Rockin' and Rollin'

This week is Thanksgivukkah. These two holidays will never collide again, at least not in our lifetime. I had a couple other once-in-a-lifetime things happened last week*:

Sara (the one who made me try out for derby) and I got pierced to celebrate her birthday. OK, I've been pierced before. OK, many times. But this was the first time I went with a friend to celebrate a milestone. These are mile-marker nose studs.

League pictures were take up at the State Capitol building in the bitter cold (which was still warmer than the Derby Depot.) I really, really, really hope they turn out well. Because I organized the shoot. I wanted to find a location other than the Depot. The Capitol building offered many cool staging areas. Steps, columns, and statues were all incorporated into the shoot. The pictures should be great with all of those fabulous women starring in them.

Then there was this. I was was asked to appear on an internet radio talk show. Host Tim Manson asked me about my MS diagnosis and how it took me to roller derby. I was so nervous! But it was fun, and I think it turned out well.

http://www.voiceamerica.com/episode/74223/moving-forward

I'm in the second segment, if you want to take a listen. Let me know what you think. Unless, of course, you think I sound like a dork. Then just lie and tell me it was great.

I was also interviewed for an article published on EverydayHealth.com.  Bodybuilder and fellow MS-er David Lyons writes a column for them called MS Fitness Challenge: Overcoming MS challenges on the road to fitness. And last week, he wrote about me.

http://www.everydayhealth.com/columns/ms-fitness-challenge/426/

Don't be all jealous about how hot I look in that picture. I just can't help myself.

One more interesting thing happened. I was at the gym (by itself a rare occurrence, I know), and the man on the treadmill next to me asked what I was listening to on my iPod Shuffle. We started talking about our workout playlists. And I thought I would share a couple of my go-to lady jams.

Aside--I'm sorry, what? You haven't seen Pitch Perfect? Stop reading this now and go watch it.

Oh, you're back. Wasn't that acca-awesome?

Anyway, here are a few highlights from my workout playlist, which is cleverly titled Workout. What can I say? I'm a wordsmith. A poet.

The song with the top number of plays is Know How by Young MC. I have loved this song since I was in college working at a record store. Remember when there were record stores? Remember when there were records? This song brilliantly uses a sample of the Shaft theme, creating a great beat. But it has super bonus points: it was used in the movie Whip It.

Next on the list is AC/DC's Thunderstruck. This is the ultimate crank-it-up, skate-your-jam tune. I believe that there is a law in 27 states making it illegal to listen to it below a volume of 11.

And now there are three movies you have to watch this weekend. This Is Spinal Tap is the Best. Musical. Ever.

I bring a little Girl Power into the mix, of course. Raise Your Glass by P!nk will have you singing out loud, which will annoy the other gym patrons. But you won't give a shit. If my little nieces grow up to be like P!nk--strong, tough, talented, fun--my work will be done.

I am not usually a big fan of song covers. But there are a couple of songs that, when covered, make you forget all about the original version. Among those are Ring of Fire by Social Distortion and Hurt by Johnny Cash. But when you take a song made famous by the royalty of rock and make it your own, it is going to be epic. Karen O and Trent Reznor took the Immigrant Song away from Led Zeppelin. You may have heard it during the opening credits of the American version of Girl with the Dragon Tattoo. (You don't need to see that one, but check out the Swedish original.) Put this song on your MP3 player. It will make you kick it up a notch.

And there is one song that has been released this year that I can listen to over and over. If you haven't heard Harlem by New Politics, download it, plug it into your car's stereo system, and crank up the volume. It will make you happy, I guarantee.*

Happy Thanksgivukkah everyone! Have a safe and happy holiday.

* Well, maybe they will happen more than once in my life, but these were the first times they happened.

