Three years later

 In the season of eternal status, where spring would always give way to summer in the most predictable ways, as it was in the 1920s, the 40s, the 60s, and here today in 78, it did not seem to change. I got off the bus that came down the hill every day, and I knew what to expect. 

The summer pressed on. Inside of me however an awakening was underway. I could tell that behind the summer music, things were never going to be the same. A bouncy and complex jazz run had laced the airwaves and it boasted sharpness. There were signs that time was moving, which also meant that changes were in the wind. 

The late summer movies gave way to the atmosphere of the fall background. The smell of new clothing, and paper, and the hum of fluorescent lights overhead in a building constructed in 1906 gave way to gravity that could never be denied. In a moment you can learn so much about yourself. 

As the leaves changed color, we were mobile again for the first time in two years. The freedom brought about uncertainty. As I look back on this, I realize that this was a small example of a phobia that could return to me in 1991 and in 2022. Sometimes it takes a long time to find the answers to your questions.

I woke up, and things were new. I was new. I was in control now. I was viable and it was great and weird at the same time. In only 4 seasons such as this one, things would be more different than anyone, anywhere could ever imagine.

Three years later, we are on the 36-month merry-go-round. Everything always looks the same. But somewhere on the piano keys in the smoke-filled VFW hall, the player makes a fatal slip of the hand, and a wrong note echoes off into the night. With that, there is a shockwave promising change we did not see coming or even could have imagined. It will look like freedom for sure. It will write books and songs and people will be born. But it is not freedom, it is worse than death, and we will live to regret it.

Three years after this, on a subzero morning, reality is stifled for a moment and my brain even paints what I think I should see. Suddenly, the parachute opens and tears me back from my manufactured vision, forcing me to see how unfair the world is. Innocence notwithstanding, crushed you will be whether you deserve it or not. There it is, my ride is here.

The bridges of the Intercoastal Waterway slap the tires in rhythm with the music and the hot summer breeze. Everything is different. There is sand in my bed and sand in my dreams. There will never be a feeling like the one I feel now. Never. Here there will be nothing but bridges and they are everywhere. I would never trade this for anything. 

And then three years later, the sun rises over the severity of the Adirondacks and I see it as if it were my first time ever. I start the days slowly, resuming what the bitter cold day took from me back in 84, but soon, my impulse takes over and I am living nothing short of an action thriller, that sometimes I lose minutes or even hours of understanding about where I am or what I am doing.

Raw survival instinct kicks in and coupled with the life I have lived the last three years, I know I have something rarely ever imparted to anyone. The ride gets faster and more wild; that is when we jump and succeed. It is a new day and that is good, but things turn dark the following year and I find myself out on the fringe again, more than ever now.

It has been three years since I journeyed north, and it was time to go south again. The things you do when you have completely lost yourself and your mind. It was here that I was destroyed at the wall of creation in a violent blast! Rage coursed through me and revenge was all I could think of. But as the hours passed, I knew it was all me. The ride had to stop here and now, and somehow, it did. Big painful changes had to be made. There were so many of them. Some still hurt today.

What happened next defies who I am and yet defines who I am too. The one thing that I feared the most, the one thing I never did, denounced, and would never be a part of, I accepted, embraced, and watched it unfold like a novel that I was reading and not actually living in.

Three years later, Neil Young's Harvest Moon came out and in the notes of the music, I could feel that everything up and around the bend, was about to change. It changed in a very big way, forever. 

It was a very dark day three years later, standing at the bedside of my father learning that time was up, this was all we would have. It wasn’t right but it was happening anyway. The days that followed were even darker, I was sure I would never see the light of day.

Three years passed and I found myself in a whole new life despite not moving from where I stood. It was timeless and daring. Voices came in over the stratosphere warning that the end of everything was coming. We could never make it back. Suddenly I woke up in a dark parking lot, music was playing and change was in the air. As soon as I heard the music, I knew.

Three years later, Warren was gone, Johnny was gone too and I had a beautiful son. Everything was new and it made everything else that came before seem like it had all been a movie that I had been watching in a dark theater on a sunny afternoon. 

Three years later, there were two beautiful boys in my life. It kept getting better. Late in the year, affliction came knocking. Undiscovered country to navigate, to fight, and to survive.

Three years later, I sat in the hospital reading Are You My Mother to Noah hundreds of times, praying that he would be able to read it too someday. I walked the basement of the hospital with Liam exploring, spending time with him, hoping that soon we could be together again.

Three years later everything changed in the war. Where we were stationed, and how we were equipped. New normal. 

Three years later I am still climbing out of the mire of a life lived in a defensive posture. Never figured it out but I knew where to go.

Three years later I got perspective on the trails. I was starting to learn that discomfort is a diploma and one we should not deny. The biggest trial was coming. 

Three years later I fell on the dying grass that was recently only lush and green. I could not get up and I could not move. Everything that I was got turned upside down and spilled all over the ground. I did not know how to put everything together. A spaceship descended from the sky, and a woman got out and lifted me to my feet. She looked at me and asked, what would you do if you were not afraid?

Three years later I am sitting here writing this. I never noticed this unique rhythm that has played out here. Some days, I feel like I have come a long way. Other days I feel like I have not moved in 30 years.

Falling Down

I guess you could say that I am a guy who fell down the hole.  16 years ago in the summer of 06, we were just discovering the depths of my 6-month-old Noah’s chronic asthma. Those days were like learning that there was a threat and then later you learned the threat belonged to you. During those early late-night ER runs to DHMC, I noticed that there was something wrong with me. I had pain, I was limping and some of it seemed to be lower back related. I blew it off because I figured this was something residual from when I had back surgery back in 2000. Noah had something serious to deal with. This needed all of our attention.  I wanted denial to make it go away but it was becoming clear that it was not going to happen that way. 

