Delicately Ironic

I have a beautiful, day-old hibiscus quarter sleeve on my left shoulder. I’ve been coveting this tattoo for a while. I was going to get it to celebrate my passing of derby minimums. But, I needed to do it now. I needed it to feel alive and defiantly declare that breaking me will only make me more beautiful.

The Japanese art of Kintsugi means “to repair with gold.” When a piece of pottery is broken, people use this ancient art to repair the piece using gold or silver. The understanding is that something is more beautiful and more valuable for having been broken.

Kintsugi is probably the closest representation of how I feel about my tattoos. About my life, really.

The hibiscus flower is incorporated in a tattoo for several reasons. One of the most common things it symbolizes is devotion. Often, it represents a love from which you have moved on.  In Malaysia, it represents courage and honor.

The most common symbol of a pink hibiscus is rare and delicate beauty. I like that one, because—while I am tough as hell—I am fragile too. My tattoo meaning is ironic: it represents fragility, but it takes a lot of pain and endurance to acquire it.

I read an article about tattooing that asked: If it didn’t hurt, would it mean as much? I think the answer to that is absolutely not. Enduring pain is something that is common in the human condition. But voluntarily choosing to endure pain in order to create something beautiful is brave. And kind of amazing.

Getting a tattoo is a lot like skating derby. You know it is going to hurt. And you do it anyway, because it is worth it. To steal a movie quote: If it was easy, everyone would do it. It's not a coincidence that many derby girls love tattoos.

I have been rewarded with some amazing things by enduring pain. My incredible kid, for example. I think this is why I put up with so much pain from the Earthquake. I believed (or at least hoped) that there would be something exceptionally beautiful and valuable that would be built from the broken pieces.

Well, I can’t always be right…

I have a large tattoo of a lotus on my left thigh. (I told my dad that I would only adorn and modify the left side of my body so he could stand on my right and pretend he had a normal daughter.) That beautiful flower grows by pushing itself through the mud to find the sunshine. I have pushed through a lot of mud. It keeps raining down on me. And somehow, I manage to find the sunlight.

I do like to think that my ink symbolizes amazing things. But for me, it is more than that. It is a way to reclaim myself. It helps make my world colorful. And it also helps create great beauty from great pain. When I look at my tattoo art, I remember the course of my life that led me to them. They are my life story.

They also remind me that I am tough enough to endure the pain and emerge with something quite amazing.

Skating the Yellow Brick Road

My ex-husband's mother works for Debbie Reynolds. That's right, folks. I'm four degrees from Princess Leia. I'm also only four degrees from Kevin Bacon, but that's another post.

Debbie Reynolds has collected one if the world's largest and important Hollywood costume collections. One time, I was privileged enough to wander through the warehouse-sized, environmentally controlled storage room behind her dance studio. Among the red sequined gown worn by Marilyn Monroe in Gentlemen Prefer Blondes and the riding silks worn by Elizabeth Taylor in National Velvet, a pair of ruby slippers sat under a blue cotton dress.

I was explaining to Kidlet about how those sparkly shoes were an amazing thing to see. His response was:

"I've never seen The Wizard of Oz."

I'm failing on my son's movie-cation. He relies on me to lead him through the cinematic world, and all I have done is made him watch Die Hard with me on Christmas. I had to remedy that immediately. So we cuddled on the couch and watched the trek to Oz.

I don't remember the first time I watched Dorothy and Toto put some hurt on some wicked witches, but it will never forget the first time Kidlet watched it. At first, he claimed boredom and said black and white movies were lame. (Further evidence that I am not a good movie-cation.) Eventually, the story grabbed him and pulled him in. And then he became so invested in the story that he was frightened by flying monkeys. 

It made me wistful. 

I want to go to Oz. I wish I could ask the Wizard for a heart, a brain, and some courage.

I want a new brain. One that doesn't send burning signals to my back. One that isn't causing my right eye to try to see through Vaseline. I want healthy, plaque-free grey matter. I want to not have to worry what new sclerosis-caused malady will hit me next. 

I want my new brain to have the ability to quiet itself. It shouldn't be constantly spinning out of my control. I want a round brain, free of the corners where dark things hide. I want to be able to file memories away so they cannot sneak up and bite me. 

I want a new heart. One made of steel that will never be penetrated. A bulletproof heart that cannot break. I want a heart that slowly, steadily warms instead of burning so hotly that it singes me. 

I want a heart that doesn't send a trauma response through my body every time I mourn what could have been. It it real, physical pain. It takes my breath away and drops my stomach to my knees.

But those are just wants.

What I really need is courage. I need the courage to see others get what I wanted. I need to be brave enough to face injustice. I need the strength to move forward and through. The only way out is through. 

My mother fell yesterday. She broke a bone in her shoulder. My father was there--bad knees and all--picking her up and getting her help. I need courage to move forward knowing that, not only will I have to pick myself up when I fall, the person who told me he would be there to help will not be picking me up. 

In three years, I will be sitting in the synagogue watching my son's Bar Mitzvah. Alone. Next to my ex and his Wife 2.0. Because the person who said he would be there with me will be watching another's children grow up. 

