Wednesday, April 09, 2008


I stood to the side of the stage. I stood with one foot in front of the other, hands pushed deep into my pockets. Cherry colored lights beamed down upon you. Heat and smoke surrounded us all. I couldn’t breathe. You caught my breath with your downcast eyes and lazy, quiet voice.


April. Jim handed me the CD and said, "It’s called April." I smiled. The new Sun Kil Moon record. What a way to end such a good day. Yesterday was the last day of steroids. I’m so glad. So glad. Thanks for sticking with me through all of this. I’m so lucky. I’m so blessed. And right now, it’s so good to hear Mark Kozelek’s voice, his lazy, quiet voice and his meandering guitar. This is the first record that I’ve really listened to in a long while. So strange, especially since my whole life for so long has revolved around music. While stumbling through this mess of a relapse, I feel like I sort of lost myself. I feel like parts of my life just toppled while I tried so hard to keep everything balanced. It didn’t matter what I did. This disease is so unpredictable. I hadn’t had a relapse in four years. Four years. I had the small symptoms everyday, the numbness, the dull aches, pins and needles, the fatigue, but I learned to live with it. That’s what you do. You go on. Embrace this strange and wonderful life you’re given. I embraced it. I saw the beauty in it. I made the best of it. I hoped. I hoped against hope that this would never happen again. The Avonex did it’s job at least. It may not have stopped the attack, but it did lessen the severity. And that means all the world.

Tonight Jim took me to Workplay for a dinner and lecture hosted by EMD Serono. It was your run-of-the-mill "You should totally take our disease modifying drugs" deal. Jim and I have been to another of these recently hosted by Biogen Idec. They are all the same. They feed you and then make you sit through a long lecture listing facts and figures from all of the latest research. The dessert was pretty tasty, some sort of chocolate pie. I really did enjoy the evening. I got to dress up and go out with my best guy. I made some new friends. And I got to see this video, a short film by MS Ambassador Kristie Salerno Kent.

Um..."I don't think it's a coincidence that the word Dreams ends in an MS."
Hilarious. (Although, I don't think it was supposed to be funny) Jim and I both agreed that the mall sequence was really great. I think it gave Jim a better understanding of symptoms. It's hard sometimes to describe what I'm going through. From now on, when I'm trying to explain, I'll just pull out my high heels and scuba gear and he can go to town.

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