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.

Farsi

I just met a man who offered to teach me Farsi. When he asked why I want to learn the language I said, "because my brother knew it".


What I didn't tell him is that I want to know how to speak in a language you knew, maybe say what you said. I'm still trying to figure out why you died and this won't do the trick, but it may help me feel closer to you.

Because now that you are gone I feel less and less 'close to you'.


It just doesn't feel like the holidays. I'm knitting a scarf for Dennis and I wish I could make one for you, too.

Doesn't feel like Christmas

The holidays are quickly approaching and it doesn't feel so much like Christmas. It makes me remember the holiday season two years ago when I was running around like a crazy person trying to be "merry and bright" while watching you die.


It is such a strange dichotomy: loving the holidays and feeling so sad because I miss you. I am knitting a scarf for Dennis and wishing I was knitting one for you, too.


It's not the same without you. That Jim-shaped hole in my heart won't ever go away.

Pissed Off Pain

“My heart never knew loneliness until you went away. I’m missing you.”


Adultsiblinggrief.com

On Uptown Girls Dakota Fanning said, “But now you are going to give me Mad Cow Disease and my brain will get eaten away!” Ohgod, it was like a punch to the gut. I felt sick, like I had to throw up. They were making a joke about what killed him and I certainly wasn’t laughing.



There was a commercial on TV recently for Reese’s Peanut Butter Cups. The text read, “It’s like dying and going to heaven……without the pesky death part.”

Uh-huh.


I’m sure that when my brother died he thought, “this is just like eating a peanut butter cup!” fuckers.


Your levity about something so incredibly, excrutiatingly painful just pisses me off. You are a bunch of clueless fucks who sit around in offices making jokes about something that you are not mature enough to handle, so you mock those of us who have actually had to deal with it those of us who have had to face it head on, whether we wanted to or not, whether we were ready or not.


But, it is so goddamned important, isn’t it, that you sell another bottle of shampoo or that you convince more sheeple that some purse with someone’s name on it is important so you mock us, you ridicule our pain, our reality that we live in while you generate your counterfeit reality.

Not an Optimist

I'm watching Michael J. Fox's Adventures of an Incurable Optimist. I'm reminded that he is living with Parkinson Disease, that horrible affliction that we HOPED for for Jim. If he had it he would still be here.

Today is one of those days when I am
EVER
SO
BRUTALLY reminded that a huge chunk of my heart is missing-forever gone.
One of those days when all of the details of his death come rushing back.

It's like this horrible nightmare that I occasionally get a reprieve from, then I wake up screaming into a life I

NEVER EVER WANTED

a life without him.

Surrounded by people, I feel incredibly alone.

I hear someone breathe and I remember the moment he took his last breath.

I look at someone's hand and I remember holding HIS hand as he died.

Everywhere I turn there are painful reminders of a life that included him and now our lives exclude him and that feels wrong

And I Am So Sorry!

Feels Like Loss

L accused me tonight of trying to sabotage her impending inauguration ball trip to Washington by sneezing and coughing all over her! Well, isn’t she just too smart for my own good?! The truth is that if I could knock her down and take her inauguration ticket I would do it in a heartbeat and I actually consider myself a nice person,…..but, I’m not. I would swipe her historic, ground-breaking ticket in a half a second, but that woman watches that ticket like a momma hawk.


I thought the other day about L going to the inauguration and had a sudden sense of impending doom. I suddenly felt like her mother, like she was in danger and I needed to stop her. I thought about how absurd this feeling was, I mean, L has lived in New York City and can likely take care of herself. Then I realized that here we are at January again and it feels like pain and loss and sadness. As happy as I am for her, as much as I wish I could be there WITH her, not instead of her,….it feels like loss even for this one person I met only a few months ago to leave, even just for a weekend. I don’t mean to make it sound like L is my security blanket, not at all. I just don’t want anyone to leave right now


This month


This day

This year


This moment

When the hurt still feels so fresh and raw and bloody. I can still smell the peppermint in his room, I can still feel his skin on mine when I held his hand and rubbed lotion on his arms. I can still hear the TV in the background and my wavering voice singing, “Will the Circle Be Unbroken” to him just before he died. I can still see my tears forming a puddle on the pillow next to his left ear as I heard his heart beat for the last time. I can still feel his chest under my ear, hearing the sound of his beating heart fading into the distance.

