I mentioned recently that it’s hard for me to write about whatever I’m not directly experiencing or feeling.  I would love to write about the therapies I’m currently benefitting from but I can’t stop thinking about this administration’s response to the coronavirus.

Like how in God’s name can someone spread incorrect public health information while reading a prepared and thoroughly vetted speech from a telepromptor?

Or how Trump and Pence are continuing to shake hands…At the COVID-19 National Emergency announcement…In front of public health officials…While discussing how to stop the spread of a pandemic disease…While millions of Americans (who are being told to follow social distancing protocols) are watching!

What the fuck?

(Featured Image by Frank McKenna)

Are we there yet?

I personally thought our Asshole in Chief hit bottom the day he announced his candidacy back in 2015.

Perhaps his bottom is coming since he’s officially 2 degrees of separation from the Coronavirus.  I sure hope the dude that placed the American flag on the stage isn’t the infected person that has forced so many Republicans to self quarantine.

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Tasos Katopodis/Getty Images

Oh wait, I forgot. Only in-firmed, elderly folks are at risk, not the healthiest President of all time who happens to be 73. And is overweight. And is probably malnourished from a lifetime of eating fast food. I’m sure he’ll be fine.

Not to be a bitch but I take a drug that’s been keeping my MS at bay for two years.  Since starting I not only have inactive lesions on my brain but I’m also FINALLY seeing motor improvements. To achieve this, however, I have to deplete T and B Cells in my immune system twice a year. Not something you do when a novel Coronavirus is spreading across the country. So to avoid dying from a novel virus I must stop receiving the drug that’s helping me immensly. Gee, I wonder how that will work out for me?

So again, I’m asking. Has he hit finally rock bottom? Has sabotaging our response to pandemics bitten us in the ass? Can we agree that having a narcissist in charge is a bad idea? Can we finally admit that the chick with the email problem would’ve worried more about average Americans, and less about herself?

Hate to say we told you so. But we did.

(Featured image by Sara Kurfeß)

Time To Write Again. I Think.

March 3, 2020

Recently I had the pleasure of enjoying dinner with dear friends. We started talking about my writing and I was reminded that I keep ignoring said friends when they encourage me to write again.

I used to post semi-regularly here. I wrote another blog called Enter The Circle from 2006 – 2011), wrote a monthly newsletter years ago that I emailed to subscribers and even self-published a book with friends almost a decade ago. But once social media exploded, 140 characters replaced posts and exchanging information was replaced with Facebook feuds and Twitter wars I decided, “To hell with this, I don’t care enough to participate.”

Another problem I have (or perhaps a skill I possess, who knows) is that I can only write about whatever’s on my mind at the time. Period. Zip.

This is why I don’t write fiction.

This is why if I’m annoyed with Donald Trump, I can’t write about healthy recipe alternatives for chocolate cake or why I like using my Theragun.

This is why if I’m frantically searching for ways to improve my foot drop and walk better, I can’t write about why I’m constantly annoyed by Donald Trump.

I can only write about what I’m currently thinking or feeling. Writing for me is a way of purify my brain by graphically purging the thoughts I’ve been over-ingesting. Basically I’m a bulimic when it comes to writing. A binge-purge wordsmith, if you will. 

So after years of binging countless ideas, inklings and impressions, I’m feeling the need to get back in front of the keyboard to get these round the clock ruminations out of my system. Although I’m nervous about opening myself up to criticism and commentary, I’m relieved that written comments allow me the opportunity to think before I reply. Sadly, not everyone online takes advantage of this, which makes me even more nervous.

Because I have decent information to share about living with a chronic condition (I have MS), the art of communication (I’m a speech therapist), body awareness (I’m a yoga teacher), and life in general (I’m a mother, friend, daughter, wife, sister, human being, etc), I’m going to listen to my friends, find my courage, and start writing again.

Therefore, if I offend, misinform or are simply unaware, please let me know so I can learn and grow. Feel free to comment, share a link or recommend a social media account to follow. I have no issue having a difficult yet enlightened conversation with anyone.

But a confrontation disguised as an exchange? No way.

Not interested.

Which means if you simply don’t like my thoughts and want to fight with me about them, don’t waste your time because when it comes to strangers and anonymous postings, I’m a lot like Tim…

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(This is the closest I got to crediting the illustrator above. I hope it’s correct. However the featured image and other photos by Hannah Grace at the top of my post can be found here.)