There are events in the very near future that are going to be very hard to get through. Not only for me, but for my kid, my niece, and my nephew. I have to model bravery for those incredible kids. I have to fake it, because the person who said he would hold my hand during these events has chosen an easier hand to hold. 

Please Wizard. I need courage.

I have to be brave enough to get kicked in the stomach over and over again. I have to be strong enough to put away the incredible humiliation I feel. I have to try once again to find my happiness.

I had a great first date a few nights ago. He was charming and cute. So incredibly smart, with a British accent as the cherry on top. I really enjoyed our conversation over a great dinner. But I didn't join him by ordering a glass of wine. I needed to take my Avonex later that evening. Drinking before my shot makes the flu-like symptoms worse.

He asked if I was sure I didn't want a drink. And I didn't know what to say. I didn't know if I should tell him about the MS. Should I tell him that I have a progressive, debilitating disease early on, so that he can make the decision to see me again? Should I wait to tell him until we know each other better? What is fair to him? What would I want someone to do if the shoe was on the other foot? I don't know what to do. 

I'm so terribly afraid. I'm so terribly sad and worried. I want to be off to see a wizard. I want to step out of the black and white into the technicolor. Being saddled with this broken heart and broken brain, I can use all the courage I can muster. 

And with that, I am done mourning. I'm finished sitting shiva. The covers are coming off the mirrors and I'm off to find some happiness. Anyone up for some skating? Perhaps down the yellow brick road?

Head Games

I am too in my own head lately.

For the last couple days, my hand has been bothering me. I have no better description of what is going on with it. It doesn’t hurt. It doesn’t quite tingle, and it doesn’t quite itch. It feels a little like it burns, but not really. Just kind of? Something is just off. I am way more aware of my hand than I ever remember being before.

And that is why I am in my head. I keep thinking the following thoughts, often simultaneously:

Should I call my doctor? Should she be aware of this? Is there anything she can do? Will I want to do what she recommends, which might very well be an IV infusion of steroids?

Am I coming down with a cold? Are my small aches and weird tingles the sign of an impending illness? Am I exhausted because I am coming down with something? Does my throat feel scratchy? Is it possible that I am tired because I have been running around all week without much rest?

Has my finger always had this vague sensation? Have I always scratched the backs of my hands out of habit instead of itchiness? Is there really a rogue hair attached to my finger that keeps me searching for the source of the tickle?

Do people without MS experience these things? Is this just the “normal” human condition? Have the times I have experienced this in the past been a typical and universal experience of our species? What is normal?

I so miss the days, not too long ago, when I didn’t know I had MS. I miss how things were. If my palm itched, I scratched it. If my foot fell asleep, I stood up and stomped on it to get some blood flowing. If I had trouble reading the PowerPoint presentation projected on the screen in the conference room, I put on my glasses.

My life has changed. And it will never be the same as it was before. Not only that, but this diagnosis has struck the one chord—stripped of myelin—that causes the most anxiety and angst in my life.

I’m the type of person that likes to know how things end. I read the end of the book. I look up spoilers on the Internet. Knowing the ending actually enhances the pleasure of the experience for me. I was the type of kid who, when given a Choose Your Own Adventure book, would start at the back and reverse engineer my choices to make sure I never turned the page to read “You have died.”

I know in my hole-filled brain that no one on earth gets to know the end of their story. Not really. There is the often funny, often cruel force of Chance that is active in every human life. I am not guaranteed the next 20 minutes, let alone the next 20 years.

But I thought I had a road map in front of me. A rough outline of where I was going and what I was going to do. That map has been wadded up and tossed out the window. I have to re-figure out a lot of things I thought I knew. Like if I am experiencing an itch or a relapse.  I need to figure out when to tough it out and when to call it in. I need to learn when to push through or pull up. And when to hold tight when to let loose.

But I still want to know how it ends.

Fork Me... I'm Done

At least for tonight, I am.

I knew it would happen eventually. And it happened this evening.  I had a really shitty skate practice. I absolutely ran out of gas. I was deeply and profoundly exhausted. And my hand has been bothering me for the last couple days. But tonight, I experienced a very unpleasant burning sensation in that hand. Maybe it was because I was feeling overheated. Helmets sure do hold in the heat. Maybe it was because my arm was trussed up like a turkey in my elbow pad and wrist guard. Whatever the reason, I hurt.

And I cried.

I cried because this was the first time I have experienced MS issues since my initial diagnosis. At least, it was the first time I could connect some weirdness in my body with a reason it was happening. I cried because I simply couldn't do what I wanted to be doing. All I wanted was for my body to stay upright on skates for an hour. I really didn't think It was too much to ask. But, alas...

So I cried. I cried from frustration. I cried because I hated this new reality. And I felt very alone. My family was out of town. All the people that I usually lean on were out of reach tonight. Out living their lives.

You know who took care of me tonight? My warrior sisters at the Derby. They encourged me. They made sure I was OK. These wonderful women rubbed my shoulders, sat with me, and made me understand that I needed to listen to my body and take it easy. And they accomplished what I thought was impossible at that moment. They made me feel better. They made me laugh.

I'm very lucky to have this group of ladies in my life.