I planned on blogging again to talk about the cool stuff I’m doing for my MS. Then President Fucking-Feasance took over my brain. So today I’m going to get it all out of my system and move on. Fucking-Feasance? Although I’m not a lawyer, Trump has clearly carried out all three types of failures like …

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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. …

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Shut Up and Do the Work

February 20, 2016

Today, in Frederick, MD it was 64 degrees on February 20th!

I ran to the bank early this morning when it was only 47 degrees and the insanity had already started. Folks in tank tops were jogging around snow piles that were 2 feet high and lots of shorts were seen walking in and out of stores at the Frederick Shopping Center. I didn’t notice any flip flops, but regardless everyone was enjoying the opportunity to get outside for a walk or a run.

When I got home my husband told me that as soon as he finished our taxes he was going to talk a walk.

“Lucky,” I said, Homer Simpson style, accidentally blurting out something that I should’ve just said to myself.

“Oh, sorry,” he sheepishly replied, as I realized my error.

I felt bad. He has nothing to be sorry about! It’s not his fault that I walk like Igor. He certainly deserves to take a brisk walk on an unseasonably warm February day like the rest of the greater DC area.

I’m proud to say that within moments of my stupid remark I thought, “Just shut up and do the work, crazy lady”.

Instead of acting pissy and feeling sorry for myself, I immediately remembered that not only is there a highroad where my attitude needs to ride, there’s also a low-down and dirty road where the hard work needs to get done.

Once I made that connection an interesting thing happened. When I laid down on the floor to do some Feldenkrais movements, I was able to increase my range of motion.

For the past six months when I’ve tried to do this:

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I could only do this:

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My leg would stay stiff and I’d have to put my hand underneath my knee to help it bend or kick the bottom of my left foot with my right foot and shame my leg into flexion.

In her latest book, Big Magic: Creative Living Beyond Fear, Liz Gilbert notes that one of the keys to living a creative life is to do the work, even on the non-inspiring days when you’re staring at a blank page or making terrible art. She suggests keeping your head down and staying devoted to your craft so that when inspiration strikes, you’re ready and able to receive it.

I think health might work in a similar fashion. When you’re in the absence of function, do the work anyway. If you can’t walk, then work on phases of the gait cycle. If gravity gets in your way then lay down. Just get on with it so that when health strikes, you’re ready and able to receive it.

So instead of bitching or zoning out I stayed inside my house, did my exercises and for the first time in months I was able to move like this:

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I was almost able to bring both knees together, evenly. Although I still have a ways to go, I figure its only a matter of time before I can not only do the above with ease, but do these moves against gravity while standing which would be a game changer.

Suddenly missing a 64 degree day doesn’t seem so bad.

Failing to Surrender

February 16, 2016

Although there are many approaches to healing chronic, non-healable conditions, I’m fairly certain they all have one thing in common.

Surrender.

You have to surrender your need to heal yourself if you want to heal yourself. If you’re determined to fix your health problem you must be 100% okay with not fixing your health problem.

I know it sounds crazy, but I’m starting to believe it’s true.

I think this type of surrender is different from traditional surrendering because when it comes to sporting events, you flat out lose if you surrender. During wartime you not only submit to your enemy, but hand over territories, fortifications and armaments upon surrendering. Neither would be helpful to me as forfeiting or submitting to multiple sclerosis doesn’t seem like a good idea. That feels more like giving up.

In his book, Letting Go: The Pathway of Surrender, author David R. Hawkins notes that it’s more important to focus on feelings rather than thoughts. Then, since we are not our feelings and because feelings come and go, he suggests that we simple bear witness to them without trying to resist or alter them.

Hawkins wants me to be neutral with my feelings. But if you add my recent nervous system work into this equation, Irene Lyon would ask, Where are those feelings showing up in your body? How do you actually know what you’re feeling? How does your body give you this information?

Fo example right now I’m ambulatory, but when walking around my house I have to drag my leg everywhere. When I think about my leg, I get scared for my future. I picture myself in a wheelchair while thinking about the four different stairways in my house! Then I follow that thought and picture me being a prisoner in my home before saving up to move. Then I follow that thought and dash my dream of vacationing in Positano or returning to my yoga studio on a regular basis. Then I follow that thought…

Hawkins would tell me to cut that shit out! Ignore your thoughts and just focus on your feeling which is fear.

Lyon would take it a step further and tell me to do the work. So I’d orient (note that I’m safe), scan my body and notice the pressure in my chest, my climbing heart rate and how I’m holding my breath. In other words I’d recognize that fear shows up in my torso, vascular and respiratory systems.

I can’t change fear and frankly, I don’t want to. I need fear in case someone breaks into my house or I’m ever stuck in an elevator with Bill Cosby. But I can do the following:

I can change what my body does when fear shows up: I can breathe. I can feel my feet against the floor. I can acknowledge the pressure in my chest but once I orient to the room and notice there’s no wheelchair to be found, I will no doubt notice the pressure subside.

I can be neutral regarding fear every time it shows up accidentally because of my thoughts: Fear created the wheelchair not reality. It doesn’t exist. And although it’s not always pretty, my leg still climbs every damn staircase in my house. So fuck you, fear. I’m good.

