My mind is blanketed in a fog these days. I don't write much anymore, definitely not in blog form. I write in my personal journal that isn't meant for eyes other than mine. It is a journal of the bad stuff, the uncertainty, all the stuff unproven and the paranoia that flows through the pathways of my brain.
I write today because I am at a turning point. Not a turning point up, down, sideways or what have you, but a changing point would probably be a better way of explaining it. Most of you know by now that when I don't write that something bad is happening. That is actually short of the truth. Something so indescribable is happening that is has taken me months to gather the courage, the wherewith-all, the words to explain what is going on.
Several months ago, the NIH released me from their Behcet's protocol simply on mutual agreement that there is nothing more that they can do for me. They also have run every test in the book and can't find answers to fit me into the NeuroBehcet's diagnosis anymore. So now we step back and find another path. We don't start over again because we have enough information to get us in another direction, it just isn't a direction we want to go. The NIH wants me to see a geneticist but that is where you go when you are looking to help the generations that follow you, not yourself. There will be a time for that, a time to make sure that my children don't follow my path disease wise, but that time is not now. I was also turned downed by the Johns Hopkins Pain Clinic because they don't believe they can help me. This makes a long list of facilities that have closed their door to try and help. Probably for the best anyway at this point in my life. I have been concentrating for too long on what ailes me, not what I have to live for.
I am caught between a place that is quite simply tearing my soul apart. My mind and my gut know what is happening and what is going to happen. My heart will not accept anything but survival and being there for my wife and my children. It honestly will take the stopping of my heart for that to change. Certain truths have been exposed over the past months of how I have evidence of a neurodegenerative disease. Which one really doesn't matter. They are all bad, they are all too short on the prognosis end and most of all my heart won't allow me to accept these simple truths. Even if the doctors come back from testing from the past week and give me simple, hard evidence that the angel of death is coming soon, his name is Bob, he has a calm disposition and is ready for you, my heart will not accept it. If they come back with nothing new, my mind and my gut know what the inevitable is and it is coming faster and faster. It is a constant tug of war.
I feel like George Clooney in that movie "The Descendants" when people come and talk to me about my current condition. In the movie, friends and family would tell George how strong his catatonic wife was and that she would pull through this. After all, she was strong in life and that meant that she would be strong in fighting death. George would just nod his head and stare off to the side. He had already been told by the doctors that his wife was brain dead and would be taken off the respirator per her living will. She was going to die it was just a matter of time. He waited some time before he let everyone know the truth. Not because he didn't believe it, he just needed time to pull himself together. Don't pull out your jump to conclusions mat yet, I am not about to die, just new types of suffering beyond comprehension and new diagnosis' of more disorders and the tragically unexplainable.
So I have been pulling myself together, falling apart a little, and pulling myself together a little bit more. No one has told me that death is imminent or that I have a "for certain" amount of time. One doctor has been brave enough to change my perspective on things and this has me trying to pull myself together enough to continue on my journey, my purpose have you and start putting this diagnosis and treatment stuff on the back burner. No, I am not giving up. I will never, ever give up no matter how bleak, stark or dark the situation. My heart just wasn't made that way. I am no hero looking for accolades for fighting the good fight and not giving up. I am a father, a husband, a friend and a welcoming stranger trying to make a lasting difference. Sometimes a difference that to me is so very small that it doesn't seem worth the effort. That is, until I get an email, a kind word or just a smile from someone that was touched by whatever it was that I did. It is that human interaction that we all crave that you absolutely become almost a zombie for. We walk around with outstretched arms wanting love and compassion while at the same time we scare the crap out of those around us.
