Posts Tagged ‘ rrms ’

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.


Some Motivation Required

some_motivation_required_exercise-300x225My wife volunteers weekly at an adaptive yoga class here in town. It’s the first I know of around here that’s geared towards people with physical disabilities that limit their movement. Because I have heard so often from people what a healthy-looking person I am to have MS, I didn’t really consider myself in the same need of adaptive yoga as the students who entered class in wheelchairs or with paraplegia. In fact, I was the only one who showed up not in a wheelchair. Talk about feeling like the biggest walking punchline in the room; not only did I feel like the odd man out inside the studio… but walking out after class was confronted in the remaining daylight by how much safer and slower I did need my yoga. During the hour-long class it was made apparent just how little punchline there was, as I felt as challenged as anyone else. I left sore with a body that felt cleaner (rain notwithstanding).

medium_4584502251I left, too, with an understanding of my own limitations that had been previously been swept under the table. Maybe in conjunction with our recent transfer from up- to down- stairs bedrooms I was better able to pick up on little lies I was telling myself. It’s really been sinking in slowly that my ability to walk should not be taken for granted. Yes, I’m young — only in my early thirties; alas, my condition, in relation to this, is not. My pelvis continues to be wracked by the same pain during the night as it did when I was 13. I had MS for more than half my life before it was diagnosed a few years ago. My “normals” aren’t completely new — in the way a frog can be boiled without knowing, I have adapted as bridges present themselves for crossing. So now there’s a cane involved, whatever, I’m still not being boiled… right?

Wait, which metaphor am I using again?

Point is, I think, that I’m scared that RRMS is over and SPMS has started. I don’t feel as much remitting after a relapse… in fact, I am uncertain if I’m not having an exacerbation right now (increases in bladder and spasticity problems) and I’m scared that the Gilenya isn’t working.

419140_470645949683011_886272741_nFeeling that little gut-punch of believing the worst of yourself is something I’m training as a red flag. I am no stranger to anxiety and I am tired of it taking over — when fear starts, it is time for a GRATITUDE ADJUSTMENT:

  • I am grateful for adaptive yoga for people with physical disabilities.
  • I am grateful to do something good for my body that doesn’t cost a worse price.
  • I am grateful that there are groceries in the kitchen.
  • I am grateful for all of my Rx medications.
  • I am grateful for a fun morning out with Mom this week.
  • I am grateful that Cowboy got to see his ridic-beloved Grandma.
  • I am grateful for Facebook photos of my nieces.
  • I am grateful for my amazing wife; truly, I mean this every time I write it even more than the last time.
  • I am grateful for a SSDI court date!
  • I am grateful for silver linings that open up the end of a tunnel.
  • I am grateful for you. Thank you.