I still see that moment, when I pulled the sheet back to look at his legs and I saw his mottled skin and gasped, “ohmygod!” when I came to that sudden halting realization that the last sign had been revealed, that last signal that told us that death was really taking him away.

Life here is okay, just okay without you. I still kinda’ wish that I had grabbed your once strong and mighty shoulders and held onto you as they wheeled you away so I could go, too. I never got to go where you went when I was little, I was always left out. I wish I would have gone with you into death. I miss you so much that it feels like a chunk of me is GONE and I am never going to get that back because it is YOU!

Getting Tested

My neurologist performed the test that would determine whether or not I had the same disease that killed my brother. That conversation was so dramatic it really should have had it’s own soundtrack.

Dr. Smith: “What will you do if you test positive?”

Me: “Die sooner than I had planned.”


I finally received the results after the autopsy report came back. The autopsy report confirmed that it was not genetic. The phone call reporting my negative test result was anti-climactic.


I felt guilty for life; for not having this horrible disease. I keep wondering if I will make the most of what feels like a second chance.

I went to Wichita Falls, Texas to pick him up. I drove him back to Oklahoma City so he could fly out to St. Lous, to stay with our aunt and uncle. He was sitting in his recliner when I walked into his house. Just then, at that very moment, he looked like he had always looked, same color, same eyes, same everything. It wasn’t until he stood up that I could see his now thinner legs, the way they refused to carry him in the old casual manner they had for 40-something years. His movements were jerky, unpredictable. I could tell that he was overstepping where he actually wanted to leave foot falls, but he was just not the boss of his body anymore. In part, I think it was just grateful for any movement they gave him. As we moved out to the car he had to navigate the slope of the front yard. He seemed to fall into the car door. He must have heard me gasp. The next thing I heard from him was an exasperated, almost angry, “I’m OKAY!” I felt bad that I had drawn attention to it, to his inability. He has always been the strongest and most capable in our family. I think that THAT was the shock, suddenly having to look out for him, when he usually looked out for us.

We went to Applebee’s and his hunger had not changed. He ate heartily. We sat across from each other, but I wanted to sit right next to him, to touch his arm because I knew it was coming, we both knew. I listened to him talk. He said, “I’m afraid that Johnathon won’t remember me.” Suddenly, even though I would like to think that I am more enlightened and helpful than this, all of these platitudes swam in my head. “Oh that probably won’t happen. Or “Oh, don’t worry about that”. I couldn’t, in good conscience, do that to him, I couldn’t spout lies or platitudes when this was too important.


I think that that was the moment when I started to really get it, that I was an adult and that the most grown-up thing of my life was going to happen. Jim was going to die and there was not one thing I could do about it. As we walked out of the restaurant people stared. They tried to hide it, but, I think in some ways, we all do it, enlightened or not. No matter how much we want to put ourselves in the shoes of another and “be the better person” you still notice and you still wonder. I was so proud of him at that moment, so happy to be his little sister and to be there with him.
We got settled into the car and I thought about how happy I was to be with him, to be together and wondered how many more of these times we would have left. Would he live to see the new year or could I count on one hand the number of times I would be able to see him and speak to him before he was really gone? As soon as we got onto the Interstate, he was asleep. While he slept I pleaded with G-d. I tried to pray as silently as I could so I wouldn’t wake my brother. I said, “Please, G-d, I will do anything, give up anything, just take it from him and give it to me. There is nothing I can’t do from a wheelchair, but I don’t think he can live his life that way. Please just put it on me! Give it to me!” And, since I had grown up in a church where they seemed to pray for the same thing over and over again, that is what I did. I begged, I pleaded, I sobbed. I thought about what the ramifications of this would mean. I envisioned myself in a wheelchair, never to walk again. I knew what I was saying. I knew that it would make my husband’s life harder, I thought about how it would affect my kids. Toward the end, I even thought about what accommodations we would have to make to the house. I was ready. I looked over at my sleeping brother, his body wracked by this disease that still had no name. I held his hand and said, “G-d, I will take it for him. Please take it out of him and give it to me. Make him whole. I will take it for him, PLEASE!” The tears had long ago started welling up in my tired eyes. Quickly rivers of tears began to fall, dripping from my cheeks as I begged G-d to spare him, please spare my brother.

