Tuesday, September 3, 2013


“The most beautiful thing we can experience is the mysterious. It is the source of all true art and all science. He to whom this emotion is a stranger, who can no longer pause to wonder and stand rapt in awe, is as good as dead: his eyes are closed.”   --- Albert Einstein

"The heart wants what the heart wants."  --- Woody Allen

My life with Bill has lead me down more than a few roller coasters. Just when I begin to think I have a grip on things I find myself leaping off the next cliff, looking for answers, questioning my actions and decisions, and forgetting that in real life there are things that happen that are out of my control. If not for laughter, I would lose my mind. 

The Bill I am seeing the last couple of weeks is withdrawn and has drifted off perhaps in thoughts, perhaps in memories, or perhaps he has just drifted off in the clouds. Where do we go when we are "there?" The changes in routine, in eating, in skills, in speech, lethargy, flat affect, and signs that he is having pain trigger the nursing staff to investigate, so off to the Dr.'s office we go. Or as Bill puts it, "going to see the German." I have to tell you, not all of Bill's "nicknames" are quite this polite.

The Doctor, a scholarly healer with years of experience marked across his face, begins to engage Bill in conversation. "Professor?" he begins. Bill sits in his chair oblivious that the conversation is being directed at him. "Professor?" the doctor repeats. Bill's eyes remain fixed in space. "Honey," I turned towards Bill, using my finger to slowly draw his eyes to the physician. The doctor began asking Bill questions. Some he was able to answer with one or two words. Other times the words were jumbled, not related at all to inquiries. 

"I see many changes," the Doctor notes. We talk about past health history and my original concerns that his melanoma, treated five years ago, might have internalized and metastasized. I see many changes, he indicates, and a cat scan is ordered to rule out other causes. I am elated that further steps are to be taken. And I am alarmed. The time before last ... the time before the last time... Oh, dear God, the time before the last time he ran. And the last time we did complete the test, but only after he was given 40 milligrams of Valium and he was accompanied by a 400 pound sumo-wrestler type attendant that I sweetly referred to as Bill's private bouncer.  

So here I was again, sleep deprived and  anxious from flashbacks and night terrors and the horror that I had slept through my alarm. I ran from my car, bursting through the hospital doors, panicked that he would look for me to help him, wonder where I was, filled with fear. Would he fight once he realized what was expected of him? Would he run? Relief flooded me and tears began to roll when Michelle, his social worker, he was calm when the nurse took him by the hand and led him to the MRI. Silently I sat, salty droplets falling from my bowed head. Just about the time I feel like I have accomplished a balance in my life, I find myself baffled with a new phase of grief. Guilt? Anger? Questioning myself, our past, if I have done all I could possibly do... and wishing it would just be over. There it is. It feels like the greatest sin of all, wishing it would just be over. 

Just be over... what would that mean?

Bill, I am so sorry. I got absorbed in a stage of grief. Sometimes it is difficult for me to break out of my world and imagine more out there. I am starting to pull it back together- identifying the source of the sadness is a difficult process. I am trying so hard to make it through this. It's very difficult to watch the father of my only child go through such hell.  We've been married for 26 years this week. I loved you through most of those twenty six years. For twenty six years I uprooted myself, uprooted our son, to support you, to serve you as wife til death do us part. 

1 comment:

  1. Sorry that you too have to endure this horrid disease at such a young age. It certainly isn't easy.........I know!
    Here is a link to my blog.....hubs was diagnosed with AD at age 46. I think all of us wives in this battle need to stick together!