I have had many great reminders lately of a lesson that I have learned many times over. Since starting this email group a long time ago (first time I’ve ever said it was “a long time ago”, but it actually was, Nov 9Cool, I have had many conversations about writing one message to so many people. Of course today I am writing to many more than I ever expected, especially compared to the days when we started with 25 friends and family. Today we are well over 2,000 strong and we grow every day!
As you know from reading my messages I will talk about a range of things, very rarely do I ever plan a message. Most every time I come with a feeling or a general thought of something I want to “talk” about, and then I let it flow out here to you. And when I do let it flow out, though it is written in black and white, I am constantly amazed at how differently those words can be taken in, internalized and interpreted. This is exaggerated when I write something that is particularly close to the heart or emotional, it seems, but it happens most every message. It kind of leads me to thinking that each of you, to some extent, will take from my messages what you want, or need, which is a great source of comfort for me as I feel it’s important that you “get some of what you want”.
Though many of you are very kind with your comments about my efforts to share my experience and tell me of the Positive things you take from my messages, I will be honest and say that I wonder who gets more from this email group? And I can tell you that most days I feel it’s me!!
Switch gears here…
I call myself a “Realistic Optimist”, which to me means that I make the effort to see the Positive side of life and all things it in, while remaining realistic about those experiences. Realistic, of course, is from my perspective, just as you are realistic from your perspective. And as I get out in the world, and see more people, some for the first time in a while, some for the first time ever, I am hearing something consistently, which is really encouraging… “you look great”. It is nice to hear that I’m looking good, or better than people expected me to look, and the truth is that I feel better than I expected to feel at this point after Transplant. However, we all know appearance is not everything, more to the point it often isn’t a very accurate indicator of what’s happening inside at all.
This time last year I was “busy as a bee” and on the go consistently, however if I had had a bone marrow test done in June 2001 it would have most definitely revealed that my Leukemia had relapsed. The diagnosis day for a disease doesn’t mean that you are sick from that point on, it often means you have been that way for quite some time, but you didn’t necessarily know it.
At present I am feeling great, I don’t have much in the way of physical pain, certainly nothing like I was used to from my first major rebuilding, and visually I look pretty “normal”, save the bald head. However inside things aren’t that way. The blood tests are pretty good, no major issues, no skin rash, which is very common for Graft vs. Host Disease, which I have. I’m skinny, but I have been that way for quite a while now so I am pretty used to it… I have no ass so I can take most of my jeans off without un-doing them! (get your mind out of the gutter!) But the truth is that while I look fine, and if you didn’t know I had been sick you probably wouldn’t think I was at all, inside things aren’t anywhere near “normal”.
I have learned that my Positive Attitude and approach to Challenge can give people the impression that I have things all together and everything is fine. And while I am in a very comfortable place right now, and most everything is fine, I feel it’s important to communicate the fact that I’m a long long way away from what I considered “normal”. My strength and specifically, my energy, are so far behind where they once were some days I feel like I’m tackling Everest starting from the ocean floor. That is my reality, and I have accepted that reality. It takes me many many days to recover from one full one, one good night’s sleep doesn’t recharge my battery it just allows me to stay on the same level, no matter how high or low.
I don’t get mad about the fact that I can’t play the sports I love, and maybe I’ll never be able to play them again, that’s not what I’m talking about here. What I am wanting to communicate is that this experience, this Challenge of mine, is a long road, a very long road. You remember I asked you to imagine leaving work or school today, and not going back for 18 months. That’s what I did first time out, and it was 30 months before I felt somewhere near what I remember feeling before my first Cancer Challenge. I have connected with Patient friends who are years more getting back to “normal” than I was after having a Transplant.
I guess I want you to know that while I’m feeling good, no pain, and am blessed to be able to do so many of the things I love and have missed, the reality is that my Challenge, and Challenges are with me every day, every minute. And while they may not be tangible Challenges, they are just as Challenging. I want you to know that about me, but probably more importantly I want you to know it about all of my Patient friends, who are facing the intangible Challenges associated with working their way back from their respective treatments. We all need love and support, more to the point I will tell you that for me they are some of the most important things!! I know we all need love and support, and I encourage you to give it when you can.
Have a fantastic day.
Always…
Live Life. Love Life.
Geoff
