MS And The Fear Of Losing Independence
My latest MS meltdown happened inside a trendy motel in the middle of nowhere Northern Ontario. The Banker and I were on a 2-day mini-break, but the break I really needed was from my body, and my body was like, “Yeah, that doesn’t work for me. I’m saving up for one of those tiny Lizzo bags, so I’m actually working overtime. I’m on my way downtown right now to see if we can’t squeeze in another UTI. See you at 3 am for our nerve-pain appointment! 😘 ttfn! Just kidding! It’s time for your leg to spasm! PAY ATTENTION TO YOUR BURNING FEET!”
Anxious about my incapacity to do anything remotely vacation-y and feeling guilty about spending money just to lie around and look at four different walls, my headspace was primed for a freakout 45 minutes after The Banker had not yet returned from picking up dinner at a restaurant 3 minutes away.
The obvious move would have been to text ‘u alive?’, but my phone was being charged on the other side of the king-sized bed. If you’re like, ‘just scootch over and grab your celly,’ congratulations; your body works better than mine. Retrieving my phone would have meant pushing myself up into a sitting position, using my arms to swing my legs off the edge of the bed, standing up, and using my rollator to lumber stiffly to the other side. What should take 4 seconds would have taken me 2 minutes, and maybe 2 minutes doesn’t seem like a long time to you (congrats again), but according to a math website I just consulted, 2 minutes is a 2900% increase in the energy it would have required me to spend in order to secure peace of mind.
I decided to weigh the risks instead
On the one hand, The Banker is slow (not like stupid-slow, he just lives in his own decelerated time zone and talks to absolutely everyone). He also sucks at directions, even with gps. In all likelihood, he had accidentally taken the scenic route or was chatting with the restaurant staff.
On the other hand, I was in the mood to fuck myself up.
Maybe he got hit by a falling icicle in the parking lot. What if a bear, emerging from hibernation, attacked him for his take-out? Had he picked up a hitch-hiker, only to realize they have a lot in common, now they’re best friends on a cross-country road trip and he’s forgotten all about me?
I was spiralling. Bears probably don’t even like Pad Thai, but 15 people in America are killed by falling icicles each year. I didn’t have time to dwell on The Banker’s unfortunate fate because my brain was telling me it was time to switch gears and trouble-shoot this catastrophe.
Independence Day
I imagined getting a phone call: Ma’am, we found a man lying in a parking lot in a pool of water. We need you to come immediately. We’ve got a bear here, says he’s allergic to peanuts so obviously he didn’t attack anyone for their Pad Thai. Also, a guy with a stick and bag tied to the end of it. Name’s Scoffpossum. Says he’s next of kin.
I don’t drive. The town didn’t seem big enough to have Uber. Even if they had Uber Tractor or Uber Snowmobile and I somehow managed to get to the scene of the incident, what then? How would I get back home to Toronto? I’m not strong enough to put our luggage in the car. I’m not even strong enough to walk the dog, who was reading this situation and staring out the window desperately trying to manifest The Banker’s return.
Miss (no longer) Independent
I felt incapable. Three hours from home, trapped in a motel, Misery-style; but in this version, MS was my Kathy Bates. I felt like a child, and not even the child-version of myself, because I was a pretty self-sufficient kid. Like one of those Japanese kindergarteners who takes the subway and does the family’s taxes.
I am grateful to know that there are people who are more disabled than I am who CEO their own lives, organizing and managing their care with agency and authority, who feel empowered for doing so. I know that I am an intelligent, resourceful adult and that given time to sort shit out, I would be able to make sure the dog was safe, that there were groceries in the fridge, that the bathroom was clean enough. Being bossy and in charge is kind of my thing.
If an emergency had occurred, people would have helped me. Just different people from the person who already helps me the most. My MS progression has been slow and insidious. The list of tasks The Banker helps me with didn’t materialize all at once, but gradually; somehow making it easier for me to convince myself that I am more independent than I actually am. My meltdown was a reality check. Being disabled means needing help is inevitable. My Doomsday preparation plan needs to include being comfortable receiving help.
Easier said than done
Culturally we associate dependence with being weak and powerless, a burdensome problem for someone else to solve, while independence is seen as not just a goal or a lifestyle, but a virtue. We talk about earning a living as if being alive doesn’t automatically grant us the right to exist. Quality of Life questionnaires quantify satisfaction by how independent we perceive ourselves to be. We try to trick the old and infirm by using palatable language that reinforces the need for self-reliance. “Independent living” is a marketing slogan that, like “anti-aging” only reinforces our fear; a reminder of what we’re trying to avoid. Self-sufficiency is appealing, but why? How can we decide that ‘don’t rely on anyone, you can only count on yourself’ is the best way to be when each and every one of us would die without the ability to rely on others?
