Sunday, April 11, 2010

One Of Five

Ashley and I were talking about my numbness the other day and I realized something. I forget what it's like to feel anything. I'm pretty sure that's how I learned to cope with it, I had no hope that it would come back so my brain let go of those memories, I think. We are all talking about feeling this feeling that and I honestly don't know what is going to happen when I feel (obviously I can't feel still). Ashley and I have had quite a couple conversations about everything that has happened and he's fascinated by it. I don't know how many of you know this, but if I close my eyes I can't hold myself up. My vision is all that I have. Ash and Raven had been told this, but they didn't REALLY know until Dr. Shroff one day asked me to focus really hard and train my cells then close my eyes and I collapsed into Raven. Dr. Shroff and I both expected it, but no one else in the room did. It's one of those things that no matter how many times you may say it, you don't get it until it happens.

The fated Lumbar Puncture. The Lumbar Puncture is the one procedure where the stem cells actually get injected INTO the spinal cord. With the Lumbar Puncture you usually get headaches, nausea, hallucinations (sometimes), and you feel like crap for a couple days. I have had my foot firmly on the ground saying I will not do it and no one gets why. Tonight I sat down with Dr. Sudeep and he explained to me why they want to do the Lumbar, and I told him why I wouldn't do it. It has nothing to do with the headaches or things like that. It has nothing to do with my past trauma with Lumbar Punctures. It has nothing to do with the fact I don't trust Dr. Ashish, I trust him with my life. It solely has to do with the fact I am afraid. I'm afraid I will lose the one thing I have left, my vision. To everyone else it might seem I have a lot else to lose, but my vision is how I live, you take that away and I am dead weight. I can't move at all, I would be a breathing blob (if you can imagine). My vision has been badly affected through everything and a procedure last trip made it even worse, and if that were to happen again, I would pretty much be blind. A description of what everything looks like through my eyes: blurry blobs, that are double (side by side), the one on the left is the real one, if you scan something enough I can make out bits and pieces of it. When I was explaining this to Dr. Sudeep I started crying, I didn't mean to it just kind of happened, I'm doing it again right now because I wouldn't be able to do ANYTHING without my vision and I don't know how to explain it to people to where they understand.

Ashley, Raven, my Mom, and I went out to dinner tonight, and we had talked to Dr. Sudeep while waiting for a taxi to pick us up. Ash heard most of the conversation between Dr. Sudeep and I, but he was also trying to organize a taxi to pick us up and wanted to give me privacy. When we piled into the car (I had to sit in my Mom's lap in the backseat behind Ash and Raven was in the middle holding Ash's wheelchair) I had my head between the window and Ash's head rest thinking about everything Dr. Sudeep and I had just talked about the whole way to the restaurant. At the restaurant I apologized for crying earlier and Ashley looked over and said "I wasn't trying to eavesdrop or anything, but I heard what you were saying and now I really get it, your vision is everything to you, it's all you have. You can't lose it. Without it you would have ... nothing." It was like someone else finally got what I have been trying to say, and I think Dr. Sudeep understood too. For now the fate of this procedure lies in my hands, it's up to me if I do it or not. I got a lot to think about.

P.S. Ashley goes in for the Lumbar Puncture tomorrow afternoon. Send positive thoughts and hope everything goes well! I have my fingers crossed.