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.
