It’s OK That My New Year’s Blog Is Posted in February: In Which I List Other Things I Learned in 2019

Being both a nostalgia whore and a planner, I adore the change from one year to the next. New Year’s Eve as an event ceased to be fun when close friends moved too far away for quietly drunken nights in together. Now I immerse myself in reflection instead. I scroll through photos on my phone. I sort through the basket filled with cards received and Playbills from shows seen. And I think about what I’ve done and what I hope to do.

a pile of cards and Playbills
A basket of memories, 2018-2019.

In my reflection, I realized I have learned some things that might be useful to folks with chronic illness–and even a few tips for you healthy people.

1. Go easy on yourself.

You may have noticed that I don’t blog regularly (hi, Patrick!). I started this post New Year’s Eve and have thought “Damn it, Rebecca! Just finish it already!” repeatedly over the month. When I can fit in only one Pilates session a week, I think “Damn it, Rebecca! Even for someone with MS, you’re a lazy blob of humanity!” Too tired to finish dinner prep? “Damn it, Rebecca! If you’d planned better, you could have done this without help!” There are kernels of truth in each of these statements of self-abuse, but focusing on them neither helps me exercise nor gets dinner on the table. So I’m leaving self-damning behind and doing my best to accept my limitations without discouraging notes from my internal peanut gallery.

2. Don’t apologize.

Okay, I don’t mean NEVER apologize. I didn’t become a jerk in 2019. Apologies have their place, but that place does not need to be a permanent residency on my lips. If I move awkwardly through a crowded room, I smile and say “excuse me.” If I step on someone’s foot in the process, I apologize. I would never expect someone else with a disability to say “Sorry!” to me, so why on earth should I expect it of myself?

3. Ask for what you need.

I’ve spent a lot of time grumbling about being placed in the back of planes in spite of having declared a disability and requested assistance getting from gate to gate. Should that trigger a “hey, give this lady an aisle seat near the front of the aircraft” notification in the system? Yes! But we aren’t there yet. Airlines have numbers you can call to ensure your needs are met. You may have to call regular customer service first to get that number. Once you have it, save it in your phone and use it.

On a more quotidian note, I exhibit fierce independence usually seen only in toddlers determined to pour orange juice from big jugs into their tiny cups. I want to do everything MYSELF, even at the risk of my safety. After one too many burned hands and sloshed waters, I have humbled myself to bravely ask strangers (without apology!) to carry things to my table for me at restaurants. And they’re happy to do it.

4. Find and embrace things that make life easier.

Perhaps the biggest revelation of 2019 was my discovery of True & Co. bras, many of which have no clasps! Plus, they’re pretty, flattering (no uniboob, a usual risk with this style), and comfortable–even for those suffering from the dreaded MS Hug. Being able to put on a bra on my own is the smallest of victories, but eliminating little frustrations gives me a greater chance of making it through the day happy.

5. Make peace with your body.

Years ago my massage therapist Laura suggested I ask my legs what they need. Although I have yet to get a clear answer from any of my body parts, I have changed the way I talk to them. (Sensing a pattern? A+!) Uncooperative legs used to get an audible “Fuck you legs! Pull it together!” Now it’s much more of a calm “You’ve got this. You are strong, and you can do it if you go slowly.” I often feel ridiculous hearing myself utter this sort of positive self-talk, but I’ve realized that taking an adversarial relationship to my body–and, for that matter, my disease–does not help. I’m not sure that kindness makes me stronger. It does make me feel slightly less shitty, though, and we could all use more of that.


Totally Not Defying Gravity: In Which We Learn About Life from the Perspective of the Fallen

I fall down. A lot. As you can read here, there are many reasons why people with MS have trouble walking. Me, I experience foot drop on my left side, which causes me to trip over my own feet. My balance isn’t great, nor is my energy. All of that plus a habit of moving too fast and pushing too hard means plenty of falling.

Usually it’s a simple toe-caught-on-the-uneven sidewalk sort of thing. Or maybe a changed-directions-too-quickly-at-home collapse. Or a it’s-3am-and-I-forgot-our-bedroom-has a-step-in-it spill. (Yes, our bedroom has a step in it. I know, I know.) Whenever/wherever/however I fall, my first thought is always the quickest of body scans before my mind races to witnesses and how to appease them. I spend significantly more time worrying about ensuring that those around me are okay with what has happened and minimizing their embarrassment than I do about my own welfare. Maybe it’s a lady thing. Maybe it’s a Rebecca thing. It’s just what I do.
Tuesday morning I walked cautiously into the building where I work. It’s been rainy in DC lately, so the entry has multiple mats to keep things from getting too slick. I learned from a few near misses that the floor around the mats is extremely slippery, so I have been very careful about keeping my cane on the mat. Once I clear a foot or so beyond the mats it’s usually smooth sailing. Usually. On the day in question the humidity made my sexy MS-friendly rubber soled shoes and the floor awfully friendly, so one foot stuck while the other kept going. The fall was a double fake out. As I pinwheeled one arm and tried to get purchase with my cane with the other, it felt like I’d be okay. Nope. Alright, the wall is right here, surely I can brace myself against . . . nope. As I spun around, one shoulder and hip hit the wall, and I slid to the floor.
My employer occupies only 1 ½ floors of the eight story building where I spend 42.5 hours a week, so, for better and worse, I fell at the feet of two strangers in suits (one had a tie with multi-colored frogs on it – ah, the details one absorbs as the adrenaline settles). I can only imagine what went through their minds as a lovely but completely out-of-control woman came flailing at them at 9:10 in the morning. They were kind enough of ask if I was okay, reaching out hands to help me up. People always want to pull me back up immediately after a fall as if I’m a toddler whose tears can be prevented by a quick upsa-daisy! Grown-ass ladies with MS don’t work that way. We need a minute.
So I smiled at the nice men. I explained that I’d need some time to recover. I thanked them for their help. I apologized for startling them. After multiple reassurances, they went on their way. Bless the building concierge, who called down “You okay, Rebecca? You need a minute?” and then let me be. I sat, teary-eyed but not crying, for a full minute before hoisting myself up and facing the rest of my day.
So what can I tell you about falls from the perspective of the fallen?
  1. They’re embarrassing. It is embarrassing to lose control of your body in public. Or even at home! I know I am killing Neal slowly with every fall he witnesses. At home, even before I’m sure it’s true, I shout, “I’m okay!” upon hitting the ground in hopes of preventing the heart attack I am sure to give him eventually.   
  2. Offers of help are appreciated, but please don’t overdo it. If I’m sitting up, speaking coherently, and not bleeding, I will allow one “Are you okay?” followed by one “Are you sure?” After that, you’re just exacerbating my embarrassment by making me explain that this happens all the time, etc.
  3. Tugging someone who has just fallen up to a standing posture might be a bad idea. I’m unsteady in the best of circumstances; please don’t try to put me on my feet immediately after I have proven I cannot handle that responsibility. On a related note, when helping someone off the ground, lifting via an elbow (or armpit, if you know the person well enough) feels much more secure to the liftee than pulling by the hands. I suspect physics has something to do with this.

If you’ve spent time with me in person in the last eight years, chances are very good that I have scared. the bejesus out of you by a) tripping and catching myself, b) tripping and nearly pulling you down with me while catching myself, and/or c) hitting the ground with you nearby. Thank you for continuing to spend time with the disaster waiting to happen that is me. Please enjoy this slapped together playlist of songs about falling as a token of my gratitude.

    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.