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.
Friday, September 12, 2008
Tuesday, September 9, 2008
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.
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.
Monday, September 1, 2008
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.
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.
Saturday, April 19, 2008
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.
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".
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".
Tuesday, March 18, 2008
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.”
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!!!
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!!!
Saturday, March 1, 2008
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.
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