Day of Diagnosis

The day we both started to die a little bit more.

Dr. Bartel told me about the possibility of CJD and showed me your MRI and I saw the holes. I saw how your brain tissue was just completely gone in certain places, literal holes eaten through. To call such a horrifying image ‘shocking’ is simply inadequate.

He called the lab to check on your spinal tap results.

“14-3-3 levels high. Extremely high”, he said. And then the world melted away. His mouth was moving and I was nodding my head and everything began to crumble. His voice receded down a dark tunnel and my vision blurred. Tears. SO many tears. I heard him say, “This is what we were looking for to confirm CJD”. Yeah. I knew. I nodded.

Somehow my body moved from the spot where he told me, to the nurse's station. I held onto the nurses station counter and gasped, trying to get words to come out. I kept trying to speak, to say any words at all and these huge choking gasps kept coming out and hot tears just poured down my face. I finally managed to say, “I have to tell him” and started in on the task of trying to get my feet to move again. I think that I forgot how to walk.

The proximity of the nurse’s station where I got the news and your room where I would tell you the news was about 15 feet. In the 2 minutes or so that it took me to walk from one to the other it felt like 15 miles. Time distortion is what it is called. Sad magic is how it feels.

I told you that Dr. Bartel got the results back. Those were the last words I was able to get out before the pain started in earnest. It gripped from my stomach up my chest, ripped through my throat feeling like acid, like pure pain it ripped up the back of my throat and into my brain. It was as though I was feeling the pain that your body was incapable of perceiving.

Each time I tried to speak, the massive lump in my throat that was approximately the size of my anxiety would grow bigger still, preventing words from escaping my trembling lips. All of our mutual memories were on fast forward, flashing through my head, and the tears flowed hot and steady. Until that moment, I had never cried so hard and fast that tears actually dripped off of my face, but it was a first in many ways.

When I could finally speak, the words came out in pairs, stilted, halting, wanting you to know, not knowing how to say it. Like a flashing sign I focused on the words I needed you to hear. I saw them, I felt them, then I was finally able to say, “Thank you for being my brother”.

I guess that neither one of us knew that we were both going to die a little more that day. Now, four years later, I can finally put my finger on the big mystery that has surrounded my heart since that day. I have tried to figure out what is different. Now I know: Part of me is gone. You took it with you and I gave it away. Part of me died when I had to tell you what was killing you. Another part of me died the moment that your heart stopped. I think that maybe a bit of my heart left every time I saw you in the hospital and touched your arm and laughed with you, when you could still laugh. I lost a bit more that last night. That was the biggest part. And you know what? I gladly gave it away. I’d give more away if it meant I could get you back. But, that’s magic and, as we know, magic doesn’t work. If it did I could have switched places with you. I’d give away even more of me if it meant we would get you back again.

I feel like apologizing to everyone I have met since you left. My new friends only get a fraction of the leftovers of my heart. I still hold out hope that magic can work and I can figure out a way to get you back.

Out of my mind

Something is different.

Something is wrong.

What would I do today, tomorrow, right now, this week, this month, this year if I knew for certain that I was slowly losing my mind? Would I need to prepare them for school? Write everything down? Write them daily letters so they know how much I loved them?

What if, at the very heart of me, I am no longer me? Frankly, the thought of my husband having to dress me and teach me what a fork is terrifies me.

What if I finally get to meet friend N in Grenada and friend T in Canada and I can't remember how I know them?

What if I don't remember who I am?