Saturday, October 12, 2013

Starting Tecfidera

Read my latest essay titled: "Flame On: Starting Tecfidera and How I Avoided Becoming a Superhero."


  1. Great to read about your success with the drug lords.
    Continued good luck!
    Your writing is as sharp as ever!
    --Your biggest fan

  2. Hello Kim –

    My name is Sean and what follows is a little something I 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 while I think. Someone I know pointed me in the direction of your blog. 6 weeks ago? I like the way you write. You engage and entertain: E-squared prose. And inform. IE-squared prose?

    Flattery from a complete stranger? Yes I have an angle. I would like to ask you to consider submitting something (or repurposing something) for our upcoming Volume 2 release. Volume 2 of what?

    I was fortunate to meet a like-minded person on yet another MS social site. 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. A bit behind schedule but not bad for an editorial/production staff of two. We are shooting for a March 2014 release for Volume 2. Word of warning: if you opt to ‘Look Inside’ at Amazon please don’t be put off (or alternately impassioned) by what, at first glance, only appears to be religiously themed material. It’s quite a bit more diverse than that.

    I’d be tickled if you’d consider it. I would keel over with elation if you said yes. And I promise to have aforementioned ‘keel’ caught on film.

    One last note: the book is a 100% benefit for the NMSS. I’m sure there are others out there as well. And I would be surprised if you haven’t been approached already by…..the others.

    Have yourself a lovely weekend.


    Sean J Mahoney