If there was one true thing in this world, it was that I could always beat Nick at leg wrestling. I came about this accomplishment quite naturally – through my genes, mostly. I'm from pretty hearty stock, in case you haven't noticed. That, and the 20 years of dance probably didn't hurt either. I got… Continue reading Sea legs
Category: Multiple sclerosis
It's MS Awareness Week, and I've nearly succeeded in proudly donning our signature color every single day. Funny how orange, which I once associated with the MS prison I felt locked up in, now has a different connotation. I see the color as one of power, strength, resilience, solidarity. I wasn't able to make it… Continue reading Orange crush
Rumors of my demise were greatly exaggerated
When we last left off, our heroine was fumbling over her myriad passwords and tolerating the brutal Arkansas summer with aplomb, whatever that is. As the months ticked by, she bravely trudged on, juggling her jobs and home life and health. On the MS front, things are pretty OK. Not perfect, no. That would require… Continue reading Rumors of my demise were greatly exaggerated
Is it just me?
I can't decide whether I'm a victim of my own technophilia or the scrubbing-bubbles effect MS can have on the brain. Lately, it's logins. I have nearly four dozen of them, all told. Two I know by heart. The rest are a confusing heap of random qwertiness that leaves me grasping at straws for the… Continue reading Is it just me?
‘Mine is not a unique situation’
So said David Rakoff in the months before he died. "Everyone loses ability. If you're lucky, this happens over the course of a few decades. If you're not, (meh). But the story is essentially the same." And he dances. A few sweeping, sentimental gestures. A rueful smile. His grace is beyond words, although he does those… Continue reading ‘Mine is not a unique situation’
Not disabled enough
I've never much noticed whether any quizzical, judgmental glances are thrown in my general direction when I break out my placard and park in a handicapped spot. To the casual observer, I look to be in good shape besides needing to shed like 50 (OK, 75) pounds. Most days, I display no obvious symptoms. I… Continue reading Not disabled enough
Why hello, stranger
Yes, I went dormant for a couple of months. No, I'm not falling apart. Yes, the triple-digit heat is a tad miserable. No, "they" won't install misting tents every 50 feet for my convenience. Yes, I heard about Jack Osbourne. No, I didn't watch his mom cry about it on The Talk. OK, maybe once.… Continue reading Why hello, stranger
Vanity, thy name is …
I will be the first to admit that I won't be strutting down a catwalk anytime soon. This body of mine, while huggable and sometimes strong, isn't model material. I know and accept this as a universal truth, much like I acknowledge that the sun rises in the east, and Charlize Theron is an alien… Continue reading Vanity, thy name is …
21st PPC is in the books!
What a whirlwind week it has been. I was honored to take part in the National Multiple Sclerosis Society's Public Policy Conference in Washington, D.C., these past few days. Activists from around the country met for two days of rigorous training and discussions, and then the society let us loose on the Hill to talk… Continue reading 21st PPC is in the books!
You ask any organization what its biggest resource is, and the obvious answer will be people. Not just staff, although they are the lynchpins to a nonprofit's cause, but volunteers. How to educate, motivate and mobilize those volunteers takes a Herculean effort. Some would say it's Sisyphean. But I'm not listening to those naysayers. Maybe… Continue reading People power