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

As Anthony Bourdain’s passing took over the internet, I wondered why this particular celebrity death affected everyone so much?  I enjoyed Bourdain’s story telling, either in print form or on TV. He inspire me to eat differently and have a more fluid culinary point of view.  His suicide caught me by surprise and saddened me very much.

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As I was pondering this, I stumbled upon a PBS special celebrating 50 years of Mr. Rodgers, another celebrity whose work has been everywhere lately. There’s a book coming out this fall, a documentary in theaters now,

and a Rodgers-centric movie, staring Tom Hanks, in the works. Growing up, Fred Rodgers most certainly inspired me to live differently and affected they way I understood the world and my feelings. His death from stomach cancer over a decade ago also caught me off guard.

Then I thought about the other person covered 24 hours a day online, in print and on TV.

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Illustration by Paul Longo

Clearly, two of these things is not like the other.

Two were truth tellers. One spoke his gospel gently, using kid friendly language while sporting Keds and a cardigan. The other was a tattoed, bad boy chef turned wordsmith. His stories like his dishes were distinctive, savory, sometimes even pungent.

Both had a points of view they were passionate about which resulted in the creation of authentic, televised content that millions enjoyed for years. Both believed that the truth, no matter how uncomfortable, was meant to be shared.  Both felt that we not only deserved the truth, but needed to hear it.  The truth would answer our questions, calm our fears and ultimately be something we would survive.

Anthony and Fred didn’t expect all truths to be homogeneous or agreeable, even. They embraced principles that challenged the status quo or people’s innate belief systems. They wanted revelations to encourage discussion, empathy and understanding.  They didn’t need us to think alike or see eye to eye, but our points of view had to be based in truth. Creating a false narrative based on lies was not permitted. Ever. Which is why the third person in this story is so foreboding.

Trump is a liar.  He lies about entire swaths of people, words that come out of his own mouth and tweets that he himself posts. He states falsehoods about our allies, our trade policies, and our history while praising our adversaries. He has completely misrepresented the conservative platform and the Christian belief system, all for a voting base Congress is too cowardly to speak the truth to.

Why have millions fallen for this charlatan? Why has Congress fortified such unprecedented complacency? Because this liar also benefits from a televised platform. He doesn’t simply have his own show, he has an entire network that not only supports but helps to create and produce an erroneous narrative.

Because so many lies get tossed in the word salad our Narcissist in Chief continually feeds us, we need as many truth tellers as possible. So when one, like Bourdain, leaves us, it’s upsetting. And when folks that love a pathetic liar like Trump, claim to also admire an iconic truth teller like Mr. Rodgers, it’s unnerving.

Lots of Trump supporters have been drinking his deceptive kool-aid for a while. Perhaps the recent talk regarding culinary credibility will make folks aware of the nasty aftertaste Trump’s aspersions have left in their mouths?

I doubt it.

Unless a Fox News spokesperson became an actual conservative truth teller! Imagine what he or she could do with a national platform and some fortitude? Just sit for a second and imagine what that would look and feel like. Perhaps the truth could finally set a lot of people, politicians and points of view, free.

I don’t know about you but I’m exhausted from this 24-hour stream of deception and misdirection. Must be why the death of candor effects us so deeply. We need it now more than ever.

Featured Image is courtesy of Unsplash / Jon Tyson.

I absolutely love this commercial.  It’s a catchy, high-energy advertisement for Hospital of Special Surgery (HSS).

The song takes residence in my head as I enjoy the fun, fresh moves of the actors as well as the expressions on their faces as they move.  Motion allows them to show joy, excitement, confidence, curiosity, and even aggression as they show their resiliance, dedication, determination and creativity.

“How you move is who you are, how you are and why we’re here,” they exclaim.

Exactly.

Which is why I simultaneously hate this ad because I hate how I move. The changes in my mobility have changed who I am, because it’s changed how I see myself, the choices I make and I’m pretty sure, how the world sees me.

Let me be clear. I’m not suggesting that we start a Twitter outrage campaign to defend the feelings of the physically disabled from this ad.  Nor do I feel that their tagline needs to be changed.  It’s an accurate statement.  A person’s movement can certainly affect who they are which is why there are no wheelchair bound, wind-turbine cleaners, bilateral, amputee sign-language interpreters, post stroke, hemi-paretic, loading dock workers or stilt walkers suffering from vertigo.  Take away movement and you take away opportunities.

If there’s a surgical solution to your mobility issue, I’m glad to know that the Hospital of Special Surgery is an option for you.  Although HSS can’t help solve my problems, their ad has inspired me to explore:

  • Movement in general.
  • How to best deal with impaired mobility?
  • Is it disease progression or lack of use that ultimately takes away mobility?
  • Why the hell doesn’t insurance cover long term rehabilitation services the way it covers short term yet expensive surgical solutions for mobility issues?
  • If I can’t improve my mobility what’s the best way to maintain it?
  • How do I live well with imperfect mobility without driving myself insane?

