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 to PPC day in Arkansas this year, but I heard that other activists and legislators now know what orange stands for. That’s a good feeling. We’re making inroads in areas where we need to make a big impact.
We just held our first ever Orange You Lovely fashion show, which raised thousands of dollars that will go directly to research and programs for those living with MS.
Of course, the color du jour was orange, in every shade imaginable.
See more outstanding Angie Davis photos.
We hope to make this an annual event, bringing together even more supporters.
And I hope this week is one of increased awareness for everyone and that everyone has been an activist in some way.
Fight on, my fellow MSers!
Filed under: Advocacy, Multiple sclerosis | 2 Comments
Tags: multiple sclerosis, National Multiple Sclerosis Society, orange advocacy
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 a chocolate-covered cure. But no new exacerbations – chalk that up to less stress on the job front.
Still, there is much work to be done. More funds to be raised. More research to be conducted. More services to be offered to MS patients. More programs to help those who need it.
Which is why (drumroll): I am this year’s chairwoman for Walk MS!
It’s a huge honor, and one I took on after being asked in December.
So it’s my mission to get the word out about MS and how warriors fight it daily. Get team captains motivated. Get the givers to giving. Get the public to care.
What did Voltaire say? With great power comes great responsibility.
I hope I can make an impact in my small corner of the world. I hope I’ve already done that, in some small way, with these ramblings.
But now it’s your turn to step up in a big way. HELP ME!
Join my team. Or donate. No amount is too small.
I’m a big believer in good deeds. Prove me right, friends!
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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 right combination, even though I created the thing in the first blasted place.
Which means I have to change certain passwords a lot because I keep forgetting them … and sometimes I write them down, but I don’t want to say what account they are tied to, so then it comes down to these sad clues I leave for myself, Memento-style, that I never seem to figure out.
Yes, for some I opt for it to remember my login info. But that’s not 100% foolproof. Take this blog —
You know you have MS if your brain fog is so bad you forget how to log into your MS blog.
It’s only more recent information I seem to have a problem with. I will probably recite my childhood phone number and street address on my deathbed. (Mom and dad, kudos on raising a child know her safety info!)
Part of me thinks it’s not really me but the information overload we all must struggle with as modern-day denizens of the digital world.
I have friends who complain of the mom-brain syndrome.
My husband forgets where he leaves his pocket stuff on a daily basis.
And here’s where I forget my next thought …
Gulp. Sometimes it is me.
Filed under: Multiple sclerosis, Struggles, What was I thinking? | 5 Comments
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 quite well, too.
For those who have 15 minutes to observe a life well-lived, despite circumstances:
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Nick and I have a long-running debate in our house. It’s part of the oil-and-water, fire-and-ice dynamic we’ve functioned on for years.
His sunny-side-up brand of optimism strikes me as Pollyanna-ish and naive.
pessimistic realistic approach to life grates on him.
But I might be close to winning this argument.
Maybe sunshine and rainbows and silver linings aren’t all they are cracked up to be. I maintain that if you only think positive, you’ll be caught off guard when bad stuff does happen.
That’s not to say I dwell on the bad. But I do factor worst-case scenarios into all of my plans.
Some research is being conducted that shows positive thinking has its downsides. I’m not advocating that we swing the pendulum too far the other direction, either, although I tend to stay on the frowny-face side of the spectrum.
But positivity for the sake of it feels artificial and arbitrary, doesn’t it? Like forcing it doesn’t actually make the situation better and can distort reality to the point of ignoring serious problems. Sometimes mind doesn’t trump matter. That may sound defeatist, but I have some experience in this area.
Sometimes hot coals are stinging stones of pain.
Sometimes MS is a brooding cloud that has no silver lining.
Maybe sometimes negativity, as long as it isn’t depression, isn’t the worst thing.
I’m reading The Marriage Plot by Jeffrey Eugenides right now. Without giving too much away, there is a character who manic-depressive. He tries to explain that depression is a different beast from being depressed. I wish more people understood that.
Filed under: Nick, Struggles | 2 Comments
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 haven’t used my cane in months. But I use my placard nearly all the time in the summer.
So I was thrown today when a couple driving by yelled at us as Nick pulled into the spot labeled with the big blue wheelchair.
They might not have seen the placard. They did see me as I got out of the car and walked 15 feet to the door.
“That’s a handicapped spot,” the man shouted from an SUV.
Shame bloomed across my face, my ears and cheeks flush with the humiliation of being singled out.
“I know. We have a placard,” Nick replied loudly.
The woman driver also chimed in. The man kept yelling. So did Nick.
“My wife has MS. Fuck off.”
The next 10 minutes was a hot blur. Wracked by stabbing guilt, I sat down, my rubberized legs unable to stay steady.
I thought about perception. I thought about the “but you don’t look sick” phrase that gets tossed around so often. I thought about the “look at the placard, not the person” mantra I heard recently.
And then I thought — as I have many times before — that I’m just not disabled enough.
As if there was a sliding scale. For me, there kinda is. I don’t ever want to take a spot from someone who truly needs it more than me. But how do you rank need?
I need to conserve energy. I need to stay out of the heat. Do I need the shortest distance between Point A and Point B as I can possibly get? Debatable. I suppose I could get by with doing less, running fewer errands, going out to fewer places.
But really, that’s no quality of life. So perception needs to change.
How do you respond to people who think you don’t deserve a disabled spot? How do you show the invisible?
Filed under: Multiple sclerosis, Struggles | 3 Comments
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.
Yes, I’ll keep blogging.
No, I can’t wait for the last Batman, either.
Yes, I got the new Fiona Apple.
No, I haven’t decided about the new Smashing Pumpkins yet.
Filed under: Uncategorized | 2 Comments