Receive help like a Queen
True independence is a myth. You know who gets a lot of help? Oprah. Mariah Carey is probably the least independent person on the planet. Instead of branding independence as an inherently desirable trait, why not take a more neutral approach? Or get rid of the word entirely and replace it with what it really is: interdependence. We all need each other and we all have something to offer.
“No one can be independent of other people completely, so why not give up the attempt, she thought, go running in the other direction, depend on people for everything, allow them to depend on you, why not.” -Sally Rooney, Normal People
It takes grace to ask for help and to receive it, but it’s more than that. Being disabled forces me to be vulnerable, to mitigate a degree of defenselessness, and to have faith that others will have my best interest at heart. Figuring out how to comfortably receive help is not a choice, it’s a survival skill.
On the pod!
This month’s episode is a cheeky mix of fact and fiction as Alex and I take a deep-dive into 10 of the biggest myths about MS. Watch the episode here or wherever you get your pods. We 🖤 your subscriptions and reviews!
PS The Banker is fine. The restaurant effed up his order and he had to wait. Scoffpossum may or may not show up at Thanksgiving dinner.
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In my case, losing independence came on slowly. I was fortunate. At 71 though I’m still living independently. Don’t give up the ship. Ever!
I’ve been on my very own for 12 years. My mantra is : Never give up! Almost 70 .
((HUGS)) Love this article..
Learning lessons about ourselves, never ends.
Love you and your fam.
<3
You described my life the last week while my hubby had COVID. We have 2 Doodles who were both also under the weather, so I was the healthiest one in the house. That gave my son a reason to laugh! It’s amazing what we can do when we have no other choice, but the time and energy it takes me to do a task is tenfold what it takes others. Your description of what it takes to reach for the cell phone is spot on, and it made me smile, only because I know I’m not alone in the struggle. Praying the banker stay safe from bears!
This post showed up just in the moment I needed it. Thank you! I have been kicking the ‘fear of dependence’ can down the road for over a year and lately it has been bearing (sp?) down me. You perspective really helped to alleviate a bit of the suffocating feelings. I know I’ll figure it out and you will too! Cheers, Queen!
Aidra-this really hits home. Not good at asking for help. Need to learn this. I fell a few months ago and cracked some ribs. Not a huge deal but could have been worse. Not really good at giving up what I used to be able to do. Hang in there.
Great piece. I like the point about independence, and our society’s simplistic interpretation of the word.
Hey Ardra,
“Tripping on Air,” what a fabulous title! Your humor and writing style are definitely infectious. Kudos. I’m working on a catchy title for my book due to be published in 2023. My MS diagnosis took place in 1958, two months after high school graduation at 17. During those 65 years, I taught English, music and/or reading for 30 years, opened a small business private piano studio in our home for 20 additional years, and freelance writing since 2015 for my third career. Since Christmas, I have been writing about book about the 12 strategies I used to enable me to live a successful life working life while battling the demon MS. I started a blog on substack.com: “Judigail Jabbers”, write on Medium.com as Judith Norris, my website, judithnorris.com is being renovated at this time, back soon. Look forward to talking with you. Cheers, Judith
Thanks for reading, Judith. You sound like a master of reinvention. Congrats on your book and please keep us posted! I look forward to checking out your substack!
Oh Ardra … ooooohh you did it again! Another brilliant read. Interdependence doesn’t come easily! Nor is it in our vocabulary. I like to say it’s because we are stubborn. But not just regular stubborn. Nope! We are fiercely stubborn! Sounds so much more badass. The fear of dependence is a constant battle we face. I think choosing to not give in is what sets us apart from the rest. Somedays it’s working for us, and somedays we just need a rant and meltdown. It’s totally cool cause we have each other . Thank you for this xoxo
Thanks for commenting, Teresa. I think part of the vocab problem is how we branded co-dependence as toxic (I feel like this was a 90s thing?). For so many of us, choosing not to give in means not asking for help, but I think most often, the opposite is true. We can only keep going if we can ask for and accept help.
I keep wondering about my condition. Is my getting up from the sofa and wandering over to eat chocolate, while forgetting the book I had planned to get, a symptom of RRMS or a condition of old age? Is my reluctance to get up and brush my teeth, due to my laziness or somehow related to RRMS? I’m at theatre school right now. In my movement class this morning, all the younger students effortlessly jumped rope while I either stepped on it or was hit by it. What does it mean?
