Well, happy anniversary to me! It's been about 6 months since my last major attack. 2 brain surgeries and about 7 other operations later - here I am! I'm still in recovery and probably will be for some time to come. I met with my neuro surgeon and a neurologist last week. All good. They saw my current MRI and gave me a good clean bill of health. No major surgeries needed. Once again they stress that I concentrate on getting better and doing my rehab. Rehab is so important.
I also met with a Buddhist priest. The priest told me how to meditate which has come in very handy. It calms me when I kind of freak out. He wasn't my iconic vision of a Buddhist priest. He looked more like a quarterback for an NFL team, retired or course. But he had some great advice and the meditations he taught me will be very valuable to me.
I've still been feeling very strange. They are tapering me off my medicines. They brought me down 250 ml for a month. I'm now on 1250 keppra and 250 of the depracote. There's been some shift. Not sure what it is. It might be because I'm changing my meds. At least things are changing. For the better, I'm sure.
Just a side note: Here's some more wise wisdom, don't ever ever give a dog 3 day old Chinese food, my dog's been dropping bombs on my legs like there's no tomorrow. I could probably open a methane plant. Now, back to my blog...
My eyes still move erratically and my balance is not good. I've been doing exercises as well as working on my balance. Usually I tell my aids and my therapists what is going on with me and they come up with the exercise to help me get better.
Now, after reading this again, I remember something the neurologist noticed. He said my eye movements, my facial tremors, my palate moving were all related. They looked at my MRI and he said, well look, look at what this guy is dealing with. I had major malformations on my brain stem. So there you have it. The neuro surgeon said it was a very rare condition and that I was special. I think I mentioned that before. I just wanted to remind everyone that I am special. ha ha ha.
I wish I could help out around the house more. I feel like such a burden to everyone. I guess I could do some dishes, but they might be spending more time replacing everything I break. I'm still having a hard time with my hands. Drawing has been a great benefit to me. I also have an art therapist come once a week. We work with clay. I'm thinking about starting guitar lessons. I guess I'll be starting over again.
I remember what the priest said. He said that it's very important to live in the moment. Not the past, not the future, but here and now. I've been finding that very difficult. As I miss my home, my daughter, my dog, my wife and my life on the beach. I'm still amazed that you could have everything you've ever wanted and lose it all in less than a second. It's amazing how fragile everything we love is.
I guess I just want to remind you all how lucky you are and how special everything is. I do miss surfing. It will really clear your head. No need to go off on a tangent like this. A good run in the rain would be nice or a good walk. For now, it will have to be my meditation.
Monday, March 14, 2011
Friday, March 4, 2011
Chapter 5 - March 4, 2011
I'm posting this blog, once again, for anybody out there who might have my same condition (traumatic brain injury). I'm talking to my friend, Julie, who's writing this for me because I can't type yet.
Last week was a difficult week. You know, when you have something like this, you have good days and bad days. I seem to have a bunch of bad days together. Last Monday, I went in to see my neuro-surgeon and the leading neurologists at New York Presbyterian. Before I saw them I had an MRI with contrast (I hate those things). I get so claustrophobic in the long narrow tube they put me in. Just thinking about it gives me claustrophobia. I have to stay still for a total of 20 minutes. I usually try to think about surfing, taking off on a big wave, the big drop. I would never imagine that rush would help me get through moments like that, but it does. So I went off on a bit of a tangent there. Anyway, after meeting with my neurosurgeon first, he was happy to say that the MRI was clean. No need for further surgery at the moment. That made me happy because the last MRI showed I needed to have surgery right away. They only knew that after doing an MRI. This meeting was my follow up to my surgery 6 months ago. My meeting with the neurosurgeon went well. He said to continue my therapy, that my injury was very rare. I'm so special - ha. Therapy is the number one reason I'll get better. I mentioned I was an athlete and I'm used to training so I'll do what they tell me to do. Therapy is so important. There was a moment that was rather humorous. My neurosurgeon, out of nowhere, asked me what I thought about God. I kind of panicked because I thought he was going to give me some bad news. But, the reason why he asked me, was because he's going to write a book on spirituality and recovery. He noticed I had a strong drive to survive, and he asked where it had come from. I think it's my desire to be with my daughter on the beach or maybe it came from my training as an athlete. I don't know. Either way, I would advise anyone in my condition to find that strength or rock to hold on to. You could call it religion or a family member or whatever. But, find something that will get you through all this, through the bad days. I know that some day, I will look back in my infinite wisdom gained from these moments, and think, "Boy that sucked."
