Do you know about the coin that Kirk gave you? I’ll tell you since you were dead when he did it. He brought a Sgt coin to your funeral and presented it to you just before they closed the casket. It brought my love and respect for him to a new level when I realized that he did this thing, what some would consider a small thing, but a gesture that was monumental to me. It meant the world to me that he took the time to go get your coin and bring it to the funeral and place it in your lapel pocket. After he arranged it perfectly in your pocket he patted it and, with tears streaming down his face, saluted you. One last time.




It feels strange, loving him so much and missing you so deeply. When I was a kid I used to lay my head on your chest and listen to your heartbeat. It was strong and comforting and made me feel safe. When I married him I did the same thing and his heartbeat took the place of yours in terms of making me feel so safe and comforted. Then on your last day it all fell apart. I laid my head on your chest because it felt natural to do so. I listened to your heart beat every once in awhile, no longer strong and loud and this horrible terror started to rise and I thought it was going to consume me. Hearts beat in an unpredictable rhythm near death, erratic and weak. It scared me that you were no longer that strong force in my life. I could actually hear you dying.



I listened to you die. I heard it. Your heartbeat came weakly and haphazardly and when I heard each beat I wondered if it would be the last so I savored each one. I remember the very last one because I hoped it wouldn’t be.
And then it was.
And you were gone.



I am trying to reclaim that gesture, of putting my head on his chest. I’m trying to get it back to that safe comforting feeling, but I can’t seem to forget what it was like to hear you die. I can’t seem to stop feeling that moment of loss when my head rested on your chest and you were gone.



Last night I tried to lay just my cheek on his chest so I wouldn’t hear his heart beating. It felt weird and contrived and not at all comfortable. It was a lame attempt to make this right again.

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?

Happy Birthday

You should have turned 51 today. It was not a banner day. I cried all the way to the grocery store. I cried so hard that I couldn't see the road. I composed myself until I discovered that they don't carry Raisinettes at our grocery store, which made me completely come apart. It got better until the cashier made the fatal mistake of asking me if "I found everything I was looking for". More tears.

You should have turned 51 today. I wanted my kids to eat Raisinettes tonight after dinner while I told them about you, about the Uncle they will only know through my stories and memories.

Why didn't you turn 51 today?! Why did I ever let go of your hand after you died?! I didn't WANT to, but, truth be told, I was in uncharted territory. The man from the funeral home was there to take you away and I let go. I shouldn't have. I should have held on.

I should have never let you go.

Clarity

Clarity

I am trying to figure out why I am so incredibly worked up about the situation and I think that, for me, it comes down to the following.

When I was tested for CJD and the genetic markers for it I knew that the test results would change our lives forever if they came back positive. What I did NOT realize at the time, though, is that even a negative result is life-changing. The guilt that follows is incredible and is something that family members carry around daily and wrestle with for years, if not forever.

There is also that Second Chance feeling that occurs, as if the surviving sibling feels like they have an extraordinary obligation to fulfill some Higher Calling, to right the wrongs of the world. I wear no cape and claim no superhuman abilities, but I do feel the overwhelming obligation to make the world right. When I see injustice I cannot stand idly by. It seems physically impossible. It doesn’t even feel like a choice to me. Some may say it is a calling since it is something I have done since childhood, but the intense PUSH to ensure that those who cannot speak for themselves find a voice through me is no longer optional.

Tonight I remembered that day, two years ago, when I got the call from the Dr and heard my test results. I remember thinking that there was nothing that he could say that would make me happy. How could I be happy when I get life and he got death in the Great Cosmic Lottery? Either way it’s a punch in the gut. I cried when he told me. It was The Great Way I Failed Him for the third time. A good sister wouldn’t have let him die in the first place and if she couldn’t have stopped it then she would have at least went with him. As a consolation prize she could have, at the very least, had the disease, too. How could I possibly feel GOOD about that?

I’ll live the rest of my life trying to make it up to him.

I never

I never even considered the idea of living the rest of my life without you. I just never thought it would happen. I thought we would all sit around in our rocking chairs, watching our grandkids playing, talking about the 'good old days'.

It seems like my good days are few and far between since you died.

I miss you. I don't want to live the rest of my life without you, but I don't want to die right now, either which leaves me with no choice but to be here.......still without you.

I still miss you.

two years

I can't believe that it's been two years since you died. Last year I sat and watched the clock at 3am and drank wine and wrote. I think of it as "The Annual Ritual", but really I've only done this for two years now, last year and this one because exactly TWO years ago I was holding your hand while you died. I held onto you until your hand turned cold. I didn't want to let go and I'm sorry that I ever did.