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I think all the ladies in this photo look fabulous.

But in my mind the selfie ladies on the right are talking about angles, lighting, and product placement. Whereas the woman on the left.  For her I imagine a thought bubble floating above her head that states, “Fuck yeah I look good!”

She doesn’t need likes or retweets to convince her.  She convinced herself years ago.

Be like the lady on the left.

(Photo via Unsplash by Kevin Grieve)

 

Dear Conservative Christians,

My daughter Jarin decided to do a stop-motion animation project for her experimental film class.  You should see it. It’s called the Georgia Princess and it’s timely AF!

The fact that 40+ years after Roe V Wade she has to even think about this disturbs me.

She’s done everything right. She uses birth control that you don’t have to remember to take, only drinks when around people she trusts, pays her taxes, works while going to school full-time and studies hard. As she approaches 21 and prepares to graduate later this year, she’s coming into her womanhood.  She’s daring to dream big dreams. Live an authentic life. Participate in really, good, self-care. And bust her ass to get where she wants to go career-wise.

More importantly she’s finally starting to understand that life isn’t about perfection or avoiding stress and problems. It’s about becoming resilient enough to bounce back from the adversity that is bound to show up.  In other words she’s being less judgmental and more compassionate with herself, something all young women must learn how to do as they set out to conquer their dreams.

She has also been a kid that, SINCE MIDDLE SCHOOL, has told me she does not want children. She wants to be a DINK (Double Income No Kids).

When she hears a baby wailing in Target she whispers in my ear, “Dink, dink, dink, dink, dink”.

On our way to the airport a few years ago she said from the back seat, “Just think how much nicer your hotel room would be and the comfort you could’ve enjoyed sitting in first class if you guys didn’t have us,” while pointing to her sister.

I really like this guy, but he’s pretty sure he wants a family so I think I need to end it before it gets more serious,” is a sentence she’s uttered on occasion.

My response has always been, “Please be upfront with whomever you date. Make sure you explore what it might mean to you to be a step-mom in case you fall in love with a person who’s divorced. Please know that you don’t have to give birth to be a phenomenal matriarch to someone at work, through community service, or inside your extended group of family and friends. But please don’t have kids unless you really want them. It not only wouldn’t be fair to you, it would be amazingly unfair to your partner and children.” 

I’ve always been pro-choice which has never felt anti-life to me. My pro-choice stance is about being pro-quality of life for not only the mother but also the potential child. I’m also a science nerd that understands the first law of thermodynamics, also known as Law of Conservation of Energy. This law states that energy can neither be created nor destroyed; energy can only be transferred or changed from one form to another.” ~ Live Science

Because I simply feel better following the laws of science than the laws of a 2000 year-old-man-made-ideology I believe in the following. I figure after an abortion the energy, life-force, prana, bio-electrical voltage, soul, whatever you want to call it – doesn’t get destroyed.  It simply goes back into the ether, the collective, or maybe if it’s a soul, the queue. Perhaps it just gets back in line to be popped into another zygote that will be implanted inside the womb of a happy, healthy, ready-to-take-on-the-challenge-of-motherhood, legal, adult female who willingly made the choice to get pregnant while conscious and by someone not threatening to ruin her career or related to.

Call my crazy, but if I’m a soul looking for a bodily, home, I’m picking the jackpot womb. Shouldn’t all souls have that opportunity?

So enjoy her short film.

Honestly, I can’t wait to see where she ends up.  A stop motion animation career at a powerhouse like Laika in Portland?  A phenomenal pre-production gig in LA?  Maybe she’ll do line production here in the DC / Baltimore area? I think she’s going to have a great career no matter where she lands. But unlike her male contemporaries, she may soon live in a country where, by no fault of her own, a pregnancy could completely derail her dreams and everything she’s worked towards.

I’m so sick and tired of all you white, Christian men trying to control our lives and I’ll be super pissed if you derail my kid’s future. But luckily for Jarin I hear that Canada has a thriving television and film production industry.

Careful what you wish for assholes!

Fondly,

A pro-choice, pro-quality-of-life, progessive who’s tired of pro-birth Conservatives disguising themselves as pro-life Christians. 

