Be the Star You Are

I love the movie Stardust. It makes me feel like a child all over again. It makes me feel excited and scared for just a moment at parts because I don’t know the fairytale story well enough to tell it by heart yet. It still feels new, but I always know I will be safe and happy and in the end even happier than I am watching The Princess Bride because I get to grow with the main characters and fall in love with them for the first time, instead of seeing that True Love can survive anything, simply because it’s True Love.

Tristan and Evanne start out as two people who are not what the other is looking for, exactly. Well, Evanne is the star that Tristan was looking for, but he doesn’t realize that she’s his True Love until later.
Tristan and Evaine’s lovestory is special to me because they deal with many of the challenges that people with Multiple Sclerosis and/or Seizure Disorder deal with all the time.

• After she falls from the sky, she has a hard time walking, because she’s hurt her leg, while he’s got his full health.
• She’s up at night, and sleepy all day, while he has energy during the day, and is sleepy at night.
• There are just certain places she can’t go. (Evaine can’t go to Wall because she’ll turn to rock. When you have MS and Seizure Disorder, certain activities, like raves, keg parties, 10 mile desert hikes, exploring tide pools just aren’t wise.)

But for all of those difficulties, there are benefits to Evaine being a star… It is her very nature that allows her and Tristan to defeat the evil witch at the end, and it certainly does not hurt that immortality belongs to anyone who holds the heart of a star, though it is what causes her to be put in peril to begin with.

The difficulties which mirror those of MS and seizure disorder don’t change the fact that it is through his love of Evaine that Tristan fulfills his destiny, becoming the man he was always meant to be – not a shopboy, but the strong, wise, powerful, swashbuckling King of all of Stormhold. If anything, dealing with those difficulties is part of what builds their relationship, increases his wisdom, and shows him to be worthy of being a king.

First, Tristan objectifies Evaine by putting her in magical chains and pulling her with him, as if she were just a thing. That gets him nowhere with her. (Why would it? No one likes to be treated that way.) It is only when Tristan seeks to protect Evaine from harm by using his Babylon candle that the game starts to change.

They grow to love one another because of the way they choose to treat one another when in a bad situation.

Once they are tied up in the Lightning Pirate’s brig, they keep their humor about them. They are kind to one another. Even in the face of potential death, Evaine thanks Tristan for saving her life and asks to hear about the girl she was kidnapped for. They pass the time with banter about love and life. They are friendly to each other when they *could* have been fighting.

Successful couples who have to deal with chronic illness already know that when you are dealing with situations that are bad and that you cannot control (Hey, your hands are tied!), there is only one way to get through the situation well: with humor and kindness and as much patience for the situation and for each other as you each can muster, remembering that talking about anything aside from the situation will make it easier to forget what else is going on.

I would go so far to say that this way of relating goes beyond couples who have to deal with chronic illness and even goes to couples in general. Couples who have the added challenges that come with chronic illness just happen to find themselves in situations that are less optimal more often.
Speaking of “less optimal” situations…

Last weekend was kind of tough for me – but things are finally pointing towards good.

Adam and I have been moving out of the icky, old, mold-filled apartment in Burbank and into a new one in Glendale, which is *wonderful*!

It has been so hard for me to let Adam do the bulk of the physical labor between the two of us.

I remember years and years of being an orchestral percussionist and on the drumline in marching band when I used to write in my journals, “’percussionist’ apparently means made for manual labor.” I used to be so annoyed being one of the only girls who was forced to help set up stages all the time, pack the band truck daily, and move things ALL. THE. TIME. , but eventually it became a thing of pride. I didn’t realize how over the years, I had become the “tough-guy” girl. So the whole move has felt really wrong, and really shameful, despite how hard I’ve worked during the times I’ve been able to work.

Emotionally speaking, I’ve been a wreck. I begged not once, but twice, publicly on Facebook for friends to help me move and not *one* single friend of mine volunteered. The two people who helped us were both friends of Adam who he talked into helping us.

BUT – at least we are *finally* in our awesome new apartment, so I’m not going to dwell on anything for too long. Instead, I’m going to focus on the positive! ANTHONY AND KEVIN TOTALLY ROCK MY SOCKS OFF!!!!!!! THANK YOU GUYS SO MUCH!!!!

In all seriousness, there’s been a theme of “spreading the love” or “spreading the hate” via manners and rudeness that I’ve seen via articles and radio and TV recently. I’ve always been big on spreading kindness, but it’s all throughout the fairytale too. Love builds love.