This is why it’s been 9 months since I’ve blogged. I’d rather discuss possible solutions than rhetorical, kinesiology questions which is why instead of writing, I’ve spent a lot of the past year trying new medicines, modifying my yoga practice, and working with 2 different physical therapists because my goal is and always will be figuring out a way to do more of this:

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And less of this:

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Having MS means failing quite a bit (as earlier blog posts of mine can attest to).

I find that I often need to take a break from my failures before I’m willing to re-invest time, energy and money into not only another wellness regimen but the time needed to write about it.

It’s taken years for me to find the right PTs and the best way to modify my yoga practice.

I’ve been blessed with dear friends with their own mobility issues that are willing to modify their yoga with me weekly along with a new version of yoga therapy being offered in my town.  I even got a sweet physical therapy bar that has allowed me to move my arm in ways I haven’t experienced in years!

You’d think that I’d be jumping for joy!

Unfortunately just when I thought I was figuring things out and making gains regarding my range of motion, this happened:

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Which is why my current version of movement is simply this today:

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I hope as you do your thing, you have better results than I did today.  But if you don’t, feel free to move your fingers any damn way you please.

Photo credits: Andrew Hunter, Hailey Kean, Edu Lauton, & Hybrid

Song credit: “Do Your Thing” by Basement Jaxx

I like the idea of a daily yoga challenge. The problem is, I don’t actually like doing them because it’s an easy way to bullshit myself.

When I couldn’t make it to the studio, I’d simply unroll my mat for about 20 minutes of yoga. Or do a few asanas in the kitchen while waiting for my bread to toast. Or once I sat for 30 seconds and did pranayama which counts, damn it! Mindful breathing IS yoga. Ask anyone!

All of this bullshitting has convinced me that a 21-Day Yoga Challenge isn’t for me. I did however feel drawn to a “Go To The Studio 3-Days A Week, Yoga Challenge” so I started one this week. Visiting a studio thrice weekly for 60, 75 or 90 minutes of yoga is good for a variety of reasons:

  • I’ll have to push myself, try new poses, and be creative with props.
  • It forces me to use my weak arm and hand in ways that I can’t replicate with other forms of exercise.
  • When my negative inner critic gets bitchy and I get frustrated, I will be forced to keep my cussing to a whispered, minimum.
  • I get to run into cool yoga studio people that inspire me and make me feel good about myself.
  • This set up doesn’t stop me from doing yoga daily on off days at home. Nor will it get it the way of all the others forms of wellness, health, and exercise I’m supposed to do for this disease.
  • I can set up my schedule to take the classes that I want and / or need instead of taking whatever fits into my day.
  • Most importantly, I can steal ideas from other teachers to use when I teach. 🙂

As of yesterday I performed almost 4 hours of yoga via three different classes, which was wonderful. Since I have no vacation plans coming up in the near or even distant future, I’m confident that I can do this week after week without much difficulty for the next 3 months which is officially my goal for this personal challenge.

If you want in on this let me know. Whether it’s CrossFit or Feldenkrais (and everything in between), if there’s something you want to do at least three days a week for your health and wellness, feel free to join in on the no-bullshitting yourself fun.

 

 

Will 21 days of yoga make a difference regarding range of motion (ROM), flexibility and strength if you have MS?

Who knows?

As much as I love certain modalities that I use to create wellness (Feldenkrais, myofascial work, walking, rowing machine, eliptical & yoga), it’s hard to find something that creates a large, holy shit, this-is-so-cool-you-should-write-a-book-about-it, long-term type of change. Instead, my health toolbox tends to only house tools that create small (sometimes infinitesimal) changes which although I appreciate, I find frustrating.

It’s been a long eight years.

For example, it’s taken me about 7 months to see a change in my arm and hand since getting my DBS brace.  Although my arm hangs more normally when I walk, stress, fatigue and sometimes just being pissed off can make it bend and throw my hand into contracture. Since it’s hot as hell and I’m stuck indoors in air conditioning most days I thought, Why not commit to a 21 day yoga challenge and see what happens?

Now, I don’t think 3 weeks of yoga will result in my suddenly being able to breakdance or play cats in the cradle with yarn, but maybe I will be able better lift my arm and use two hands to wash my hair after doing a daily asana for a couple weeks?

The plan is to attend as many classes as possible at Sol Yoga because being pushed by an instructor is always best. Plan B is to head to the studio on off hours and do my own thing where I’ll have access to props but am away from distractions like laundry. Plan C involves unrolling my mat or plopping on a meditation pillow at home.

Day 1 found me very frustrated by my left pinky toe.

Now before you roll your eyes understand that you use your feet and toes a lot in yoga. Not being able to move them independently is frustrating enough. Having your pinky toe bent the wrong way, hurts like hell. I’m constantly trying to use my good foot to position my bad foot all while keeping myself from face-planting.

I’m also a teacher at this studio and want to represent it well. So hopefully no one heard me when I said, “Mother fucker!” under my breath when I thought I was ripping a digit off my foot.

Oddly enough at the start of class when I got on my back, got out of my head, began to focus on my breathing and got more fully into my body, I noticed that it was my right side that hurt the most. Clearly I spend so much time focusing on my left side that often I neglect the rest of my body, which totally isn’t cool.

