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I awoke in an empty bed this morning.

One of my first thoughts was “Shit! Neal never adjusted my Birkenstock straps.” Neal’s absence brings up all sorts of silly thoughts like this. Something that would take him two minutes will likely take me 15 if I have the patience to hang in there. It’s not that I can’t do things. It just takes time and energy, two things I am short on.

In a few days I leave for a week of work-related fun. Well, sort of fun. See, I helped plan both of the events I’m attending (plus two I’m not), which means I won’t relax for the duration, convinced that room set ups won’t work, buses won’t arrive, and diets won’t be accommodated as requested.

More stressful, though, is my own preparation. My famously frugal father always surprised me when he’d say to anyone fretting over packing, “We can always buy what we forget!” Alas, with chronic illness, the stakes for packing are much higher. Pills must be sorted to ensure that I’m not overly shaky* or spastic. Most of my prescriptions come with extra restrictions, so I shudder to think of the hoops I’d have to jump to get them outside my regular pharmacy.  Also, you also can’t just go to a drug store and say, “Hi! I’d like some catheters, please.” I mean, you can. I bet you wouldn’t get any catheters out of it, though. (Stupid recreational catheterizers, ruining it for the rest of us!) Mine come to me once a month via mail, and the horror of being without has resulted in a Catheters First packing policy.

So, what’s the big deal, right? You sort the drugs. You pack the catheters. You put on your big girl panties and then count out enough for the trip (plus two extras, of course). Then you do the rest like anyone else would. Trouble is my best mobility aid, my wonderful, patient, super helpful spouse, has left (on a trip to Japan, no less) before I do. So there is no one here to gently remind me I’m being insane as I fret about every little thing. No one to run back and forth between rooms to fetch what I need as I pack. No one to tell me to sit down when I’m doing too much. No one to get the shrink wrap off the various products I’ve ordered off Amazon in spurts of maybe-I-need-this panic.

I’m not a spoonie, as I find my energy reserves more nuanced and, mercifully, renewable than that. Still, I know these next few days are going to require care if I’m to have anything left for the joys and frustrations that lie ahead. I also know that the emotional energy I’m burning in worry and stress exacerbates everything. So I’m meditating more. I’m maintaining my newfound commitment to exercise but doing it in small spurts to ensure I can get off the floor afterwards. I am packing a little every day.  I am remembering that I’m really good at event planning and that it’s wonderful that life has given me an opportunity to revisit what was my chosen career before MS got in the way. I am making lists and checking them thrice. And I am breathing.

*Or anxious! One of my anti-tremor medications is used primarily for anxiety, and I sure feel it if I miss a dose.

Okay, I don’t really want to spend eternity watching women search for the perfect pair of pants, but there is something magical about the dressing room at the Talbots in my hometown. The individual dressing rooms open into a common space containing a couple of comfy chairs and a thee-way mirror at one end, as dressing rooms often do. What is notable is the air of courtesy and quiet enthusiasm. I’ve exchanged smiles with the daughters of little old ladies with perfectly set hair in search of the perfect pair of “trousers“ and enjoyed hearing groups of middle aged women trading clothes between dressing rooms with a “This didn’t work for me, but it would look darlin’ on you, hon!” (Hell, my sisters and I have done that minus the hon and darlin’!) Shopping on your own? Never fear– there’s always someone nearby who is happy to offer her candid but kind opinion about how your butt looks in those jeans or whether the dress you’re on the fence about is flattering. You can bump into your best friend’s mother, as I have done on one occasion. Or run into someone from church, as my mother does religiously. Everyone is very upbeat, very southern, and very sweet. It really is one of the happiest places I know.