** Happiness is not guaranteed. But I'm willing to bet you are smiling.

Labels Are for Cans

So… this happened today. I was asked to be a guest on an internet radio talk show called Life’s Journey with Tim Manson on VoiceAmerica.com. It was a really fun experience. I talked about the way my MS took me to Roller Derby. I don’t think I sounded too idiotic. But I will never know because I can’t stand listening to recordings of my own voice.

It’s never nice to point out a flaw that cannot be fixed. Only tell a woman that there is a run in her stockings if she is at home and can change them. If she is nowhere that she can fix the problem, don’t mention the problem. Remember that advice as I give you this:

Life's Journey Moving Forward

You can only listen if you promise you won’t tell me if I sounded like a total dork.

Something occurred to me as I was having this interview. I wear a lot of labels. I’m not talking about fashion designer labels. My very favorite shoes are a $30 pair of Chuck Taylors.

Listening to Tim introducing my segment, I thought about all the different roles I have in my life. The most important are mother, daughter, and sister. A very close second is friend. Coming in for a solid third place is writer (a subset of which should probably be blogger). We should probably throw nerd into the label list.

But there are a couple new labels I am wearing as of the last few months. The first being patient. I had an MRI yesterday that made me feel like such a patient. This wasn’t my first time getting an MRI. It wasn’t even my fifth time. I am coming up quickly on 10. Ten times I have been slid into that tube armed with only earplugs and a meditation mantra. And in all those times, no one thought to scan my brain stem and neck. So, once more unto the breach, dear friends.

When I arrived at the hospital, I was told that the MRI room was being renovated. Not to worry. They have a mobile MRI unit in the truck in the parking lot. You read that right. I had to walk in my hospital gown and non-slip socks through the halls of the hospital and out a side entrance, where I then had to climb the painfully sharp metal stairs.

The actual MRI experience was pretty close to the ones on terra firma. Maybe a tad more… bouncy? But afterwards, as I stood there while my not-so-speedy tech was doing something that apparently needed to happen with me standing there, the door opens. Nice view of the cars coming and going about their health care business. I’m sure they had a nice view of me. The tech that opened the door was waiting for his turn to scan some other patient. It was cold, and a little bit mortifying.

So I tugged my hospital johnny and looked at Tech 2. “It’s cold,” I said. He agreed. “Close the door,” I said.

The apology came quickly with the door closure soon after. But it made me feel like a patient. Tech 2 had seen this scene hundreds of times. I was just one of many patients to him. I am starting to hate that particular label.

I’ve also been recently labeled as a skater. I love that label. But sometimes, in moments of frustration, I feel like a poser. I feel like I haven’t earned that label yet. Yes, I own skates. Yes, I can cross a room with wheels on my feet. Does that make me a skater? I’ve got to be a skater if I want to be a Derby Girl. And I so want to be a Derby Girl, but calling myself a DG does not make me a DG.

Am I a DG? Maybe? One in her infancy? One with all the desire to grow up and be a full-fledged Derby Queen? In fact, let’s go with this label: Baby Derby Princess.

Uh... I'm gonna need that shirt...

Here is one more label that I am wearing since the diagnosis. Ambassador. I am Ambassador Derby Princess and Ambassador MS Chick. I am strangely comfortable in this label. As my friends are finding out, I will try to convince you to try derby with religious zeal. I will talk your ear off about how much fun it is. I will explain the subtle nuance of the game that I am just starting to understand.

As Ambassador MS Chick, I will tell you to make sure that you are getting your Vitamin D. I will encourage you to make sure your kids take a daily multivitamin. I can tell you all about my symptoms and reassure you that you are most likely OK.

I can show you that I am OK. Better than that, I’m great. Mostly.

There’s No “I” in Quit

Oh, wait… I guess there is... But you get the point.

Stephen King is an amazing writer. I am in awe of his talent. I am drawn to his stories. One reason I love reading King's scary tales is because the characters in them are (usually) worse off than me. I never get stalked by killer clowns, and I have yet to see an actual ghost. It isn’t schadenfreude. I’m not secretly pleased that Danny Torrence sees hedge animals trying to kill him. But I am glad that I don’t have THAT problem. 

