Multiple sclerosis, Uncategorized

Sea legs

Gimme a beat!
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 the nickname quadzilla for obvious reasons. Twinkletoes was another moniker. My muscles were defined fairly early; at 5, I was pretty ripped in the leg area. They were, as Natalie’s legs were described to Hugh Grant the prime minister in Love, Actually, like tree trunks.

I used to be pretty self-conscious about them – they felt out of proportion with the rest of my body. But then it dawned on me just how much I could do with them, how far they could carry me. I could do toe touches and high kicks and run and run and run. They never gave out.

Ain’t it grand, just how fucking amazing our bodies are? How this clump of cells and water and tissue work in unison to let us do things like walk and dance and bike? Of course, we take that for granted. I certainly did. I stayed in serious denial until I had to be dragged to the ER because I couldn’t use my right leg anymore. It took a few months before walking felt close to normal again, where I didn’t have to actually think about my muscles going through each stage of the walking process.

When Nick began biking and I began MSing, the paradigm shifted in our wrestling matches. My lower body strength became no match for his. These days, my legs still have much of that definition from my dancing days, but they operate quite differently. It’s like I have a  case of sea legs I can’t shake.

Walking is slower, a little unsteady. Running, ha! Dancing, we’ll see.

image

It’s hard to wrap my head around, but this fall will be four years since my MS diagnosis. Aside from the occasional stumble (literally) and needle fatigue (yes, I’m still doing that), my disease path has taken a turn for the better. No true exacerbations for two years, which makes me want to do a happy jig.

Of course, let’s not have delusions of grandeur here – it’s still a struggle. I’m still hitting that wall of fatigue more often than I’d like. The hand numbness never quite goes away. My left leg … well, it has a mind of its own most of the time.

It’s interesting that my focus turned to my legs, but my physical health has been on my mind lately as I consider returning to my first love, dance.

It was quite unintentional, I promise, but it is a good  segue for Walk MS: Central Arkansas.

We’ll be getting together April 12 in Little Rock for the event, which is the rallying point for MS awareness in Arkansas each year. Please join us, or donate to our team, the Word Herders.

I will try to write more – this feels very rusty. It’s been a long absence, and I told myself it was because I was feeling better so I had nothing to bitch about anymore. But there’s always something I can say, or share. I hope you stick around.

Advocacy, Multiple sclerosis

Orange crush

lovelyladies

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.

meorange

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!

Advocacy, Multiple sclerosis

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 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!

walkmslogo

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!

2013-Walk MS Email Signature_Final

Multiple sclerosis, Struggles, What was I thinking?

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 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.

 

Multiple sclerosis, Uncategorized

‘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 quite well, too.

For those who have 15 minutes to observe a life well-lived, despite circumstances:

Multiple sclerosis, Struggles

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 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?

 

 

 

Multiple sclerosis, Uncategorized

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.

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.

Multiple sclerosis

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 from the planet Imahotgal sent here to make the rest of us feel inferior.

Now she was a model. Me, not so much.

So it shouldn’t really bother me that my daily injections leave me pretty banged up.

But it does.

My stomach, arms and tush are a topographical map of swollen hills, creases and red rivers. The pain of a daily shot is compounded by the scars it leaves behind. Those traces of the injection can take days to go away, and even though you rotate to give an area a break, there’s always a chance that you will hit the same spot too soon.

There is some vanity to this, I admit. I recoil from myself sometimes when I see a bruised spot, or touch a knot that has yet to fade into nothingness.

The longer the shot regimen (uh, life?), the more tissue gets damaged and never fully recovers.

Here you thought cellulite was bad.

I know, this shouldn’t matter to me. I should just overlook these spots and go on my merry little way. I am not disfigured, nor did I suffer third-degree burns. But then you hear women fretting over stretch marks. About surgery scars. Acne scars. Moles. And women getting surgery after plastic surgery.

Is it vanity, or something more than skin deep?

I don’t derive my self-worth from how I appear. I know there’s a lot more to me than just what can be seen.

I know I will never saunter along Ursula Andress style in a Bond bikini. I’m fine with that.

But still.

Can’t I want to feel good in my own skin?

 

Advocacy, Multiple sclerosis

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 with our state delegations.

I won’t be able to do justice to all of the informative sessions and meetings, so I will leave that to the very talented Lisa Emrich, who wrote about it over at the MS Society Blog.

South Central ladies!

What I can do is give my highlights (and some low points, because that’s my MO):

• The Sunday flight to D.C. I sat next to the world’s tallest man. Or at least he acted like it by the way he stretched over into my area. Also, he reeked of an ashtray and whiskey. Not the best start to the trip, but I was hopeful it would get better. It did.

• One of my favorite parts was getting to talk with people from the South Central region. For several of them, this was a return trip, so their experience helped this new girl feel right at home.

• AWESOME! (those who know will get it)

• Listening to some terrific speakers, including honorary Arkie Channing Barker.

• Talking to my cohort into the wee for us hours of the night. (Give us a break. We have MS, after all).

• Sharing ideas with activists from all around.

• No mango salsa (this was a low point, obviously).

• But we did have a mashed potato bar. (Clearly, you haven’t lived until you’ve eaten Peruvian purple potato out of fine glassware).

• Meeting people I’ve been talking to and emailing for months. Although, I swear I need a deck of cards with everyone’s photos and titles to jog my memory.

• In-depth presentations about how research, trials, policies and legislation is carried out.

• Asking a stupid question in front of 500-plus people. BUT, then making some new connections based on said stupid question.

• Security.

• Meeting members of our delegation and feeling that they were more than receptive to our cause.

• Coming into my own as an MS Activist, and knowing that I did my best to represent the nearly 8,000 residents of Arkansas who are affected by multiple sclerosis.

 

This slideshow requires JavaScript.

Advocacy, Multiple sclerosis

People power

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 it’s because of what I do for a living or my age or my interests, but I think technology is THE way to rally the troops.

It has allowed us to communicate in ways we didn’t think possible even five years ago.

Don’t get me wrong – face-to-face contact is still ideal. Conference calls are a way of corporate life.

But we’ve gone beyond the email to a whole new arena of sharing information.

Message boards have been around a long time, but I think there is so much potential to use them in new ways as data clearinghouses. It’s a way to leverage knowledge.

I’m excited about advocacy for MS because there’s so much that can be accomplished. We just have to get out there and try it.

I’ll try to post while I’m at our conference this week. We have seminars and legislative visits and banquets and so many other things planned. I’m getting exhausted just thinking about it all!