Seizures, scrambled brains and a side of mental health.

It's been going on two weeks that I have been having seizures daily. It's frustrating because I don't have time to recover before the next one. Each new seizure brings more 'damage'. It goes away when I have time to recover but I haven't had time to recover. My brains are so scrambled I don't have vocabulary to explain it. I'm clumsy. My timing is off. Time itself is off. Memories are off. Headaches. It's weird. It's frustrating.

The symptoms I am describing are all consistent with seizures. I'm doing everything that can be prescribed but one anti-seizure med but the side-effects are too awful to consider so much so my doctor won't even bring it up. None of them will. It's a last resort and I'm not last resort. I know this is only getting started too. As the tumor on my spine grows the seizures will be become more prevalent and more severe. That's okay. I can handle it.

If this is how it's going to be then so be it. I have a Schwannoma on T2 as result of having had meningitis. The surgery to remove the tumor would leave me a quadriplegic. I can't do that. I'd rather not be than be like that! I know exactly how it would be too. When I had West Nile I also had Guillain-Barre Syndrome. It's the one people are hearing so much about in relation to Covid vaccines. It happens with any vaccine and the cause is unknown. Other triggers happen to be the lucky combination of fun I had going on. But in essence, Guillain-Barre Syndrome destroys the myelin sheath around the nerve leaving the ending exposed. That means pain. And lots of it. Everywhere! I'm on year 9 of this party.

People often tell me they don't know how I am doing this. My answer is that I don't know either. But I do know for certain that I don't want to be paralyzed like I was when I woke up from West Nile. I was paralyzed from the chest down, could not grasp anything and could barely move my arms. I could not stand on my own two feet. When attempting to go to the restroom, I fell off. The nurse came to get me and she got pulled into the fiasco. I felt bad but there was nothing I could do. I was dead weight. She pulled the cord in the bathroom and a second nurse showed up to help. It took both of them. When I got to rehab I could not stand on my own two feet. The work the PT's had me do was brutal. They would ask me if I could do something and my response was always the same, "I don't know but I will give it every I have and we'll find out". In three weeks I walked off that ward. That outcome would not be possible with surgery.

For me, not walking is not an option. I have spent five months in a wheelchair. Some of that time I was in an apartment, separated from my wife, not able to work and alone. I had no help. I was changing bloody bandages using a mirror by my self. I had to get to the grocery by myself. I had to get to outpatient rehab by myself. This doesn't even explain how difficult these things were. I was sweating and crying by the time I got in side with the groceries. It was painful. A crushed pelvis hurts. I ended up signing divorce papers in a wheelchair (we were separated before the wreck - was not a suicide attempt). That was horrible. That was worse than everything else. I went to a divorce recovery group in a wheelchair by myself. Everyone in my life was burned out from spending a month in the hospital to see if I was going to live. At this point they were all mad and tired. I don't blame them. I didn't blame them at the time. I made the decision to ride a motorcycle while separated from my wife with divorce pending. I didn't care. I knew I wasn't in the right frame of mind that day. I did it anyway. I just didn't care. I had given up. I had given up on myself. That's the worst thing anyone can ever do.

I frequently comment that I never give up. I learned my lesson from that one time. I gave up one time. Once. But I was given another chance and I have not squandered the opportunity. I was told I would never was again after the wreck due to my injuries. I did. I was told I would never walk again after West Nile because they just didn't know. I did. I'm not giving up now either. I have chosen to not get the surgery on my spine for many reasons. I don't need to explain them all here but the being paralyzed one is a big one. I'm also tired. I've been fighting since my birth. Literally. I'm tired. It's time to stop beating the horse. I know in my heart that I do not have another come back in me. I know exactly what it takes. It takes everything you have as a human being. You have to dig in places you didn't know existed to find strength. I've done it. I don't have anything left. It takes so much just to get through a day that I honestly don't know how I'll make it until the tumor wins. It's a daily struggle. I do it. I rest then do it again. Rinse and repeat. If I didn't have routines I'd probably fall on my knees and cry. I mean it. I have help from my family, friends and neighbors. Without them I definitely couldn't do it. I wouldn't have the strength to do everything myself. Doing another recovery just isn't in the cards. I know it because I have done it before several times.

As the tumor continues to grow the seizures will increase and increase in severity. Eventually my legs will stop working. Not too long after, organs will decide to leave the party. At the end, my lungs and heart will stop because the nerve signal is cut off from the brain. That is how this is going to go. It's a heck of a thing to know how you are going to die and when. Unless some random act takes me out the tumor will in five years or less. I'm fine with it. I'll be ready for a long nap by then.

I'm not looking for anyone to cry for me. No, I'm a victory story! I had earned an honorary mention in the Darwin awards with a bad decision. Then, I was in the wrong place at the wrong time when I got sick. Life happens. Sometimes twice. I am the luckiest man alive every day of the week and twice on Sunday and I know it. I say that frequently. There is also a dark side and that's called PTSD. Many have seen the letters and have no idea what it's like. I do. I've been subjected to multiple sustained traumatic events in my life. I can tell you EXACTLY what it's like. I cannot forget these events. They roll around in my head each and every day. I can't get them out of my head nor will I ever be able to. When the flashbacks happen it goes like this; it's a slideshow of events and it doesn't stop. Nothing will stop it. It has to run it's course. The only thing I can do is withdraw to my "safe space" and let them do their thing. It can be very disturbing. I can't talk about the things in my life that have added to this. Not on DT. But I will say that it's life. I just happen to get ten lifetimes worth in short order. Most of it came to me. I didn't go looking for it. Some of it I did go and bring on my self. No question. Some of it wasn't fair. Life isn't fair. Some of it was ugly. Real ugly. That's life. All of it scarred me. I didn't want it to. But it did. I wish I could stop thinking about it. That's not how it works. It's a demon that haunts me. It will never go away. I just let it do it's thing and realize that it's over. It already happened. I'm here now. I'm still walkin and talkin. I'm still educated. I still had a hoot and lived while I was young. I did everything I ever wanted and then some. So don't feel bad for me. I'm just sharing for the sake of giving a glimpse into this mess. Life is complex. It's never black or white. It's black AND white. Yin and Yang. You can't enjoy the good times if you don't know what bad is. I do believe I have covered the spectrum and all the way.

That leads me back to seizures. They are here. They are happening more frequently. They are leaving me all mixed up. I may seem out of sorts on DT. I don't know. It's difficult to know when I have even been on. So I hope I haven't offended too many Tribers. I'm just Scrambled.

PS. Had that wreck not happened I wouldn't have been in the location where I contracted West Nile leading to ... you guessed it SEIZURES. Make your decisions wisely, folks. They have consequences.