This has been a long time coming. Practically no one reads or writes blogs anymore, except the proud few who somehow (clickbait) make money off it, but for anyone who is reading this, thank you. And get ready: in the words of David Bowie, “I don’t know where we’re going, but I promise it won’t be boring.” (Content warning: lots of talk about chronic pain, depression, and suicide. Possibly boredom.)
I don’t like talking about my pain because, believe it or not, I don’t like to complain. I mostly like living a private life: my business is my business, and my thoughts are my thoughts. My pain is my own. Don’t get me wrong. I am happy if hesitant to invite my family, friends, and loved ones (different names for the same group of people) in to jump down the rabbit hole as far as they’re willing. The reason I don’t like to complain is I don’t like to burden others. I don’t like to bring people down. I like to be the funny guy and make people laugh, rather than tell them that (until a few weeks ago, I'll explain why) 90% of the time I sincerely wish I was dead. The whispers of kill yourself, kill yourself in my own voice and voices of others constantly creep into my thoughts everywhere I go.
For the past 17 years, I’ve lived in constant pain. Over half my life. You probably know this, but I suffered from bone cancer when I was 15. I assumed I would be in the hospital for a year, get a metal knee, and be done with it. Maybe acquire a few stories or something to make my life more interesting and help me develop into a better person. That was partially correct. However, what I didn’t realize (aside from the complications of chemotherapy and all the other fun stuff that cancer brings) was the results of cancer would plague and color my life for the worse from that point on.
After being pronounced cancer-free, my leg kept hurting. Varying between aching, stabbing, throbbing, itching, gnawing, sharp pain, dull pain, (“gnawing, biting, breaking, hacking, burning”) but, ever constant, pain. I’ve become something of a pain connoisseur, at least as far as my leg has been concerned. I’ve been on crutches, used a cane, had numerous surgeries hoping to correct the problem, including one where they removed my hip, but the pain has always returned, like an unrelenting wolf lurking in the shadows, never satiated, striking again and again.
Another reason I haven’t liked complaining about it is the feeling that the continued pain was somehow my fault. That the surgeries didn’t work because I was somehow deficient. Or I deserved the pain. I was either being punished or prepared for unspecific greatness by an inscrutably loving God. He was surely teaching some great lesson that, once learned, would show me the great vistas of Heaven, rather than wonder if Hell could be any worse.
I’ve thought of (and tried) killing myself many times. The thought of old age has been one of dread, as I expect aging will magnify the pain eventually to the point of collapse. I constantly fear one day the pain will grow too great, and my reasons I desperately hold on to for living won’t be enough anymore.
My religious upbringing taught me to believe that God gives us trials to overcome them. That He will make weak things become strong (Ether 12:27). That He will consecrate our afflictions for our gain (2 Nephi 2:2). Nietzsche famously said “that which doesn’t kill you makes you stronger.” While I tried to believe what I was taught, the last 17 years have given me ample evidence that the scriptures and Nietzsche were wrong. Wrong, wrong, WRONG!
Because the pain hasn’t made me stronger. It’s made me bitter. It’s made me more selfish. It’s led to depression. When I say pain has colored my life, I mean it’s dulled it—all the colors turn muted. When you’ve experienced chronic pain, joy isn’t as sweet; passion is downgraded to amusement (if that).
If you’re reading this, most likely you’re in the group I mentioned above, family and friends. If you’re willing, you’re welcome to jump down the rabbit hole with me, as I act as guide in my world. Most of the time, at best, you feel malaise, ennui, and other emotions originated by the French. At worst, you feel suicidal and harbor feelings of bleak despair, festering self-loathing, and consuming bitterness at everyone who is not in constant pain. The specter of pain is always with you, telling you “You can’t enjoy this. You’re not allowed.” So you sit back and watch your son grow up without you, trying to feel gratitude that he has good aunts, uncles, cousins, friends, etc. who play with him when you can’t. . . because the pain is too great. So you sit on the sidelines, wanting more than anything to chase after him to tickle, tackle, and hug, wanting to hear his infectious laughter and know that it’s because of you. But either you literally can’t, or you know that if you do, the tremors of pain will erupt and you won’t be able to even move the next day without wincing or screaming in pain.
