I didn’t go
to church today. I know my church family is totally confused. “I just saw her
at the Women's Retreat yesterday. She looked fine!” Unfortunately, looks can be
deceiving and, with MS, they often are.
There are a
lot of MS symptoms that I experience that no one sees. Sure, I’m in a
wheelchair. My left arm is permanently stuck at a 45° angle. My hunky husband
lifts me into and out of the car, dresses me, and feeds me because my mobility
and dexterity are severely impaired. Those are things you see.
What you don't see is the difficulty I have being in social settings. Stimulating conversations;
the sights and sounds; cold weather and warm hugs; great smelling food that’s tasty,
too. All these can cause sensory overload, a very real and frustrating symptom
of MS.
Having to
deal with sensory overload in a social setting really cooks my grits. I used to
be a total extrovert. I loved being around people. I enjoyed the interaction. I
thrived off the energy. My sharp wit served me well. But now, with MS, I find I
function better in really, really, REALLY small groups, like three or less. If
there are more than that, I just get real quiet and watch what’s going on.
Difficulty with cognition makes me shy away from jumping into conversations because
I’m afraid I won’t be able to keep up.
I’ve tried
to master a few techniques to navigate large group settings. I speak when
spoken to. I keep conversations short. Sometimes, when I can’t hear the person
I’m talking to, I simply match my facial expressions to theirs so it looks like
I’m really engaged in the conversation. I have to be careful doing that,
though. Sometimes it backfires. Once someone was telling me about the death of
her beloved parakeet. I smiled the whole time she was telling me her sad story.
But it was an honest mistake. She kept smiling, so I kept smiling! She left the
conversation in tears. And then it hit me: she was talking about a parakeet. I
mean, come on. Can you say “parakeet” without smiling? I think not.
So back to
my original story: what exactly happened over the last couple days to trigger
the hermit within me? Social encounters of the overstimulating kind.
On Friday I
decided to accept a last minute invitation to attend a large luncheon. The
difficulties started in the parking lot. First sensory overload: cold. I hate
cold. Think of someone dousing you with a bucket of ice water on your head.
Shocking, right? Cold air sends my body into super spasticity. Every muscle tightens
up. It’s uncomfortable. It hurts. “But wait… Weren’t you wearing a coat?” Of
course not! That would be a double negative on my “cute” quotient! I have my
pride. I left it in the car to put on later. (Don’t judge. Remember, I’m
cognitively impaired.)
Once inside,
the questions began: “Is this your first time here?” “Where are you sitting?” “How
are you?” (A fully loaded question that requires major cognitive function to
answer because I have to use my decision-making skills to choose what to say. Do I tell you about the self-inflicted
pain I just endured coming in from the cold? Shall I tell you my March Madness bracket? Should I give you any answer all, or just go with the perfunctory, “Great!
How are you?”). So many questions, too few healthy neurons. But I soldiered
through…
The luncheon
itself was lovely. It was wonderful to catch up with old friends and delightful
to make new ones. The food was fabulous. The speakers spot on. The only rough
spot was the dining music, provided by a bagpiper in honor of St. Patrick’s Day. Really? It drowned out every conversation in the room. Even my usual tactics were
impossible to employ because I couldn’t hear what anyone was saying. Let’s book
a jazz quartet or string ensemble next time, shall we?
Then it was
back out into the cold to get to the car. I slept hard Friday night, but not
long enough. Show time Saturday morning was 8:45 AM, which meant getting up at
7 AM. (Jesus take the wheel…)
Saturday morning
dawned cloudy, but my excitement had me feeling sunny inside. After weathering
the stinging cold once more to get to the car, I enjoyed the beautiful ride to
the conference facility nestled in the foothills of the Blue Ridge Mountains.
Warmly
welcomed by the other ladies, curious questions began again. I’d had good
practice the day before, so I was prepared. I think I even asked a question or
two of my own. (Way to go, Cognitive Super Chick!) The morning session was
really good. It soothed my soul to listen to the inspiring, edifying presentations.
Several voices to listen to. One person at a time. Quite easy to follow… sort of.
In the
meeting room there was a blazing, crackling fire in the large hearth. It was
pretty, but the sweet, smoky aroma reminded me of a campfire. The smell was
nice, but distracting. I kept waiting for someone to bust out some hot dogs or,
even better, the makings for s’mores. Foodie distraction. The worst kind.
In order to stay
focused during the presentations, I started doodling. You know, like you did in
high school? Doodling when you were supposed to be listening and taking notes?
Doodling helps me focus on what’s being said. The funny thing was that one of
the speakers even mentioned doodling during her presentation. “Sometimes it’s
easier for people to process information if they are doing something other just
listening, like washing a car, eating food, or doodling.” BUSTED!
The
afternoon session of the retreat was held outside in the sunshine. We were surrounded
by nature, which always helps me to feel centered. I was super focused. I got a
lot out of the prayer exercises and participating in Holy Communion. I left the
retreat feeling revived and refreshed.
I
slept hard again last night, recovering from the overstimulation of every sense in my
body. It was a deep, happy sleep but, again, not long enough.
So I woke up
this morning, Sunday, with a sore throat and feeling spent. Sensory overload. It
takes a lot out of this girl. Time for some R&R, chamomile tea, and s’mores.
What? You thought I forgot about that?
