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Pity Party: In Which A Children’s Book Provides a Valuable Lesson

Something awful happened at work today. I have already blogged about its horrors (and, wow, are they horrible), so there’s no need to rehash. I kept my shit together (*rim shot*) enough to gather my things and uber home. Once there I threw myself a pity party featuring a long bath with a fancy Australian sachet I’ve been saving for nearly a year, two Cokes, and a lot of ugly crying to This Is Us, which is ridiculously emotionally manipulative and just what the doctor ordered today.

It’s been ages since this sort of thing happened to me, and I’m shaken. I’m also tired, angry, and frustrated. But I’m going to do my core workout, make dinner, and remember the message of Lily’s Purple Plastic Purse.

Today was a difficult day. Tomorrow will be better.
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I’m an Asshole, Too: In Which I Nibble On Some Crow

I recently found myself in the elevator with someone high up in the organization I work for. We don’t know each other, but we’ve exchanged pleasantries before. A hello, how are you, nice weather — office chat. That day was different, though, because he had a large, complicated sling with a padded wedge holding his arm at a specific angle off of his body. I felt it required acknowledgement but didn’t want to be so bold as to ask what happened. So what did I say?

“Well, that’s a bold new accessory!”

And as I did so, I realized I’m an asshole, too.

I don’t think I offended this gentleman or that I was out of line. I definitely was participating in the sort of jokey, vague comment that I complained about in my last post, though.

I try to greet the awkward/repeated comments of strangers/acquaintances regarding my scooter in the spirit in which they’re offered — a way of acknowledging my situation through friendly small talk. Within 24 hours of my last post a security guard said “I like your Mercedes!” and I replied with a breezy “Just three payments to go!” That’s harder to do when someone makes the same “I wanna go for a joy ride!” joke week after week, but perhaps I should try.

***

And while I have feathers in my mouth . . . 

Hidden disabilities are real and should be respected. It’s been ages since my disability was hidden. I bought a cane in 2010 for extra MS Walk support and have been using one regularly for the last six or so years. People might wonder what my disability is, but no one seeing me navigate even a short hallway on foot would mistake me for able-bodied. Lots of people with MS wear it more subtly than I. And while they may be able to cross a room gracefully, they also may suffer from terrible fatigue, pain, or a host of other issues that make handicap bathrooms and parking spaces helpful.

Outside of the MS world, there are many conditions from chronic fatigue syndrome to Fibromyalgia to bum knees that may require special accommodations. I am pretty quick to give the side eye to someone who uses handicapped facilities that isn’t up to my standard of perceived need. I’m a Judgy McJudgerson (on many more issues than just this), and it’s not one of my best qualities.

Bottom line? We should all try to be a little kinder and acknowledge that there is suffering that we cannot see.

(That said, I’m pretty sure Daily Toothbrusher just likes her privacy.)

***

And, finally, a wee bit of vindication.
This is what happens when a handicap entrance button is overused.

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Oh Shit: In Which We Learn That Fecal Incontinence Will Not Kill You (No Matter How You May Wish for Death’s Sweet Release in the Moment)

As many of you know, Neal and I used to run a trivia night on Capitol Hill. Its original incarnation was at the Pour House, a Pittsburgh-themed bar that was a very doable half mile walk from our home. A dear friend was in town visiting, and I was thrilled to share my local celebrity status with her (oh how they used to cheer when Neal said, “Helping me, as always, is the lovely and talented Score Babe, Rebecca!”). We delighted our guest with music selections and trivia tailored to her interests. The three of us stuck around for an extra round of Yuengling after the game was done. A good time was had by all.

Initially.

There were blessings to count. 1) I was with two people who had proven their unconditional love for me many times over and would be nothing but kind about the incident for years to come. 2) No one else was around. 3)  We were a short walk away from a hot bath and a change of clothes.