But here is the thing about Stephen King characters. They hardly ever give up. For better or worse, they continue the journey all the way through to the epilogue.

I am not very good about handling things when they get hard. There is a secret corner in the back of my mind that is constantly whispering to me, telling me to quit when things get difficult or if I’m not immediately good at something.

A couple things happened yesterday to help me quiet those voices. At least for now.

Aside—Seriously, MS leaves holes all over my brain, but it can't take out the self-doubt chunk? Thanks a lot, MS.

The first thing that happened was that I had a good skate. It has been a few weeks since I was out really working on a rink. Life had just gotten in the way. But I got out there and could feel that I was improving. I was actually told I was improving, so that helps too.

The other thing that happened was that I figured out some of the things that I really want in my life. And I think I started to figure out how to go about getting them. As hard as it will be, I want them badly enough to power through. Things have seriously changed for me in the last couple months. I was turned ass over teakettle. Up was down. Right was… not so right. And it has been hard. Very, very hard. Which must mean it’s worth it.

I think for people like me—over-thinkers, over-planners, over-sensitive—that life supposed to be hard. Maybe for people who are like me and can never quiet the thoughts bouncing around, there has to be some obstacles thrown up in order to slow us down. So we can catch our breath. So we can regroup.

I may look like I’ve got my shit together. But, deep down, I’m terrified. I am scared. I’m scared to fall. One thing that I finally figured out this week is that this fear is holding me down, keeping me from succeeding. When all I can think about is falling, I will fall. If I am afraid of getting hurt, I make myself much more vulnerable to pain.

Things in my life are difficult. But difficult doesn’t mean impossible. All it means is that I have to work harder to get what you want.  It also means that success will not look like what I thought it should.

Forget the risks. Take the fall. You will be stronger for getting up again. It’s not going to be easy for me. But it is going to be worth it.

Seeing Scars

Tyler Durden said, “ Without pain, without sacrifice, we would have nothing.” Who is Tyler Durden, you ask? I would tell you but the first rule of Fight Club is…  Oh, wait. I might have given too much away already.

I am battling pain on several fronts right now.

My heart hurts. It sucks when you know that you need to let go. You have to stop waiting for the impossible to happen. But it doesn’t make it hurt less. Is better to keep silent than to tell someone what you feel? Because it hurts badly when that someone hears you but does not understand you. And even though I saw this pain coming, it still hurts.

But a hurting heart has brought me clarity on certain things. I can’t afford to wait for happiness, contentment, and peace. No one can. No one knows what tomorrow will bring. But I know what tomorrow will NOT bring me: a complete brain, regrown myelin, a drug-free life.

My time is now. I think, more than most, I am hyper-aware that my clock is ticking. Time we waste wishing for things to happen is time we can never get back. I don’t have time to waste. I’ve got to figure out how to get what I want. Right now.

My brain hurts. Well, not really. Brains don’t feel pain. Or so they say. I think brains do hurt. Thoughts can hurt, especially when they will not allow your brain to be still. Anxiety and stress can hurt. When your brain is not at peace, you do not sleep. You cannot be still. You cannot be focused. And that hurts.

I think the worst feeling in the world is knowing that you did your very best, but your best wasn’t good enough. That is when my brain hurts.

My body hurts. My back is really bothering me. I filled a prescription for a cream that I put along the back of my shoulders and neck. It smells vaguely like BenGay and feels weirdly cold. My hand hurts. Because the pain in my hand stems not from my joints or tendons but from my nervous system, it can’t be managed by Advil. MS hurts. This disease is--quite literally--all in my head. OK, technically it is in my spine too.

Derby hurts. And it is so, so worth it. My legs are so sore, I can barely make it up stairs. My arms are aching due to push-ups and planks. My ankles were screaming at me that they can’t do another lap, then thanking me after that lap is completed. Up for one more lap, body?

