Posts Tagged ‘ walking ’

Finding Perfection in Imperfections

CL8ENirWUAAb5KZ (1)The weather hints at becoming cooler. I might be jumping the gun a little — it is South Carolina, after all — but that’s only because a summer indoors has high potential to induce, at best, wicked cabin fever (at worst, I imagine, complete insanity). Though still a warm afternoon principle presupposed physiology when Bernie Sanders came to town.

I made it the 1/4 mile walk from the parking area (a recently plowed dirt lot that happened to exist like a craggy red Martian field across the space between the convention center and nearby interstate) and wound to get in through a line around the building. Once inside, by some grace of the living animal that is a crowd of hundreds, I sat and a staffer immediately ran over with a cold bottle of water. I can do this, I thought. This is awesome and I want to be doing this. 

I remained in good spirits, but my words began to falter. The throbbing crowd seemed to spin around me like autumn leaves in the wind. I just needed to make it to my seat in the ballroom. Unfortunately, that seat was somewhere in this:

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The room was packed as tightly as possible with people who also “Felt the Bern.” I pressed the cold bottle of water into my neck, chest, forearms. At first it was enough to be in the palpable midst of such excitement; the room kept filling up. I realized that it was more than a shared spirit that linked us all:it was our mutual body heat in a room where air conditioning was questionable. By the time Bernie reached the stage I was slumped into Cat and couldn’t stand or speak. I looked blankly at Cat now asking me questions. Blah, blah, MS ruins another day, blah blah… but suddenly Cat was getting me up and out of the room. In what seemed a blur of the arms and legs of 100 strangers, a staffer handed me a cup of ice water, and another staffer shuffled me into the bathroom. “This is the coolest place in the building,” she said, “The seating is terrible, but…”

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[after sitting in A/C for a few minutes]

Within minutes of cold air in a [pretty clean: bonus!] bathroom I began to feel cognizant. “There’s a staffer with pigtails saving you a chair in the hall,” someone ducked in to say. I was able to listen to the rest of the town hall meeting after all, from a plush chair outside the ballroom’s door. Because of these amazing staffers I was able to walk the 1/4 mile back to the car, where air conditioning met me with cold, open arms.

Then we celebrated this warranted joy with tacos from a local carnicería.

A few days later, the A/C in our car died. Cat is, as we speak, tending to having that fixed. Because I am lucky and loved.  “Losing myself” in public is scary, and I can’t be more grateful to the woman I married for taking care of me when it becomes obvious I no longer command the necessary faculties to do it myself. Autumn is coming, the car will again have A/C, and I’m jumping at the bit to start leaving the house more. I am really into this “Remitting” part of Relapse-Remitting MS — once climate shudders off some of the heat, I hope to really get this party [“leaving the house for more than groceries”] started.

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The Learning Pendulum

~1m walked, a dozen posters hung

~1m walked, a dozen posters hung

Yesterday while driving across town from a street on which I’d just walked the length to drop off posters, a heavy ball settled in my gut as though its motion, otherwise subtle in its propulsion, suddenly became evident by an unexpected rest. Everything felt right. I had just spent the day walking boldly through sunny shopping centers with a small stack of posters under my arm, smiling with genuine cheerfulness, talking to strangers without anything embarrassing coming to pass, and, now, driving a car safely and well.

In last night’s Adaptive Yoga class, I got to assist again. I felt strong and capable and nearly left in tears because of that. I can’t find a way to accurately, but not awkwardly, convey how much this class means to me

The day before, I’d spoken with a new Functional Medicine practicioner at length about how to continue these positive changes. I’ve done pretty dang good for myself as an MS patient coming into the sunlit side of neurological crisis without having had any doctor’s care in a year. I feel like my cognition is finally getting back to its baseline (although, let’s be honest, it’s fundamentally impossible to know everything I now leave behind). I then also made dinner, did the dishes, some laundry, and spent 20 minutes in the front yard on some simple labor that resulted in ZERO new injuries.

duchamp4Everything good that happens to me right now feels like a record-skipping visit from Santa that keeps happening. I feel hope in getting — being — better. Science is easy to understand again and I am excited instead of fearful to keep learning. This is the pendulum of things swinging, and I am smart enough to again see that; I am smart enough to know that everything could still be lost to me in a moment and that the pendulum’s nature is always in the reverse of itself.

Until whatever circumstance reveals a return, however, I can focus on the problems that do remain while I can also be lucky enough to help other people (what’s the point of getting yourself better without paying it forward? If the airplane is crashing and you put your air mask on first, the very next step is to help others put theirs on as well.)

Maybe I’ll write that coffee table book on local public restrooms (I have seen and judged them all).

