younger, stupider self would be to, “Pour one out for those cargo pants. You don’t need pockets on your knees. You have, like, 16 bags.”
And Younger Me would be like, “What’s with all the rips in your jeans? Are we poor in the future?”
And Future Me would clap back, “Nice chunky highlights, cough”.
And Younger Me would be all, “Your eyebrows? Are enormous. Is there a muppet trend happening in the future?” This would go on for awhile until we both realized that neither of us could win; our bitchiness being perfectly matched.
After we’d hugged it out and established a shade-throwing cease-fire, Future Me (grown-up, classy and chill), would re-introduce myself to Newly Diagnosed Me (naive, mouthy and hysterical), as the devastating illness expert I’d so desperately needed when I’d first heard the term MS. Here’s how it would go down:
Newly Dx’d Me: What the hell is going on and why did this happen? WAIT. Is this because I…
Future Me: No, idiot. You did not bring this on by hosting a wine-soaked Halloween séance. The sudden blindness you went through two weeks later was not God’s punishment for casting a hair-loss spell on your crush’s girlfriend. Trust me. I checked with Science. Sometimes bad things happen to bitchy people, and it’s just a coincidence.
MS Secret #1: MS is not your fault
Newly Dx’d Me: I can’t stop freaking out. What’s wrong with me?
Future Me: Okay, well, what’s wrong with you is a terrible fucking disease, so your reaction is actually pretty reasonable. Take some ugly dishes to the alley behind your apartment and smash them on the ground. This is a dividing line in your life between before and after. Your old self is dying and how you saw your future has completely changed. Grieve. Get it out.
MS Secret #2: You don’t have to pretend MS is NBD.
Newly Dx’d Me: Okay. Now what?
Future Me: Finish your meltdown and get ahold of yourself. You need to find a new apartment because your neighbours saw you wigging out in the alley.
Newly Dx’d Me: Thanks a lot.
Future Me: You’re welcome.
Newly Dx’d Me: Anything else?
Future Me: Yeah, stop eating canned ravioli and drinking vodka lemonades. Stop buying bags and pay your student loan. Quit making your mom shake off the MS clinic and answer their calls. Spend at least as much time finding the right doctor as you would finding the right pair of shoes.
MS Secret #3: Get an MS specialist who isn’t condescending. Get on treatment ASAP.
Future Me: If you wanna buy yourself some time, maybe don’t tell your boss right away. There will be changes, but, the people who can tie their identities to their employment don’t have to do anything to figure out who they are beyond that. They never have to ask themselves, “Who am I without this soul-sucking job that I hate career that I worked so hard for and am passionate about?“ Indulge in your identity crisis, then go find a purpose or two.
MS Secret #4: Don’t let other people tell you who you are.
Newly Dx’d Me: I won’t be able to do all the things I used to.
Future Me: It’s true, you won’t. I’m not gonna tell you nothing changes, but I can tell you the best is yet to come. That said, don’t bother showing up to your driving test next month. Get a metro pass and move on. Despite what your mother told you about ‘bus people’, it’s not as bad as you think. Plus this thing called ‘Uber’ is coming.
MS Secret #5: You are adaptable. You get really good at needles.
Newly Dx’d Me: Needles?! What else?
Future Me: You’ll no longer describe an ‘awesome weekend’ as one where you spend all of Sunday chewing on anti-nauseants and sipping ginger-ale while your best friend barfs out her hangover in the bathroom at brunch. This is just personal growth. This will be hard to believe but:
MS Secret #6: Not everything is about MS.
Newly Dx’d Me: Ok, but what the fuck can I do to make this better?
Future Me: First, of all, stop saying fuck.
Newly Dx’d Me: What?
Future Me: Just kidding. But seriously, stop eating canned ravioli, and drinking vodka lemonades. Maybe do a few sit-ups. Go outside.
MS is bossy
MS Secret #7: Control and manage the things you can. Exercise. Sleep. Vitamin D.
Newly Dx’d Me: Why bother? My future obviously sucks.
Future Me: MS is hard, but your future doesn’t suck. Just look at our future hair. And we traded the orange apartment in Steel Town for a loft near a castle. The girlfriend spell didn’t work exactly as planned, but we married that crush. Those raccoons that were living on the fire-escape? They’re dead. Now we have a dog.
Jerk
MS Secret #8: You don’t always have to be grateful things aren’t worse, but you still have a lot to celebrate.
Newly Dx’d Me: Fine, cool hair, but is that a lazy eye? A walker? Are you effing serious?