So, I take a moment to put my arms down and act human. That sounds funny even as I type it. Act human. It is an act sometimes. Most days I feel like a caterpillar that can't make a cocoon and thus transform into what he wants, what he thinks he needs to be. I feel alien, like this thing that lays in bed all day that shakes like one of those old hotel beds that you used to put quarters in. It really didn't feel good but you did it because it was something different, a novelty. My kids come by and they love on me and remind me of my craving for humanity, touch and why I want to be on this earth. Just as quickly they are dashing down the stairs and they are running outside to play with their friends. When they were younger, I would make them leave my side to go play. They were over responsible for my happiness and wouldn't leave my side. I wanted them to have as much of a normal childhood as possible. And they do, somehow. These amazing kids possess the strength and the grace to love something that scares other kids. Not only love but fully embrace something that probably scares them a little too. Most nights the kids want to sleep with me but I have to sleep by myself. My seizures at night can be pretty violent and I can't sleep if they are in the bed. I still try to protect them even when I can barely keep my eyes open. But it only takes a few of the quick violent jerks to remind me that I have to get them into bed with their mother so that I don't accidentally flail and hit them when I go into a seizure. I'm not sure how many i'm having at this point even with the heavy meds, but I know just by how sore I feel in the morning how bad the night before was. Those things are scary but at least I'm unconscious when they occur. My wife and an EEG are the only witnesses to their existence. Oh and of course my four year old who woke me up one morning and asked, "Dad, why are you shaking?". I told her because that's what daddy's do sometime. She's satisfied with simple answers, add a fraction more and the "why" starts coming out. I don't even have an adult answer for that one.
Last Saturday when I was coming back from Atlanta from neuro testing, I experienced something that scared me more than anything has ever before. The only way that I can describe it was like a waking seizure with severe tremors in between. I know that you can't have a seizure of that magnitude and maintain consciousness, but that is what it was like. The doctor at the hospital had never seen anything like it, neither had the EMT's. We were all baffled. Even in my best physical shape there was no way I could have even faked something like that. My wrists had turned in so violently that they were bruised down my forearms, and I don't bruise easily. So could it just be me breaking down, completely, mentally? Which is what goes through your head and the doctor's when something like that happens that can't be explained. My neuro back home quickly said that it was a severe movement disorder but did not elaborate as to which one. If you google these things it scares you because you see early onset Parkinsonism and Huntington's chorea. Keep googling and you just get confused and scared. So I turn to YouTube, the "visual scare the crap out of you service" from Google, and well I can't find anything that exactly matches what happened to me. I would have to combine the two worse things I saw and be conscious to imitate it. So I digress and hope that it doesn't happen again. But it will, as everything else in this tearing down and rebuilding process. The monster wouldn't be complete without a few more freak show attractions. It turned out to be what are called pseudo-seizures that were so violent and lasted so long that it put me into status epilepticus. This is a very dangerous place and luckily the hospital wasn't too far away for the EMT's to give me a shot of "calming medicine" to stop convulsing violently, calmly and then sit and wait. Fortunately the first round worked but left me scared to death of the future. For the first time, I am truly scared that my heart and my will may lose this one.
I would let it go as a one time thing if it wasn't how heavy these types of disorder's run in my genes and my bloodline. Parkinson's is pretty much a given at some point in my life because of how many people have it in my family. If it isn't something I was born with, it is something possibly acquired. I grew up in a mill town where these flakes would fall from the sky every time the mill would blow out the pipes. We called it "southern snow". But from the rates of cancer and so many terrible diseases in my hometown, I think the snow was more like acid. We should have known better but at the time and even to this day the mill feeds the town and you don't bite the hand that feeds you even if you are fed a little arsenic here and there. If it wasn't that, there was growing up near the family farm. Cow's have nasty diseases they can pass on and so can all the crop-dusting that was done in the early 70's. DDT was used early on not only to kill Vietnamese but also pesky crop insects. We should have known better but again, the whole hand that feeds you thing.
So I have been exposed to so many things in my lifetime and generations before me that I am almost assured to be neurologically damned at this point. The label doesn't matter, because the treatments are all the same and there is no cure. How fast you die is a combination of how well you can avoid stress from here until then and God's timing. Avoiding stress when you have no money, owe a fortune in medical debt and are trying to maintain a responsible existence is impossible. So you have bad days, you have days where you eat out when you should have eaten a sandwich at home and you get little things here and there just to remind yourself that you are human and not trapped inside this relentless storm. Our biggest stressor is financial, but if you gave me a million dollars, I would pay off bills and then travel around helping others with the rest. So you would end up having to give me more later if I survived.