State of The Function

Kale-for-Alzheimers-dietThe more strictly I follow the Wahls Protocol, the more I can feel improvement slowly fading back into normalcy with nearly the same quiet apology with which it left (sorry to leave the party so early, yet chagrined to return without a bottle of wine for the host). It’s been over three months now that I haven’t needed a cane, my fatigue levels have stabilized, and my cognition feels more trustworthy.

I had a cold this week. The ease of dealing with it broke me into tiny peals of laughter more than once. Of course it was a pain in the bottom and I felt bad. I stayed in bed one day. Every moment of this situation passed under rapt scientific awareness — specifically, how different it felt to stay in bed with a cold as opposed to staying in bed because of MS. Of course my entire body was tired… but I could still move any part of it I liked. I sneezed a lot and am sporting one of those red noses dusted with a snow of dead skin to prove my victory over this tiny trial; I took 50mg of zinc and was better by the morning.

And as if to overshadow that tiny joy with terrible reminders so as not to yet take newfound health to heart (and thereby, for granted):

  • Remember that your bladder’s not paying any attention to dietary changes
  • Neither is the spinal degeneration
  • My eyeballs still hurt almost all the time
  • Swallowing is still a thing
  • The Pseudobulbar Affect and thundering anxiety cause too many problems

…But, hey, remember too:

After over a year of terrible care from my neurologist resulted in significant cognitive and physical disability (dude, that speech impediment was completely terrifying and I am endlessly grateful it hasn’t stuck around) I finally got that appointment with a neuropsychiatrist (it only took a year). It was a huge relief to talk to someone, knowing they were schooled in exactly how lesions on the brain can manifest, about the emotional side effects of MS.

(I am honored to have designed this logo for the event)

(I am honored to have designed this logo for the event)

There have been so many more reasons to feel grateful than maligned; sure, there’s still bad stuff… But right now I can walk without a cane (not since 2010!) and without going numb from the waist down (not since 2005!). For those and other reasons, I’m going to join the parade for the upcoming #MindsOnMain event in Columbia. Please consider helping me raise money for the National Alliance on Mental Illness Mid-Carolina chapter by clicking here or on the image to your left — all donations go directly to funding programs and services that help the 1 in 4 adults who are living with a mental illness. Mental illness is a common attachment to MS, either by way of lesions (Pseudobulbar affect, holla!), by being terrible to you, or to your loved ones.

#MentalHealthMatters because the brain is a part of you, and you are a part of everyone else.

The Evolution of “Free Time”

10940565_10152560878573038_929884811307394105_n I shit you not, that is really me. I am wearing ice skates on the rink at Rockefeller Center.

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And also we got Michael C. Hall’s autograph. I mean. 

We spent the weekend in NYC to see Michael C. Hall’s final performance in Hedwig and the Angry Inch. We got lost around Manhattan both on and not on purpose. I walked — still without a cane — around miles of city blocks. We came across a flea market in the Upper West Side, and dined in a tiny Indian restaurant once visited by Vice President Al Gore. We had gluten free NY-style pizza in Brooklyn and saw a cousin I haven’t laid eyes on in twenty years. I had a cocktail with dear college friends before heading to the Belasco theater.

Oh, and the walking included ALL OF THE SUBWAY STAIRS. A realistic tally would be (really) 100 stairs each day. Over the entire course of the weekend, despite the amount of time spent walking I never lost sensation from the waist-down.

I’mma need to repeat that with italics: I never lost sensation from the waist-down. Since 2005, it would only take about .25m of ambling before I began to lose feeling in my hips, then thighs, calves, and feet (and eventually the feet stopped being a part of the process altogether; I simply couldn’t feel them and relied on trusting the reality in which I of course had feet). The first time I noticed it was during a long trip to Home Depot, and it was at least another year before I admitted it aloud (saying it out loud would make it real).

Back to the ice skating thing: Now, the biggest mistake I made was putting on skates a size too big. I only made it around the rink once before I was afraid of breaking a shin.

Ice-termath, both shins

I have so much to be grateful for right now that I can believe remaining troublesome symptoms that have not yet resolved might actually improve. Visual focus and diplopia, nighttime spastic bladder are both still problems. I still get ungodly dizzy… but a little less often. I have started feeding the dogs with fewer problems changing directions and bending over without internal tragedy. I have been without gluten for about three months, and I am only doing my best at eating 9 cups of vegetables a day. But it’s becoming an easier rhythm the more I stick to it — and the better I feel, the more I want to not cheat on this diet. My mom thanked God and Dr. Wahls in the same breath when she saw the picture of me on ice skates.