With my mother and I slowing down (lucky me to be slowing down at the speed of an 80-year-old), our long jaunts to the mall have become short visits to the nearby Talbots. We rarely miss it when I’m home, and I usually return with a handful of sale items. After a few lazy days on the couch, we mustered up the energy to go to Talbots this afternoon. I optimistically made my way through the store, filling up my dear mother‘s arms with blouses and a dress and more blouses. A flawlessly dressed woman named Jean* took my clothes to a dressing room and scribbled Rebecca on the door. I continued shopping and then went back to try things on. Trying things on is its own challenge now. A funny quirk of MS (mine, at least) is that raising my arms over my head** is exhausting. This has seriously reduced my stamina for trying on clothing, but I haven’t been shopping in so long that I was determined to make the most of this trip. I tried on a pair of white Capri pants with a pink blouse. Jean and I decided pants were a size too big, so she fetched a smaller size. I returned to my dressing room with the smaller pants and should have stopped. Instead I struggled back into my own jeans (a feat made more difficult by at home eating habits) and  managed to get one last blouse on before giving up. I opened the dressing room door and stood briefly to get the approval of my mother and Jean, who were outside chatting about my MS in hushed tones. Mom’s words of explanation regarding her hot mess of a daughter are usually met with sympathy, but there was a surprise bonus this time… perfectly-accessorized, fully-ambulatory Jean, who had been helping us all along, also had MS! Talbots magic strikes again.

 

*Name changed in case Jean isn’t as interested in having her business all over there internet as I am.

I was just dropped off at my home in hundred degree weather. I’ve come from an infusion, a welcome quiet two hours once a month where I sit and allow my disease modifying drugs to drip drip drip into my veins. No side effects, no real irritation barring the occasional person answering his cell phone in the infusion room or a too loud television tuned to a cake decorating competition. I am sitting outside the door of my condo. After multiple tries to get the key in the lock with arms heavy from the heat and legs that can no longer stand. I need to work. I need to get inside. But first I need to muster the energy to stand up and get the key in the fucking lock.

Is it, doormat? Is it?

This summer has been pleasantly cool so far. Cool is relative, of course. Mid 80s isn’t cool, but it is reasonably doable all things considered. I can manage a walk from the house to the curb in 85° heat. Today is something else entirely. Remember playing hot lava as a kid? My current movements bring it to mind, except now the lava presses in from every angle. I move from fence to sign post to parked car with the desperation of a small child trying not to touch the floor but with fewer shrieks of delight. I grasp my way across the sidewalk, praying I don’t hit hit the asphalt. 

I made it to my knees just long enough to get the key in the lock. I turned the key and nothing happened. It turned a little harder–still nothing. I hoisted myself back up high enough to have a little more leverage, turned again, and the door opened. I have now crawled inside and I’m wondering how to get the key out of the door. Do I call my upstairs neighbor? Nope. I just remembered he’s out of town. I know I won’t sit here all day long, but it sure feels like it.

MS is an exercise in learning one’s limitations, adapting, and often surrendering. In the heat, there’s no choice but to surrender. There’s very little to be done. Because I participated in the MS Walk, I was sent a shitty little fan to plug into my cell phone for cooling purposes. It works about as well as someone blowing into my face. I have a cooling belt somewhere. It looks like the supports warehouse workers wear and can be filled with little ice packs. It lasts about 20 minutes in heat like this, and it’s too unwieldy for everyday wear. There are very fancy cooling vests (all very stylish I assure you), but I gave up vests in the late 80s.

So now I surrender, lying back on the cool floor of my condo, awaiting the energy to stand. To walk. To work.

I just stood on my first try. I walked 8 feet to the kitchen counter where I now sit wishing the glass in front of me had more than two sips of water in it. I’ll make it to the fridge to refill eventually.

A nice/terrible thing about living with MS is that it’s often invisible. As mentioned in previous blogs, the occasional incontinence mishap can be a private hell, which is indeed a hell but is at least private. Fatigue is similar. A common complaint of people with MS is people saying, “But you look so good!” If you’re vain like me, you tend to focus on the “look so good!” bit. Still, when others focus on the outside, the inside feels diminished. Disregarded. And that can hurt.