A True Pro-Life Conservative Christian (PLCC) would 

  • Support gay marriage as it clearly answers their pro-life adoption prayers  
  • Fight for birth control and fact-based sex education as those decrease unintentional pregnancies
  • Be okay when medical, therapeutic abortions decided upon between a woman and her doctor occur since they love small government
  • Demand only science based evidence because God created scientists and data analytics for a reason
  • Welcome universal healthcare, food stamps, social services, head start education and top notch foster care because the real important work happens AFTER a baby is delivered not before
  • Demand rape prevention and education as well as proper punishments for offenders to keep everyone safer 
  • Be completely ok with women “Playing God” since EVERYONE plays God. 
    • From taking penicillin, to having a heart-lung transplant, to cosmetic procedures and in-vitro fertilization, or wearing a fucking seat-belt. We create and extend life constantly. If you’re truly against Playing God you probably should cancel your upcoming Botox and Artificial Insemination appointments 
  • Fiercely protect abused girls, tweens and teens from their creepy fathers, uncles, cousins & family friends, instead of taking away their educational opportunities and economic viability
  • Be horrified when they hear about kids in cages and children being sent back to unimaginable violence and despair where they too could get pregnant against their will.
  • Never allow a 12-year-old to legally adopt a child, therefore they wouldn’t demand that she give birth either, because that would nuts!

And if you, dear reader are a card caring PLCC member and the above stipulations don’t jive with you, no problem. We live in America. I truly support your right to stand up for whatever you believe. Seriously. I don’t get it, but I support you.  On one condition…

Don’t bullshit me and call yourself Pro-Life. Tell the truth! Be ok with being a Pro-Birther. Own it. Flaunt it. Celebrate it. But stop fucking lying about it.  

(I highly recommend viewing this full screen with the music on. Song: Alone in Kyoto by Air. Created by Jarin Pruce.)

 

Six weeks ago my mom read a post I wrote and wondered (publicly in my comments section I might add) why I don’t share with her the shittier parts of having MS? It was a fair question that got me wondering. Maybe I’m too secretive? Maybe I’m too sensitive? Maybe I’m just an asshole?

So I decided to take a poll.  I sent an email to friends with chronic conditions and asked, “How often, if ever, do you share health information with your mother?”.

My friends with mothers who also have chronic conditions share everything. My friends whose moms live without chronic conditions share nothing if their moms are in their 80’s and the rest generally keep it light while hiding any bad stuff with mom’s that are younger.

My mom’s not only younger but actually a very easy person to talk to so why don’t I keep her in the loop? We discuss politics, religion, and family issues. We can talk about assinine pop-culture events then switch gears and have a deep, difficult, interpersonal conversation. She listens, only gives advice when asked and doesn’t hound me about the choices I make. So why not tell her more?

The more I thought about it, the more I realized that I don’t share that much with most of my friends or family. Over the years I’ve become a verbal ninja, able to switch topics away from myself with anti-gravitational deft and speed. I do this because chronic conditions are chronic!  I don’t have the flu or a rash that’s going to go away. My diagnosis often keeps me from living the life I want and on the occasion that I do experience a positive change it is usually slow going and non-linear.

No one wants to hear about my ring finger moving a quarter inch and frankly I don’t give a fuck either. Sure it’s great, but it’s a non-functional improvement that I’ll keep to myself until all of my digits are moving enough for me to hold a glass of wine again. Then I’ll tell folks about it.

Besides my husband knowing the good, the bad and the ugly, I find that I’m the most communicative with friends that also have diseases or chronic ailments. My friend with muscular dystrophy is the only person I could do a 3-legged race with. Not only do we have shoddy mobility in common, we also enjoy similar benefits from yoga, have the same amount of good and bad days as well as similar levels of dark humor, compassion and get-off-your-ass-and-just-do-it-ness. When she texts me, frustrated about falling  I don’t pollyanna her with positive bullshit nor do I ask if she’s considering an assistive living facility. Instead I listen. I remind her that she didn’t piss herself so she’s still winning. Sometimes I help her problem solve what happened and how to avoid it and of course, she’s my go-to person to text whenever I trip or fall. Likewise she treats me in an even keeled way with just enough M.A.S.H. humor to keep me from taking myself too seriously and she’s fun to go to concerts with.