Future Me: It’s called a rollator, and it’s name is Optimus Prime.He helped you get around Spain. Show a little respect.
Newly Dx’d Me: Ooh, Spain?
Future Me: I’ve said too much. The point is, you’re smart and capable and resilient.
Newly Dx’d Me: You forgot pretty.
Future Me: Obviously.
MS Secret #9: Most of the time, you can handle this.
Newly Dx’d Me: Most of the time?
Future Me: Every now and then you lose your shit, and are impossible to be around. And yet…
MS Secret #10: You’re not alone.
Your best friends and family are there to carry your shit, to drive you places, to listen to your meltdowns. When you think you can’t deal, you give it the The Banker. And when you need to connect with people who really get it, you have a whole tribe of Trippers supporting you.
Newly Dx’d Me: That sounds weird, but I guess, maybe I can do this.
Future Me: You can. You do.
Newly Dx’d Me: Okay, so if you’re from the future, what about lottery numbers, or stock tips?
Future Me: I dunno, I wasn’t really paying attention. Computers?
Newly Dx’d Me: Seriously? Fine. I’ll just take my three wishes then.
Future Me: OMG. Stop touching my belly. I’m not a fucking genie.
OMG, so much of all of this! I didn't go through the massive partying and puking phase of life. I got married at 21 and started early on the whole adult version of "Netflix and chill" (where you actually just veg out on the couch with your SO) thing minus the Netflix, of course.
I did go into full-on freak out mode a time and again (or worrying about waking up and not being able to feel my legs for two full years…but I digress).
It's a bitch of a disease and you give your younger self great advice.
I would add to my younger self: You will learn to roll with it day-by-day. Stop questioning me; you will, I promise.
Oh. That was a good one. You've outdone yourself. I often wonder what it's like for people who were diagnosed so young. I think it would be heartbreaking. But you're a killer example of why I need to change my thinking. I thought I was supposed to be the old and wise one. Unfortunately, I'm just old. Freaking MS has temporarily taken my wise. I'm counting on it coming back. Nice post!
I still freak out every time this disease changes, but you're right exactly. Knowing that I already handled things I never thought I could, helps me to believe I'll be able to handle worse things as they come. Fingers crossed!
Thanks Beth. I think we're given permission to wig out and grieve when we're dx'd and then it's like we expect to just have our shit together ever after. But each time things change, with new symptoms or a new level of disability is reached, it's like getting a new disease all over again. I think if we can properly grieve and deal with each loss or struggle we can get to the acceptance part faster. I dunno. I'm rambling. For what it's worth, I don't think you've lost your wisdom. I think the situation you're in right now merits some drama. xa
As a single man, "newly" diagnosed in middle age, the issue for me is when should I tell a potential partner that I have MS? Yesterday, I had a first date with someone and looming over our conversation was MS. She had just acquired a dog and we talked dog a whole lot. But apparently my dog talk didn't kindle a spark in her because she wrote to me refusing a second date. Added to which I was getting over a cold, so refused to shake hands or hug her. She was an accountant of some sort and I have come to the conclusion that I need to date a nurse or someone with MS. They would know more than me about my illness. I guess my ideal is a MS specialist.
Joe, she refused the second date because you showed up to the first one with cooties. The contagious kind. Not the MS kind. You will soon know more than most docs and nurses do about MS, so just look for someone cute who will play doctor with you if that's what you're into.
Of all your great posts so far, this is one of my very favourites. SOOOO funny and even though I do not have MS I found a lot of wisdom in it for my own life. Thanks so much for doing what you do.
Oh well, this post is so powerful. The line between before and after… Those words: "Grieve. Get it out." For the last 20 years (yes, 20 years), I pretended MS was NBD. I fought, I never accepted it because a neurologist told me it was impossible to accept and I believed him. The day after I read your last post, I decided that was enough, that it was time to let go. This morning, I bought a Rollz Motion and I was so excited (!). And, would you believe this, I am proud of it! At last, I can walk straight and smile at the same time! At the SAQ (our Quebec equivalent to LBO stores), the cashier noted my Rollz saying how good looking it was. Ardra, you're doing such a great job! And you write so beautifully. I wish I could translate your blog in French. It would be free, of course. So many people need to read you. I thank you so much. Merci du fond du coeur, tu me rends la sclérose en plaques acceptable.