The summer progressed and things began to get even weirder. There was an ill-fated trip to camp in Maine (without reservations) that did not work out.  We ended up driving all the way back home through the night.  I recall having to stop for 20 minutes at one point and noticing this strange almost tendril-like resonation wrapping like fingers around my skull that started at the back of my neck. so many of these oddities I kept dismissing since raising a seven-month-old and a three-year-old was distracting enough. I started to notice that my fingertips to halfway up my arms I had this tremendous pain as if I had my arms submerged and 200° water. It grew and became center stage. I began to wonder if carpal tunnel was like this and if it was, then I have not understood how severe it was or taking things seriously enough! As the weeks went by, all of my joints began to burn and swell. I started to suspect that I had Lyme disease. I made a VA hospital appointment. They referred me to rheumatology, six weeks out. They took blood and sent me away to fend for myself for the next six weeks. 

As we crossed into the fall of 2006, I could not exist in a day unless I ate ibuprofen like it was candy. My range of motion quickly closed in on me and before I knew it, I could not move. I REALLY could not move! It took tremendous effort to get out of bed. I had to take a steaming hot bath to start my day. I could not dress myself anymore. My joints would dislocate with minimum impact. I was just about to turn 41, and my life was over. We had a baby and now, I was going to be this huge burden.

 I worked on a dirt road in Weathersfield Vermont. On a crisp clear fall day, you could look east from that road and across the river at Claremont New Hampshire. I could actually make myself walk 3 miles during lunchtime. At first, I could not walk at all, but each day I would force myself to walk as normally as I possibly could. After a while, my stride and range of motion would open up and for that hour in the brilliant autumn sun, I was normal again. The fall colors and the smells surrounded me. Sadly, 20 minutes after I sat down at my desk, I was 110 years old again. 

When I look back on this, I think I took some chances, like hiking my little family down to Silver Lake up in Goshen Vermont where my family and I used to camp in the late 60s and early 70s in an old bus. 

Finally, six weeks passed of me dealing with this mess every day. On that day of my appointment in rheumatology, I wanted them to see it for what it really was, without any painkillers, or anti-inflammatories. I brazenly did not take any of these things and even worse I was told to fast after midnight. I spent the day up there, full-on flare from the top of my head to the bottom of my feet. It was brutal! We had to wait for results to come in from the lab and then meds. 

It was confirmed that I had rheumatoid arthritis. I was to immediately start steroids and then a cancer drug called methotrexate. RA is when your immune system malfunctions and your white blood cells get overactive and identify your joints as a threat and eat away at them like acid. You were left with degraded joints, bone on bone, crippled and disfigured. Methotrexate suppresses your immune system, makes half your hair fall out, and makes you more susceptible to catching viral infections. 

After doing everything I needed to do at the VA, my body was one giant scream, like the painting. Of course, I did not have any money on me and with my sugar levels in the basement, I needed to find food fast. My careful scientific analysis determined that a #2 value meal at McDonald’s would probably fix this quick, fast, and in a hurry. I also needed ibuprofen and water. My plan was fairly simple. I went to Walmart in West Lebanon, got a bottle of Dasani, and wrote a check for $20 over the amount. This would buy the food I needed and put something into my stomach with the ibuprofen. 

I got out 800 mg of ibuprofen and went to open the bottle of water. My compromised joints just hurt and flexed in unhealthy ways. I was this close to the first step of not wishing I would die right here and right now. I could not even open a simple bottle of water!

 I found a young cashier. I felt very odd asking for help. At face value, I looked like I was capable and still looked like I was in my 30s. I held the bottle out to her, “I know this seems like a strange request, but could you please open this?" She opened it right up and I was so grateful. I then went on to McDonald’s and by the time I got home, I was pretty close to my usual in-pain self. I started the steroids at night and within a couple of days, it was like the thing never happened to me. 

In the weeks, months, and years that followed, I learned how to manage this alien thing that had control of me. I played with medication times and days. There are so many people who cannot handle methotrexate. My new limitations were something that I had to come to terms with. In my first year, I could not imagine making it another 20 years. There were not a lot of long-term studies about RA so it all seemed pretty hopeless. I really thought that I was doomed and this was not going to end well.  The meds scared me and I had to really force myself to start them in the first place. I observed other people who had what I had and tried other methods of dealing with it and even some who chose surgical options. It was really not a good thing. 

I decided a couple of years into this thing that the only way that I was going to live with this was to handle it the same way I handled all serious challenges. Anger and rage beat my greatest demons. I knew this was how I would survive. I would not lie down and just let it take me. 

In my life, I have gleaned some of the best methods from the most abstract of sources. For me, it was the words of the outlaw Josey Wales that made such a difference in my life.“When things look bad and it looks like you’re not going to make it, then you got to get mad, I mean plum mad dog mean, because if you lose your head and you give up then you neither live nor win. That’s just the way it is."

 With those words, I made it out of my 20s alive, I quit smoking for good and they are what allow me to do anything even when I feel that I cannot. When the pain is too much for me, my rage pushes me hard to move on through it, like a car driving through a showroom window. It may not be the most eloquent solution, but it has allowed the 16 years with RA to be possible and on my terms. Most importantly, it has allowed me to not be a burden on my family and for my sons to have a father.  I cannot put a value on that and I would not change it for anything.