Pain and suffering, it’s our milieu. It’s also something that many of us who are chronically ill have to deal with on a regular basis, and while we all start out dealing with it differently, we all usually end up in the same place. We reach a sort of forced peace with pain and discomfort, and it becomes so much a part of our lives that we are hard pressed to think of what life would be without it. Despite pain becoming such a “normal” part of our lives, though, it doesn’t mean that it doesn’t get to us from time to time, and that we don’t get fed up. It happens to the best of us, and when the dam does break, everything comes flooding out at once.
Let me tell you a little story. It’s something that happened to me a few weeks ago, and it’s not one of my more stoic moments, to be sure. I had spent most of the day out with my family for a Christmas treat, no expense spared. We went to Manhattan in a limo, ate dinner at Le Cirque, and took in a concert at Lincoln Center. It was just about the perfect evening, and I couldn’t have been more content spending the time with my siblings, my mother, and my wonderful fiancée. So why was I upset? Well, my disease had picked that night, of all nights, to act up with that most annoying of symptoms – the low grade fever that makes everything else that much worse. To add to my discomfort, the ubiquitous pill bottle that has become the Cabasa in the soundtrack of my life, the container that keeps my regiment of fever and pain controlling drugs at my fingertips, had gone missing due to a last-minute trouser change. So, I had to bite the bullet and grind through most of the night.
When I finally did get home, I shoveled pills into my mouth like I had taken poison and they were the antidote. It would still be an hour or so until they took their full effect, but those of you who are ill out there know that after years of swallowing medicines that bring relief the body learns to anticipate their effect and instantly releases certain neurochemicals that help to deal with the discomfort. There was only one thing left to do at that point – take my daily Kineret injection.
It was a simple thing – a tiny needle into my belly and a quick depression of the plunger. It normally took no more than thirty seconds, but that night, something happened. Nine times out of ten I can find a spot to inject where the pain isn’t too bad, and that tenth time I just bite the bullet. This particular evening, though, for some reason, no matter how many injection sites I tried, it hurt like a root canal without Novocain. After the fourth attempt, that’s when it happened. I couldn’t stick that needle into my belly again. My brain knew I had to, my hand was ready to stick, and my thumb was ready to depress, but my arm just wouldn’t move. I froze. I was so God Damn fed up with hurting that night that I simply refused to deal with any more agony because of my stupid, inane, disease. I didn’t want to inject myself, and moreover, I couldn’t. I literally could not stick that needle in one more time.
Suddenly, I felt a wetness on my cheek and realized that I had tears streaming down my face. I wasn’t crying, but I was just so angry and frustrated that I had to deal with yet another bout of, excuse my French, bullshit, that this horrible disease had thrown in my path that my whole body was rebelling. My subconscious was saying “NO MORE!” and stopped listening to my commands to stick the needle in to my belly for a fifth time.
God I was so angry! I can still feel the white heat of that moment right now as I write, and I’m gritting my teeth without even realizing it. Of course, Allison calmed me down and after a while I was able to take my injection and go to bed. I will never forget that feeling of frustration and rage.
Those of you who have autoimmune disease can relate, but, really, anyone who has lived for any significant amount of time can identify with the feeling of being fed up. Even the calmest, Eyore-like personality among you has reached your breaking point at least once or twice, I’m sure. Well, those of us who deal with pain on a regular basis may seem like we have it all under control and that we have learned to live with the constant discomfort, but the monster is always right there, just under the surface, lurking, waiting to be unleashed. It knows it will get it’s chance to pounce as long as it’s patient, and so it waits, and when it finally does surface, it brings a wrath like no other right along with it.