My Life with MS

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Rebecca’s Health Report Vol 21, World MS Day Edition: In Which I Restart a Tradition in a Public Forum

Hi family,

In honor of World MS Day I’ve decided to send this report to a broader audience. I realize it’s been a while since I wrote one of these, and I’m sorry. There have been tiny victories and defeats over the last few years, but for the most part my health remains low grade shitty, hardly worthy of an email. Or blog.

My weeks before being stuck at home had a different rhythm, and self care was easier. On good mornings now, I stretch, get out of bed, and then head to the living room for 15 – 20 minutes of Pilates on my own before a sensible breakfast. It is equally (read: MORE) likely that I will spend 30 minutes scrolling on my phone before rolling out of bed, ignoring the yoga mat, plopping my tight glutes on a barstool, and ploughing through two blueberry scones. It takes such effort to be good, to take care of myself.  And, no matter how much I remind myself of the wonders a small bout of morning exercise does for my body and psyche, it is hard as hell to make it happen. My wonderful Pilates instructor Jeneva spends a half hour Facetiming with me on the weekend, so, if nothing else, I have that.

Me, on a “good” morning, trapped in my Pilates ring

I feel like I’m falling more these days. Maybe due to reduced core strength. Maybe because I’m not paying enough attention. My elbows are covered in little pink circles where I’ve caught myself on a wall. The lightest of skinnings. Post-fall my first thought used to be a quick calculation of when my next massage would be. Under current circumstances those calculations are pointless. I try to be happy for those who can finally get their hair cut  and colored again*, but I won’t be celebrating until massage studios are open. Massage never fixes things completely; it sure makes them feel better sooner, though.

I should also acknowledge that increased falls with Neal home are a mixed bag. On one hand, he’s always here to help me up. On the other hand, HE’S ALWAYS HERE. Sometimes a girl just wants to flop around awkwardly in private.

I was due for bladder Botox in April, but rules regarding what procedures are essential make it so that all my urologist can provide is an email saying “I am not quite sure when we are opening up to do Botox, but I have a list of people to call and will add you so we can get you scheduled ASAP.” So I try to curb my liquid intake and celebrate each trip to the bathroom as a chance to get in more steps.

Oh speaking of steps–thanks again for your Walk MS donations! I haven’t managed a full mile  since then, but  I try to do a half mile most days. It was pretty damn inspiring to realize I could do it. So hurrah for that.

What else? Oh, I  had a telehealth visit with my neurologist, Dr. A, whose phone manner is much better than her bedside one. (I still haven’t sorted out the paperwork with Johns  Hopkins, which is annoying but not worth my energy presently.) The chronic back pain that she shrugged off last fall is now worthy of her concern, so I take 100mg of Gabapentin 3 times a  day. And it  helps some! Fish oil and Biotin are back in the supplement pool at higher doses than before. (Sure, why not?) She also sent me for a brain and cervical spine MRI. No results yet, but I’ll keep you posted. My biannual bloodwork (required to keep me on Tysabri) will be completed next week when I go to Georgetown for neck Botox. Yes, neck Botox is fine but bladder isn’t. Ours not to reason why.

At work we have a Slack channel (Slack is like Facebook for work) called #covidsilverlinings, and here are mine:

  • No massages means no paying for massages, nor paying to be transported to and fro. And while I will strip down and get on that table THE MOMENT it’s possible, it’s good to know that my body does not shut down without that care.
  • Pilates at home is effective! And, again, doesn’t require transport. I prefer the apparatuses (apparati?), but perhaps I can do a combo of home and studio work moving forward.
  • Being home all the time has taught me that I’m a decent walker when I take smaller steps and use my rollator. Bonus: the rollator is handy for transporting snacks from room to room.

That’s all the news from DC. All my news, at least. Thanks for your support. I am so lucky to have you all!

Love,
Becca

P.S. Mail has been inconsistent of late, so I assume my MS Day presents are stuck at a post office somewhere on the east coast. Looking forward to their arrival!

