Wait, Where am I Again?


*Just kidding, guys: does any of us ever really know where our futures will lead?

Has disability been a fevered dream, or has my brain been now so warped that it has decided on its own in which mortal plane to dally? Do I have any remaining gullibility that lends itself to hoping I have actually walked in both – all! – these planets? Can I be so lucky as to have remit the symptoms that not long ago I was told to accept as normal while my life was chewed slowly from inside to pieces so small they could no longer be divined?

I lost my cognition, and nearly almost too my legs in the bed from which I sometimes could not move. The world always spun and I trained my body into successful accomodations for a 4-dimensional 3-dimensional existence. I accepted that I might never read another book.

Many of those things have largely ebbed now and I find myself stopping with them as though frenemies had been made with the foes and I am still calling kind farewells from the dock across a blank ocean. I am tired of reintroductions between other selves and feel it is my blessed entitlement at thirty-four to not have to deal with myself in this fashion anymore.

ill-just-wait-hereEntitlement is a distortion of veracity and I know better; there are still symptoms that remain steady or pop up are little haunts. My vision is still blurry and moves like like a poorly-animated .gif. There are times of occasional fatigue, and during walks the dizziness and slurring of words remain palpable.

But I am awake again and for the first time in years looking at the path I want to take in this world. I imagine I should know where I’m going.*


The Cognitive Dissonance of Finding my Legs

To aid my nearly-complete pepperonicovery here is a list of 2 things that, when I realized were different, blew my mind a little:

shocked_owl1. Unlike New York last week, the weather had not called for layering tights or long underwear under pants. Stepping off the plane in South Carolina was a bit warmer but still with a strong, crisp breeze. Tired get-out-of-the-airport mode was in effect for both Cat and I, and we trudged to then with our luggage to the parking deck. Steps from our car, I stopped. Were there pins and needles happening in my legs? There were pins and needles, damnnit, for the first time in now weeks… holy crap, that meant I had no pins and needles the entire time I was walking city blocks in Manhattan. Something about the shape of these pins and needles was denser and less regular. Usually pins and needles feel like a constant moving pattern of minute silver lines. Synasthetic response here aside:

In that flash of a moment I realized I was feeling the cold air, and I was feeling the actual fabric of my pants flapping, striking my calves.

bear-negotiationsIt has been years since I could feel anything on or with my legs, which ensured a sudden cameo by cognitive dissonance. It was difficult to understand and I had to stop to process this otherwise normal sensation. I am almost afraid to accept this as a new normal because what a PITA it is to jump between different constructs of reality.

But this sensation keeps returning, and I can’t argue the fact that the only pins and needles my legs have felt in weeks are the small reminders of numbness lingering in the toes of my right foot.

giphy2. After arriving home tired after a long night of errands: It had been normal for Cat to pull the car into the driveway, turn off the engine, and for my heart to sink at the prospect of having to then to get out of the vehicle. I had become used to the forced hoist of a body I couldn’t entirely control. Getting up from the car seat was a body trial. Once upright I’d need to fall backwards just enough to catch my calves on the door frame to reaffirm for my feet which direction I was facing and to give my legs the order to walk.

I got out of the car last night, not thinking, by swinging my legs out the door and popping right up, turning to the left, and walking to the front porch like any ole regular person. Here another realization literally stropped me. I stopped to wonder at this seemingly tiny change, and to be grateful. So grateful. A small change in routine is not only wonderful but affirms that I still live in a body that owns ability.

Add the two above moments of clarity together, add a dose of 500 caneless subway stairs, and holy moly. I hope sorely that this improvement continues because a year ago I used a cane and every step I took hurt. I am 100% ready to never again have a neurologist to perform wheelchair charades as a premonition for my future.

I want to keep feeling grateful.

This is How We Learn

not-a-big-dealOf course pepperoni isn’t gluten free. Gluten is in everything, and pepperoni is MADE OF EVERYTHING. Why didn’t I have logic at the ready in the face of hot bread I can eat covered in forbidden cheese?

Because it was hot bread and cheese at a hungry dinnertime. That’s why. I threw caution to the wind. I ordered… double pepperoni. I had just eaten pepperoni on a gluten-free pizza in Brooklyn and had come out unscathed (not all, just most pepperoni is made with gluten, I have since well learned); there were no immediate side effects from this pie either, other than a full belly of Italian goodness.

my-potionsA day passes. The next, I wake up unable to move. The old gang of disabling symptoms is back: fatigue, cog fog, sublime dizziness, slurring words and at times unable to speak much above a whisper. Oh, and the GI tract drumline showed up to complete this celebration of learning. I flipped the memory Rolodex through the last day and caught a flash of the girl making my pizza looking up to ask “have you had our pepperoni before?”

With eyes wide and feeling stupid, Google confirmed my suspicion: of course you can order a gluten free pizza topped with gluten.

Because I’m not about to make such a grievous error again. This was a schooling I do not want again — the worst was a full day, and yesterday was slightly better (I was able to get out of bed, an act which I have grown to love). This is the third day and I feel almost back at the “new” baseline Manhattan proved; I’ve eaten 3c of greens and 1c of fruit already today. I’m drinking some coffee. There is so much to do that being bored would be selfish and I am not going to stick around in Malaise-town. Learning experiences come at a variety of costs, and if I am feeling better again in 48 hours after [delicious, delicious] exposure then I can file the information away if this happens again [I hope to never let it happen again].

Damnit, double pepperoni. I thought we could still be friends.

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.


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.


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.

Today, I:

anigif_enhanced-19520-1413221396-23– Swept the house and bagged it all.

– Cleaned the litterbox that lives on the first-story landing

– Washed, put away the dishes

– Pulled the dryer out of it’s cubby beside the washer, detached the hose, unplugged it and gave it some sweet fixings. Pulling it out involved a lot of area chachki/ironng board rearrangement (and sweeping), but getting it back in place was a different kind of awkward. I was alone and the dirty laundry was waiting on me so the endeavoring was gentle, but stern.

Then I found myself trapped in the sudden realization of an 18″ cube from which there could be only one escape. Low above my 5’10” hunch were cabinets and the only navigable space would be an an upward, diagonal trajectory with nowhere to grip.

IMG_20141204_163006029(I wrestled with this mentally too.)

After planting my bottom on the washer’s edge and designing it a fulcrum as much in imagination as in physics. it was time to go… up. But only up enough not to bash any extraneous parts on the cupboards. This is where yoga came in! After months of trying to push feet into the ground whether or not they knew what they were doing, my feet knew what to tell my legs and my legs knew what to tell my torso and my torso knew which ways to turn. I pushed into the air and sprang just enough to slither backwards and swing push back into livable space.

And of course no one was there to see it, damnit. My body had just done all the things my mind asked it.

– But it was all for the laundry, which came next.

– I changed the bed sheets

– I fed the kids dinnner, and made ours:

– Oven-roasted garlic chicken and broccoli, to be served with whipped garlic mashed potatoes topped with bacon and nutritional yeast

FINISHED-EPSOM– I took a bath, yo. Epsom salts are a great source of the magnesium of which most Americans are deficient.

In summary, I had no “spell” today. My fatigue was light. I turned in SO MANY DIRECTIONS. Now I can enjoy sitting still because it feels earned. Big differences like this can come right back into my open arms — here’s to (really) hoping the dizziness keeps ebbing and my vision continues to improve. Is this my new baseline? I never knew things could improve like this.

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.