During the deluge following diagnosis each day’s flood brought something new if not welcome. Somewhere around the day 34 came the emotional realization that type 1 is forever.
That was that day’s flood. If nothing else it was a change from the prior day’s flood.
It rained a flood and kept raining but at least the rain was flowing. After the deluge of emotion that comes with a type 1 diagnosis comes a drifting emotional separation.
The changes stop coming.
Without the rain it is still.
I just try to live with it.
Hanging on day to day.
I go through motions.
One step at a time and hang on.
One blood test pretending it doesn’t hurt.
One shot without wincing.
Count carbs like it is normal.
I wonder what I did to cause this.
Or deserve this.
It is hard.
All the while I am sticking surgical steel needles and lances into the children six, eight, a dozen times or more a day. It no longer count as a rainy day, as the flood, because it has become a routine.
One that that will never stop.
What I thought was part of the flood isn’t. It is part of drifting. Just grab on and try to float. I want to go back to the way it was. That isn’t an option.
It would be a lot easier if I could float with out some of the stuff I brought on board. Like the strange feeling I did something to bring this on. Or that I didn’t do the poking, measuring and shots that I had to do just exactly right.
Floating is hard.
I am alone. Made more so when well meaning but uninformed people pass on silly but hurtful suggestions that I caused this or some simple cinnamon snake oil will cure it. It is so much easier to shut the world out and float alone. So I do.
But floating in isolation is hard and I brought guilt aboard.
Guilt lives in the type 1 universe in ways I don’t even begin to appreciate. It is part of the official canon of some medical practices, “You need to be more compliant.” Guilt has a great PR agent who repackaged it as 'ownership.'
For now, in the drifting stage, know that guilt is one of the things we brought onboard two by two, clean and unclean.
Floating is hard.
Floating is looking out and seeing nothing but water. We do the best we can. There is chatter and commotion coming from all the good and not so good emotions that we have brought along floating.
If we find while floating the grace to just hold on one day at at time we are doing great. Some where in that isolation and suffering we learn about compassion.
In the second of the Ark series Chuck said of floating, “We get a deep deep level of compassion because we can look at somebody who is suffering and honor their suffering without giving them some trite formula. We can honor how hard it is that day... that gives us the ability to serve, to be human to one anther.”
That hit me.
Every July, I marvel at the community at Friends for Life. When I heard Chuck say that I realized compassion is a huge part of the diabetes community. Many of us are likely to to simply say the people at FFL “Get It.” Now when I say that I realize I don’t just mean juvenile diabetes. I mean they understand and honor struggle because they have been or maybe still are floating. They honor suffering without some trite formula.
Guilt is a trite formula.
It is worse than the hurtful suggestions that we caused this and cinnamon snake oil and we give it to ourselves. We don’t need it. We can be compassionate enough to ourselfs to turn our back on diabetes guilt.
The end of Noah’s floating begins when birds brought him back leafs. I am going to bring this essay on floating to an end by offering two leafs. Two wonderfully compassionate essays to help separate diabetes and guilt. These are gifts from good friends Scott Strumello and Kerri Morrone Sparling.
Grab the leafs when ready.
Next: Ark to Arc.
The Ark series that inspired this is partially available on line at http://vimeo.com/7187279 Partially in that all talking is there sadly the music of the services isn’t. Each service featured amazing music, rock for the most part but the music is most notable for a hauntingly beautifully version of Somewhere Over the Rainbow that brings tears to my eyes thinking about it. The full service is with tunes available on a DVD. They don't have an online store but you can email http://mrd.mail.yahoo.com/compose?To=chuck.blair%40newchurchlive.tv and he can set get you a disk.