My diabetic friend has a completely different set of needs than I do. She quantifies her  caloric intact, glucose levels, insulin amounts, exercise choices and meal times as much as I have to coordinate walking distances, outside temperatures, terrain levels, numbers of steps and access points. So basically she does math all day while I perform physics and we do these mental gymnastics on top of our day-to-day activities. When she says she has to eat at 7pm, we’re seated in a restaurant by 6:30, damn it. Likewise when we pick the restaurant we pick a place with ample, adjacent parking, tables on the first floor and air conditioning if we’re meeting during the summer. I overlook that she injects herself at the table. She pretends not to notice when my precariously balanced cane leaning against my chair, makes a loud noise when it crashes to the floor. We’re equal parts annoyed with our diseases yet equal parts compliant with what we need to do. So when we bitch to one another, no one tries to fix the other person or pray away their issues because we both know and respect how the other feels.

Asking a sick person about their health is like asking a golfer about his round. The proper answer to the question is, “Great.  I was three under par today!” or “Lousy.  I shanked severed shots and lost $200”. Then change the subject. No one actually wants a 20 minute monologue describing each drive, chip, and putt.

The same goes for marathon runners. “How was the race?” should be answered by, “I ran my personal best” or “It was brutal today due to the weather”.  Telling your friend how you shit yourself just a bit on mile 13, and that it was the biggest, mental, mind-fuck you’ve ever experienced, might be too much information.

Mom’s that have given birth, however, are the worst. They’ll sit at a co-ed table of strangers sharing labor and delivery stories, at work! Larry from accounting doesn’t want to hear about your episiotomy, Marcy! Even if his wife is 37 weeks pregnant.

The only people that truly want, understand and deserve the above details are other golfers, marathon runners or pregnant chicks. Otherwise, zip it! And that’s why I don’t share much about my health. The overwhelming minutia of life with MS is not worth sharing. It’s complicated yet not interesting and it keeps me from being treated like I used to be treated (like a regular person). And regular people don’t talk a lot about their health problems until they’re older. (Which might be why my friends with Octogenarian moms don’t say much to them?)

It’s easier to be treated like the old me when I’m not talking about my health. That’s why I write about it instead. I Vince Vaughn my thoughts and put them “on the line” so that I can release them from my body, mind and spirit. I’m pretty sure the combination of saying less but writing more is the only reason I’m able to stay sane through all this.

I do know that I don’t have the energy to worry about others, worrying about me and if I have to edit myself on this blog, I’d probably stop writing it. So how bout this…

When I have something good to share, I’ll let you know. I’ll let everyone know. Hell, I’ll probably post it on this blog. But when I’m trying a new medication or therapy, consider me like a fiction writer not wanting to give away the plot or a superstitious person, not wanting to jinx my own progress. I need to fail privately, process whatever went down, adjust and then share it on my own time table.

That doesn’t mean that I’m not an asshole. But at least I’m a sane asshole. I’m never going to talk more but I do promise to write more to keep everyone in the loop. In the meantime, maybe finding other mom’s whose daughter’s have chronic conditions would be better in the end than talking with me?

Just an idea. (That I got, not by talking but by taking the time to write down, re-read, and edit my thoughts.) Maybe I’m on to something after-all?

 

Living With MS: What I Wish I Had Been Told When I Was Diagnosed

August 6, 2018


If you’re newly diagnosed with Multiple Sclerosis, I’m happy to give you my number with the understanding that you may never call me because:

A) I’m a stranger

B) You’ll probably spend the next 6 months scouring the internet and come across a plethora of amazing and downright dangerous suggestions that you’ll try before calling me or anyone else for that matter.

I completely understand. When you have a disease that doesn’t have a cure, you tend to subsidize western medicine with non-traditional options as you search for answers. Now don’t get me wrong. I’ll happily pop the “MS Cure All Pill” once science creates it. I’m also open to revamping my stem cells and / or fixing or replacing whatever freaky gene caused me to get this disease in the first place. But until the FDA says those procedures wont result in a 3rd thumb growing out of my ass, I’m trying whatever else is available to me.

