When you have a condition that affects mobility, traveling anywhere involves planning, research and in some cases stress-induced, ingenuity. Normally when I attend a Politics and Prose book reading it’s held at Sixth and I. This historic DC venue is one I’ve scoped out, mastered and feel comfortable navigating either via car or public transportation. So you can imagine my surprise when I learned a reading I plan on attending in August is being held at District Warf located in a section of DC I’ve never been to.
How hot will it be that day? Will there be shade? Will we be close to indoor air conditioning if it is a scorcher? And the terrain? Is it flat, hilly, uneven, or involve a steep descent of any kind? Are there steps? Are there railings accompanying the steps? On both sides? How far of a walk is it? Will my traveling companions actually want to talk to me while we walk because I can either walk in silence or talk in stillness but I can’t do both for long especially if it’s hot. Will we drive or metro in? What’s the distance between the metro stop and the venue versus the parking garage and the venue in terms of walking times? What will I wear if it’s a 100 degree day? How will I survive the heat wearing not only a cumbersome 5lb brace but the required, heavy shoes, socks, & jeans I don to hide it?
Most people simply look at a calendar and their pocketbook to determine if they can attend an event. I spend countless hours all day, every day thinking about minutia (similar to the list above) before deciding what I will and wont say yes to.
It’s exhausting having MS but not because exhaustion is one of the symptoms I actually suffer from. Personally, I think it’s the excess chronic load I carry in order to make basic day-to-day decisions that wipes me out.
Working memory (WM) is the part of the brain that consciously processes information. We take what we construct in the WM and integrate that into long-term memories. This ability to merge information in multi-tasking ways becomes vulnerable when in the presence of cognitive load. Specifically, cognitive load occurs when excessive mental demands and distractions are imposed on a brain that’s trying to process information. Which has got me wondering, Besides mental demands and distractions, does excess cognitive load also come from the excess kinesthetic and proprioceptive demands and distractions imposed on a brain that’s trying to process and integrate movement information?
Is there such a thing as Motor Planning Load?
You see, it’s not just the thinking about daily logistics that wipes me out. Because MS affects me physically (as opposed to giving me chronic pain or affecting my vision) I have to constantly think about moving while moving. I think about walking while walking, cleaning while cleaning, and dressing while dressing. This makes walking to a coffee shop, putting on a bra, or washing a frying pan, draining and frankly, annoying.
Take for example this week when I started wearing a different brace on my left foot. The Step Smart Brace is not only lighter and worn with normal shoes (yeah!) it also allows me to use muscles I’ve apparently strengthened this past year and a half wearing my DBS (who knew?). The first few steps I took were startling. I had no idea I could support my own knee and move laterally when given the opportunity. After a day of strolls in and outside my house I decided it was worth spending the time, energy and money necessary to see where this brace could take me.
After a few more days experimenting I took the ultimate test and hit the grocery store for no more than 10 items. The cart would become a safe, wheeled walker and I could truly see if this was an option for me long term.
I’m happy to report that I didn’t face plant. However the amount of tension that accumulated in my arms, torso, neck and jaw was unbelievable! I was so focused on using different muscles and gait patterns I didn’t the notice physical stress I was holding everywhere else nor the mental energy I was using just to traverse the feminine products aisle. Once my brain started to process new muscle movements and gait patterns, it couldn’t stop. It hasn’t stopped. I now think about walking even more than I used to.
Although stressing a brain with a new stimulus is actually good for me, adding excessive motor planning load (yeah, you read that right, I’m making MPL an actual thing) to an already damaged brain in an attempt to retrain said brain is grueling. A quick nap afterwards didn’t help me. I instead remained horizontal for the rest of the day.
The good news? I’m a mindful genius. I’m a witness to everything I do, be it making an omelet, reaching for toilet paper to wipe my ass or grabbing a UPS delivery off the front porch.
The unexpected news? You’ve been lied to. Being mindful all day isn’t as calming as you’ve been made to believe. It simply slows you down and creates a boat-load of stress as you try to get stuff done. Publications like Yoga Journal swear that by consciously dicing a tomato using my hemi-paretic hand is the best way to live my yoga. I just need to be a witness, without judgement, living in the moment.
Well guess what? It’s also the best way to take 2 hours to make a simple salad and almost lob off your finger. It’s the best way to frustrate yourself into a puddle of tears and insecurity before calling for take out. It’s the best way to see your future as grim and pathetic. It’s the best way to be an asshole to your husband who’s trying to help yet not insult you which is an unfair line for anyone to walk. It’s also the best way to add so much excess cognitive and motor planning load to every task at hand that your brain aches and overwhelms itself.
I’m guessing that the only way for me to decrease these loads and actually have energy to live a semi-normal life is to pick between the 2 options below:
- Figure out the most efficient way to use the affected parts of my body by:
- Spending part of my day working hard on this, like an athlete in training.
- Spending part of my day regenerating both my body and brain.
- Spending the rest of my day performing tasks with as much ease as possible by using aids, adaptive equipment and any other cheats I can think of without feeling bad about it.
- Spend my entire day performing tasks with as much ease as possible by using aids, adaptive equipment and any other cheats I can think of without feeling bad about it so as to not be constantly stressed and overwhelmed.
- Honestly this is what modern medicine encourages you to do and what a lot of rehabilitation specialists offer.
- You’re almost brainwashed to accept disease progression in lieu of trying to change course.
Either will give my brain the break it deserves. One will be exhausting and take months, if not years to achieve. The other will slowly eliminate more and more gross and fine motor movements which ultimately will increase my disability and decrease my independence.
If you know me, you know which one I’ll be trying and sadly, how bitchy I’ll be on occasion. But I’ll write more when there’s more to report and maybe we can all learn something from this shitty diagnosis.
Featured imaged by Hans-Peter Gauster via Unsplash