I love the internet, and for shut ins it's a wonderful window to the outside world. You can watch TV shows, youtube, read the paper, shop, email, everything. Without the internet I would have a much harder time following post-transplant infection minimization rules. Then there are the social networking sites, like Facebook and Twitter, where I can keep up on what people I know are doing and let them know what I am doing.
Except that I am doing nothing, and they always have something interesting to share. I am always acutely aware of what "normal" people are doing and what I am missing out on.
It's strange to watch life around you continue while yours is on pause. I know that all of my friends are going out to bars, museums, concerts, working, volunteering, doing normal things that normal people do. They get to see each other and have fun and meet new people. I hear about it and think about how I used to do that and wouldn't it be fun to do it again? It's a sort of weird state of limbo and disconnect from the "real" world. I know that whatever life I'm living right now is "real," but it's so uninteresting. There's no excitement, very little variety, and I have very little face to face contact with anyone who is not a member of my immediate family. I may as well have moved to the moon.
Yes, I know that my 100 days of prison are up in less than two weeks. I'm not here to complain or look for comfort, but merely to share what it is like to be cut off from the "normal" life of a "normal" 25 year old. Please do not leave comments about being almost done because it will irritate me. That isn't the point. I know I'm almost done, believe me!
The irony is that I have so much passion for life and for living it because I've been fighting the cancer beast for the past five and a half years. There are so many places I want to go and things I want to see and do. I'm alive and I should be living, not stuck in my house! Sometimes I think I'm going to burst because I want so much to go out and experience everything. But even after my 100 days are up I can't be on a plane until a year has passed since my transplant because of the infection risk, and I can't go crazy doing things just around town for the same reason. I still have to be careful. Shouldn't I be using this time to do all the things I ever wanted? I've missed out on so many things already because I've spent so much of the past five and a half years in and out of the hospital, recovering from chemo and transplants, and I'm tired of missing out on life. I'm so glad that I had the opportunity to run off to France for two years and travel around Europe and become fluent in another language but it's made me want to do even more. I can't even put into words how much I want to go out and experience things. It's like there's a firecracker inside my chest that is ready to explode from all the wanting and wishing and hoping.
It's also hard to think about my friends having fun without me. Of course they should have fun and go out, and I don't begrudge them that at all, but I'm so jealous that they get to do things that I can't participate in. I want to do all the things they are doing with them! I wish I were with them, I wish I could see them, I wish we could go out together. That's something that won't change at 100 days for me and my friends in Boston and France.
It's also hard not to feel a little invisible when you don't see people. Even if I know it isn't true, and I have wonderful friends who have made a point of keeping in close contact with me, emails and the phone aren't the same as being able to sit down and have real face to face contact with someone. Then there are the friends who don't make a point of checking in on me. I know they are busy with work or school, but they are also busy being able to go out and have fun and do "normal" things that "normal" 25 year olds do, and just can't seem to find the time to leave a comment here, or a quick email, or even a short phone call. Which makes me feel even better about not being able to go out and do anything.
On the list so far for my first days of freedom: restaurants, French conversation group, maybe a matinee, and shopping!