This approach requires reading lots of articles, researching new findings, discovering new tools and equipment, embracing holistic approaches to health while seeking out new, never-before-heard-of scientific advancements. This happens because when you’re diagnosed with Multiple Sclerosis, besides taking one of the more than a dozen available disease modifying drugs, no one actually tells you what to do. There’s no standard MS protocol to follow. Science has no idea which diet works, which form of exercise is best or which drug is better, thus you fall down the Internet rabbit hole while looking for things to try.

Since I’ve had Multiple Sclerosis for almost a decade I thought I’d write out what I wish I had been told by the Neurologist that warm September day back in 2009. If I could go back to the moment I was diagnosed, this is the pamphlet of information I would give myself and refer back to, daily, during the first year.

A chronic condition is just that – chronic – so you can either spend a ton of time trying to do the impossible and eradicate it OR learn to live well with it. You will definitely find someone online who claims to have gotten rid of MS through diet or visualization or yoga or medical marijuana or a specific medicine or prayer or training for a triathlon or listening to beta waves during REM sleep. But most patients simply learn how to live well with terrible diseases by planning for terrible days while taking advantage of their good days. Of course, good days occur more frequently once you find the best forms of diet, exercise, stress-release, and medication for your particular body, mind and spirit.

But a chronic condition is just that – a condition – which is a state of health that changes. So even if you do everything right, you will absolutely experience a really bad day due to your diagnosis.  Likewise if you don’t take care of yourself, you can skate for a while but it will catch up with you because you’re also aging as you’re skating. Therefore a commitment to general health and wellness is your best underlying defense.

It’s not your fault so cut yourself a break.  You can’t control your genetic makeup or all the environments your parents or loved ones placed you in, growing up. The only thing you can control at this point is your lifestyle choices. Therefore when it comes to any chronic condition the popular adage, “Genetics loads the gun but environment pulls the trigger” is true but perhaps lacking a third element…

“When it comes to health although genetics loads the gun and your environment pulls the trigger, I believe that lifestyle keeps the safety on.” 

Embrace a general, anti-inflammatory lifestyle.  Many medical professionals believe that all diseases start with inflammation. So rather than jumping into strict gluten free, paleo, raw, vegan or keto diets, keep it simple and start by committing to a general anti-inflammatory diet that will decrease internal irritation. Dr. Andrew Weil offers a great diet to start with.

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Move as much as possible. Because MS can negatively affect your gait, balance and mobility, for as long as you can, move, move, move! If I could go back in time, I’d take a daily walk no matter the weather, weekly hikes and basically choose walking in lieu of driving as often as possible, just because I could.

Find the best way to release stress. For some that means yoga and meditation. For others it involves kick boxing or banging out frustrations on a drum set. Other’s require a creative outlet to clear their mind and feel sane. Figure out what you need and do it often.

Give yourself time to slowly grow and change. Begin by eating more vegetables in general before you decide to give up grains, only eat raw foods and throw out your microwave.  The same with supplements, organic foods, and healthcare. In a perfect world I would only eat organic, but if I did that I wouldn’t be able to afford co-pays to see certain providers, buy the cool walking stick I love from Canada or try out the $200 foot-drop brace I found online.

Be a curious scientist about your health not a judgmental, inner critic. Keep a journal and take “data”, focusing on one change at a time. Start by noting how you feel physically, mentally and emotionally when you try something new or different.  Changes take time to go into affect so give your body time to adjust before trying something else and clouding the data.

Remember, this is a marathon, not a sprint. Non-runners need at least 4 months to go from their couch to the finish line. Being newly diagnosed with a chronic condition (that you’ll have your entire life) is like training to run yearly marathons. You’ll need to simply run on a regular basis while figuring out the best way to eat, hydrate, stretch, rest, rehabilitate any injuries, while responding to other illnesses, stress and age-related changes. Twenty year old runners are different from 63-year-old runners. Disease processes across one’s lifespan require just as much adaptation and ingenuity.

Don’t go overboard trying out alternative therapies. In retrospect, I wish I would’ve spent 75% of my time focused on basic, traditional approaches to wellness and 25% of my time exploring alternative suggestions. It would’ve created a better foundation to support alternative therapy today and saved me a lot of time, energy and money.

Find the right healthcare professionals. Doctors and therapists are supposed to tell you the truth but sometimes their delivery and word choice plants a negative seed that can grow wild, weeds in your head.