I became aware of how annoying and pathetic I had become. I didn’t care about anything else, I didn’t care about how I looked or how whiny I sounded. I just wanted this to work. I was afraid only that Jim would hear me and pray the opposite. I wanted him to live, we all did. I know that we were all willing to do anything that could even possibly make that happen. I passed a McDonald’s and there was a small part of me that wanted a milkshake, but I blew it off. I had bigger priorities right now, that of saving my brother’s life. And, still, I only wanted just a taste of one, I didn’t want a whole milk shake. It was an innocent, mundane fleeting thought in an otherwise hellish road trip. I felt tortured by the knowledge that he would die soon. I felt helpless to do anything at all to help him, felt such deep sorrow and sadness that he was facing death. I kept wondering how HE was feeling. Was he scared? Was he angry? Was he resigned to it or did he think he could fight? I keep wondering, to this day and I will probably wonder until the day that I die, what he was feeling, what things he was thinking about, mulling over in his mind. Did he regret leaving his wife? Did he regret marrying her at all? What was he proud of and what were his regrets?
When we got home Kirk came out and said, ‘hello’. I could see it on my husband’s face, the shock of seeing someone who was formerly so strong, now crippled by a disease whose name we still didn’t know. I could see how he wanted to take care of him, but wanted to run away at the same time. I felt the same way, actually. I wanted to see the Old Jim back and heal this new one. I wanted him to be okay. After he ate (again!) I told him about the milkshake and how I “only wanted a shotglass full”. He laughed and said that he would have split one with me. He laughed again and said, “can you see the look on the face of the person at the drive-thru when you tell them you only want a sample?” It was so good to see him laugh. I showed him the medical textbook I bought at the library booksale for $1. I told him how when I told Cheryl about it she had said, “all the doctors that have seen him and you think you are going to swoop in with your one dollar textbook and crack the case?!” Jim replied, “wouldn’t it be cool if you did, though?!” He and I stayed up way too late that night reading my Physiology notes, the Physiology Coloring Book and The Textbook of Primary Care Medicine. We looked up every neurological disease we could find. But, we missed the one he actually had.

When I found the specifics for Amyotrophic Lateral Sclerosis (ALS, known as Lou Gherig's Disease) I thought that was it. I started to cry because the prognosis only gave him 5 years. I cried myself to sleep that night, angry and sad that I would only have five years left with him.


A month after the funeral I remembered that night and how I had mourned "only five years" and I thought about how that thing you fear becomes the very thing you wish for.

mon frère meurt

On more than one occasion I have accused my mother of adopting me and never telling me the truth. I am convinced that I must be from somewhere else. Of someone else. I do not belong, that much is clear and, as I get older, it has become acceptable.

As I watched him die, during those excruciating days and sorrowful nights, those words frere and mort flitted through my hurting heart. Even in a language I love he was still dying and even French couldn’t make it beautiful. I allowed myself the familiar sojourn into conjugating those painful sentences, however badly.
I would go back to Linda’s house, sink into her huge comfortable bed and sleep fitfully, dreaming that no one was sick, not in any language and that we were together again. In my dreams I would hear and only partially understand French, but I knew that whatever they were saying, whatever we were saying, it didn’t involve him dying. I felt that familiar language wrap around me like a sweater, warm, comforting, satisfying.

I am beginning to realize, just now, over a half-year later, that there was no depth to my soul prior to his illness. What I thought was deep was not.

It was all a lie.

I have now gone to such a place that I never even conceived, never wanted to know. The word ‘sub-depths’ comes to mind. It is as if I have uncovered, and still discover daily, the crypts, the untouched tombs of my soul. The places I never knew, I am just meeting, shaking hands with, encountering. Mme Mazuet told me that I could enter the Foreign Language contest that they hold each Spring. The funny thing is that there are poems, stories and prose in this language that I don’t even know. I don’t know how to tell them yet, I don’t know how to get them out because I don’t have all of the language. I don’t know how to say it.

When you became a 'was'

I was reading some old blog posts of mine today and I noted that on December 22, 2007 I wrote about my brother. At that time he was still alive and I referred to him in the present tense. (He is 47 years old. He is a strong man.) It seemed almost immediate for us all to begin to relate to him in the past tense. (He was only 47 years old. He was like a mighty oak cut down too early.)