I’m so moved by your note and the thought that I could have said anything to help you embrace your own Optimus has truly warmed my heart and made my day. What colour did you pick? You must give him/her a name! I’m very familiar with the SAQ having been born in la belle province and having attended McGill. I even worked as a translator for a time but would have a terrible time translating all the garbage language I use in these posts. That said, it's an interesting idea and perhaps we should collaborate. Shoot me an email,
"El Libertador" is the name of my Optimus, like the name of the huge avenue of Buenos Aires and other cities in South America. In this case, I was not thinking of any General (San Martín or O'Higgins) when I picked that name, it came spontaneously after my first walk out: I felt liberated. And I liked the Spanish word with its rolling R at the end (plus it rhymes with "rollator"). Hey, I could cross a street without thinking: that's it, I will fall in the middle of the street and a truck will run me down. If you know Montreal, you know how rude the drivers can be here. I didn't feel like this little old lady having trouble walking: I felt I was me again. The colour is orange. It was the only one in stock and I wanted it right now. This being said, I like the boldness of this colour, you cannot miss it. I like its sporty look (I used to run 10 km a day, to go cross-country skiing and biking and I miss all this sooooo much now that I can hardly walk). Haha, your "garbage language" is exactly what I am interested in! It would be quite a challenge to render your style, but lot of fun. I will shoot you an email.
Fantastic, as always 🙂 I love reading your posts, and am inspired by your words. I am one of the ‘lucky’ ones, dx at 55. Greiving, the work-a-holic old me, still comes in waves, but more manageable now. Best thing i ever did, was to get a start on the bucket list. 5 days on a sailing ship, climbed the rigging to haul in the highest sail (strong man on each side for safety) and have seen lots of places in Norway (from the passager seat). Bought a små bruk (hobby farm) and am living the good life! Rollater name is Chakraene, manual wheelchair no name yet, electric wheelchair is Tony the Pony 🙂
Yes!!! To be able to tell myself that my life hasn’t abruptly ended at 19 would be life changing. To be able to tell myself not to listen to the first ass-hat neurologist I was assigned to. His advice was to get a sit down job ASAP (I wasn’t showing any mobility issues at the time……my dad almost lunged across the office and deck the butthead). Don’t bury your head in the sand and do all of the research…..learn to be your biggest advocate. Don’t let people tell you your limits.
I would tell myself to get a neurophysiotherapist ASAP. My neurophysio has been a huge part in maintaining and improving my mental and physical state over the past 20yrs.
Just don’t give up. Have your freak out days, but move past and continue on.
ON INSTAGRAM
Back to
OMG, so much of all of this! I didn't go through the massive partying and puking phase of life. I got married at 21 and started early on the whole adult version of "Netflix and chill" (where you actually just veg out on the couch with your SO) thing minus the Netflix, of course.
I did go into full-on freak out mode a time and again (or worrying about waking up and not being able to feel my legs for two full years…but I digress).
It's a bitch of a disease and you give your younger self great advice.
I would add to my younger self: You will learn to roll with it day-by-day. Stop questioning me; you will, I promise.
Needed this today. Thanks Trip. Smile Fierce !!!
Dan
Oh. That was a good one. You've outdone yourself. I often wonder what it's like for people who were diagnosed so young. I think it would be heartbreaking. But you're a killer example of why I need to change my thinking. I thought I was supposed to be the old and wise one. Unfortunately, I'm just old. Freaking MS has temporarily taken my wise. I'm counting on it coming back. Nice post!
I still freak out every time this disease changes, but you're right exactly. Knowing that I already handled things I never thought I could, helps me to believe I'll be able to handle worse things as they come. Fingers crossed!
Thanks for reading Dan!
Thanks Beth. I think we're given permission to wig out and grieve when we're dx'd and then it's like we expect to just have our shit together ever after. But each time things change, with new symptoms or a new level of disability is reached, it's like getting a new disease all over again. I think if we can properly grieve and deal with each loss or struggle we can get to the acceptance part faster. I dunno. I'm rambling. For what it's worth, I don't think you've lost your wisdom. I think the situation you're in right now merits some drama. xa
Love this, Ardra! So well written and funny. Your positive attitude and spirit will keep you afloat on this crazy MS journey. Thank you for sharing!
Brillant! Great post! Oh, Spain? And you had me for a second with #6…
As a single man, "newly" diagnosed in middle age, the issue for me is when should I tell a potential partner that I have MS? Yesterday, I had a first date with someone and looming over our conversation was MS. She had just acquired a dog and we talked dog a whole lot. But apparently my dog talk didn't kindle a spark in her because she wrote to me refusing a second date. Added to which I was getting over a cold, so refused to shake hands or hug her. She was an accountant of some sort and I have come to the conclusion that I need to date a nurse or someone with MS. They would know more than me about my illness. I guess my ideal is a MS specialist.