*Believe me, I get it!

rebeccascott

Welcome to My World, In Which I Compare MS and Social Distancing

When social distancing first kicked in I was on a call with my usually globetrottting but newly homebound colleagues who were bemoaning the fact that they were sitting all day. A particularly sensitive one of these lovely humans wrote soon after to check in, worried about how those comments might land on someone that has no choice but to sit most of the day. I gave it some thought and realized that, while I did briefly want to sing “Cry Me a River,” I was primarily interested in the fact that the whole world was getting a taste of what it’s like to have MS.

You cancel plans you were looking forward to because you can’t leave the house.

Sure, there aren’t government decrees insisting that people with MS stay indoors, but, believe me, my body is harsher than any mayor. I don’t leave the house because I can’t. Literally. Due to fatigue. Due to my legs being little bitches. Due to it being 80+ degrees. Due to depression. You get the picture.

You spend hours wondering is this cough due to COVID . . . or is it just a cough?

MS symptoms are a Pupu Plattter of weirdness. Spasticity, gait issues, bladder/bowel problems, and sexual dysfunction are all clearly MS-related for me. Fatigue? MS likely plays a big role but so does not exercising enough and eating poorly. And my short term memory issues that scare the hell out of me? That could be MS or just the fact that I don’t focus well or pay enough attention.

You don’t know how long this will last.

MS, like a diamond, is forever, but its individual symptoms’ lengths vary. I had double vision ten years ago that seriously affected my day-to-day to life and had to stumble through without an end–or two–in sight. It was mercifully finite. Lower back tension and pain that settled in two and a half years ago have been my constant companions ever since. Now that I’ve reached the progressive stage of illness, I have to make peace with the fact that things aren’t going to improve much. Good news: you don’t have this problem.

You feel isolated from friends and family.

I am #blessed that this is not an issue for me. All of my friends and family have been crazy supportive since my first pre-diagnosis tingle. If MS Twitter* is to be believed, this is not the norm.

a glass of bourbon
a tasty coping mechanism

You find new ways of doing things.

You’re moving your weekly coffee date online, adding ad hoc teacher duties to your routine, and cutting yourself and your family some slack. I’m sitting down (or, UGH, asking for help) to cook dinner, working Pilates into my schedule, and cutting myself some slack. Your new ways of doing things are constantly evolving as your circumstances change and you figure out what works. Mine, too.

 

You are on a roller coaster of emotions.

Some days what works is lying on the floor crying, And that’s okay, so long as you get up eventually. Some days you are a goddamned rock star with one hand ready to unmute yourself for a meaningful contribution to a Zoom meeting while the other is cutting Shrinky Dinks.** Some days are hopeful. Some days are not. But you (and I) press on because there is far more good in the world than shit, even in these particularly shitty times.

 

*A thing! Really
**I saw this happen last week.

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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.

 

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New Doctor. Who dis?: In Which Cautious Optimism Does Not Pay Off

My beloved neurologist recently moved to Florida. How did I love him? I shall count the ways. I loved his quietly avuncular nature. I loved that appointments with him lasted a full hour, leaving plenty of room for “oh yes! I’ve been meaning to ask . . . ” queries that never made it to the list I always brought with me. I loved his one-two punch of experience and openness to new treatments. I loved that he took an interest in my life beyond my disease and gave me small glimpses into his. I especially loved that he sent me to the wonderful Dr. B, who calms my head tremors with Botox. And, most importantly, I loved that changed my DMT (disease-modifying therapy) to something that has prevented new brain lesions for six years.

Each time I have changed neurologists the results have been good. The kind and quiet Dr. W passed me on to Dr. C, whose fondness for Shakespeare gave us an entryway to rapport, making it easier to discuss excretory mishaps and other concerns. I left him for the recently departed (from DC) Dr. M in the name of getting more specialized care. His warmth and good humor were welcome bonuses.

