rebeccascott

Sorry-Grateful: musings on loss of independence (now with random pop culture references!)

This summer has been particularly challenging for me with each new discomfort kicking off another round of my favorite game show “Is this MS? Is this middle age? Is this menopause?” Followed by the unwin-able bonus round “Is this forever???”

brightly colored image from tv game show called Gam Changer
Dropout.tv brings joy to even the toughest days, and this episode of Game Changer is especially hilariously delightful.


As you likely know, I am quite comfortable with the traditional F-word and its variations. Forever scares the fuck out of me, though, when I consider my dwindling independence. For weeks now I’ve needed Neal to help hoist me to a seated position when it’s time to leave my lovely, soft, safe bed. Then he must hoist me to a standing position. On the worst days this is followed by an escort to the toilet not quite 10 feet away from the bed, complete with another poist-pee hoist to stand and bonus under/pants hoisting. (Sexy!) After too many falls en route to the kitchen, I have learned to submit to a wheelchair ride to breakfast as well.

When it’s time to get dressed, sometimes I go into toddler mode, with Neal pulling my arms through my shirt—or, even worse, pulling the whole thing over my head complete with a singsong “Where’s Becca?!” To his credit, he almost always resists this urge. When I feel confident, I attempt the shirt bit myself, either succeeding or getting stuck partway through, which inspires me to shout “I am the great Cornolio!” (Because I am a slave to 90s pop culture.) That’s Neal’s cue to release me.

Cartoon figure with head stuck in his t-shirt head opening
This is a screen grab from the MTV series Beavis & Butthead, which my 10th grade boyfriend *loved*, much to my dismay.

Instead of death by “Neal could you please”, which has become so common I hardly notice it, life is now death by “sorry” and “thank you”, both of which come out of my mouth so automatically it’s often nonsensical.

We’ve found some things that help me function. Keeping the thermostat at a nippy 68 degrees Fahrenheit and having a steady supply of ice water (a necessity for *any* southerner, really) keeps my body in better running order. Why? Well, MS causes the immune system to chow down on the myelin sheath, which insulates the nerves in the central nervous system, causing impulses to go through less smoothly. No bueno. Add heat to the equation, and the impulse conduction gets worse. Even less bueno. So doing things to cool off definitely improves matters.

(Here’s a video from one of my favorite MS rockstars, Dr. Aaron Boster, describing all of the above more eloquently.)

Another thing that has encouraged some of what I’ll call my independ-ish is the new baby in our condo building. No, the one-month-old does not have super strength, but her parents specifically saying, “Please let us know if you need anything,” during a recent visit means that as long as I can army crawl from wherever I am in the condo to unlock the door I do not have to spend the whole day on the floor. And the new parent neighbors reminded me that our other neighbors are former professional cheerleaders. You know who is very good at lifting ladies? FORMER CHEERLEADERS! GOOOOO CONDO!

P.S. Y’all, my neighbors are the kindest. They lift me up *and* refill my water. What more could a girl ask for?
P.P.S. You know, except for a fully functioning body.

I never saw Private Benjamin, but this is what I pictured as I dragged my lower half along the hardwood floor. Sadly, I was not as cute as Goldie Hawn.

REMINDER: I’m now on Substack and tend to post there first and more frequently. It’s free and easy to join. And if you’d rather stay here, that’s okay, too. xo

rebeccascott

Disability… Pride?: In Which I Whine, Share a Tool, and Find Some Pride

It’s Disability Pride month, and I’ve been putting off writing, thinking, and doing anything about it. Why? Or, to put it in coaching terms, what barriers are preventing me from taking action?

Denial. And the knowledge that I can’t deny it anymore.

I received the news (confirmation, really) that I had moved from Relapsing-Remitting to the Secondary Progressive stage of MS from a neurologist I’d just met several years ago. I was gobsmacked in spite of a rational corner of my brain whispering, “When exactly was the last time you remitted?” When I spoke to my usual neurologist about it, he waved it away, crying, “Semantics!” And I believed him. Until now.

Facing Reality

Now I find myself in a new state. Each small step up (into the house, onto our parking pad) is a struggle. I spent 10 minutes trying to get up off the bedroom floor after a small collapse* recently before giving up and awaiting my knight in shining pajamas. He got me to my feet only to have my legs say “no thank you”. So I was hoisted onto the bed where I lay in an awkward, dejected heap.

These moments happen more and more. My fabulous new purple Rollz rollator moves a little too fast, and I bend at the waist without the core or arm strength to right myself. The muggy heat hits me so hard, I can barely wobble to the car with a cane and an escort, leaving Neal to lift my legs in and close the door. Some days it’s hard to stand long enough just to brush my teeth.

Blame Game & the What-ifs

I spend a lot of time these days cycling between who-can-I-blames and what-ifs.

  • My doctors didn’t do their jobs! Why did no one emphasize the importance of exercise from the moment I was diagnosed?
  • What if I’d kept up with the workouts LaTasha gave me? 
  • The pandemic made me weaker! And Neal made me soft! Having him around and insisting on doing things for me has made me less independent.
  • What if I’d done my physical therapy exercises regularly since the first time I went?
  • I am so damn lazy! If I tried harder, I’d be stronger.

You get the idea. By the end of this cycle I’m angry, weepy, and fantasizing about the time machine that will take me back to when dance classes were possible and making past-me buy a lifetime pass to Joy of Motion. Would it make any difference? Who the fuck knows? I sure would have had fun taking Afro-Brazilian classes, though.

Here she is… Ms. Disability Month!

Worst Case. Best Case. Likely Case.

When I’ve exhausted my fretting about the past, I look to the future… what does it hold? Another decade of Neal hauling my ass off the floor before we have to hire a health aide when I’m only 54? More time in a wheelchair? ALL of my time in a wheelchair? And what about my brain?! When will it turn to complete mush? When will I no longer be able to put depressing/inspiring words together to share with the world?

There’s a cool and simple framework for reeling in catastrophic thinking like this that I learned at the Capital Coaches Conference from Dr. Karen Reivich’s keynote address. So here goes.

Worst case: I’m confined to a wheelchair tomorrow.
Best case: My strength and balance improve so that I can walk and do daily activities independently.
Likely case: My slow decline will continue. Slowly.
Purposeful step: Commit to 10 minutes of physical therapy daily.

I’ve wept through writing most of this blog, but typing the above settled me. A small purposeful step can do wonders, and I think this one is doable. Especially now that you’re all my accountability buddies. Email me! Text me! Check in on whether I’ve done the PT. 

Finding Some Pride

AmeriDisability has this to say about Disability Pride Month:

“Using bold images and strong words, disability pride awareness dates, parades and festivals both uplift and challenge. Pride comes from celebrating our heritage, disability culture, the unique experiences that we have as people with differing abilities and the contributions that we offer society.”

I have not gone gentle into my disability, and I feel like an asshole whining about the possibility of wheelchair confinement while writing about disability pride. I have at least nailed the “strong words” part of the celebration, and I’m feeling pretty proud of these “unique experiences” and “contributions”:

  • Speaking candidly about my life, which I hope allows those with MS to feel less alone and those without MS to see the world a little differently
  • Representing the disabled community with good humor while challenging the rest of the world to do better


So happy Disability Pride Month! I’ll be celebrating from my fancy new toilet.

A raised toilet seat?! WITH grab bars?! You shouldn’t have!


*A collapse = “Oh shit, can’t stand anymore, let’s melt to the floor, shall we?” A fall = “Welp, I guess I’m going down! Protect the face!”