1800 Orleans St.

I’ve had to fight for many things in my life, and I suppose this is no exception.  Some days I hope that things are not as they seem.  That I will get an easier break than I’m likely to, but that is not to be.  So I’ve got to make the most out of things.  Not to be an utterly cliche broken record, but I’ve got to cherish every moment.  Every experience.  Don’t get me wrong, I want to get angry too.  Because no young adult should have to deal with this.  I need to be angry enough to make a change.

We’ve decided to do my surgery at John’s Hopkins.  I think that the seriousness of it all has finally hit me.  I’ve realized that I don’t really have an option over whether or not I go.  If I don’t have the surgery, sometime in the near or far future, I will likely develop a complication that could take a limb or my life.  This could be next month or in ten years.  I could get lucky and go a long while with no complications, both arms, and my life…but the more we’re learning about the rarity of my particular situation, the more we’re feeling as if I need to get these surgeries as soon as I can.  So, per usual, I’ve grown increasingly impulsive.  Not bad impulsive, but, “I want to scream from rooftops and stay out dancing till midnight if I may be dancing with death anyway.”

I think the brutality of this situation comes mainly from the fact that suddenly my eyes are open.  I notice things, and I am absolutely infatuated with life.  It’s a great paradox.  I love it all so much that I have to resign myself to a room, at a respite house, in the hospital district of a city I don’t know– so that I can later resign myself to a room, in the hospital, in a city I barely know– so that finally I can have the privilege of falling asleep in my bedroom, in my neighborhood, in a town full of people who love me and will get to see me for many decades to come.

I hear that my new surgeon is incredible.  His success rate and low recurrence rate is almost unmatched.  I’m thankful, I really am.  Some days I just wonder why those who love this life the most are often the ones who have to fight the hardest for it.  Maybe that’s because everything seems so  beautiful when things aren’t guaranteed.  November fourth I will be flying out for one more test and a meeting.  In usual Emily fashion, I have much to get done before then.  I’ve got Homecoming, a wardrobe fitting, an episode of Shameless to shoot (more on that later), trick or treating as “Pam and Angela” from The Office with my dear friend Elisabeth, and one of my infamous “Get Busy Living” lists to complete.

In short, I’ve got so much to fight for.  And just for the record, my memoirs someday are going to be incredible.