So when Dr. M announced he was leaving, I was crestfallen but cautiously optimistic. Perhaps a new neurologist would bring new ideas. Unconventional approaches. Maybe even a prescription for the massages I invest thousands of dollars in each year. This could be great!

I went into my first appointment with Dr. A like I do most nervousness-inspiring situations, with a big smile and a tendency to talk even more than usual. I wanted her to like me, to see I’m not the average patient. I am good natured and funny! I know WebMD isn’t a real doctor! I understand science! (Sort of. My AP Bio exam score 25 years ago may have given me overblown confidence in this realm,)

I was greeted by the blankest face I’ve ever seen. Not a great start, but I could deal with this. I modulated my manic tendencies, directing my good cheer at the three med students to my left who seemed to need it. In our half hour together, the only flicker of emotion that crossed Dr. A’s face was repeated eye rolls when the students’ responses to her questions disappointed her. Corrections were delivered in a condescending tone. My heart broke for them . . . and for me.

We spoke about the need for an MRI and bloodwork. About how decreasing the frequency of my infusions is wise since the complications (which include DEATH, by the way) grow more likely the longer I’m on the drug.

“Should I maybe try another drug now? I hadn’t realized my risk went up with time.”
“It’s an option.”
Silence.

Ooooookay. Now to my list of questions

With a grin to the medical students, “Sorry, you get more than you bargain for with me in the office!” Back to the doctor,
“I’m finding orgasms especially elusive these days.”
“Yeah, unfortunately there’s no female Viagra yet.”
“And if there were insurance wouldn’t cover it! Or let you get some internet doctor to prescribe it!” I laughed.
Silence.
“Talk to  your urologist.”

“I’ve noticed that my voice is froggier than it has been.”
Silence.
“It’s hard to describe . . . it isn’t as strong as it was . . . it’s sort of creaky?”
“Do you mean how it’s kind of sing-song?”
“Well, no. But now I’m self-conscious about how I’m talking.”
Silence.
“That’s not MS.”

I felt embarrassed, dismissed, and foolish. I barely got through the rest of my list.

an obvious graph
Lifted from thisisindexed.com, which is great fun!

 

The physical exam was performed by the med students, deemed worthy of Dr. A’s eyerolls yet entrusted to try their skills on me all by themselves with her interrupting only occasionally to say things like “What do you notice about her gait? What causes that?” They did a fine job, but I couldn’t help but wonder if their assessments would accurately represent my progress. Maybe these benchmarks don’t matter, especially when one is as far along as I am? I was too discouraged to put up a fight.

In typical form, I kept my shit together long enough to exit only to fall apart in my Lyft home. How could I go back to someone that belittles med students in front of patients? And, worse, who addresses my concerns without compassion? I understand that you may not be an orgasm whisperer and that my vocal issues might not be caused by MS, but I definitely need a flicker of a smile when you tell me these things. My inner voice sing-songed my distress, dismay, and despair all the way home.

It’s now a month later, and I have an exit plan. With the best neurology department in the US just an hour away, it seems foolish not to give it a try. Plus, I had the good fortune to meet a charming doctor who works there at an event I attended recently. Here’s hoping we’re as compatible in the office as we were over dinner.

 

 

rebeccascott

Portraits in Indignity: In Which I List the 25 Steps to Collect a Urine Specimen

    1. WRITE NAME ON CUP.
    2. Open cup.
    3. Place cup and lid on nearby sink or counter. If unavailable, place on floor near the hand that doesn’t hold catheter.
    4. Unwrap and lubricate catheter.
    5. Hold catheter in teeth like knife-wielding pirate boarding an enemy ship

