“If I died today, I wonder what you’d say. Would you criticize my life, or smile and wave goodbye? If I died today, would you be afraid? Would you be thankful for our time or would you hang your head and cry” Fade Away by Black Stone Cherry.
Life gives us some rotten hands sometimes. I always sit back and reflect that each time I have a seizure that God handed me a 2 and a 7 off suited. If you play Texas Hold’em, you know that is the worst possible to hand to be dealt. Right now, I am dealing with some new developments that weigh each decision that I do in this situation of trying to decide how my life is going to play out. Each day is an uphill struggle. Let me give you the update on where I am at now.
On the last few days of December, I had to check myself into the emergency room for having one of the worst attacks that I have had. I almost took out a little Christmas tree that was sitting in my bedroom at the time. I was just allowed to lay there as the roommates I had heard the thud, but were too involved in their own lives to really know what was going on. Instead of having someone that I thought was special in my life take me, I decided to walk to the ER. The spot that I lived was over four miles. I decided to brave the sub-freezing temperatures and try to go on my own. Along the way, I could honestly feel my body start to give out beneath me and that would be more than once. After a walk that took almost four hours to make, and hitting the ground more than once. I made it to the emergency room. One thing, that is hard for me to do when I am having a spell. I am not able to talk. I start to stutter. I have had many people in my life say this is one of the hardest things to ever be around, especially difficult when the words you are trying to say is “I will be Ok and I love You.” The only thing that usually is able to come out is I. That being said, I was stuttering to the woman at the emergency room. I could hardly get the words out. I could see that she knew something was going on. I was admitted and treated until the neurologist was able to show up.
I believe in the last #TheJourney, I told the success rate of having the surgery. 20% being able to walk after the procedure is done is not the best numbers. I broke down and was able to tell the neurologist how my condition was destroying the very foundation of everyday life. I have been told that I should never drive. I have been told that if I do, that not only could I kill myself, but everyone in my path around me. That is something that I do not want on my mind for the rest of my life. However, telling people seems to be the death nail in trying to have a relationship with them. I was telling the neurologist my situation. I was breaking down on him in just having a conversation. I do not care who you are, or how big you are, if you talk about the things in life that you have lost, it will get to you. The worst part is knowing that you have no control over the situation. We talked about what the surgery could do and how it could play a role in my life. That moment is when I decided to see what happens to the idea at least.
This is where we are. I just recently have my first visit with a psychologist over the idea of I could function if I were to become paralyzed. I know one thing, I feel like a burden in life at times. If you ever had a point in your life where you had to rely on others for everything, you know exactly what I mean. If I have to go to the store, I have to call someone. If want to just do the simple things in life, I have to hope that someone will say yes, or I am stuck at home for the rest of eternity. The man and I spoke candidly for hours about life and the many struggles that have had to come with it. The last few years, the last few months, even the last few days, have been talked about. He flat out told me that I am looking at this surgery from a point of view for all the wrong reasons.
Funny thing, my reasoning for going through with this is to try to make my life special again. I want to be able to know that someone is actually going to be able to be around me for a longer period of time than 6 months. I want to be able to hear that what I am going through will make me a terrible Father because no woman in her right mind would leave their child with me. I am not sure if some of you know how that feels to be told by someone you think loves you, but damn it is a shot right through the heart. I just want to be able for someone to love me and not have to worry about how I am feeling. Fair enough reasons, at least in my mind.
He believes that I would be doing this for everyone else but not the person that matters. Me. I am putting others opinions of me, before what I think of me. I remember one of my doctors telling me that if I could live with this for the rest of my life, I may not be able to do a lot of things that a “normal” person could do but I would still be happy. Being paralyzed is something that if you asked me four years ago could happen. I wouldn’t even think about it.
The evaluation, went well. He said he was not going to stop me, but he wanted to put me through a test before we moved on with the #TheJourney. Could I live my life for a few days living in a wheel chair? He wants me to experience what it would be like to be paralyzed. I am not sure how well this experiment is going to go, but it is the next step in a long journey.
I did have one wrench thrown into my decision to make. I have talked to one of the only three surgeons in the country that can perform the operation to remove the tumor like knot. They have all my information and x-rays of the location and size. There is a possibility that removal could leave me brain dead. Paralyzed is one thing, but been pretty much knocking on death’s door is another. It is something that has been weighing on the heart for a few weeks now.
I have to say that each day I wake up is a blessing. I am not taking life for granted at all. #TheJourney continues with a life in a wheelchair, but the debate between heart and mind will continue on until I know something concrete.