Posts Tagged ‘ heat ’

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…”


[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.


Down the River

july242014Expecting a magical transformation from last time’s lessons, I almost dared the sun to do its worst this week (for a couple of hours on one day of this week, that is — let’s be honest here, I survive mostly indoors).

Even on her best temperature patrol, my wife couldn’t compete with 92° heat on a partially-cloudy day, and though I was grateful for a breeze, it did more resemble a preheated oven being opened to insert cookie dough. Except without the cookie dough. By the time we were shuttled to the river, the heat had long since thawed my two cool pack,s and my once-icy water bottle was tepid. The guides left us and my ankles touched the water — a half hour of blazing fogginess and choking on the inward sobs which questioned the validity of my hopeful experiment (SCIENCE!) was instantly reversed: I immediately began discerning a coming back to the very consciousness I’d begun to feel melting.

Now, of course, don’t try this at home.

IMAG1692-(1)I’m not bragging, let me specify — it’s not a great idea to put yourself knowingly in harm’s way. What if the sudden temperature change didn’t help, and I had to float down a river convict to its wild whitewater whims? I mean, I stopped driving cars this summer, so why would I chance committing my untrustworthy body to rushing water?

Thankfully I was so very correct on the temperature hypothesis, so I am letting myself dance a congratulatory jig which only I can literally see.

Like last time, when my bottom came into contact with the 50° water I perked right up with a lot of very instant and urgent things to say about the freezing of my cheeks. For the next two hours, and for what’s probably the first time since doing this last year, I enjoyed sitting in the sunlight.



Discombobulation: The Silent (or, at least pretty unintelligable) Killer

Judging by this one thing on the internet that I’m not married to the veracity of, the chances on experiencing “disorientation” jump dramatically from your twenties to your thirties.


I during my twenties considered myself aging like a properly shelved fine wine, not like a jar of mayonnaise that was left outside in Al Aziziyah, Libya. Hindsight is confirmation that for me cognitive difficulties have matured over the last several years. A large part of my day is now spent sitting wide-eyed recounting what I got done since I woke and what else needs to be done. Usually the wide eyes stick and I am lost in the downward spiral of feeling overwhelmed by all the things I’d like to be taking care of if

  • I wasn’t so dizzy.
  • my legs weren’t so heavy.
  • it wasn’t so hot outside.
  • my eyes would calm down.
  • the fatigue wasn’t inwardly crushing.

There are the “easy chores” that make life more tranquil by benefit — setting up the coffee pot for the morning, washing the dishes, wiping counter tops and cooking (cooking isn’t always necessarily easy, but more often a beloved meditative practice). After the easy stuff’s done I can check in with myself; sweeping and laundry would be next on any good housewife’s list but both require certain bending postures that are difficult to come out of. Keep adding to this list any chores or household/financial chores your day might normally require.

At what point on that list do you get a wide-eyed stare of disconnect as though your brain is a breaker box whose circuits just flipped the house dark?

Were I to micromanage the time as I am want to do with all the details of all the things, I don’t know if I’d be able to give a specific answer to that question. I do know that sometimes while my “computer” is rebooting it helps to simply think about happy things; while there is even the smallest moment of limbo between doing- and raging-against-what-is-unable-to-be-done I have the power to reset the attitude into which I went into the breaker.


  • I am grateful that I have gotten things done today.
  • I am grateful that I’ve been able to cajole Cowboy into sticking around with me on top of, instead of underneath, the bed today.
  • I am grateful for music of most kinds, but especially this current station on Pandora.
  • I am grateful for a working computer

    Dark Devil's Food with Cream Cheese/Dark Chocolate Peanut Butter Cup Icing

    Dark Devil’s Food with Cream Cheese/Dark Chocolate Peanut Butter Cup Icing

  • with working internet access.
  • I am grateful that this morning my wife brought me coffee in bed…
  • along with the last two pieces of birthday cake for breakfast.

Oh yeah, me. The day actually started out really nicely — channel that feeling instead of the daily dread daze. There is still daylight and I will get done the things that need to be done today. Not only was I brought my morning coffee from downstairs, it came with cake. Now that is the perspective in which I should keep all of the details of all of this day.

Saturday, around noon, I took back a package UPS delivered to us again, instead of to one street over where it belonged.

By the time it took me to walk from the house to the car, then drive around the corner, walk up someone’s driveway, and back to the car in 90+ degrees (with an obvious 4000% humidity level), I was exhausted. Seriously, I had trouble walking back to the car after dropping off the misdelivered package.

Sometimes I can’t believe how little it takes to go from “normal neighbor” to “disoriented and stumbling neighbor.”

Tonight will be dose #2 of 1ml. In hindsight, the noon after the first shot was probably a poor choice of neighborly timing.  In hindsight, I should’ve just called UPS and had them come pick it back up themselves. These are all ideas that I imagine will be common sense as the future sallies forth — until then, I need to watch myself. Despite all my fancy book learnin’, I find I can be an awfully dim bulb.

It seems like I’ve taken to scheduling my life as much as I can around things either beyond my control, or surprisingly within it. I’m still on that fantastic 4-star voyage of discovery — is it the Betaseron? That is, after all, what needing to take Short Term Dis was all about. Will my emotions stabalize, will my sight ever be a little less of a guessing game?

I find it kinda… gross… that I don’t know how to put myself first. For me to be “lucky enough” to have a disability that gives you a “take it easy… it’s good for you!” card, and be ill-equipped to handle the terrible pressure of being good to yourself?

What on earth is wrong with me.