      IMG_1571
      A blurry, tired catheter pirate.
    6. Clean bits according to clean catch instructions.
    7. Insert catheter just a little.
    8. Attempt to grab cup with non-dominant hand.
    9. Knock cup over.
    10. Praise the heavens that cup is empty.
    11. Grab cup successfully.
    12. Place cup near end of catheter.
    13. Insert catheter fully.
    14. Move cup into stream (again, according to clean catch instructions).
    15. Remove cup quickly but carefully when just over half full and place on floor.
    16. Applaud self mentally for how little pee was spilled.
    17. Finish emptying bladder.
    18. Put lid on cup.
    19. Wipe down hands, cup, toilet seat, floor, etc.
    20. Sigh heavily.
    21. Wash hands thoroughly.
    22. Stand awkwardly in hallway looking for appropriate surface for specimen until nurse says–“Just place it on the counter in there. We’ll find it.”
    23. Think, “You’ll FIND it?!?!”
    24. Place cup on counter.
    25. Exit office, mentally drafting complaint letter. And blog post.
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Miss Dependent: In Which I Try to Keep My Shit Together Pre-Travel

packing
Catheters to the left of me, undies to the right.

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.

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Scatter My Ashes at Talbots: In Which I Am Again Grateful for the Kindness of Strangers

My dear mother and me (in one of the many blouses mentioned below)

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.

As I rested in the dressing room we exchanged fundraising stories and the lengths of time since diagnosis. I asked if I could wear the last blouse out, hoping that the conserved energy would be enough to propel me out of the store. I managed to stand and teetered my way toward the dressing room exit, where I hovered a moment before looking at my mother and Jean and saying “I’m going down.” I sank to the floor, sitting cross legged a while, feeling embarrassed and defeated but mostly OK. Again it’s a magical place. A woman came through with the brightly patterned dress, and I looked up at her sheepishly. “I’m having a day!” She shrugged and said “We all have those!” while stepping over me. Jean brought a husband chair from the main area so I could hoist myself up using its sturdy arm. With some effort I  got my butt into the chair itself. We continued to talk about our medications and symptoms. (Does it get any more ladylike than quietly discussing UTIs in the Talbots dressing room?!) I was offered a Sprite and accepted a water. As things looked less and less hopeful, Jean explained that another one of the employees there was her “support“ and could be brought in to help. Jean got me to another husband chair several feet away for one last rest before the support arrived (in an adorable yellow eyelet top). 

 

I exited the store flanked by my Talbots angels and poured my tired body into my mother’s car. Everyone was so very gracious and sweet. I waved goodbye and smiled through the window. The moment mom pulled away I burst into tears. Sometimes the kindness of strangers is overwhelming. Yes, there was a lot of embarrassment mixed in there too, but it’s really the kindness that destroys me in the nicest way. I recently joined MS Twitter, and I’m positively appalled at what I read there. The insensitivity others face from friends and strangers alike floors me. I feel so fortunate that that has not been my experience. I am no Pollyanna, but I do have full faith that when shit goes down in public I will not face it alone. It may be humiliating, but dignity is overrated. Actually, dignity isn’t overrated. You can be dignified sitting on a dressing room floor, as long as you keep a reasonably brave face, graciously accept the help offered, and keep your legs together if you’re wearing a skirt.



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

**As observed before, waving them like I just don’t care is NOT advised.
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Summertime and the Livin’ Ain’t Easy: In Which I Dictate a Blog Into My Phone Because I’m Stuck on the Floor

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.



Rebecca Scott scorebecca@gmail.com
12:49 PM (8 minutes ago)
to me

made it to my knees just long enough to get the key in black. I turned the key and nothing happens. It turned a little harder, still nothing. I hoisted myself back up pie enough to have a little more leverage on my side 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 condo 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.

Skip tontent

Compose
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On Sparkling: In Which I Examine Why I Don’t Write

Sadly, my “dolls” have the opposite effect.

My friend Patrick can be relied upon for unexpected and amusing non sequiturs delivered via text. So I was intrigued when he appeared on my phone last week saying, “I’ve given this a lot of thought.” I watched the three dots expectantly, wondering what delight awaited me.

“You suck at regular blogging.”

