As I sit here at my kitchen table looking out across the mountains that are covered with the newly fallen snow, I am taken back by the beauty that surrounds me each and every single day. I think most of us do that without even realizing it. Our surroundings become our norm and we tend to go about our lives with a single mission. Just get through this day.
I thought about not writing this blog today. Sometimes I think that all I’m doing is venting my penned up frustration at the situation that I’m in. And then I think that if I don’t write today than it is one less chance I get to express my inner most thoughts and prayers for my family. The other day I wrote about having an expiration date of my life. Someone asked me what I meant by that and I was forced to step back and really think about what I did mean by it. After all, I am only 48 years old. Well, in many respects I find it is a gift to know in advance of how this is going to play out. I am able to plan special times that I can have with my family. I am able to help plan my end of life wishes. I was able to pick out our cemetery stone, and that was important to me. I am able to write letters to my kids and grandkids. To me, all of this is a gift.
There are small things associated with this diagnosis like forgetting how to spell. I have always been really good at spelling and have always proofread my kids papers as well as my wife’s college papers. I have always been really sharp with numbers and been able to recall license plate numbers at the drop of a hat. I could spit out a thirteen digit part number on a piece of machinery and where it was in inventory without ever having to look it up. Once I had the number I never forgot it. Looking back now it makes sense to me as to the forgetfulness that started to come on occasion, maybe two or three times a week. Over the period of about a year I was forgetting more often and it was now a real concern for not only me and my family, but more importantly, my employers. I was in complete denial and still am to some degree. I know that I want to stop thinking about it all the time. One of the biggest frustrations is that I’m not able to get past this until I can stop fighting for disability. I almost feel like I am doing something wrong by simply applying. I didn’t ask for this, and for the state to make me go through almost two years of political red tape has been worse than the diagnosis itself. Initially they told me that the average life expectancy after diagnosis is 7-10 years, and I have already wasted two of those years fighting for some form of compensation that they are making me feel like I don’t deserve. I’m frustrated. We have borrowed so much money from family to try and stay on top and have no savings anymore. I’m tired. No one should have to go through this regardless if they are 48 or 108 years old. I would give anything to go back to work, for things to be like they used to be.
The day that I was told that the MRI showed I had dead spots in my brain, I was confused as to what that meant. I thought I felt the same. I mean, I never felt any sudden interference in my brain function, at least not that I could remember. But, I had noticed that it took me longer to come to a conclusion, and that I often forgot what I was on my way to do. I was constantly retracing my steps to jog my memory as to what I was doing. My doctor told me that what was happening was that the normal path that the thought used to take in my brain was dead or dying. A new route needed to be completely reprogramed in my brain and that sometimes took a while. I also had trouble with word retrieval. I was starting to stutter, and this was completely new to me.
After seventeen years of service for a company in town I was fired. Absolutely no notice. These people were like family to me and it hurt. To this day I have only seen or talked to two people at the company, and that was small talk not relating to why I was gone, and that hurts. These people were my friends and not one of them came to see me and ask about what was going on, and that still hurts. I know that I need to get past it. I don’t want to waste more time worrying about something that I have no control over, but I was sick. My brain was getting worse, I didn’t know it, and they didn’t and don’t care. It is what it is. I need to move forward.
There has been an outpouring of support in my community and for that I am certainly grateful. My church family has been so supportive in many different ways and I know that without them I don’t know where I would be. People drop off food at my front door, anonymous gift cards in the mail, checks in the mail and visits from friends and friends of friends. Other churches taking up collections for us, people they don’t even know. The genuine goodness in people is pouring out on a small house on a hill in a very small town in Maine. I know that no matter how hard I try to say thank you, it will never be enough. That genuine goodness is not for just me, it is for my wife and kids as well, and I know it.