Ah, intuition takes me there
Intuition takes me everywhere
In my desire to share last week’s experience with the diagnostician, I realize now that I left out some pertinent information which may put my attitude into context for some of my readers who are outraged on my/our behalf. (And, truly, I am so touched by that. You have no idea how much.)
I am not going to let that doctor’s attitude, arrogance, laziness —call it what you will —deter me from finding answers for my child.
I don’t know what steel I have found within me but I refuse to let go of my knowledge that whatever is going on with Nik has a physiological cause. It may have some significant neurological manifestations but, based on our evidence-based knowledge that Nik’s brain has sustained no further injury since birth and there is no sign of any progressive degeneration, the cause is absolutely physiological. I know that from some deep-seated, intuitive understanding which I cannot explain but I trust implicitly.
Sometimes, when I am starting to doubt myself —to think that maybe I might be wrong —things like this article pop up in unexpected places and fan the embers of hope which I refuse to let die.
Lee J. Nelson struggled for years with a similar issue as Nik is experiencing—not the same but close enough —and yet he would not accept the diagnoses of the myriad doctors he saw. Sixty over the course of six years. One hundred different medications. He never gave up in his knowing that there was a root cause which could be addressed. His story is worth reading; it inspires me.
Nelson sums up exactly what I think many parents and patients with anything less than a straightforward, text book diagnosis may have come to believe:
Nelson said the experience has radically altered his view of doctors. “I’m very thankful I had the [financial] resources and the gray matter to do what I did,” he said. “But I think that a lot of physicians have lost their intellectual curiosity and don’t want to work with a patient.” [Emphasis mine.]
I will not give up. You —and especially Nik —can count on that.