When you are told that you have a terminal illness I suppose there are a lot of thing's that go through your head. Most people might ask the question: "Am I going to die?"
I cannot for the life of me remember what my reaction was. But I think I thought of something along these lines: "What's going to happen now?"
Since then I have probably had over a hundred other reactions. One of them goes something like this: "I don't want to die." (This one is heartfelt and is usually followed by a lot of tears). I get that one about once a week. But the world moves on and I go with it. I have also taken some time to look at the course of my life and paused for reflection upon my past, present and future. And not necessarily in that order. Currently I've been contemplating my future. Some of the things that come to mind are:
How much will my anti-rejection drugs cost me?
When this is over will I still be able to pay my mortgage?
How will I manage to live in a multi-level house after transplant?
And when the doctors tell me that I am going to get real sick before I can get better. I am wondering to myself just how sick are we talking about?
"Oh," They say, "You're going to be getting real sick."
And after a few hours on the internet I was able to learn a lot about getting sick. For instance the time in question for getting real sick almost always involves taking time off from work because you can no longer perform your duties and it usually means you will end up in the hospital on your death bed because that is perhaps the best place to be while waiting for a transplant.
So I haven't lost sight of my future. I know that I have one. It is the things that are inherent to that future that I wonder about.
Will I be able to run and jump and scream when this is over?
Yes. In fact it is encouraged that you run and jump and scream. Exercise is one of the best medicines in the world for healthy living. I only wish now that I had already been doing this running and jumping thing all along so that when I do it later I won't have to scream.
Right now I am extremely exhausted and that is one of the symptoms from my liver disease that I lug around all day long. When it is 3 or 4 in the morning it will make me cry. My hormones are also changing and as a result I will probably wind up growing a set of man breast (I'm thinking size P for pathetic), but now I can actually sympathise with my wife when she says that her breasts hurt because right now mine are just killing me. Plus, from this moment forward I will probably never laugh at another man who has man breast. Maybe.
When I get my liver will my life return to normal?
Yes. For the most part. And in some cases things may even look better. The exhaustion will eventually dissipate and I will be eating better because the doctors will insist upon eating meals right out of Healthy Living Magazine so that we can ensure a healthy diet. Will my man breast return to normal? Probably not, but hey...if I go up just one size for a new chance on life than so what. I'm not going shopping for a size P just yet.
When I started writing this blog it was more for myself. I wanted to keep a journal of what I was going through as my illness progressed. I wanted something I could share with my friends and my family. It would be my little black box should the plane go down.
In doing this I discovered that I had other things I had to say but, I couldn't write about one thing without it somehow spilling over into the other. So I started a journal called the Paradox Syndrome. I thought I'd be saying things like, "Today, I threw up," or, "I'm spinning again." But I did not foresee my own personal revelations coming about and I did not realize that I had other things I wanted to say.
All of this is complicated. I know that I am sick and I know that just because I've been told that I'm terminal, it doesn't mean my life is over. This is a paradox. People live through illness. They survive cancer. And they survive organ failure.
So why I am posting this here in this blog rather than in my journal?
I think from time to time it's good to be reminded about the things that make us human.
This week I am celebrating my second month on a two year Waiting List. I have a long ways to go before I can get a transplant, but it is one more month that is now behind me.
My contemplation of the future is no fluke; there is good reason behind it. As I start to feel new evidence of this illness, I keep turning the words 'real sick' over and over in my head and I am beginning to wonder how many months I have in me.