The Beginning of the End

A prayer was said for me today. My new friend, and I hope I can call her that, emailed it to me. Just so you know, if you are praying for me, I consider you a friend. Anyway, my friend prayed for my "gift of words". That's the polite, Southern way of saying I talk a lot. And if you know me, you know this is true. I'm okay with the fact that I talk a lot. I consider it a superior gene passed on from my Grandad, the best man, and most amazing man, I've ever known. He was a natural communicator, told the best stories, and never met a stranger. I'm proud to carry on the Bouchelle legacy. But I'm chasing rabbits. At the end of the prayer, my friend suggested I use my gift to journal the path on which Ray and I have been placed. She felt it would be a source of strength, not only for us, but for anyone else who might find themselves on a similar journey. I had considered it in the past, as writing is therapeutic and I love doing it. It's a lot like talking.

I know Ray and I are not the first to face the medical unknown, but our situation does seem somewhat unique. I am currently sitting in a waiting room at St. Mary's Hospital in Enid, Oklahoma while Ray is being tested by a neuropsychologist. Frankly, I didn't know such a thing existed.  Ray is being tested for thinking and memory skills. I'm dreading the results. Mostly, because I'm pretty sure I know what they will look like. Even when you are prepared to hear the worst news, it is still devastating to have a medical professional confirm all of your fears. After this, we go to see his neurologist who will review the results of this exam. I'm not certain if we get to hear the dreaded news from the first doctor or the second, or worse yet, have to listen to the explanations and results from them both.

Ray has an unknown neurological disorder. He's suffering from a loss of balance, slurred speech, and slower cognitive skills. Thankfully, his memory is still intact. It's not caused by a tumor, or cancer, or Multiple Sclerosis. Sadly, while waiting for MRI results on a February afternoon, I actually prayed for a tumor. A tumor can be seen, fought, and maybe even removed. Whatever is causing Ray's symptoms is vague and undefinable. We have no prognosis or diagnosis. We don't know if he will get worse, but it is doubtful he will get better. And if he does get worse, what is "worse"? How bad does that get? Will he forget us, his family? Who he is? Will his personality change? How long does it take for "worse" to get here? And the big scary question that never really leaves my mind: Will I be raising the boys alone?

For a mere $44,000 we can have a genetic test done that will name it. Insurance supposedly offered to pay all but 10%. I'm still waiting to see that in writing. It doesn't matter what the test cost, the name they put on the disease, or how many doctors we see, the facts remain the same: Ray's brain is changing. Sometimes he is irrational and angry. Sometimes we can't talk because I just can't understand what he's saying or it doesn't make sense. I often hold his hand when we walk so he doesn't fall or look like he's been drinking. He can't write a check anymore because his handwriting has become illegible. Even though the symptoms and the search for answers started long ago, here is the beginning of my blog or journal or maybe just our story.

The test is over. Time for those dreaded results...