I know pain brings strength. And I know that the absolute best thing I can do for myself is get strong. Pain also brings clarity. It makes you recognize that certain things are worth the sacrifice. Like me. I am worth the sacrifice.

We started with Tyler Durden. Let’s end with Finnick Odair. Who is that? I would tell you but the first rule of the Hunger Games… wait, no. There are no rules in the Hunger Games. Maybe that is better. No rules means no rules ever get broken.

“It takes 10 times longer to put yourself together as it does to fall apart.” Finnick tells Katniss.

I think that the goal is to get yourself to a place where the time it takes to fall apart gets longer and longer. Maybe someday, I’ll get there.

Glasses Half Full

I'm in a funk. I've been struggling to find the happy. So today, I'm going to give myself a day of sad. A day-long pity party. Then I'm going to reset tomorrow, shake off the funk, and find my happy.

I realized this morning that I haven't skated in a week, and I haven't posted anything Derby related in longer than that. Life got in the way, and today I will remedy both problems by going skating with Sara and writing this post.

Let's talk about glasses.  The ones for your face, not the ones for your bourbon.

Since the sixth grade, I have been wearing glasses.

We can talk about the kick-ass mullet in a later post...

My eyes got a little worse each year. They got so bad that I literally could not function without glasses. If I was out and broke my glasses, I would have not been able to get myself home. Then, about 8 years ago, I had PRK vision correction surgery. That laser reshaped the back of my eye to be capable of 20/20 vision. But, the doctor warned me, the surgery only reset my vision. My eyes would continue to age and my vision would continue to degrade.

And that is exactly what has been happening. Aging eyes with a dash of MS. My Optic Neuritis--the symptom that initiated the MS diagnosis--has left me with a permanent cloud in my right eye. It's a bit like looking through a smear of Vaseline. I am constantly taking off my glasses to clean them, only to remember that it was actually my eye that needed cleaning.

I now need glasses to see the actors on a stage or the address on a street sign. I cannot drive at night without them. And I can't see clearly across the derby track.

And that presents a problem. Several Derby Girls wear glasses while they play. But it can be dangerous. Very recently, a fellow DG posted about her experience playing with glasses. She took a legal hit that knocked her down and broke her glasses. The broken frame of her glasses became razor sharp and sliced her forehead, barely missing her eye.

So these are my vision alternatives when skating. I can chance it wearing my glasses, hoping they don't break or don't injure me. I don't want to spend money on new glasses or plastic surgeons (for fixing glasses-caused scars. I will happily use plastic surgeons for other maintenance issues).

I can get contact lenses. They irritate my eyes, and they are expensive and easy to lose or break. They also can hurt if they slip off into the corner of your eye or you get some dirt in there. I know this from experience, that would be the last thing you would want to happen in the middle of a jam.

There is the no-glasses option, but that leaves me with a bit of a blind spot to my right. That will not help me bring my A game.

I'm not anywhere near being a good enough skater to scrimmage yet. But when I am good enough, I'm going to get myself a pair of sports glasses with a high impact rating.

Sexy, no? Actually, I don't think they are too bad. Just nerdy enough for Velma. Safe enough for solving mysteries.

Speaking of Velma... There is a common pop culture trope that involves putting glasses on the hero somehow serves a disguise. Sometimes a superhero hides behind those specks. Sometimes a nerdy, bookish girl becomes beautiful when the boy she has a crush on removes her glasses.

I never liked either of those literary themes. Here's something that most of us eventually learn through life experience. Don't hide your hero. And nerds are sexy.

Glasses are hot.  Trust me.

The Beach Ball Effect

I swear, this is not going to be a pity party post. Or PPP. 

I have this theory about my life. I call it The Beach Ball Effect. There is this wonderful, colorful beach ball floating in a refreshing, clear pool. I want that beach ball, but I don't know how to swim. So I wait by the side until the gentle breeze floats it towards me.

