Saturday, September 19, 2009

On Being Tired

I get asked from time to time regarding my health, "How are you feeling?"
It is not always the easiest question to answer. For one, it depends on who is asking. Some people generally want to know, while others seem to ask the question out of courtesy, as though some unwritten code suggests they have to. It is somewhat peculiar, to say the least, and I find it quite odd when I realize that they actually didn't want to know; they were just making light conversation.
It is a fine line and I've come to recognize the sincerity of the question when I hear it. I wish I could tell people everything that is happening with me in five sentences or less. That would be nice. But it isn't possible.
I was thinking about this the other day when somebody asked me that very question and all I could say was, "Pretty damn lousy."
It is direct and to the point, and very descriptive. But my response was a little too forward and I'm afraid I left them feeling a little uncomfortable as they walked away.

When I first started this blog I went looking for other blogs that had to do with liver transplants and I found quite a few of them. One of them was The Real Life - My Journey Living with Cirrhosis to Transplant by Nancy White Real. At the time Nancy had just had her transplant and she was starting her journey to recovery.
I spent a great deal of time reading through her post and found that I identified with a lot of the symptoms she described. There were a number of post in particular that caught my eye and that I could relate to. Two of them had to do with tiredness. Tiredness is perhaps one of the hardest things I have struggled with since all of this started. I am constantly in a state of exhaustion.
Today I was reminded of this as I finally had to surrender to it and come home. I was also nursing a bad stomach ache on top of it. While I was at work I wanted nothing more than to find a place to curl up and take a nap, and if I could have found a place I would have logged in on break and done just that. As it was, I finally went home and slept for three hours. I am feeling much better now.

The following is a post that I read on Nancy's blog. It is a description of how we people going through liver failure begin to feel after our health begins to fade. I thought that its message was one worth revisiting because it says a lot about the transplant patient and his/her symptoms, and it provides remarkable insight into how a person going through chronic liver failure often feels. This is an excerpt from a book she found. I am not really sure what the name of the book is, but the name of her post was called:
Extreme Tiredness in Liver Disease

Wednesday, September 16, 2009

(open letter to my transplant coordinator)

Dear T.C.,

After having you for my transplant coordinator for the past year I was really disheartened to hear that you are leaving the transplant team. I understand the need for change, and I certainly understand your desire to do something different and something that you've wanted to do for a long time. I think you will do an outstanding job in newborn pediatrics.
I just wanted to say that I appreciate all that you've done for me over the past year. Every time I've had any questions, you have done what you can to answer them. Even if it took you a day because you were very busy, you have always managed to get back to me and not leave me hanging. Whenever I was going through a panic attack, you were always able to calm me down and assure me that nothing was wrong. You have always been able to assess the situation and explain to me that it was just a new symptom of the disease that was presenting and, if needed, you had the doctor call me right away. Which, incidentally, has happened more than once. Generally things were resolved with new medication and life continued on.
I have always appreciated the fact that when my wife and I had appointments, you always treated me with genuine respect. I have literally had consultations where the doctor or nurse chose to talk to my wife and not even look me in the eye, for whatever reasons they had. Apparently some people assume that because I'm sick, then perhaps I might not be able to understand them. Sometimes it has been necessary to say, "Yoohoo...eyes over here." That is a discourtesy that you have never inflicted on me and I thank you from the bottom of my heart.
Anyway, everything that you have done for me (us) has been greatly appreciated and Lois and I are going to miss you. On a professional level, you have done a great job and on a personal level you have been a good friend. We will miss that.
I am guessing that you have many patients pre- and post-op who will be very sad and shaken to see you go. I can only imagine that this will be hard for some of them (not to make you feel bad). But I think I can safely say that a lot of us are going to miss you.

Sincerely, Lois and Beaux (this is Beaux, by the way)

Oh yeah...and don't be a stranger. Drop us a line sometime.

Friday, September 4, 2009

Me, One Year Later

This was my first blog post, written just a year ago. I come back to it every so often only because it is like a solemn reminder of my place in the world. It is like taking a look in the mirror for me. It conjures up images of a distraught child looking out of a fogged window into the rain. I see a woman looking into a mirror with tears in her eyes. There is a man in a fit of despair and anger is on the rise. And even though I see these things; I see each of them walking away with renewed hope in their eyes and the beginning of a smile on their face. I see them reborn with some inner faith.
I originally posted this on my other blog because this one hadn't yet been conceived of. And once I started writing about other things I knew that I couldn't write about my liver disease in the same blog. So I eventually started this one, The Paradox Syndrome.
Even the name of my other blog This Isn't Happening suggested my need to want to write about everything that I was experiencing. I wanted to write about the anger and pain and the grief that I had been overcome with. I wanted to laugh and I wanted to cry. I wanted to smile and I wanted to joke. Eventually my own spirit began to change and I was able to do all of them from post to post.
In the beginning I didn't realize that I was about to share this with just anyone. I was still very much alone in it. I would not share my anguish even with my family because I knew it would hurt their hearts. But I learned those feelings were no longer secrets, and I would find that out soon enough as I watched my wife weep and wipe tears from her eyes every time I wrote something. Still, my need to put pen to paper was a driving force and I continued on.
A year later,  my spirit still wavers. And as haunting as all of this has been I am moved by my own recognition that life is fleeting. It is easy to hold on, but it is harder to let go. Occasionally I am that conjured vision of that boy staring through the window.
I wanted to re-post this because it has been a year now since I started all this. This is truly a reflection. While I may look at death with different eyes, I now look at life with open eyes: This Isn't Happening