Monday, 24 November 2014

Confessions of the journey undiagnosed


I have a confession to make, and it’s neither pretty nor complimentary to me. I am out of patience. I confess that on too many mornings I am done with the trying to figure out if my 13 year old is ill, or if he is just 13. I am ‘up to here’ with trying to be patient with a system that has no way of telling me if any of his doctors have ever spoken to one another about my son’s symptoms. I am done with trying to find out if they have even read each other’s reports. I am tired of trying to figure out what departments are overdue to be seen and who needs to be prodded and what reports aren’t in my binder of medical history.

I am done with tying my brain into knots trying to make connections between activity levels and symptoms, signal vs noise, data vs everyday occurrences in a life that is an ongoing science experiment where the outcome measure of success is less pain and better quality of life.

I am out of patience. I am tired of trying to figure it out. I am done with the mental gymnastics of juggling appointments and interpreting information between health care practitioners and school systems and government bureaus. I need a vacation from this life of constant background calculations of ‘if this, then that’.

I am out of patience with myself because there is no other option. I am the one to tie it together, to find the pattern, to find the signal within the noise, to pull the pieces together. I must be the bastion of calm, the repository of memory, of information, of puzzling the pieces together. That is my role. And I can not afford to lose patience.