Back to the ice skating thing: Now, the biggest mistake I made was putting on skates a size too big. I only made it around the rink once before I was afraid of breaking a shin. But I went around the rink once without once touching the rink with my bottom. Shins aside, this is a total win.

Good News v. Bad News (SPOILER ALERT: “Good News” wins)

BAD: Today I am fatigued and mostly in bed. Of course that still happens, and of course it happens after…

GOOD: Yesterday I spent three (three!) hours walking around a festival of local artists and artisans. Finding a seat was the last thing I did, as there were aisles to roam up and down. I was able to walk in a multitude of directions with no cane. The dizziness was tolerable — nearly a first in this sort of situation.

Can you see why these changes are rocking my world?

Can you see why these changes are rocking my world?

GOOD: But not a first, because at a grocery this week I noticed halfway through the store that I could see things around me. I have become accustomed to my surroundings transforming into a hyperspace-like blur of lines that travel parallel to whichever way I head. I am used to stopping at the colors of brands and logos I seek and remaining unable to focus my vision on anything (I’ve been known to come home with liquid dryer softener instead of detergent, conditioner instead of shampoo, etc).

BAD: Our car was unexpectedly held four days for repairs.

GOOD: Borrowed a pristine Corvette for four days.

LouLou tried on Cowboy's sweater. Neither is comfortable with this.

LouLou tried on Cowboy’s sweater. Neither is comfortable with this.

BAD: This week there was a visit to the vet, a call to a plumber and the car is in surgery until Wednesday.

GOOD: Still able to shop for gifts.

GOOD: There is a pile of gifts to wrap sitting in the bedroom. BAD: Oh, but laundry to fold first.

Wait!

GOOD: We have clean laundry.

GOOD: The dishes are done, dinner’s on the stove, and other work is 50% complete. All I really have to do for the rest of the day is fold laundry and wrap gifts. I can tell my body’s not at 100% right now, but there’s been enough time in the day to accomplish everything without overdoing it. I know is that this fatigue is because I was able to spend yesterday doing something I haven’t been able to in a very long time… and that feels a big chomp better than this fatigue does desperate.

Pobody’s Nerfect

toot-toot-modern-bicycleOk, deep breath.

I know variables that contribute must be:

  • The weather has been kind.
  • 3 months into both, Gilenya and
  • Ampyra are fully back in my system
  • 2 months without gluten, and
  • Moving into an established version of The Wahls Protocol*

More time and understanding, and some dialing-back of joy (because it could still all change again tomorrow… I mean, I hope it won’t but it’s too early to lose skepticism) have to be instituted, but I haven’t needed to use a cane in four days.

Last night, as a matter of fact, I felt my legs for the first time in over a year.

I could feel the ground on which I was standing.

I skipped for several yards in a public shopping mall.

I didn’t need to use my arms to lift my legs out of cars.

Driving isn’t a problem.

Dr. Terry Wahls before/after instituting her protocol

Dr. Terry Wahls before/after instituting her protocol

Now, swallowing and dizziness are still problems. I woke up to use the bathroom 13 times night before last, and I have still had a “spell” or two (as opposed to every day, like clockwork), but nothing worse than normal. Overall, things are better right now than I would ever have expected.

If I only get this kind of self-pampering for four days, I can’t not be grateful for it — but I do feel like I can be entitled to to a little genuine hope, and I feel like my motto (“There’s never been a better time to have MS”) is paying off.

yeahsciencebitch*Pobody’s nerfect, but I’m headed for long-lasting change here and that takes a minute of life-rearranging for the Italian cook writing here: I’m good and Paleo now, but the Ketogenic part of things is going to be a challenge during the holidays. I must reiterate here that I can see a light at the end of my tunnel vision, however, and it feels incredible.

Walking Vision Photos

Accidental selfie is accidental

Accidental selfie is accidental

Of course it’s going to get difficult and uncomfortable, but there are benches galore along the path at the Riverwalk and an unlimited number of natural photo ops while on those benches. The camera can capture on what my eyes won’t be able to for the next several minutes. In the meantime, while my neurological self bemoans its tough time, I know that my actual human body benefits from the aerobics.

With respect to the moments I can’t walk on or see, please enjoy these photos — they were all taken while my vision was spinning/doubling/blurring. I still consider it largely unacceptable to not appreciate what’s around me, and I was excited to see how nicely a couple came out.

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In the last two days I’ve walked over 3 miles, and for it I get beautiful photos. Things get bad for a while, but just look at what beauty would’ve been wasted on me without a few snapshots. I guess this is my official middle finger to the deep-seated fear of losing my vision. My middle finger tries to keep it classy.