Life is full of misery, loneliness, and suffering – and it’s all over much too soon.
~ Woody Allen
Every time I write a blog I feel like it might be my last. How could I have anything left to say? Then the next one appears in my head, generally pretty much fully formed, and I need to write it. It’s a strange process to reveal one’s personal journey so publicly. But your letters have made it well worth putting up with the unpleasantness and infighting. The feedback that my writing has helped someone’s isolation, or helped medically in some way, means everything to me. One of the worst things about getting sick for me was being unable to be of service.
Writing this blog has required a willingness to be wrong. As I’ve said repeatedly, I could be wrong about anything, though it seems unlikely that I’m wrong about everything. If I am, I figure I can still become Jamie Jones and move someplace where there is no internet:). There must be somewhere on earth one could still go and live completely unplugged:). There are inconsistencies inherent in blogging, writing on different days from different moods. When I sit down to write, I try to center myself so I can find what is true for me at that moment. It isn’t about building a flawless argument over time. It is a moving target. I have made being honest more important than being perfectly consistent, but there isn’t much I’ve written that I’d retract. I’m not as angry now as I was when I wrote certain things, so I might be gentler if I wrote some of it today, but not so different in substance.
I received a lot of mail today concerned that I sounded depressed and hopeless yesterday. I am neither. I am sad and, unfortunately, somewhat sicker than I was a couple of months ago. And really tired of this fight, because absence of proof is not proof of absence and we’ve got something serious, most likely of retroviral origin. Something I now have to treat, with or without all the answers. Like all of us, I hope that the BWG and Lipkin are positive studies. But if they aren’t, it doesn’t change a thing for me, except for the timeframe in which I can reasonably expect help and change. As Karina so eloquently said in the comments of the last post:
I have accepted that I have to live with this disease and I will most probably die from it too. As ridiculous as it sounds accepting that is somehow giving me some peace of mind.
I am no longer trying to reach for the stars but try to reach for the possible.
I worry less…..
But I still worry for our children
and for our children we must continue to fight….
I took a big emotional hit in early July, and my declines are always a month or two after a major physical or emotional stressor, so right on time. I am sorry that arv’s didn’t protect me. Until now, it has seemed to me that I was more resilient than expected. But I am not depressed and I certainly still have hope. My coping mechanism is always to look for meaning in my predicament. However, I am getting real about what I can expect, personally and professionally. Baby steps. I’ve put a lot of energy into understanding the unfolding science. The heady days of discovery seem to have wound down to this period of uncertainty. My focus has turned to the clinical now. I have a limited bag of tricks at my disposal, but not an empty one. I don’t feel in any way powerless. The patients I’m seeing have some maneuvering room and we will work with what we have.