Its a crazy thing to sit in a room and be told by a virtual stranger that you have a disease with no treatment or cure. My head was spinning with so many thoughts and all the unknowns and one central question … how long? We all know we are going to die, its not a secret or anything. Its just the manner and the timing that we hope to push away. Usually, we don't know anyway so why worry about it. But once you are given an expiration date (range), it sort of changes things.
I left the hospital making big plans for a trip to Europe. I mean why wait, we should go right away. And then what? A trip to Cali to see my family there, laugh and have fun doing all those silly things we have always enjoyed doing together. Then another island trip? Sure, lets make it happen. And New York too, take in a Yankee's game and eat all the cheesecake I want. Then what?
As these things started to become a reality, one by one, I realized I wasn't ready for any of them. Europe is far, over 8 hours on a plane pressurized to an altitude that I don't know if I can breathe comfortably in. Once we are there, can I handle the whirlwind kind of trip we are talking about? Will it really be fun or just too much too soon? As much as I want to see my family, I know it won't be easy. Everyone is dealing with this in their own way right now and I am still trying to get a grip on my own emotions. Will it just be too stressful and take all the fun out of it? The islands, maybe. I mean it is not far away and its all about relaxing there. A little swimming, sunning, drinking, eating, a lot of relaxing … maybe. New York is always a fun city, my favorite city to visit really. Again, its close enough and there isn't too much stress involved in that trip, so … maybe.
Dan and I have talked about what I might want to do. Learn to ride a street bike? An old dream, one that I feel I satisfied when I learned to ride a dirt bike a few years ago. Europe? A long time dream that I would like to fulfill at some point, but not this month. Green Day in concert? The venue is huge which means thousands of people, lots of smoke, and I think I can wait on this one. So, what then?
The truth is, I don't know. I feel like I should be doing something, should at least want to be doing something, everyday. The reality is, I don't know what to do and for everything I think of, there's an equally good reason to wait, but is it smart for me to wait? Then I realized, finally, its ok to take some time to sort it all out. I don't have to do anything this moment except breathe and take care of myself as best as I can. Processing all of this information is important for me right now. Until I have my own head wrapped around it all, how can I help anyone else deal with it?
The first couple weeks, I just cried everyday. I couldn't help it. I may be a positive person, but how do you put a positive spin on ALS? How could I not think about all that I will miss or feel the deep loss of everyone, everything? At the same time, I was trying to understand that I am strong, I am relatively healthy at the moment, there is no reason to believe I am not one of the people who will live decades with this without any significant progression. I've always been stubborn, so why should this be any different?
The last couple of weeks I have felt better. I turned a corner somewhere along the way and realized I am still in control of how I deal with this, how I react, how I live. And that is the key … I am living! That doesn't mean I have to do something big everyday, some days just require quiet breathing. There will be days for the big things still, but I think the important thing is to get to them in a way that allows for the enjoyment of them, not running at them in fear of missing out. I choose to go forward with intent.
Some days its just the simple things that make a big difference. I like to jump in the ocean and go swimming and just float in the waves during our morning walks. I don't do it everyday, but I love it on the days when I do. I also love driving in my car. I traded my FJ in for a convertible VW Beetle, an updated version of the one I had when I was in my early 20s. I put the top down, crank the tunes, and just go with my hair flying every which way! It always puts a smile on my face, no matter if I'm going a couple of blocks to Starbucks or an hour to Jacksonville.
The point is, everyday is a gift to each of us. I want to focus on being healthy and being grateful. Grateful for the love and friendship and support I am surrounded with, the love I feel so deeply in return, the joy in the simple things, and the ability to plan for the big things when I am really ready. I am grateful that I can focus on living again, on being positive, on taking care of myself so I don't over do things out of fear, remembering that fear doesn't rule me, knowing that when I forget that I am ok, there will be someone here to remind me. And, as always, I am eternally grateful for my husband, our son … there are just so many things to say but for now, thank you and I love you always will do.