So I have been missing for a while. I’ve been in a hole if you will. I am hurt, I am down, and I am vulnerable. There I said it. This disease is kicking me even when I beg for mercy lying on the ground. It is a relentless beast, an unforgiving burden. It has taken me away from my family, my friends and what semblance of a life that I had before.
After we sold (lost really) the house in July, we travelled around for a month and a half until we could move into our new place. I thought that the disease progression was just because of the stress of moving and lacking stability, money and control over our lives. But I realize now that we are teetering on being settled in our rental house that it isn’t the stability, money or having control over our lives, at least for me. The disease is unpredictable, except that it is slowly boiling me, slightly above simmer all by itself. If I allow myself to stress in the things that I cannot control then the heat turns up and it is almost like watching someone getting shot with a taser gun, it is just that fast.
In August, I went to the NIH (National Institutes Heath) in Bethesda again for study and treatment. This is my third visit there. This time, my expectations were low. My expectations were met with enthusiasm for a lighter form of chemo that I haven’t tried yet. So a sliver of hope brings bright smiles to the people at the NIH. I have to say that they are tried and true researchers with a heart for curing so many diseases of our time. It is unfortunate that our congress fights with Obama on increasing funding to the NIH. I don’t fully blame Obama, I understand the impossible task he has but I wish sometimes that he would put his foot down and say the hell with war, let’s stop this nonsense and begin to improve the human condition instead of feeding it fear, war, hypocrisy and let’s rebuild the lives that are suffering here. After all As Research!America points out in Four Reasons Why Congress Must Act Now to Support Medical Research, when federal support for research stalls:
1. We lose length and quality of life to disease and disability
2. Health care costs continue to skyrocket without better treatments and without more emphasis on prevention
3. Our economy loses productivity when workers become ill or disabled
4. America begins to lose its leadership in science and the global economy
So many people now are against Healthcare solutions for those that can’t afford it. All that we can see are illegal immigrants, people too lazy to work and people of low income clouding the hospitals and doctor’s offices and putting a further strain on our economy. People miss those that are disabled or that are in my position that have lost everything because of health and because of the costs of continuing to pay for healthcare we will now start down a path we can’t afford. I can’t blame people though from the outside not living what I am going through. I didn’t think about it before but of course I didn’t mind paying more taxes as I reached higher levels of income. I considered it paying for the things around me and making life better. From the inside looking out, I can see how people like me can easily be overlooked. It is because we don’t have a strong voice. It is because we are too weak to topple lobbyist, change the minds of congressmen or voters. We end up losing all dignity and pride, all the strength that we have left to beg for money from those closest to us and even strangers that are willing to stop and give a little here and there to help. Because what we have is not enough unless we help. Now I understand why becoming permanently disabled is considered a death sentence in itself.
Sorry for the rant. I have too much anger, sadness, pain, frustration and a fading hope beating against my chest like a pouring rain in a hurricane. Relentless, painful but it is always there, always present hanging over my head. I was further diagnosed at the NIH with Chronic Progressive Neuro-Behcet’s which is similar to the progression of primary MS from what I have studied. My doctor’s are trying to stop the progression. I have been bed-ridden for so long now that I have lost count of the days. I get the strength to get out every once in a while but most days are spend in bed with pain all over and migraines that make me want to cut out this egg-sized monster I feel in the middle of my forehead. I take countless pills, shots even trying to sleep on body parts that ache so bad to that they will lose circulation and fall asleep. I know it sounds bad. It is much worse, I just can’t explain it poetically or in any way that doesn’t break your spirit. But I wake up every morning hoping that my spirit has either risen or gained strength through the night to fight another day. This week is starting off better because I was so sick last week I had to be taken off of the treatment this week. I know the window is short but for a few days at least I will get some relief.
Sometimes I close my eyes and watch the light shapes dance under my eyelids. Sometimes, I also see old friends and things that I used to do all whirling around almost like looking into a kaleidoscope. It has become my life. I am still fighting to open my eyes free of pain to see the true kaleidoscope of life. I miss it so much. I miss everyone. I am slow at responding but know that I do miss everyone. So keep writing, calling and coming by even if my blogs become slower. At least I have a wife that is such a wonderful writer among so many other things. She needs so much help so please just give what you can to her. Don’t ask, just give. She lives next to the hole that I have found myself in trying to hold the rope tied tightly to my waist. I need to you to help us fight something that no doctor can give prognosis accurately for or willingly other than “grim”, “gray” or “your time here could be several years or in an instant”. I fight for each breath, each moment hold us in your thoughts and prayers as we are travelling in a thick mountain fog.