In some ways, it was a relief when I began using a cane regularly. It’s a sign to the outside world that says, “Hey, this person is different.” The general public doesn’t always notice that sign, but, even when I’m not shown the courtesy I’d like, when something goes wrong–a dropped glass, a stumble–folks see the cane and think “well, sure.” I’ve moved with an M-acceSsory* for a long time, and I’ve often thought about how I am perceived. What I haven’t thought about is my only-ness.

Until now.

I just finished my first three days in Georgetown’s Institute for Transformational Leadership’s Leadership Coaching certificate program. On the first day, I rode in on my red scooter with a big smile on my face. I led with my MS in my introduction, which is perhaps a topic for another blog–how much of my identity is tied up in my disease.** I graciously accepted help when classmates offered to carry my tea, my lunch plate. I asked to remain in my place and have others join me when we broke into groups. The first day was humming along beautifully. Then I fell.

You can’t ask for a nicer bunch of people to take care of you post-fall than participants in any program involving the word “transformational.” These people are as empathetic and caring as they come. I was helped into a chair. I was asked if someone could fill mug I was holding. I laughed and said, “Yes, but sadly you cannot pee for me!” I agreed that scootering to the bathroom would be best. One of our co-directors scurried to figure out which restrooms were handicapped accessible. I cried only a little when reminded that I didn’t have to be as strong and positive as I project. The remainder of the course was filled with epiphanies, head scratching, deep conversations, laughter, doubt, and so many questions.

“Will stabilizing your chair be easier? When you sit? When you stand?”
“Can I get you anything when I go out?”
“Hey, can I get out anything when I go out?”
“Are you sore from yesterday?”
“Am I asking you if you need help too much?”

That last question really touched me, because it got at a part of my experience people don’t often consider. Being taken care of is a gift. Needing help all the damn time sucks. And in those wonderful moments when I don’t need help, someone asking if I do reminds me that my being okay and self-sufficient is not the norm. Please do not misunderstand me: I will never be upset with someone for asking if they can help me, because I know the impulse comes from kindness and concern. At the same time, one does tire of politely declining kind offers.

In class we’ve been instructed to “notice our noticing,” and what I’m noticing is how fucking lonely and frustrating it is to be an “only.” It’s a term that came up in a diversity discussion. In a story our instructor told, it was how the sole African-American in a group self-identified, and it hit me hard. Looking around, I thought, “Oh my god. That’s me! That’s me in almost every situation.” How bizarre to have lived a thing for so long without even thinking about it! I do not surround myself with MSfits (to borrow a term from my blogger soul mate, Dave), nor do I spend time with people with mobility issues. On one hand, I realize they’d be no use if I needed tea carried carefully across the room, but, on the other hand, they would understand the dual nature of offers of help.

I haven’t spoken much in the large class settings (something else I’m noticing), but I took this moment to speak up as we all grappled with how to acknowledge other-ness in a coaching setting. What I said was something to the effect of (but likely less eloquent than) “Speaking as a different kind of only, I will say that any time someone has asked about my situation from a position of kindness and curiosity, I have been happy to engage with them. It won’t be a way in for everyone, but it is a starting place.”

I suppose if there’s a takeaway from this blog it might be that asking “How can I be most helpful?” once and trusting people to speak up about emergent needs is likely the best approach. It is for me, at least. Also, if you know people with MS*** who might like to be my friend, please send them my way. We onlys (onlies?) have to stick together.

*I know. Stop trying to make fetch happen.
**We’ll table that for now since my main reason for starting there this time was explaining why I was disregarding the instruction to stand.
***Or, better yet, if you are a person with MS who might like to be my friend, please reach out!

When I was four years old I began taking ballet classes. Clad in a black leotard, pink tights, and pink ballet slippers, my best friend Suzy and I entered the glorified trailer that was the original home of the Augusta West Dance Studio together. In spite of being terrified by the ancient, chain smoking receptionist Tikie and disappointed that I’d have to wait months to wear a tutu on stage, I fell in love instantly. I loved the New York City Ballet towel on the wall. I loved my teachers, Miss Cindy and Miss Diane (and later, Miss Bea). I loved the Coke machine in the dressing room that sold grape soda in tall glass bottles. And, most importantly, I loved to dance.

