We wanted to watch Jurassic Park. The kids were up for a dinosaur movie. I got a pirated copy, which was too laggy. Got a different pirated copy, also too laggy. Then I decided I would pay for it, and ordered an Amazon instant copy. After dinner we went to the computer room to watch the movie, and the door was closed. And the doorknob broke. So the door was frozen shut, with no one inside. After several attempts to break in to the room with credit cards, screwdrivers, or brute force, John had to go outside and break in through the window. This required using a paperclip to open the screen and then crawling through the half-open casement. (It also demonstrated the security of our house when the windows are open). Upon successful removal of the doorknob and mechanism from the inside, we were able to get in the room...to discover that the Amazon video buffered constantly and was too frustrating to watch.
At this point a friend suggested that Jesus did not want me to have dinosaurs.
Finally, John went to the video store and got a hard copy. It worked beautifully. The kids loved it. They've been discussing the finer points of Jurassic Park ever since.
There are a couple of lessons here. One, there are a lot of ways to approaching a problem. Two, there are times when most of them fail. Three, if you want to watch a dinosaur movie, you have to keep trying.
I'm not supposed to be worrying about the future. I can dream about it, or I can stay in the present, absolutely, but it will obstruct my healing to create any anxiety about what might be. For the first several weeks out of the hospital, I felt very antsy about how I should spend my time and what might happen in the years to come. (I learned from my homeopath that steroids interfere with emotions in a way that can trigger these types of feelings, which helped me to let go of them as part of a passing phase in the process. Nonetheless, they felt real and I wondered how to deal with them.) But there still is some kind of future coming, and this recovery is non-linear, and there are as many types of long term outcomes as there are people who undergo transplants.
Sometimes I get frustrated. I feel pretty good, considering what I've been through, but I don't feel really good. I had withdrawal symptoms when I dropped the ativan too fast, so I have to go back on it and taper it and hope that I can normalize my sleep and be free of the drugs. I can't figure out what to eat that makes me feel well and is healing. My doctors are extremely conventional and conservative and not knowledgeable about anything outside of allopathic medicine, so they can't work with me on other approaches to my recovery. I either have to go maverick and do things I am comfortable with but know they disapprove of, or I have to forego doing things that I know will help my body. I have to take medicines that are much worse for me than they realize (not that I wouldn't have to take them anyway, but I think the doctors are a little cavalier about a year of prophylactic pharmaceuticals). I have to deal with extra fatigue and shortness of breath and other unpleasant symptoms and I can't get second opinions outside of the transplant world because it is a packaged deal.
So it's up to me to experiment, because I know that my body is unique and the one-size-fits-all approach of allopathy isn't sufficient for my recovery. But there are a lot of things to try, and some of them won't work, or they won't work all the time, or it's too soon after transplant to feel the way I want to feel all the time. Do I eat wheat, or not? Gluten, or not? Dairy, or not? What do I replace salad and sauerkraut with? How do I compensate for the fact that the doctors want me to take folic acid, which is hard on the body and may be dangerous as a supplement, or prophylactic anti-fungals, which are a neutron bomb to the microflora in the body that are responsible for, well, everything from mental health to skin texture?
There are days when I feel sorry for myself. Times when I wonder if I'll ever feel better than this, or if I'll suffer permanent setbacks as a result of this process. Moments when I don't feel grateful or joyful, just irritated. When I can't keep up with my kids during a soccer game, or even with my husband on a walk, I wonder if this is the rest of my life. It's the only one I've got, though, so I have to keep trying, stay flexible, and hope that sometimes I'll get it right, or at least right now.