I am falling in love with Wolfgang Amadeus Phoenix. 🙂
To be really honest, I’m falling in love with actively listening to music again. It’s like I’d forgotten that I could do that.
It probably sounds daft… forgetting that you can listen to music, but there are lots of ways of living life.
One thing that going in and out of seizures, in and out of confusion about what I’m doing damn-near-constantly, that sucks on one hand but that is good on the other, is that I get a really crystal clear picture every once in a while of what I’m actually *doing*… which has been very little besides sleeping, web surfing (but sadly not on social networks, and I desperately miss *everyone*), and watching whatever Adam has playing on the TV recently.
This puts me in a position that most people don’t get, once the IV-SM has done its job. I get to re-learn how to live – and if I’m smart, I’ll stay focused on what I can do, not on what I can’t.
Me Against The Disease: The Battle Rages On
One of the things that makes “coming back to life” hard is the resistance to do it at all: the persistent, heavy thought that any positive changes that I make in my life are all for naught. The terrible idea that anything I do doesn’t matter, and that in a few months, (may as well be in a few minutes) I’ll just be back on an IV, and whatever changes I make are struggles that I cause myself for no good reason anyway.
That is stinkin’ thinkin. And it will always be there after a relapse. I know that. It’s the MS talkin’ through me… trying to make me accept defeat, even when I just whooped its sorry butt with a round of IV steroids.
It’s as if I can hear my felled opponent, beaten, whimpering, and pleading with me. “Truly, you need to stay on the couch (doing jack crap and not having a life). If you stay at home (and don’t go and see friends and family and don’t accomplish anything else with your life), then I won’t be taking anything else away from you. You’ll be nice and safe here on the couch… And just think, if and when you start having seizures again, you’ll already be where you need to be!”
Like anyone with half a brain would bargain with their disease. You can’t fool me, MS. I WIN. 🙂
Time To Put MS Back In It’s Place
I was talking to a friend today about how difficult it can be not to let your disease become all-encompassing in your life. He was wondering how I did it, since seizures eclipse your consciousness.
Honestly, there are days where it’s just dealing with seizures, one after another, most of the day. Those days belong to MS and seizure disorder. But there are also days when I don’t have seizures at all. Those days, I try my absolute best to take back for myself. I try not to let MS and seizure disorder to take away my fun or my life. I *strive* to remember who I am and to be the best Rachael I can be, because otherwise, the MS and seizure disorder wins.
I think it might help to explain to everyone the way that I view MS, seizure disorder, science, and my place in the universe as to how I cope with my disease.
It’s a great time to be alive, comparatively.
When it comes to the human body, to the brain, to chemistry and medicine, I believe that we (humans – or any living thing) are essentially very, very complicated “robots” (for lack of a better word), with none of the intelligence being artificial. For whatever reason, I’m currently living in an age where we can’t fix me yet. We don’t have the technology. Multiple Sclerosis is a disease where the body’s immune system attacks its neurological system. My seizure disorder stems from that. So, in my book, the two go hand in hand where fixing is concerned. Someday, new synapses might be as simple to replace as capacitors are today. Until then, it’s a waiting game.
When I think about the future, I do so hopefully. I always think about sticking around, because who knows when they’ll be able to fix my problems, and who knows how wonderful the world will be then. I am so hopeful for the advances of science, for the achievements that I cannot wait to hear about. I have faith in the future. I think about how 25 years ago, the Apple 2e was the hottest technology, and about how 25 years before that, a personal computer wasn’t but a thing of imagination. I can’t fathom what medical technology will look like 25 years from now, other than to know that it means good things for health… for us all.
But for now, this disease remains the enemy of everything “Rae.” That’s why, every day, it’s a battle of Me vs. the Disease.
So that got me to thinking: What things can I do every day to be the best player on Team Rae? Objectives: Weaken MS’s hold on my life. Increase Overall Awesomeness. 🙂 How else do you live without it being in charge?
Well, right now I’m doing a good job with taking my medicines on time every day. That is necessary. The medicines buy me time. They are a constant affirmation of life.
But what does MS really hate? The way I see it, the first thing that it stops me from doing is moving, and, according to all of my doctors (and good common sense), exercise is good for me. Therefore, objective #1 of things to add into my everyday routine is some form of daily exercise.
I think the second thing that MS seems to really hate is letting me feel secure in having a path or a plan. It likes to mess things up for me and take away my opportunities. Well, I am writing a book. Whether or not it gets published is another thing entirely, but I can write this book regardless of (and in fact because of) my physical condition. I’ve even had the good fortune of a family friend tell me that he’s helping me get my foot in the door with his publisher. 🙂 I have a table of contents already. I can write in that book every day. In fact, I ought to.
And music. The love of doing. The act of being in the moment. Practice that makes perfect, but demands daily diligence. If ever there were a prescription for how to be in the moment, it is to make music. It demands presence and focus and love and respect.
The Key To Living Well With Chronic Illness Is Actually Living, Despite the Illness
For the longest time in my life, I have searched for “why” I am here, sometimes to the depths of anguish. I’ve often wondered why I suffer. I think I know why now.
Because I’m willing to share. Because I’m willing to explore. Because I write. Because it helps others and it does make a difference, not only to me.
I may have hoped to be a rockstar or a DJ when I was little. I may have hoped to be a power attorney, brokering Hollywood deals when I was a grown up. But in my heart of hearts, who I am has never changed. I always look for hope. I always look for answers to my question of, “why?” — especially “Why do I feel this way?” or “Why is life like this?” And I always try to leave a clear trail of understanding behind me. All I ever really wanted was to make a real, positive, lasting difference in the world, and I think I’m doing that.
When I wake up in the mornings now, working on my book, writing in this blog, I have purpose. I know this is part of who I am, and nothing can take that away from me.