There is no need to go into detail about the physical horrors of the experience. We are all familiar with excrement and its qualities. I hope you are not and never will be familiar with being an adult who has lost control of her bowels in a public place. For all of the physical unpleasantness, the mental toll is much, much worse. When the last, increasingly uncomfortable steps brought us to the house, I rushed straight to our downstairs half bath, locked myself in, and sobbed uncontrollably. Was this my life now? Was I going to live in constant fear of the next pants-shitting? Would I need to limit my diet to cheese and other binding agents to ensure this never, ever happened again?*

Pajamas were brought from upstairs; soiled clothes were bagged and put in the trash outside. My sweet husband was convinced we could save the jeans, but I was having none of it. My well-meaning house guest told me about the time the same thing happened to her when she was younger and had the stomach flu. In spite of the impulse to do so, I did not scream, “STOMACH FLU DOESN’T COUNT!!!” I was too demoralized to do much but sniffle and nod. When I eventually shared my experience with other close friends, they too were empathetic and a little tone deaf, sharing stories of drunken GI mishaps. Didn’t they understand? A drunk college kid shitting their pants is hilarious. A moderately tipsy young woman doing so is tragic.

The bad news: incontinence has visited me multiple times since that Tuesday a decade ago, and it sucks every time. The good news: I have a great gastroenterologist with a sense of humor, which is even more valuable  than a funny name. He taught me about Runner’s Diarrhea (apparently it’s not just for runners anymore!) and strategies for avoiding such embarrassments. While I’m not sure that this particular hardship that hasn’t killed me has made me stronger, it definitely has made me more resilient, and resilience is key to surviving chronic illness. So I’ve got that going for me.
 

*This joke did NOT occur to me until many years later. Tragedy + time = comedy.

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Diagnosis, Part One: In Which No Diagnosis Is Given)

Picture it: Washington, DC (or, more accurately, Arlington, VA), 2004. Neal and I are getting groceries at Shopper’s Food Warehouse for the Superbowl Party we’ll have that night. My stomach is acting funny, so I make repeated trips to their sad, stinky little bathroom. Sitting under the fluorescent light I noticed my feet were asleep. Both of them. Full pins and needles. Weird, right? But I stood up fine and walked okay, so I got on with buying avocados and chicken wings. Football snacks do not make themselves.

janet-jackson-2004
Wardrobes were not the only things malfunctioning that year!

In the weeks that followed, the pins and needles persisted, subsided some, and then moved to my thighs, torso, and eventually settled in my arms and hands. Neal was a little worried, but I shrugged it off. In high school I’d had a numb-ish forearm for months that was attributed to a pinched nerve in my elbow. In 2002 I had spasms that distorted the right side of my face and were alarming to see (sorry, Neal!), but they didn’t affect my life much and also disappeared on their own. Surely this bizarre traveling carnival of mild discomfort would leave of its own accord, too.

The arms bothered me more than my condition’s previous residences. This was in the dark days of my career, when I was an executive assistant at a government relations consulting firm, typing long, poorly written memos from my boss with whom I shared few political stances and even fewer ethical ones. My typing speed was lightning fast (thanks, college all-nighters!), but the semi-numbness made my hands clumsy. Worse, it was impossible to find a comfortable position for sleep. I self-medicated with Benadryl and other OTC sleep aids for a week or two to no avail before calling the doctor.

Since I was 27 and invincible, I did not have a GP. I’d always been dedicated to taking care of my ladybits, but the rest of my body? Who has the time! Thus, I found myself scanning my insurance company’s listings and settling on Dr. Van Damme. Who wouldn’t go to Dr. Van Damme? (Sidenote: there are undoubtedly better ways of picking doctors, but I often go for humor. My current gynecology practice was chosen the moment I learned Dr. Rebecca Bush was a partner. If that isn’t destiny, I don’t know what is.)

Alas, Dr. Van Damme exuded none of the strength and confidence of the movie star sharing his surname. His waiting room was dark and tiny; the exam room was a jumbled mess of papers and boxes with blunt, bold labels (the words “PLASTIC VAGINAL SPECULUMS” haunt me to this day). His bedside manner was that of an unfunny Woody Allen. He heard my tale, took my vitals, and shrugged, suggesting I see a neurologist. I left frustrated that relief wasn’t in the near future yet relieved that I’d never have to visit him again.

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Let’s Do This

This blog exists for two reasons: to encourage me to flex my writing muscles and to share a little about what life MS is like . . . for me, at least. I’ll document fun procedures like bladder Botox injections, share some of my Strategies for Success (Neal’s coinage, which is accurate but somewhat gag-worthy), review various stores’ mobility scooters, and bitch just a little.

A word of warning: there will be candor. If you’d rather think of me as a classy lady who’d never discuss her own bodily functions, please do not follow this blog. (Also, clearly we haven’t met.) If you can take the occasional overshare, do join me on this journey. 
The coolest borrowed scooter ever – at Zealandia in Wellington, New Zealand.