Once Tristan is on the ship as Captain Shakespeare’s “nephew,” there are shots of him feeding her at dinner, working with her on the crew, and even dancing with her.

Evaine remembers, after they’ve gotten off the ship, that they won’t make it to Wall soon enough for Victoria’s birthday. It’s actually important to her to be there because Tristan’s plans and his happiness are important to her, even if she’s been falling in love with him.

She protects him in Ditchwater Sal’s wagon and shows him the kindness of giving him cheese while he’s a mouse, and proclaims her love while he’s at his weakest.

I know that I tell Adam all the time how much I appreciate all the driving he does and how he’s doing damn near all the physical labor, but it’s nice to have a reminder of how important the little things are.

He shows me every day, in so many little ways, that he loves me, and while I do my best to always say thank you, I don’t know that I can ever show it enough back to him other than by just continuing to be myself in the hopes that one day, by being myself, I will shine through, like Evaine, and somehow save the day – or that by loving me, the way that I am, it will help him to become the man he has always been destined to be.

When I’m hurting, he’s always there to turn on my vaporizer for me or to stroke my hair and hold me, and tell me he’s there for me. When I have seizures, “You’re safe, baby.” are the first words out of his mouth. I can’t possibly count the number of times he’s caught me before I hit the ground from falling. I can’t count the number of meals that he’s cooked for me, the number of doctors’ appointments he’s gone to with me or taken me to, or even the number of chick flicks he’s watched simply to make me smile because he knew everything else felt bad.

Do I romanticize our relationship when I say that I think of him as better than any Tristan or any Westley because he’s real? 🙂 I certainly give him enough shit in real life, when he doesn’t deserve it at all, that I ought to be allowed to be lovely to him in media, where he deserves it entirely.

October 3rd can’t come fast enough for me. I cannot wait to be his wife.

My Life Is A Complicated Game of Shut The Fuck Up And Quit Whining.

I realized today that I’ve been getting bitter.

Me! Bitter! I can’t do that. I’m already sarcastic. Biting, witty, blunt, and often I’ve even been termed “abrasive.” I cannot possibly allow myself to be bitter about my condition as well. That would be sacrilege.

—>Okay, I am taking a moment away from whatever kind of thought pattern I thought I had in order to thank the brilliant programmer who decided one day to include spell-check automatically inside of text-boxes in internet browser tabs. I remember when I used to have to get a dictionary to look up how to spell the word “sacrilege” when I couldn’t remember. In the days before the prevalence of the worldwide web… in the “way, way, back when” *lol* Pre-1992. A 1-second right click now used to be a motivated ordeal – first you had to get up, then you had to find a dictionary, and then you had to find a word that you obviously couldn’t spell correctly to begin with. Nowadays, the computer guesses for you. (Does that make us stupider? Do we lose the ability to search for ourselves?)

As a writer with MS, my legs and my mind DEEPLY thank whomever came up with the idea and whomever has since had the responsibility of implementing it. You make it easier for me (and everyone else) to be a better speller. 🙂



I caught myself being bitter when I thought I was being funny, and I realized I wasn’t.

So all of my friends are watching the World Cup. (Woo.)

I so couldn’t care. Honestly, I wish I could, but I can’t! I posted on Facebook about it, and then it came out through comments that I liked playing soccer, but not watching soccer… and then that I liked playing soccer, when I was able to. which I’m not anymore.

And it came out like that without me noticing before I hit enter/send.

How more glaringly obvious is that cry for help/attention?

Bitter-Cripple-Mean-Ol’Granny-Hate coming straight through the screen at ya, and from MY fingers no less! I wanted to kick myself.

But it’s been years now since I got to really enjoy sports. And I hate that. I mean, I really hate that I kind of want to shut out part of the world because I let myself think about how I can’t do things. How ridiculously limiting would that get over time? How much life would I miss out on if I tried to ignore everything that I felt like I couldn’t personally be a part of. And how sad to prejudge what I can and cannot do if I don’t even try.

Every day is different. My seizures have been pretty stable – only 2 or 3 a day. Not too bad, really. I’ve finally accepted that I need a shower chair. In fact, I want one. I don’t know why I was embarrassed about it for so long.

Showering is definitely the scariest thing in the world for me. That’s why I keep them really short, really cold (heat can cause MS pseudoexacerbations which can induce seizures, which, in the shower are more dangerous than usual). The thing is, coming to that realization has not been… pretty. Or easy on my self-esteem.

On the VERY bright side of things, Adam very much understands and helps out a lot with keeping me from being nasty. (So don’t worry. I’m clean.)