It is instantaneous, that transition. I have noticed it at work, too. When a patient dies they IMMEDIATELY switch from “Mr. Smith” to “the body” as if their humanity left in that last single heartbeat. The weird and inescapable truth about it, though is this: I was there when his humanity left and to me he is still as real as he ever was. I don’t care how dead you are, you are still my brother. I don’t care if you died or not, I can still love you.

My heart physically hurts since you left. I have this phrase that I use, “you’ll see a Cyndi-shaped hole in the door” to indicate that cartoonish opening in a door that an animated character inevitably uses to exit a scene. It seems to me that there is a Jim-shaped hole in my heart, a perfect puzzle piece in the shape of him.

While I watched you die I held my breath, thinking that maybe I could give some of mine to you. I’m so sorry that it didn’t work. It will be the most profound failure of my life that I wasn’t able to save you.

When Does Denial End?

Yesterday I thought about how maybe Jim never died, maybe he never retired from the Air Force. Maybe he became OSI and has been working undercover, only posing as a contractor. Maybe he is on some special assignment somewhere and he is about to return and the assignment was classified and that is why he couldn't tell Tracy or mom or me where he was going.


Yeah, that is it.


Then, as these crazy thoughts were going through my head a parallel thought process was arguing. "No, you watched him die". "You watched him get sicker and sicker". "He is dead, remember?"


"He will never come back".

Funeral Wrong Denial

Last night I was thinking about the funeral and everyone who was in attendance. I thought about how I should contact everyone who was there and apologize to them for setting up that whole affair when he never really died. I thought about how angry Jim would be if he knew that I held a funeral for him when he didn’t actually die. I wondered if he would ever speak to me again. I felt bad for Tracy knowing that he would be mad at her, too because she actually paid for it. (or his life insurance did, I guess.) I felt so confused by this strange realization for a split second then I remembered that the funeral home wouldn’t have had a funeral if someone didn’t really die. Then I felt so stupid for momentarily believing that it never happened. The thing is, these flashes of disbelief seem to happen every single day. Does this mean that I’m crazy? Why can’t I just believe it?

I saw him die.
I held his hand while he was taking his last breaths, so why doesn’t it seem real?
I laid my head on his chest and heard nothing.
No heartbeat.
No respirations.
Nothing.
Why can’t I believe it? I held his lifeless hands while they were still warm.
Why can’t I believe it?

I’m really not a stupid person, so why can’t I wrap my brain around this concept? Maybe it is that I can’t wrap my heart around this concept because it hurts too much.


What if we scrapbooked real life? I mean, the everyday shit that really happens, but no one wants a picture of.

Dad yelling because the kids won’t leave his tools alone,

Grandma running to her room to get away from the toddler noise,

Mom lying in the tub, water up to her eyebrows staring into space remembering that moment when she met Death and shook His hand as He came to carry her brother away,

Some things you just don’t want to commemorate with film, I guess. And, really, who wants a f*cking sticker and die-cut of death, anyway?



I’m pissed off. I jerked my arm out to start typing then pulled it back, as if I had been burned. I am afraid to let all of this out. I’m afraid to let these feelings come to the surface. They scare me. I was scared when I watched him die. I felt like a failure because I didn’t save him and even more of a failure because I couldn’t. All I did was sit there and hold his hand. Three’s Company was playing on the TV and the smell of peppermint oil and sweat hung in the air. When I realized that he wasn’t breathing anymore and that they were going to pronounce him dead, a crazy thought popped into my head. I thought of lying next to him and just hanging on and never letting go.

“Just bury me, too.”

Why Doesn't He Call?

I still feel like a liar every. single. time I say that he died. This internal monologue takes so much of my heart away each time.
He died,
no he didn't.
I think he is just not talking to me right now, he hasn't called me in months,
I havn't heard from him, is he okay?
He must be on some job in another state,
but he would have at least called Mom.
Where is he?
Why doesn't he call?
Because he's dead.
He is dead.
Don't you remember? You watched him die. You watched his last breath escape from his lips. You laid your head on his chest and heard nothing, no air, no breath. You held his hands until they turned cold. You kept petting his arm, like you could make the circulation return, like if you were a good sister you would just BRING HIM BACK!!!

First Post. We are finally here!

I have been thinking about setting this up for about a week now to get this content off of my other blog. I have so many journal entries, poems, etc that I wanted to organize in one place. My hope for this blog is not for it to be a sad place, but a spot for me to drop off the memories that keep flooding back. I want it all written down for his son he left behind.