I forgot to add this to my previous posting. I forgot to mention my situation for the past few days. I mentioned I had a series of bad days. Once again, I'm posting this message in case it helps someone out there.
It was weird, last week I woke up at about 2 in the morning every night in a panic. I didn't know where I was and I couldn't catch my breath. I guess you could call it an anxiety attack. Luckily my mother was sleeping nearby and heard me call for help. I was so disorientated. I couldn't move my arms or hands. I couldn't roll over. I was trapped in my own body. Would I ever get my body back?
I got the number of a Buddhist priest, a monk. He is going to help me with meditation to get me through moments like this. For the time, I just think about surfing or my daughter's beautiful smile.
Oh yeah, also, they are tapering me off the anti-seizure medicine starting tomorrow. That's great because the medicine has strong side effects. I believe it interferes with my therapy. I know I say it over and over, but you guys have no idea how lucky you are. It's a miracle just to drink a glass of water. If you think you're having a bad day, just look at the blog, or think about what I'm going through. I'll never complain about catering again.
Last week was a difficult week. You know, when you have something like this, you have good days and bad days. I seem to have a bunch of bad days together. Last Monday, I went in to see my neuro-surgeon and the leading neurologists at New York Presbyterian. Before I saw them I had an MRI with contrast (I hate those things). I get so claustrophobic in the long narrow tube they put me in. Just thinking about it gives me claustrophobia. I have to stay still for a total of 20 minutes. I usually try to think about surfing, taking off on a big wave, the big drop. I would never imagine that rush would help me get through moments like that, but it does. So I went off on a bit of a tangent there. Anyway, after meeting with my neurosurgeon first, he was happy to say that the MRI was clean. No need for further surgery at the moment. That made me happy because the last MRI showed I needed to have surgery right away. They only knew that after doing an MRI. This meeting was my follow up to my surgery 6 months ago. My meeting with the neurosurgeon went well. He said to continue my therapy, that my injury was very rare. I'm so special - ha. Therapy is the number one reason I'll get better. I mentioned I was an athlete and I'm used to training so I'll do what they tell me to do. Therapy is so important. There was a moment that was rather humorous. My neurosurgeon, out of nowhere, asked me what I thought about God. I kind of panicked because I thought he was going to give me some bad news. But, the reason why he asked me, was because he's going to write a book on spirituality and recovery. He noticed I had a strong drive to survive, and he asked where it had come from. I think it's my desire to be with my daughter on the beach or maybe it came from my training as an athlete. I don't know. Either way, I would advise anyone in my condition to find that strength or rock to hold on to. You could call it religion or a family member or whatever. But, find something that will get you through all this, through the bad days. I know that some day, I will look back in my infinite wisdom gained from these moments, and think, "Boy that sucked."
I forgot to add this to my previous posting. I forgot to mention my situation for the past few days. I mentioned I had a series of bad days. Once again, I'm posting this message in case it helps someone out there.
It was weird, last week I woke up at about 2 in the morning every night in a panic. I didn't know where I was and I couldn't catch my breath. I guess you could call it an anxiety attack. Luckily my mother was sleeping nearby and heard me call for help. I was so disorientated. I couldn't move my arms or hands. I couldn't roll over. I was trapped in my own body. Would I ever get my body back?
I got the number of a Buddhist priest, a monk. He is going to help me with meditation to get me through moments like this. For the time, I just think about surfing or my daughter's beautiful smile.
Oh yeah, also, they are tapering me off the anti-seizure medicine starting tomorrow. That's great because the medicine has strong side effects. I believe it interferes with my therapy. I know I say it over and over, but you guys have no idea how lucky you are. It's a miracle just to drink a glass of water. If you think you're having a bad day, just look at the blog, or think about what I'm going through. I'll never complain about catering again.
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