Sunday, October 20, 2013

Oh, duh...

Yesterday I lost the whole day to an allergy attack with sinus headache--the only thing I managed to do besides sleep and sneeze and whine was to vacuum the breezeway.  When I was falling asleep, I remembered the days when I enjoyed, not housework, no, but the feeling of accomplishment that comes when the housework is done.

Despite my general reluctance to give any of my money to large, sprawling charitable organizations, one of my colleagues is currently battling breast cancer, and when Mom said she was interested in charity walks, I signed us up for this one.  While we were en route to the walk, I talked to Mom about how yesterday reminded me of how, back when I was depressed and un-medicated, the simplest things caused me to give up and turn into a slug.  I told her that I think it might be time to bump my Lexapro dosage, and so I'll be sending an e-mail request to my neuro tomorrow.

The walk was nice--2.8 miles around the University of Akron campus, which has changed a ton since I was there.  It was quite chilly, but the sun was shining, and thankfully someone took our picture before the walk started, because I was a sweaty wind-haired mess by the end. :P

An ordinary but still rather revelatory Sunday in the life of me.


Murphy Jacobs said...

It all comes down to spoons.


Jammies said...

*hugs back* I think more Lexapro would mean an additional spoon. Maybe even two.

Anonymous said...

Hello Jammies –

My name is Sean and what follows is a little something I just posted on the boards at one of the MS sites I belong to:

*I had an interesting experience last night. Wife had a coupon for 1 week free at the local 24-Hour Fitness center. She wanted to swim. She wanted me to go with her. I didn’t feel like getting in the water but agreed to go. I would read while she swam.

We got there and went in. She had to fill out some paperwork and the fella signing her up asked me if I was going to use the weights or swim. “Neither – I’m just here to read.” He smiled oddly but continued with the ‘pitch’ about the facility. He brought up the basketball courts – perhaps because I’m tall. “Got intra-league play tonight. Some kids of NBA players and a couple of former NFL guys. They run full-court games.”

Great. I played basketball frequently and with great gusto for most of my life. I can’t anymore. I can’t run like that anymore. Or even very well anymore. I could play H-O-R-S-E. Or MSSUCKSBALLS. Or participate in free throw contests. But no running.

But that wasn’t the moment I truly felt out of place. That happened later when I was waiting for wife to reemerge from the lockers and I was sitting in the main thruway between reception and the lockers (really nice and modern facility btw). People coming and going. Lots of chit chat and banter: You workin out? You swimming? You lifting? And so on. There I am reading work by poets with disabilities talking about how the world at large defines them via the visual representation of defects or breakdowns that the physically impaired have absolutely no control over. And there I am in my work clothes: shorts, shirt, hiking boots. Looking totally normal on….the…..outside.

I am struck every few weeks by this peculiar situation that I find myself in. The MS hasn’t ravaged me yet. It’s like I am stuck inside the membrane that separates unimpaired and impaired. I’m a ‘tweener. And I’m reading poetry and taking notes inside a state of the art fitness center where I am not participating in the ritualistic honing of my body.

I didn’t feel strange so much as I was struck by the juxtaposition of me and them. And by this sort of limbo state. Anyone have similar experiences….the feeling that you are stuck in a Jacques Tati moment? I am curious.*

Curious about our extraordinarily curious disease indeed. I was Dx 4.4.2012 with PPMS. Still work. Still function relatively close to normal. Still write quite a bit. Primarily poetry for the last year or so. Moving back to fiction soon for a little while I think. I don't have DMD options so I take LDN and a slew of supplements.

Someone I know pointed me in the direction of your blog…maybe 6 weeks ago. I like the way you write. You engage and entertain and inform…and all under the umbrella of being human with MS. It’s truly shocking you know.

Flattery from a complete stranger?

Yes of course I have an angle. I would like to ask you to consider submitting a little something something. A slice of poetry? A bowl of prose? A re-purposed blog entry? And for disclosure's sake this is entirely a benefit project for the NMSS.

I was fortunate to meet a like-minded person on yet another MS social site and she had an idea for an anthology of prose and poetry written and compiled by people with MS. The ‘We Write for the Fight’ MS social group released Volume 1 of the Something On Our Minds anthology in June of 2013 (available at Amazon and A bit behind schedule but not bad for an editorial/production staff of two. We are now gathering material and tooling up for Volume 2, which we hope to release in March of 2014. We need strong voices. Profanity is optional.

I can be reached at seenjo11[at]gmail[dot]com. Damn spiders.

Please consider it.

Thanks for your time.