Personally I try to hope for the best yet plan for the worst. It’s easier to do that when professionals are as curious and positive as I am. If I leave their office feeling discouraged and deflated, I find someone else. Medicine doesn’t know what causes or cures MS so it’s pretty arrogant to think it knows exactly what will or wont work for me. I’m happy to embrace a balanced approach to health as long as they’re happy to encourage me and my ideas. They know medicine, but I know myself.

Be gentle and compassionate with yourself as you figure this all out. It’s taken me a decade to find:

The right professionals to see as needed

The right types of exercise, medicine, alternative therapies, nutrition, stress release and cutting edge information to use as needed.

  • Yoga (Meditation, Pranayama, & Gentle, prop-heavy / chair classes that increase capacity)
  • Equipment (Step Smart brace, Active hands, Urban walking poles)
  • Western medicine (Twice a year Ocrevus infusions)
  • Exercise (Elliptical / Rowing machines & Walking, CARS joint work, Functional Range Conditioning)
  • Alternative therapies (Frequency specific micro-currents, NeuroKinetic Tx, Medical Cannabis),
  • Nutrition (WW / Whole foods eating),
  • Stress release (Writing / Talking with friends with chronic conditions)
  • Cutting edge information (Autonomic nervous system work, Neuroplasticity, Irene Lyon’s Nervous System Work ).

I’m still trying to figure out how much of the above to do and how often to do it. It’s taken me years but I finally learned to figure out what I need with the understanding that it’ll change and I’ll have to tweak everything again. Because of that:

  • I don’t get as mad as I used to when something stops working for me.
  • I try not to let the amount of work required freak me out.
  • I don’t feel guilty for not spending 8 hours each do only focused on my MS.

Seriously did you see the list above? It’s fucking long! If I did everything daily – I’d get nothing else accomplished.

Everyone has a cross to bear. Life throws everyone a curveball or two (or ten). Some have money and marriage problems. Others have health issues, addiction, or mental illness. Some live in cults, suffer from abuse, get bounced around the foster care system or are homeless. People are incarcerated for crimes they didn’t commit or fall victim to institutionalized racism. Many are disowned by their families while others are downright suffocated by theirs. The cross on my back happens to be a health one, but it’s no heavier or lighter than the burdens that others carry around each day.

Don’t compare yourself to others with your same condition. I’m a 51-year-old, married, “doesn’t have to work”, privledged, white woman who is the mother of grown children. I have the time, energy and money to try and fail at lots of things for my disease. If I were a single mom with 2 jobs and 3 kids I wouldn’t have tried a fraction of the above options.

If anything I blog about MS to try and cut through the bullshit to save other’s time, energy and money. Therefore if you have a specific question about something I’ve played around with, reach out. I’m happy to offer my thoughts and point you toward any research I’ve come across so you can make the best decision for yourself.

Lastly, you’re allowed to grieve the loss of your health. I was once told that to surrender means to simply grieve the loss of something. Thus before I could surrender to the process of re-creating my health I would first need to grieve the loss of the healthy life I had expected to enjoy. That doesn’t mean giving up as much as it is about letting go of whatever I had imagined. I often wonder what would’ve happened had I simply taken the time to grieve my diagnosis in lieu of jumping straight into “lets fix this” mode?

Bottom Line:  Don’t try to cure yourself of a disease that the smartest neuroscientists on the planet can’t figure out. Don’t put pressure on a sick body to heal itself without the help of modern medicine. Feel free to use both eastern and western approaches to your medical care but don’t demonize doctors and drugs. A yoga practitioner or a naturalpath didn’t diagnose you. A medical doctor using a high-tech MRI machine did, so don’t rule them out when figuring out your long-term, medical options.

Be positive and give yourself one full year to live as healthy as possible as a newly diagnosed, unhealthy person. After that, start playing around to figure out what works specifically for you and your disease process. Then make a promise to yourself to keep doing the work required.

(And if you ever do want to talk, feel free to give me a call. 🙂

This post was edited for clarification on August 7, 2018 to add more resources on October 29, 2019 and to add links and updated resources on April 21, 2020.

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.

Shit!

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:

  1. 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.
  2. 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.

You’re welcome.

Featured imaged by Hans-Peter Gauster via Unsplash