Anyway, the reason that I started writing this post is that I know that I’ve been focusing the wrong way at the world.

I’ve been spending too much time looking at what I cannot do and not at what I can, which is why when I got a call out of the blue from one of the people who adopted one of my past foster kittens, it was a welcome wakeup call.

This is Sox, now named Tuxedo. He was part of our first litter of foster kittens.

His new owner was kind enough to send us a bunch of pictures, and it let me know what a difference Adam and I made in the life not only of this kitten, but in the life of somebody else. And that was when I could do so much less than I can now.

So I need to shut the heck up and quit whining. Sure, I’m still hurting. Sure, I’m still kinda a weeny about showering, and yeah, I really miss participating in sports and working out.

But I still get to do some really great things.

I still make a difference in this world.

And that’s what matters.

Hanging on by my fingernails.

I swear to the sweet 6oz chocolate baby Easter bunny, the Lord is testing my sanity.

There is mold in my apartment. So much mold that my landlord needs us to move out. So much mold that despite me having asked to see the report multiple times, she has not produced it, and instead is showing us better apartments than ours and is negotiating lower prices than asking prices on our behalf.

I don’t even want to think about how bad it must be here. I keep trying my best to ignore it. I mean, I’ve been living in it for 3 years now, so why should I start freaking out now every time I breathe, right?

So now there’s the fun of finding a new place. And the fact that I haven’t been posting here because I’m fucking miserable on the inside and having a silent fight with my best friend and am waiting as patiently as possible for it to be convenient enough for her to decide to come over and have the heart to heart she says she wants, since I’m apparently the worst friend ever.

But let’s not forget the normality. The fucking immense pain I’m in, especially in my back, knees, and ankles. That pain specialist that Dr. G. was supposed to send me to? DENIED by my HMO because it was at UCLA. So they rerouted me to a pain specialist that was in network and 20 days from now, I will be seeing someone.

20 days from now.

I see Dr. G again on the 15th. That’s in 6 days. I will have gone an entire 6 months, begging for pain medication, and having none, aside from medical marijuana, which I am under-utilizing because it is motherfucking EXPENSIVE. How’s that for some care?! *THUMBS UP!*

I wanted to commit suicide again today. I couldn’t stop thinking about how much I just wanted the pain to go away. It was after Adam spat at me, during a heated moment in a fight over an apartment, that I “Lord my MS over [him]” in our decision making process, which of course spiraled into an unnecessarily out-of-control fight because when it comes right down to it, he was feeling MS’s controlling reach… and he thought it was me.

When we both realized that we were fighting because of MS, things got a lot more calm between the two of us.

You. and me. and the MS make 3.

I wish I could make an MS doll and beat the snot out of it.

But our fight today made me think about things that absolutely HAVE to be present during apartment shopping in any good relationship that people who suffer with chronic illness have:

1.) consideration not just for the other person, but for the other person’s illness when it comes to choosing a new living space, and

2)sensitivity to how difficult it is coming to terms with the fact that you now have to consider the importance of handicap accessibility both to the apartment itself, and once inside, the amenities, space, and layout you need in order to maintain comfort.

For people like me, a new apartment is almost like a new life. I spend all day at home, almost every day. I mean, don’t get me wrong, I go out, but not lots… so finding the right one (and quickly) is very important.

I recognize over and over again how lucky I am that Adam is in my life. He helps keep me safe from myself and whenever we start fighting really hard, it’s almost always fighting MS and not each other. There are times I feel like I hold on to him hard while the storm that is the uncertainty of life with all of *this* pulls at me.

I used to have an LJ on here with kitten in the name… and I feel like meditating on one of those “Hang In There, Baby” posters. You know, the ones with the kitten hanging on a tree branch, well more like hanging OFF a tree branch… but you get the point. You know the kitten could pull itself back up, but it’s got to hang in there.

Especially on days where I do a *lot* – like today – when I’ve gone the distance to drink a Rockstar Juiced and throw 110% in there: I still somehow always feel inadequate… but I can pull myself back up. I always do. I just have to hang in there.

Adam made sure to remind me that I’m so much better today than I was a year ago today. Or a year ago before then. He says I’ve been fighting. Since I barely remember the last 2 years, aside from TV and shaking and pain, I have to believe him. I’d like to, but I don’t feel like I have fight in me, so it’s hard to believe that I’ve BEEN fighting. Though, I guess the lack of fight in me is evidence that I’ve used “fight” up, so I must have been fighting. *shrug*

I hope, if this MS “thing” ever ends and I ever just feel “like myself” again, there’s anyone left who will want to hang out with me.