You feel like a bad husband because you can’t be the strong Protector with a capital P that society, the media, your church, and fairy tales say you should be. You can’t help as much as you’d like to with the housework, with simple errands, with keeping a job. You fear that if an intruder intrudes, the best you could manage is a temporary distraction before they take away everything precious to you. It makes you angry, and you turn your anger toward your wife—not abusively, thankfully—but you’re harsh and angry when you really just want to cry. You lash out at a wife who by all accounts is the greatest woman on the planet. Beautiful as the morning and, in your eyes, the only contender for People’s Sexiest Person Alive. Kind and loving, you literally could not wish for a better mother for your children, or a better friend. Brilliant, cunning, witty, and hilarious—she challenges your perceptions and preconceived notions of perfection. You often have to stop yourself and wonder if you’re just looking at her through the rose-colored glasses of a devoted husband. But even trying your best to view her objectively, she’s divine. If you saw her on the street, you would think she is the most fascinating person you’ve ever seen, and you must do absolutely anything to get to know her.
But the pain causes you to temporarily forget all of this. You yell at your beloved wife for asking you to help with the dishes or put your children to bed. You hate yourself, so you transfer that hate to her, even though at the same time you marvel at her patience and love. You secretly fear she thinks a) she could do far better with damn near anyone else, b) you’re faking pain to get out of helping (almost never true), or c) both of the above, but pretends not to for the sake of your relationship, further proving she’s too good for you.
Continuing in your journey as me...Your selfishness and pain make you a worse person. You used to love giving service. For some twisted reason you really liked helping people move. Now you sit and make excuses when someone needs help, hating yourself for it. You can’t give blood because they don’t want your cancer blood. (Until recently). You can’t give comfort or succor because you are so starving yourself. When you try to serve in spite of the pain, the pain gets worse, punishing you for daring to think of others, daring to think you could be normal.
By now, you might be wondering about efforts to manage the pain. You try to lose weight to lessen the pain, but exercise leads to further pain, and not the good pushing-yourself kind of pain, the make-you-wish-you-were-dead kind of pain. You blame others; you blame yourself; you blame everything. You feel bad because you know others have it worse. You hate complaining because others are in more pain. There are people starving. People being tortured. Children abused by the parents supposed to love them. People murdered because of the way they were born, their race, their gender, their orientation, their beliefs. Surprisingly, this doesn’t make you feel better about your situation. Just because someone may have it worse, you only have your own experiences and your own pain reminding you that you still have it pretty bad. Because the pain is always there. Distracting you from living life. Distracting you from being happy. Distracting you from trying to feel charity for others.
What about pain meds? You try pain killers like morphine, Valium, Vicodin, codeine, and combinations thereof. Some work better than others. Most have side effects that are worse than or just as bad as the pain. Side effects including, but not limited to, hallucinations, severe itching, vertigo, memory loss, and depression. You realize you’re trading pain for side effects that aren’t worth it. You know your pain. You’re used to it. So you choose the pain: the devil you know. You make do with taking plenty of over-the-counter medications to take the edge off the pain. This means you can go to exotic places like the store, the park, the movies, places with your family where you can pretend to be normal. . .before the pain returns, as always. The ravenous wolf invariably gnaws and gnashes at your leg, reminding you that you can’t be normal, and that he will always be with you.
This has been your life for nearly two decades. You learn to accept it. Eventually, the pain becomes part of you, weaving itself into the fabric of what makes you inherently you. Dulling the once brilliantly colored tapestry of who you once were: a person happy with who they were, comfortable in their own skin. A person who loved telling jokes more than anything, delighted with the knowledge of contributing to someone else’s happiness. But you’ve grown, or shrunk depending on your point of view, into the person you are. At this point, this is all you have known, and all you think life can be.
Maybe now you see why I’ve been hesitant to let people in, reluctant to let people know how much my pain has affected my life, my very core of who I am.
For better or worse (it’s worse), my pain has tempered who I am, even if I hate myself because of it. Because I should have risen above it, should have mastered it, should have told myself I am not my pain. But I am. Or I have been.
That’s what makes this next part so scary. My pain has defined me, even when—especially when—I haven’t wanted it to. However, there does in fact seem to be light at the end of the rabbit hole, and falling down may yet have turned out to be falling up.