Hm. That was unexpected but hardly amusing, especially because it’s painfully true. Regular blogging falls somewhere between carrying a full cup of liquid without spilling it and doing jumping jacks on the list of things I suck at. Four blog ideas have rattled around my head for months, and I haven’t managed to put finger to keyboard since January. What the hell is going on?

On the surface, there’s plenty. I continue to work part time. My leadership coaching program also continues, now with the bonus of three pro bono clients. I have scattered doctors’ appointments plus regular wellness ones (chiropractor, massage, etc.). It isn’t the most demanding schedule, but adding anything to the mix is hard when showering requires a 15 minute recovery period before I can make it out of the bedroom. If I work all afternoon, lifting my arms to the keyboard after hours is an exhausting proposition. On the rare occasions I have remaining energy, I tell myself should devote it to exercise (something I also suck at doing regularly of late).

Here’s the thing: I could schedule my day better. I could write in the morning, as I’m doing right now. I could make it a daily habit. I genuinely like (and hate*) writing this confessional-informational blog. So what gives? Why can’t I get my shit together to do it?

Luckily, there’s a tool for that! Immunity to Change (ITC) posits that “failure to meet our goals may be the result of an emotional immune system that helps protect us from the fallout that can come from change–namely disappointment and shame.”** Last spring I had the good fortune to participate in an ITC workshop delivered by two of my brilliant colleagues. What was my improvement goal?

This is an Immunity Map worksheet. You can get a blank one online.


I AM COMMITTED TO MAKING TIME TO WRITE ON A REGULAR BASIS.


It’s been a year, and I have yet to reach my goal. Still, the insight I got from this exercise has stuck with me. The basic idea of the chart is that column one is what I want. Column two is what I’m doing (or not doing) that prevents me from achieving my goal. Column three begins to unpack the why of it all, listing good reasons why I’m behaving the way I am. And column four both blows things to their extremes and reveals some underlying and (in my case, at least) previously unexamined truth.


I assume that now that my body is failing me, all I have to offer are my smarts and wit — and if I don’t sparkle in all things I do, people will stop putting up with my limitations – and if people stop putting up with my limitations, my friends (and spouse) will leave me – and if they disappear, I will have to move back in with my parents.***

My friends, in rational moments, I don’t think you will abandon me just because my body is in decline. That said, I must acknowledge that I worry constantly about being a burden. It’s no fun watching my 80-year-old mother, who has her own mobility issues, roll my suitcase into the airport and hoist it onto the scale. Or making half a dinner only to get out of the kitchen because I literally can’t stand the heat. Some nights after going to bed I ask Neal to fetch three separate things on three separate trips because I can’t do it myself (nor can I gather my thoughts enough to make a single request). If you socialize with me, I will sparkle with all my might to make up for the fact that I’m likely to need you to go for a napkin run or walk me to the bathroom or, heaven forbid (but it’s happened), cut my damn food for me.

It may seem silly that this same impulse arises with blogging since I can’t very well ask anything of you except your attention, but I’ll be damned if I’m going to serve up mediocre slices of my beautiful, mostly intact mind for your consumption! You deserve better, especially since I am burdening you with my trials and tribulations. (See column four’s “being whine-y = being a less good friend.”) As I’m trying to wrap this up, I’m worried that this hasn’t been funny enough and that I don’t know how to stick the landing. Perhaps I will let it go this time.

Pat, I’ll try to be easier on myself to ensure you have something to read on your commute. Thanks for inspiring me to write again.


*I don’t trust people who write who don’t have a healthy dose of hate with their love of the craft.
**I pulled this quote from a Harvard Extension School article, which I highly recommend but is unlinkable. Google it! There’s also a whole book about the subject. And this terrific video.
***Mom and Dad, I love you dearly. I just don’t want to live with you. I hope you understand.

rebeccascott

On Being An Only: In Which I Examine Life As the Sole Disabled Person in the Room

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.

This cartoon came to mind when thinking about my cane.

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 the 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!