I avoid drinking fluids so I can avoid the half hour trip to the bathroom then everything gets worse because I am dehydrated. I certainly feel you. I get so frustrated when I’m helpless that I create more problems because I fall into despair and decide I’m done. Then 24-48 hours later I wake up angry that I still wake up. Miserable cycle.
Ardra, you never fail to make me smile…even when you’re describing something bad.
To someone without a debilitating condition, your rant probably sounds like hyperbole. But to someone with MS, it a perfect description!
I have the same situation –a clock radio on the far side of the bed (that I haven’t used in years) is flashing after a power outage.. months ago. But since I can only get up on one side of the bed, using a “bed loop” to pull on to sit up, getting to the shelf on the other side of the bed using a 10 minute journey.
It may be a little thing, but the “little things” add up to a major f***ing frustration.
FUMS!
Very funny Ardra! I’ve been reading your posts for years and you always make me laugh. Very important with this crazy disease. I’m an avid podcast listener and will check out yours. Keep on making us smile!
xo
You always hit it spot on!!! Thanks for making me feel okay about this @##$ MS
Ardra,
I always relate to your situations, but this one REALLY hit home. I too make up crazy scenarios in my head when I’m in a situation that I have no control over. I count how many steps to open the door for my dog outside the bedroom, do I need to throw that trash away and take those extra precious steps on my very unsteady legs, even when using my cane…I convince myself that I am the only one who does this, but then I read your posts and am weirdly comforted that I am not the only one. Thanks!
#FUMS
Were you in my brain? I hope not for your sake. Or more likely, a number of us think alike. Between the ‘this would be 2 seconds’ for someone with full mobility to the full swing of ‘why is he not back, oh dear god an air conditioner fell on his head and someone stole his wallet and no one will find me’ brain spiral. I felt that whole moment with you. But also THANK YOU for calling out what I feel like. I have never read before: how being dependent on others is made to be so shameful. Is that just for folks with disabilities or the elderly? Where does ‘it takes a village’ when raising a child come in? Who makes these rules and can we give them a good shake? Either way, again, thank you, for your writing and making me feel seen and laugh/cry every time.
I hear everything you’re saying Ardra !
I wished we could have a vacation from MS.
But even so we need to change it up a bit from time to time. Even if it takes three days to recover… or more like never. It’s our lot in life, no choice but to roll with it.
I can relate to this article on so many levels. Especially getting the phone!! My most used sentence is “can you help me?” MS is sucky. I’m lucky to have my own “banker”. The list of things he helps me with keeps getting longer. Thankful to you for making me feel less alone.
Hey Ardra !
I hear everything you’re saying and can relate.
I guess it’s true that “misery loves company”
because I feel in great company here!
Thanks for putting all this great work together , and just know how comforting it is to read.
“The Banker and I were on a 2-day mini-break, but the break I really needed was from my body.” This captures everything about MS – you never get a day off. My wife loves holidays 3-4 a year. A week or so before she says “aren’t you looking forward to it?”. I say yeah I am. In reality, it’s just transporting me and my MS issues 3,000 miles away. I can sit on a sunbed, but have to watch the couples heading off to play tennis, watch the afternoon volleyball game on the beach, or see the joggers sweating profusely as they run up the steps to get breakfast (by the way, I’m very bitter about getting MS). God do I hate steps in tropical hotels. The money I could make if betting companies took a wager on lifts in my hotels being out of action. Don’t even get me started on the airport mobility services eg the golf buggies to the departure gate. The services are excellent and the people are always lovely, I just hate being the unlucky bastard who can’t walk the 15 minutes to gate 38. The pharma companies keep coming up with anti-relapse drugs, but all I want is a treatment to stop progression and let me build on what I’ve got left.
I hear you. My husband does all the things—agency, authority, and empowerment…Pfttt. That was another life.
Your story somehow reminded me of a daydream I had the other day.
Whenever I watch a movie, I try to figure out which character reacts like I would given the plot. Recently, while watching a zombie movie, I realized I’d be the old skeleton in the random house being rummaged through after the apocalypse. You know, the lady who suicided before the movie even began because she couldn’t outrun a snail, much less a zombie. FUMS. I want to be that chick with the machete, not some random corpse rotting in the corner.
I have laid on the bed watching mindless TV for hours wishing I could change the channel while the remote was mocking me from the night stand on the other side of the bed.
I’ve developed a rare appreciation for the last 20 minutes of whatever dumb show my partner was watching before he left the room.
A very interesting pod.
Paragraphs 1 and 3 hit me like a one-two punch! And then I immediately forwarded them to my partner.
It’s a drag that you get it and that I identify with it – but boy, am I glad I found you.
Clearly nothing else will get done today until I’ve devoured the rest of your blog.
Keep on keeping on!