We begin where we are and how we are and whatever happens happens. ~ TKV Desikachar

But I really hope something happens.

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I was a few months from finishing yoga teacher training when I received my MS diagnosis.  Considering how many people swear that yoga healed their MS you would think being a teacher would be an advantage.

It would if I were a fly-by-the-seat-of-your-pants, take-life-one-day-at-a-time, obstacles-are-nothing-more-than-opportunities, no-matter-what-my-body-is-my-temple, type of gal.

It would if being in my body while maintaining a level of curiosity was something I enjoyed doing, but back then I found much solace living from my neck up most days.

Experiencing life via my body is something I’ve never enjoyed.

ExTree Posecept when I was on my yoga mat. There, I could be the most present and least judgmental version of myself.  My mat became my mirror giving me insight into my life.

For example, on days when I struggled with with Vrksasana (Tree Pose) I couldn’t help but notice that my day-to-day life was out of balance as well.

Warrior 1If I arrived at the studio feeling overwhelmed and out of sorts, it would be tougher on those days to hold Virabhadrasana I (Warrior One Pose), for very long without shaky legs and a distracted mind.

Meditative moments on the mat would give me insight into what I needed to let go of when my monkey mind returned.

These types of realizations were always welcome and interesting.  I learned a lot about my life during my practice. But once MS decided to join me on my mat, my safe space was all of a sudden, crowded and frustrating.

Suddenly I was too present.  Too “in” a body that was losing it’s functionality. Because I was a yoga teacher, I knew too much about each pose causing my anatomical and physiological know-how to freak me out.

Walking quickly into a yoga class while wearing a pair of shoes told me nothing about my body. But later while barefoot and balancing I’d immediately notice my inability to tense up the left side of my foot. This new knowledge would follow me out to the parking lot and become my focus as I walked throughout my day. Because of yoga I’d notice even the most subtle changes in balance before they’d manifest themselves into more functional movements. This knowledge didn’t give me power. It merely brought to the surface more fear.

As the courage to face my changing body decreased, so did my ability to work on ways to modify my practice, gait or functional life.  In essence, I had completely forgotten to live John Harrington’s famous quote about how, “People need loving the most when they deserve it the least”.

Instead of loving a weak foot that was giving out on me, I shamed it in the same way one shames their cheating spouse. Similar to how we withhold love from thick thighs or a flabby stomach, my increasingly weak left side became undeserving of attention, care or appreciation because it was failing me.

Instead of hating my deficient parts I did the next worse thing. I ignored them. I kept entire parts of myself hidden from view. As my bodily breakdowns increased I spent more and more time focusing on my fiascos, promising to love my body later, after whatever cure I was working on kicked in.

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Yoga’s primary objective of mind, body connection became lost on me as I began to solely focus only on my decreasing strength, flexibility, and balance. Eventually I let my practice leave my life entirely which is why these past few weeks have been so strange to me.  I find myself longing for my mat and the type of movement best completed on a 24 x 68 inch sticky swath of Thermoplastic elastomer.

You see, ever since I starting wearing my DBS I’ve been getting out in the world more. I even took a huge gamble and planned a European vacation only a few months after receiving it.  Last month with walking stick in hand, I donned my brace and traveled through 4 airports and 3 train stations to enjoy 3 beautiful and historic European cities: Prague, Berlin and Amsterdam (Brandenburg Gate Photo by Alice Renders).

At the time of our flight, I had only owned my brace for 4 months and just recently stopped getting tweaks from my orthotist.  I also was pushing it weather wise as Europe can have very hot days in June just like in the States.

Yet the more I walked, the easier it became. In fact by day six of the trip I walked over 16,000 steps while touring Berlin!  Yes, the universe did in fact conspire to help me by giving me a breezy, overcast day that required a scarf and a rain coat but it was my brace and super-cool Canadian walking stick that made all the difference.

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I’m 100% certain that without my DBS there’s no way I would’ve been able to walk through Dulles Airport let alone participate in an overseas excursion for 10 days.

Of course, as soon as I got home, summer showed up in all of it’s extra hot and humid glory, but for a little over a week I was feeling like my old self again.

Then a strange thing happened. I completely forgot what I wrote about last month regarding how gains need to be integrated before they become permanent. In other words, the same pattern that always happens, happened again.  After making a huge step forward in my healing journey, I needed to take a moment and let it sink in.

Ever since the high of the trip wore off, I’ve been very tired.

And then an even stranger thing happened. After spending the last five months significantly increasing my walking steps, distance and momentum, the last thing I want to do is walk.

Maybe it’s the heat?  Maybe I’m just lazy?  Maybe a week of functional walking makes strolling on a treadmill even more boring?  Or maybe my nervous system knows exactly what it needs and I’m finally smart enough to listen?

All I know is that I constantly feel pulled toward my yoga mat. I’m now craving the attenuating movements one discovers when force is not the primary focus. Instead I’m yearning to pose, breathe, sit, stretch, meditate, chant and orient.

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So I will.