I reach out to touch it, wanting to hold it. To possess it. But only my fingertips get to touch it. The very act of contact pushes the ball back to the middle of the water, out if reach. 

The beach ball is my happiness. I can see it, I can even touch it. But I can never, ever capture it.

The two most vital components of myself are incredibly scarred. My brain and my heart. But, I am incredibly proud of both of them. They have been played, stabbed, cheated, burned, and broken. But somehow, they still work. 

This was on my Facebook feed this morning.

As if the universe was trying to remind me that the point of life is not to capture the beach ball. Maybe the point is to just let the beach ball float away and enjoy a Piña Colada by the side of the pool. 

Or maybe the whole point of life is to learn that I can take a hit. And another. And another. And stand up and say "Is that all you got?"

Coming Out

I watched the most amazing TedTalk. It was a deeply profound, life-altering talk about coming out of the closet. Because, we all have closets.

Ash Beckham calls herself a “Speaker and Professional Lez.” And she is amazing and wonderful. If you have not seen her 10-minute talk to a Boulder audience, do yourself a favor and watch it right now. Because she is talking about you. All of you.

Coming Out of Your Closet: Ash Beckham at TEDxBoulder

Aside—If you are not a regular listener to TedTalks, you are really missing out. At the risk of pulling a Rand Paul, this is what I cribbed from Wikipedia: TED stands for Technology, Entertainment, Design. Their slogan “Ideas worth spreading”  stems from their mission to use ideas to start discussions, and discussions to start change. You can find these talks on YouTube, their website or their podcasts. Pick the ones that sound interesting to you. You will not be disappointed.

Second Aside—I swear that will be the first and last time I ever compare myself to Rand Paul.

Anyway… Ash Beckham’s talk went viral. And it struck home for me in an unexpected and beautiful way.

“We all have closets,” she said. All a closet is  “…is a hard conversation.” She said these conversations are scary and we hate it. And they are conversations we need to have.

This TedTalk dovetailed beautifully with this article I read by fellow MS patient Cathy John:

This is what MS looks like

In this article, she describes the difficulty of disclosing a permanent, debilitating, chronic illness to the world when your symptoms are invisible. She writes about how her medical team advised her to not “rush into telling people” about her condition. Her advisors described to her that the public was woefully undereducated about this disease. And the solution to that was to not share her condition.

Wait… what? Let me say that again. They were advising Cathy that the problem with “coming out” with MS was that the general public didn’t know about MS. But their solution to that was to NOT educate them about MS?

Let me just clear up something. You know someone with MS. You know someone gay. You know someone in an abusive relationship. I guarantee and promise that you know these people, even if you don’t know these things about them. You know someone with a secret that they think is so dark and terrifying that they stuff it deeper and deeper back in that closet.

In the words of Ash Beckham, “A closet is no place for a person to live.”

I am, of course, MS-out with my family. My Dr. Sister knew before I did. My kids (that would be my Kidlet, my awesome nephew, and amazing niece.) know that my brain has some plaque that is not so different than the plaque on your teeth. The medicine I take helps me brush it away.

Last aside, I promise—I actually have three amazing nieces. But the younger two are little and will have never known me as NOT having MS.

I gave my family full permission and rights to tell anyone and everyone about this. So the information is slowly making its way through the outer edges of the extended family.

I am kind of out at work. My immediate team knows about it. They have to know. I have too many doctor appointments. I miss too many team meetings because I am getting an MRI, or some such nonsense. HR knows, because they are helping set me up with FMLA should I ever need it.

And Derby…

I am out and proud at Derby. My derby family knows about the MS and loves me because of it. When I tire after 20 minutes on skates, they encourage me to rest and get my ass back on the track. They all know that it will take me longer to become good, and they encourage me to keep trying every day.

Skating is the strangely magical time that I can both completely embrace and completely escape the MS.