As for my need to heal MS. I have to surrender that as well. Hawkins claims that “surrender is complete when a person has let go of needing or wanting a physical healing to occur”.

In other words, I need to be okay with not being okay while I do the daily work to be okay.

Okay?

Day 35: Failing to Actually Have 366 (It’s a Leap Year) Failures

February 12, 2016

After putting my failures (and a couple of my success) out for the world to see this past month, I don’t think daily blogging is necessary or even achievable. I gave myself a year to focus only on my MS journey. A year to be “all in” and willing to risk failing fabulously, to see what I could achieve. Basically I’m trying to figure out what works, what doesn’t, what needs to be tweaked and what needs to be thrown out all together.

This blog was started for a couple reasons: To keep me on track and to put my diagnosis out there for when I run into people either in Frederick, MD or back home in Washington, PA. I thought it would allow me to skip over the 20 minute MS conversation and instead be able to spend that time catching up with friends and discussing more important things.

If someone with MS stumbles on this blog and benefits from my experiences, that’s awesome. But I’m not writing it specifically for the MS community. There are so many wonderfully researched, well written MS blogs out there (Here are 25 to check out if you’re interested). I certainly can’t re-invent that wheel so I’m not going to try.

A final reason for this blog was to come out of the disability closet. It’s exhausting to hide a limp or pretend to be well. It’s also exhausting to be chronically ill. It’s exhausting to do all the mental, physical, nutritional, medical, emotional and spiritual work to self-cure a chronic condition. It takes a hell of a lot of energy to walk poorly. Walking without a limp is certainly more efficient.

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I’m convinced that the only way to gain back my energy and fix my gait is through movement and awareness, not by sitting in front of a computer writing about movement and awareness. So I’m going to spend more time doing and less time worrying about getting a post pre-scheduled for each day.

Since my diagnosis I’ve learned that an all or nothing attitude is futile. Be it writing, walking, or healing, some days will be better than others so it’s best to do the work daily and document that work as needed, when able or when inspired to.  And besides, now I can take my time and honor my creative side writing posts the way I see fit, not just to quickly hit publish on a daily basis.

Day 31: Failing to Explain How I Plan to Kick MS’s Ass

February 8, 2016

This past November I started an online course with Irene Lyon, called The New Inner Game. It’s a 12-week nervous system rewire. Irene combines her kinesiology and bio-medical research backgrounds with her Feldenkrais and Somatic Experiencing certifications to do some pretty ground breaking work.

The toughest part of this work is explaining it, but I shall try…

Everyone suffers from trauma. We suffer from emotional wounds, shock trauma, acute injury, psychological damage and chronic stress and as such we’ve all been thrown into multiple fight, flight or freeze responses due to traumatic events throughout our lifetimes.

Unlike animals that automatically discharge excess energy once they’re safe, we humans let that energy build up. This disrupts our autonomic nervous system and causes our vagus nerve to malfunction.

Because the vagus nerve (which prevents inflammation) connects the brain-stem to our visceral organs and the Autonomic Nervous System unconsciously controls all of our body systems, this disruption eventually shows up as disease and/or emotional issues.

Irene has been teaching me how to work at the subtle, internal, somatic, (body) level which helps me to move with more ease and less tension, better follow my impulses and not only notice but also discharge this excess energy.

Research is now showing that this type of work will not only re-balance my nervous system but by toning and strengthening my vagus nerve it will also help to decrease my chronic inflammation and strengthen my immune system, improving my overall health and wellness.

In case you’re wondering if any of this is valid, her work dovetails nicely (and is partially based on) the research coming to light about how adverse childhood experiences (ACEs) negatively affect health in adulthood (Donna Jackson Nakazawa has written extensively on this). How trauma gets stuck in our nervous system causing psychological problems and health issues. (Peter Levine’s lifework.) Dr. Gabor Mate has been exploring and writing about how the emotions we process are connected to our hormonal, nervous and immune systems while Dr. Michael Merzenich’s research in brain plasticity has completely changed neurology as we once knew it.

So yes, the nervous system can be rewired. That’s what I work on every day and what I hope to ultimately succeed in achieving. But it’s complicated, nuanced and multifaceted. There’s no nervous system re-wire pill that I can pop. (However if you have severe epilepsy or depression you can have a vagus nerve stimulator (VNS) implanted in your chest wall to send mild electrical impulses to your brain via your 10th cranial nerve which is cool!)

But for the most part, doing this work takes, time, patience, mindfulness and requires movement, resourcing, orientation and sound to get your autonomic nervous system back on track.

I’ll be blogging about this in future posts but suffice to say this is a cool and exciting option if you suffer from one of the more than 80 autoimmune disorders, emotional distress, or feel chronically overwhelmed.

If you’re interested in your own personal re-wire another 3 month session starts next month. You can also work with Irene 1:1, dig into her blog or download her free content. Go to her site for more information or message me if you have any questions.

 

 

I was away this weekend which made blogging tough. Although I failed to write a post, I thought I’d officially use my blogging failures as opportunities to showcase blogs, sites and other artists, writers and scientists that I follow. One of my favorite blogs of all time is The Blog That Ate Manhattan (TBTAM), written …

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