These lengthening northern days are really tiring me out. I think spending so much time last summer in the hospital or in Seattle has ruined my ability to cope with the lengthening days. A lot of Alaskans get a bit manic this time of year. The sun comes out, the temperature warms up, it feels like spring should. The length of the day makes you feel like you can get so much done. The problem is despite the light you can’t cram any more in. The last two days I have spent a good portion of the day working on a shed project. I am not really supposed to be doing construction stuff but I can’t help it. The rest of the day has been spent hanging out with the boys. It is great to watch them race around on bikes, digging in the dirt, playing tennis (really just whacking balls) and just kid goofing.
Today while Finn and I sat waiting for Liam to get done with school Finn told me he could tell me a joke. I don’t even remember what he actually said. There wasn’t much of a joke but he started just throwing out words. Somewhere along the path of verbal nonsense he mentioned a “booty trap”. I have no idea what that is or why he said it. Partly he thinks the word “booty” is hilarious. When I asked him what it was he said it is like a “butt trap”. I asked what that was and he said he didn’t know. I haven’t heard the phrase in a long time but it fit with the summer feeling of the day. I started to tell him that a butt trap is a funny soccer term. When the ball is kicked high in the air a player waits for it to come falling down, timing is key, just as the ball whizzes by and hits the ground the player jumps over it or sticks their but out and the ball on the rebound hit the butt. A butt trap.
As I described this to Finn he found it quite entertaining and he insisted that I show him how to do it. As I didn’t have a soccer ball handy I had to defer for the time being. I did later in the evening show him the actual but trap. He was less impressed by the feat itself. His lack of interest may have been secondary to his fascination with the giant foam glider plane Gayle found today. She said it was for Jim but the kids sure did enjoy it. They ran probably two miles up and down the little hill at our park as they took turns throwing the glider. The result of this activity was two tired little guys. They are listening to Gayle read to them now but I do not think this will be a tough night for getting them to sleep.
I on the otherhand will probably still have difficulty falling asleep. The cause may be the light but it may be my constant worry that my health is still on a downhill slide. I find that lately while I try to do my semi meditation/self talk with my cells (“quit fucking with the rest of my cells, we are all one team”) I seem to get more frustrated with my situation. I feel good, I am a little tired, but good overall and yet the idea that in my body there is something going on which I can not feel. My labs clearly alert me to a growing problem but I can’t sense it. It seems a bit like last year when I was diagnosed with Leukemia. I guess I felt something was wrong but I physically felt very little other than tired.
The loss of rust in my own awareness of illness has been and continues to be one of the toughest aspects, mentally speaking, of this disease. To go from what I perceived as being well to being deathly sick was traumatic but the biggest damage was that realization of how little we can actually know what is going on in our own body. I often try to convince myself of the benefit of this realization. What I think might be going on might not really. So, when I am convinced another organ system is failing it isn’t, or when I think some little chill is the sign of impending infection it might not be.
Akin to the soccer ball flight in route to a butt trap, I was kicked really hard. I spent some crazy time flying through the air wondering where I was headed. As I returned to the world, the solid ground of everyday life I was terrified of the fact that the ground can be hard. I might hit so hard that I bounce right back into that floating limbo of a disease process, the not knowing, the which way am I actually facing. But hopefully, the ground will be soft and I won’t bounce much at all (a pillow pit landing would be nice). If I do hit hard and bounce I hope some deft player throws their big butt in the way and pulls off a nice but trap so I don’t find myself spinning.
Head Up, Heart Strong. I need a cure.