I have been getting quite a few emails asking “where are you”, “is everything ok” and so I feel the need to update everyone on what is going on. Right now, I feel like nothing is happening. Every week my body gets weaker and weaker. I struggle with finding a good balance of medications to enjoy some semblance of life and allowing some of the basic functions of my body to function. It is not an easy decision to make.
I was supposed to begin my first carpal tunnel surgery last Friday. It didn’t happen. The surgeon believes that I may have peripheral neuropathy and carpal tunnel. So what is the answer, I asked of my neurologist. He said it is a very delicate one especially in my situation. What I have is turning out to be so rare that it may be another disease altogether besides Behcet’s. It might even be a new disease. There aren’t any doctors rushing to get their name on it because of the potential implications of what the disease might end up producing.
If I don’t get my first hand surgery in the next two weeks, I am going to try and go to the NIH and spend about two weeks up there. I am tired of this cruel path that I am on. October will mark two years in this supposed “flare-up” that I am having. But this doesn’t make sense and is way outside of the normal data for Behcet’s “flare-up” time limits. I have sensory nerves being damaged as we speak whatever this is may also be nibbling on my motor nerves as well. As long as this stays in the peripheral nervous system them I think that I can deal with it. But it is showing small signs of nibbling at my autonomic nervous system. This is bad. This is what controls your vital functions, heart, lungs, all the things that you don’t consciously have to think about to make happen.
Mary has been gone for two days. My folks are in town helping and other neighbors have helped as well keeping the kids active and occupied. But I feel like I am slowly losing my children. I don’t have the consistent strength and ability to watch them by myself. So this means that someone has to be there to help or they go over to a friend’s house. It breaks my heart. I am losing the ability to even be a father, a husband and I am even losing some of the human aspects that I used to have as well. But I still have my spirit and my sense of humor. It keeps me moving forward when others are off on vacation or trying not to think about things they cannot explain. Time at the NIH will do me good. It will bring the minds back into the room again that want to figure this thing out and the ones that have the time to do so.
Tonight, after everyone had gone to bed, I broke down and cried. To keep a strong spirit you must also make sure that it is watered regularly. There is just way too much to hold in. So I found a good spot alone and cried. But I didn’t just cry and think about things as I usually do. This time I said a prayer, a very deep and personal prayer that I was hesitant at first to share. But now I will share my prayer:
Lord, what about the promises that I’ve made to you, and to my wife, and to my children, and to myself and others? What happens to those promises? Are they just forgotten or are they forgiven? I need to know Lord that my life means something more, than what it is. I need to know that through all of this misery and through all of this pain, through all of this hardship and shame, that people will find something beautiful and my family will find peace, and I will find something unimaginable.
I will give every fighting breath to be there for my children. Every fighting breath, I have no choice. I’m scared to be alone, I’m scared. I won’t give up. I never have. But I do need to know that all of this is for something great, is for something unbelievable, for something that will change this world. Because I don’t want to go back to the life I had or the person that I was. I don’t want that lifestyle, I don’t need that money. I just need to know that through this suffering, great things will happen. That is more than money can buy. Money cannot buy change. Money cannot change the hearts of people. It can only mask their decisions for a while. But to truly have a heart change it has to come from a movement, a movement of their soul or their character. Something that moves within them that changes their dignity.
I know I’m not that person to do that. That is not what I am here for. That is your job, to move in people’s lives. So I know what your job is here Lord, but I need to know what my job is for what I am supposed to do. And I would like to take care of my family to have to never suffer want or need, to never have to ask for anything more. To never live in excess, and always give what extra we have and a then little bit more. Lord I ask you, please, deliver me. Andy W. Barwick, 5/23/2010, 1:24am