I think the hardest part of all of this is not having an answer.
I know people mean well when they say (about Luke) "Well, at least it's not life-threatening."
Or, "he seems to be handling it ok."
I just want an answer and no one seems to have one. To have to leave disappointed every time we leave an appointment, to hear the same words, "This is very unusual. I've never seen this before."
I just want an answer. Why is it so hard for people to understand that sadness and even fear of having no answer?
An answer gives you solid ground, a clue where to go next. It's the answer to the problem. With no answer I continue to live with this problem. Why don't people don't understand that?
I have to disappear for a while; I have to, because my feelings are so raw that the very smallest gesture hurts. All I want to do is just unplug and pull everything off my wall, throw all electronics away, put a crucifix on my wall and stay there until I get my answer.
No more brave words for people. This is just where I'm at.