Money doesn't mean anything to me anymore and I'm sad that I spent so many of my years chasing it and that stupid, selfish "American Dream". It took this drastic of a turn in my life to change my instinct to provide for my family, have our own big house and be self-sufficient and seen as successful. I'm pretty stubborn. God knew that he had to take both my mind and my body away so that I could fully see what is wrong with the path we all are on. If given even an inch, I would have found a way to make money for my family and survive. As is, I cannot and I have had to completely let it go. So if you send money, it will go to pay off debt but also to help others. I have neither the need nor the time to hoard cash. For me it is obvious, for everyone else, you may not see it until it is too late.
So let my suffering be an example that the best thing to do is to give and help others until you have nothing left but what you need to live on. It is only then that you will see what it is you worship the most. For me it was money. I chased it, coveted it, made it, gave a little and then had every last cent taken from me. I was a good steward by today's standards but not by what I know now. For those in which much is entrusted, you must pass that on to help others. Not because they deserve it, not because you have to but because that is what is needed for humanity to survive. Giving and helping one another completely and selflessly is the fabric that holds us all together. It is the essence of God in which we need look no further than the person next to you to see.
I now understand the parable that Jesus taught about a rich man getting into heaven. He said it was easier for a camel to pass through the eye of a needle than for the rich man to get into heaven. I always thought that it was because the camel was too big and had too much so he needed to give everything away in order to "fit" through the eye of the needle. That wasn't it at all. Jesus plainly meant that his focus was on making money and his wealth and not on helping and serving others and finding the true meaning of who God is. It has nothing to do with the size of the camel or the size of the eye of the needle. It has everything to do with who is your God. If money is the focus of your life, then that is your God. It doesn't take a rich man to be that. If being of service to others and doing whatever you can to help others is your focus, then it doesn't matter how much you have, you are the fabric that is needed to mend this universe if only for that space in time. You are the fabric that helps sew the universe back together where it is torn. The needle is not a measure of your means, but a measure of your willingness and commitment to help others. I have found this wisdom in that process, and in that process I keep finding who and what God really is. In any other pursuit, you will find emptiness. Some people can't be wealthy and keep that focus. I know that I am one of those people. God graciously took everything from me so that I could see this and so that I could share this with others without them having to go through the suffering to learn this. You can do this gradually, just do it wisely. Like my friend Amy says when I get on her about being too generous to us, she says "we can always make more silly!". That is someone that gets it. Her and her husband not only give to others but they get involved in people's lives and love people like family. While their donations of money are wonderful, I remember their love and their time spent listening and caring the most. I wouldn't trade their kindness to others and to us for a cure. That is how much of an impact they have on me and now this world.
And now I end on this final note. In the recent weeks, I have been diagnosed and begun treatment for Myoclonic Epilepsy. I also have been diagnosed with an unknown movement disorder. Both of these mean that my brain is being substantially affected by whatever is going on. If it isn't violent seizures at night, it is sitting around with rhythmic tremors while resting. Parkinson's runs heavily in my family and I carry the gene for it. It would be quite early for that to be diagnosed (which is not the case yet) but it would make some sense. The Epilepsy makes no sense and the medication I have been taking isn't stopping the seizures. This is a bit worrisome because of the huge unknowns when dealing with seizures of unknown cause especially when they are progressing at a frightening rate. All that I can do is try my best to control stress, keep my mind off of what is going on, get plenty of rest and start doing the things that I have wanted to do before it gets possibly too late.
It may turn out that I have many years left or it may not. The important thing now is not concentrating and worrying about what tomorrow may bring, it is important for me to get busy trying to do the good things that I have tabled for so long while chasing answers to my spiraling health crisis, and prior to that chasing my American dream. It is my nature to want to know what is going on and to want to know if we are missing something treatable. But this too has to be broken and surrendered. None of us know how much time we have left in this world. When you are sick and suffering, it is ever-present in your mind. When things are going well, it is the furtherest thing from your mind. So take this from me today if you don't take away anything else; start now with what good things you want to do before you die. Don't make it a check list for later, start now. Start slowly or go all-in but just start. Your perspective of the world will change drastically when your focus is no longer on money, retirement, the dream of success or living the easy life. Your eyes will open to the suffering all around you and you will have to make a choice, a very hard choice. Are you in, or are you waiting this round out.
