It isn’t easy to write today or any day now. My Mac Speech writer doesn’t help because the thoughts in my head are scrambled and I am easily confused. Those that have known me before this disease know that this is a major occurrence. Since being further diagnosed with chronic progressive NeuroBehcet’s, I have noticed that the speed of my neurological decline is slowing a little but it is still progressing. Simple though processes burn my head and even make my body do odd things. I pop shots in my legs to kill off building migraines. I have seizures at night that I can control pretty well with medication and I have trouble with asphyxiation from losing control over my core neural components. The list of these is growing and is the most troublesome part of all of this. The peripheral and even some motor neuropathy is difficult to deal with but when the problem moves into the autonomic nervous system the prognosis ties places cement buckets on your feet and throws you in a river. But it fluctuates in odd patterns and hidden pathways.
I have good days still but the bad days seem to rule most of the time. The odd thing is I never know from day-to-day what will be a good day and what will be a bad day. A good day for me is simple, it is a day when I can get out of bed and interact with my family for more than one hour. A bad day has many levels but in the basic description I am bedbound. My sister had a great prayer for me the other day which was that I have more good days in the future. Here is someone that understands what I am going through. It isn’t about a miracle drug or cure, it is about taking things day by day and seeing what the day will be. I have absolutely no control over how my body will react, function or how I will feel if we plan to do something. We always plan to do things when we receive invites because I feel that you can’t predict the bad days so you might as well plan to do something and if you can’t then you can’t.
Amazingly enough this is very different than the life that all of us lead. When you are healthy, you are under an assumption or illusion if you will that everything will work out according to plan. If it doesn’t you try harder to make it right, get it better next time or forget about it all together. But the illusion is that you are in control. Sure we can control certain things in our lives to make things happen. In other words, we can try do make our plans come to fruition. If we have time, we try to help others as well. It is usually the people that don’t have everything going for them that really understand those that are hurting and struggling and try to help out.
Our medical insurance runs out at the end of November 2010. My Medicare insurance doesn’t kick in until after March 2011 and no insurance company will pick me up because of my condition. We have applied for a COBRA extension with Microsoft but at $1,700 a month, we will have to raise money somehow to cover this extreme cost. Friends of ours may be doing a fundraiser in either January or February either here in Atlanta or in Nashville. If we can do it in Nashville then of course we can have some bigger names play for the benefit (not that I care, I love those that did it last year plenty!). It would be good for others to see some of the other talented musicians that we have out there and support them with their music. We may even end up doing both I don’t know yet.
I would like to focus on is making this an annual thing that starts benefiting others besides our family. There are so many other people out there suffering with disease, poverty, being a single mother or father raising a family. Times are really tough for so many people. Thankfully, there are still some people that are sacrificing of their monetary goods cheerfully to help us out and others. My vision is that this will be a benefit in the future that our family will not get a dime for but I would like to host for others every year to start hearing some more positive stories out there and turning bad times into good. Music gives me the illusion of healing because it allows my brain to connect all synapses, both sides with pain, with struggle and with confusion. It gives me the illusion that I am well and that everything will be ok. And I so gladly accept that illusion because the reality that I have been presented with is enough to eat away at the best of us. My condition has no cure, no real treatment plan that works even experimental and it is progressing at a frightening rate. Last year at this time, I could have jogged a few steps and bent over in pain. Now, most days I have to walk with a cane and I am starting to lean heavier on it. Not to mention it seems that I am constantly falling for some reason or another. Which means my next step would be a wheeled walker. I’ll make sure to get some cool rims on it or get a Bentley car symbol put on the front just for kicks. But you don’t have to be a specialist to see where this is going and the rate that it is going at.
I am sorry that this blog entry has been so scattered, so blunt and so depressing in parts. I usually don’t dig into the details of my condition but I feel that those of you following along need to know what I have been holding back and what weakens my spirit. There are still more details that I haven’t shared because they are too personal and would only strain your heart more than necessary. I love so many of the people in our community and my family, friends, neighbors and strangers that have contributed to us in so many ways even if just with a hug or a prayer. Every little bit can help to move this mountain and maybe even make things reverse course. I still have hope although historically speaking no one has ever gone into remission from the point where I stand.
So keep standing with me. Stand with me in the field of lilies and allow God to take care of us as he would have fit. God takes care of the lilies in every way and they do not toil or spin and yet there is no flower in comparison that is greater in quantity, care and distribution around the world. Yet with all of the favor it receives, the lily is one of the smallest of flowers and it hangs its bulbs down almost as a sense of humility or thankfulness to be alive and cared for. And that is what we are, alive and cared for.