Friday, September 12, 2008

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.

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.

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.