The Rainbow Connection – 1982

Two years of ballet were followed by a year of tap, a few of jazz (oh, the thrill of finally being old enough to take jazz!), and then tap and jazz. Each spring brought the three most exciting days of the dance year: 1) learning what song we’d dance to in the recital, 2) the costume unveiling, and 3) the recital itself, the one time a year we performed on a proper stage. Backstage was magical* and chaotic, as teachers and volunteers tried to wrangle hundreds of excited little girls, swiping aggressively red lipstick across our mouths and begging us to please tinkle before we went on stage.

Lord only knows but it was tap – 1985

Performing was great, especially as a front row regular (which I was, thank you very much), but really I just loved dancing. I was a quick learner, which came in handy when I got older and got to go to dance conferences with the Junior Company. Standing in a sea of young women (and a handful of brave young men), learning routines to “U Can’t Touch This” and Madonna’s “Hanky Panky,” I realized I was not one of the best, but I knew was good. And that ain’t bad.

R.O.C.K. in the USA – 1989

I gave up dance for the theater in eighth grade, a tough call since I’d been promoted to Apprentice Company. Luckily, I was in chorus at school, and that meant I’d get to dance some. This was long before Glee and the glorification of the show choir. Our routines were not complicated–a few grapevines, step touches, and jazz hands would get us through whether we were singing “Let’s Hear It for the Boy” or the Chiquita Banana song. Once a year we’d spend a whirlwind day and a half with a professional, who would teach us choreography for a 40 minute Broadway** medley, which we performed the evening of the second day. It was exhausting, exhilarating, and my favorite weekend of the year.

Some Batman-inspired song that wasn’t Batdance – 1990

I never danced on stage again after high school, but I was an enthusiastic dancer at parties, clubs, bars, weddings, home . . . wherever the spirit moved me. In 2009, five years after my diagnosis, I signed up for a class to learn the ubiquitous “Single Ladies” dance. I enlisted a handful of coworkers to join me and showed up in ancient Umbros and a tee, optimistic but not foolhardy enough to follow the studio’s suggestion that we bring high heels. It started out okay. My brain grasped the steps just like it used to. My body was slower. Still, I hung in there and was terrible but happy. Emboldened, I signed up for a Britney Spears class. Again I started okay, but my body grew clumsier the more tired I got. I rammed hard into the women to my left, apologized, and headed for the bathroom where I cried the ugliest of cries. I knew my balance wasn’t great, but was it really this bad? I pulled myself together enough to finish the class. But I never went back.

Note the trophy! Dance Makers conference at Myrtle Beach 1990.

Now I know my limitations. I can indeed throw my hands in the air, but waving them like I just don’t care is not advised. Nor is moving my feet. On a good day, I can shake my ass and move my upper body without support for minutes at a time. Bracing myself against a wall and/or human is usually required. On a rare club visit, I discovered that I do well sandwiched between two people . . . but that isn’t appropriate in most settings.

Rodgers & Hammerstein medley – 1993

I often cry at weddings. The ceremony used to be the trigger. Now the tears come when I sit on the sidelines at the reception. How great is grabbing your friend when “Hey Ya” or “Poison” (or whatever your jam might be) comes on and hitting the dance floor in a sort of eternal return*** celebration of who you were and who you are? I’ll tell you: it’s really, really great. I miss walking like a normal person, but I really miss dancing like one.

*The glorious Sutton Foster grew up in my home town and was one ballet class ahead of me. Everyone knew and loved her, and I met her backstage at my first or second recital. She was super nice.
**One year we had the indignity of performing a Beatles medley. Neither the Beatles nor our chorus deserved it.
***I took a religion class in college that was WAY out of my league, and this very cool concept is the one thing I retained from it.