A few weeks ago, I asked a Facebook group I’m in if they knew of any chronic pain support groups in Utah County. Although I had resigned myself to a life of pain, I thought joining a club of fellow sufferers could make the suffering more bearable. The Facebook group didn’t know of any pain support groups, but a few recommended the Utah Valley Pain Management Clinic in Orem. My life couldn’t be any bleaker; I figured what did I have to lose?
(Note: Tracie would like everyone to know she’s been telling me for years and years to go to a pain management clinic.)
Not knowing what to expect, I set up an appointment. The doctor asked lots of questions, and I filled out lots of paperwork. Then, he did lots of tests and inspections on me and eventually prescribed a new medication. “This isn’t an opiate,” the doctor said, “It’s called Neurotonin, or generically as Gabapentin. It helps with nerve pain. It’s an anti-seizure medication.” I figure what the hell. Give it a try. But then he says something that makes me cry, cracking the dam of emotional pain that has been building up for years. “But if this doesn’t work, we have many more things we can try to make you feel better. We will keep trying until you do.” I’ve only wanted to kiss a man twice in my life. Once was Freddie Mercury because, Freddie Mercury. The other was when this doctor promised me he’d help me feel better. I didn’t kiss him, but I started crying and thanked him.
This was about four weeks ago. I’ve steadily increased my dose of Gabapentin as prescribed, and the pain has slowly decreased to the point of near non-existence.
Sometime last week, Tracie asked why I’ve been so happy lately. Simultaneously, we both realized it. How dark our life has been because of this ominous shadow of pain, a cave of bleak depression and helplessness affecting both our lives. But here’s the thing: I barely feel any pain in my leg now. We went to the local discount arcade (Nickel City) a week ago, and not ONCE did I complain about wanting to leave.
This was huge. For the first time in years so long I can’t even remember, I had fun outside of my home without pain bringing me down, preventing me from enjoying myself fully. Instead of needing to sit down in a lonely corner, instead of watching my wife and son enjoy themselves without me, instead of wondering if they’d be better off if I weren’t there, I had fun with my family!
I hope so much it continues, and as cliché as it is, I feel like I have a new lease on life. I think I have a chance to be normal, a chance to be happy, a chance to help others without the pain restricting me. This exhilarates—and terrifies—me.
Terrified because, what if the pain comes back? The wolf is not gone. In the shadows, he silently stalks back and forth. I can sense him pacing in the corner of my eye, watching intently when I take my medicine, eager to attack if I ever forget. I’m not ignorant enough to think the pain is gone forever, that my problems are magically fixed. The medication doesn’t remove the pain; it shields the transmission between my leg and my brain whenever my leg hollers, “Hey brain, I hurt!” (He’s probably sick of shouting it. I know I’m sick of hearing it.)
As I sit here writing my first blog entry in over a year, my leg is still aching and throbbing a little. Nowhere near the pain experienced before I started taking Gabapentin. But it’s still there. And of course I know that life is a certain small percent what happens to you and a much larger percent how you let it affect you, but I’m still hesitant to be fully happy. The pain has ALWAYS returned, with a vengeance. What makes this time any different? I’ve been the victim of my own leg, the prisoner in my own body so long, I fear the escape. And, to quote Jim Butcher, “I'd hate to find out that the universe really wasn't conspiring against me. It would jerk the rug out from under my persecution complex.”
But whether the pain returns or not, for now I choose to be happy. Now is all I have. Because if I can truly be happy—if I can be the husband, the father, the friend, the service-giving person I’ve wanted to be—that’s all I want. To not have my leg cage me. I’m so happy at this moment, but afraid. Because for the first time in 17 long years, I’m stepping out of the cave, away from the darkness of pain I’ve known so well and become such an integral part of me. And this scares me. I’ve identified as a person who lives with chronic pain for so long, it’s who I’ve been over half my life. Even though words can’t express my joy at being free of this Sisyphean boulder, in a weird way, I’m mourning the loss of that Austin. Not only that, but I’m afraid that I actually am just a horrible person who’s been using his pain to mask the horrible person he is. It’s made me selfish for so long; I’m not entirely sure how to be charitable again, or how to be this new Austin.
But I’m excited to find out, and I will do my damnedest to improve, to make others happy, and to be happy myself. Whether this is my new life, or a temporary reprieve, I look forward to a brighter future. I’m stepping out of the cave, leaping out of the darkness. The wolf is there, but I won’t let him catch me.
You have escaped the cage. Your wings are stretched out. Now fly.