Thanks for reading Michelle!
Sometimes it's about MS. Sometimes it's about pizza. Or which Justin is the hottest.
Joe, she refused the second date because you showed up to the first one with cooties. The contagious kind. Not the MS kind.
You will soon know more than most docs and nurses do about MS, so just look for someone cute who will play doctor with you if that's what you're into.
Of all your great posts so far, this is one of my very favourites. SOOOO funny and even though I do not have MS I found a lot of wisdom in it for my own life. Thanks so much for doing what you do.
Oh well, this post is so powerful. The line between before and after… Those words: "Grieve. Get it out." For the last 20 years (yes, 20 years), I pretended MS was NBD. I fought, I never accepted it because a neurologist told me it was impossible to accept and I believed him. The day after I read your last post, I decided that was enough, that it was time to let go. This morning, I bought a Rollz Motion and I was so excited (!). And, would you believe this, I am proud of it! At last, I can walk straight and smile at the same time! At the SAQ (our Quebec equivalent to LBO stores), the cashier noted my Rollz saying how good looking it was. Ardra, you're doing such a great job! And you write so beautifully. I wish I could translate your blog in French. It would be free, of course. So many people need to read you. I thank you so much. Merci du fond du coeur, tu me rends la sclérose en plaques acceptable.
Most lovely Emily, thank you so much for your faithful readership. I'm so happy to hear you get something out of my rantings and ravings!
Salut Marie,
I’m so moved by your note and the thought that I could have said anything to help you embrace your own Optimus has truly warmed my heart and made my day. What colour did you pick? You must give him/her a name!
I’m very familiar with the SAQ having been born in la belle province and having attended McGill. I even worked as a translator for a time but would have a terrible time translating all the garbage language I use in these posts. That said, it's an interesting idea and perhaps we should collaborate. Shoot me an email,
Ardra
Hello Ardra,
"El Libertador" is the name of my Optimus, like the name of the huge avenue of Buenos Aires and other cities in South America. In this case, I was not thinking of any General (San Martín or O'Higgins) when I picked that name, it came spontaneously after my first walk out: I felt liberated. And I liked the Spanish word with its rolling R at the end (plus it rhymes with "rollator"). Hey, I could cross a street without thinking: that's it, I will fall in the middle of the street and a truck will run me down. If you know Montreal, you know how rude the drivers can be here. I didn't feel like this little old lady having trouble walking: I felt I was me again.
The colour is orange. It was the only one in stock and I wanted it right now. This being said, I like the boldness of this colour, you cannot miss it. I like its sporty look (I used to run 10 km a day, to go cross-country skiing and biking and I miss all this sooooo much now that I can hardly walk).
Haha, your "garbage language" is exactly what I am interested in! It would be quite a challenge to render your style, but lot of fun. I will shoot you an email.
Loved this article, your humour shines through 😉
Thanks for reading Sheryl!
Fantastic, as always 🙂 I love reading your posts, and am inspired by your words. I am one of the ‘lucky’ ones, dx at 55. Greiving, the work-a-holic old me, still comes in waves, but more manageable now. Best thing i ever did, was to get a start on the bucket list. 5 days on a sailing ship, climbed the rigging to haul in the highest sail (strong man on each side for safety) and have seen lots of places in Norway (from the passager seat). Bought a små bruk (hobby farm) and am living the good life! Rollater name is Chakraene, manual wheelchair no name yet, electric wheelchair is Tony the Pony 🙂
Thanks for reading, Carol Ann. It sounds like you know how to party!
Yes!!! To be able to tell myself that my life hasn’t abruptly ended at 19 would be life changing. To be able to tell myself not to listen to the first ass-hat neurologist I was assigned to. His advice was to get a sit down job ASAP (I wasn’t showing any mobility issues at the time……my dad almost lunged across the office and deck the butthead). Don’t bury your head in the sand and do all of the research…..learn to be your biggest advocate. Don’t let people tell you your limits.
I would tell myself to get a neurophysiotherapist ASAP. My neurophysio has been a huge part in maintaining and improving my mental and physical state over the past 20yrs.
Just don’t give up. Have your freak out days, but move past and continue on.
This article is great! Really helpful
I’m newly diagnosed and needed to hear this 🙂