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By Phil Donlay
Thursday, February 21, 2019
The Philip Donlay Guest Column: The Anniversary
This is the third and final installment of a series of stories from SAA member and bestselling novelist, Philip Donlay. We printed his previous two pieces, “Are You Sure It’s Just A Flare?” and “The Platypus” in the Summer and Fall 2018 issues of the magazine. Our deepest thanks to Philip for sharing a bit of himself with us all.
I had an important anniversary not long ago that almost snuck past me. I came across a file of old calendars that date back to 2007. As I flipped through the tattered pages, written in pencil was the history of different medical appointments. Dates and times chronicling an extensive process to find what was wrong with me. I flipped to the exact date, ten years ago now, of a follow up appointment with a rheumatologist. I remembered sitting in the exam room and hearing for the first time the words “Ankylosing Spondylitis.” The doctor proceeded to tell me that I am HLA-B27 positive, and some other stuff about the disease being genetic, degenerative, there being no cure, but possibly being manageable… The memory gets a little fragmented and vague at this point. I walked out of the building holding two brochures about TNF inhibitors and a thousand questions I didn’t know enough to put into words. I was, however, struck by the fact that the people in the brochures were all very attractive and that they were smiling. Whatever relief I felt vanished by the time I got home and began a Google search that has, in many ways, lasted to this day.
I picked up another calendar and flipped to October of 2008. Complications with my heart had ended my thirty-year career as a pilot, AS was beating the crap out of me, and I still didn’t know how to fight back. Not being able to ever fly again was the worst thing that could have happened. So, for lack of a more succinct description, I spun out of control. For the first time in my life, the word depression was used to describe part of my condition. I went to see a mental health professional and described my situation as having felt like I hit rock bottom. I also went on to learn that actual rock bottom comes later. The initial impact is just the introduction. The worst part came next, as I felt like I was tumbling down flight after flight of stairs, slamming into walls as I fell, until finally, I ended up lying on my back in the darkness. This was rock bottom. I’m not positive, but I may or may not have heard Satan laugh.
Those were rough times. I was given a diagnosis of transient depression. I was instructed to get up, climb up out of the hole, and that the depression would begin to abate. In other words, the best advice was to stop the pity party, roll up my sleeves, and get on with my life. Looking back on that version of myself, at that time in my life, I wish I could go back and have a chat with myself. There was one night I still remember vividly that was filled with desperation, agony, and profound loss. If I could go back in time, it would be to that exact point. There are a few bits of wisdom I’d love to impart on my younger self that would have made things much better.
If I could have this theoretical chat, I would have explained that the realization of one’s worst fear is incredibly liberating. The worst had happened, yes, but he’s still alive. I’d also point out that everything from here on out would be different, and that his life would never be the same again. He’d hear that he could save himself a great deal of angst and effort if he’d simply turn around and swim with the current. I would tell younger me that there were going to be some people who would exit his life, for no better reason than they didn’t want to deal with someone who was sick. That’s their problem. There would also be toxic people who would ignore or ridicule his illness. The sooner they leave his life, the better. I would follow this sobering information with the news that he was about to embark on a journey that would put him on the cusp of meeting some extraordinary people. Not only that, but there were going to be experiences that he would have never believed possible. I’d remind him to never ever give up. At this point I’d probably want to lighten things up a bit and would remind him that when we were little kids we used to think we’d have to deal with lava and quicksand, or perhaps even a pterodactyl that somehow managed to survive extinction. The truth, sadly, is that as an adult, it’s the fear of pooping our pants that looms large. I think we’d all want a heads-up on that one.
By now I’d have my younger self’s full attention, so I’d tell him the most important things I’d learned in a decade of dealing with AS: Take what the day gives you. There are no medals for being in pain and pushing yourself, only more pain. Sometimes your job is to let the flare run its course. I would explain what I wish those very first doctors had made sure I understood - that there are physiological, as well as psychological responses to chronic pain. That what all chronic pain sufferers endure are Anxiety, Fear, and Anger. There are no exceptions, because our brains are hard wired that way. From those three constants spring another group of possibilities. These, however, are not absolutes, they are our emotional responses. I call them the Big Six, they are optional, and we need to be aware of the connections so as to avoid them. They are: Depression, Helplessness, Loss of Purpose, Frustration, Guilt, and Shame. I would implore my younger self to make fighting the Big Six, the number one battle to survive this disease. It’s not just our body that’s under attack, it’s also our mind. This is where the warrior in all of us needs to be endlessly fierce.
I’d explain the value of interests and hobbies, and how immeasurable they are in the fight. There is hope for the future if there are dreams and interests. My theory is that if one can divert the energy of our emotions for ten minutes, or even an hour, while we put our thoughts somewhere safe, good things can happen. A song, a television show, a magazine, it doesn’t really matter what the diversion is, if we can get out of our head, our subconscious brain will work the problem while we’re away. A fresh perspective is always a win. I’d continue and carefully explain that these mechanisms can help him cope, but he needs to take it one step further. He has to do whatever it takes to find and embrace something he’s truly passionate about. I could tell him its fly-fishing, but I don’t, as he’d only roll his eyes and laugh at me. At this point in his life, he thinks fly-fishing is a monumental waste of time. He’s wrong, but there are a lot of things he doesn’t understand yet. He’s still hung up on what he’s lost, but once he starts realizing what he still has, its game on. The world will look remarkably different.
I’d go on about how we all know AS is a war of attrition, it’s a disease that takes, rarely gives back, yet we fight on. Guard your passions as if protecting your very life. Adapt, and reinvent yourself. Dreams and aspirations are powerful motivators, as well as wonderful painkillers. I’d try and reassure my younger self that down the road, life is far better than it is now. Time numbs some of the bad memories, and hope creates some peace.
There will always be the pain, yet these days, the most reliable escape is only seconds away. I imagine my favorite trout stream, slowly walking the shore, being mindful of the quiet, the insects, the wildlife, the endless motion of the water amongst the rocks, and the sanctity of nature. I’ve gotten to the point where it doesn’t really matter if I catch a fish or not; I’m out there. I understand there may come a day I won’t be able to get to the water, and when that day arrives, I’ll do whatever I can to always have a sanctuary to fold me up in its arms and help save me from this disease. Every warrior needs to find their refuge, and when you find it, hold on tight until you have to do something else. It’s what a warrior does.
In my mind, I’d turn away from my mythical conversation and walk bravely toward a fictional sunset. Though in reality, I’d more than likely stub my toe, tweak my bad knee, and end up letting out a string of profanity - because that’s how this warrior rolls.
Editor’s Note: According to a recent literature review, published in Arthritis Research & Therapy, 15% of those with axial spondyloarthritis (axSpA) have at least moderate depression, with overall depression rates for those with axSpA ranging from 11% - 64% depending on criteria and thresholds used. If you feel you may be at risk for depression, you are not alone, and we urge you to reach out for help. You can take an anonymous screening online, at http://helpyourselfhelpothers.org/ as a first step.
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