They call it the “suicide disease,” and for good reason. Through the only option the desperate feel they have left, there are reports that up to 25% of sufferers take their own lives as a means to escape what even skeptics of that 25% number (and I hope they are right) describe as “one of the most painful afflictions known to mankind.” The medical name is Trigeminal Neuralgia (TN) and my wife has had it for 11 years.
The trigeminal nerve is the largest in your face. It starts near your temple and branches out like three fingers 1) just above your eye, 2) through the top of your cheek, and 3) into your lower jaw. No one yet knows what causes TN. There is no cure. My wife describes the pain as both intensely sharp and searing, like a burn.
Some sufferers of TN are hit with waves of attacks. There is pain and then relief. It comes and goes, comes and goes. My wife isn’t so lucky. There is no “goes.” The pain arrived 11 years ago and has never-ever gone away.
TN is so rare, it took years for her to be diagnosed. God, it was awful. During those years, it took every bit of concentration she had just to keep her job, to drive a car. The pain was so intense, she didn’t have the concentration to do what she loves most, read. Maybe she would get a couple hours of sleep, but only because of complete exhaustion. My only memory of those years is helplessly watching her wince in constant, unbearable, inescapable pain.
The pain in her teeth was so intense, brushing was unbearable. She could only (barely) eat soft foods. Applying make-up, even a powder, was pure agony. And those were the good days, the days when she could at least barely function. The sudden flare-ups that intensified the pain could last for days and sent us time and again to the emergency room. A shot followed by relief followed by two lost days of sleep followed by waking up to the nightmare-cycle all over again.
Eventually she was correctly diagnosed. There were good doctors and doctors so bad, so insulting, so sure she was just another junkie looking for drugs that it took a call to 911 to get me and my rage out of their office. There were surgeries — nerve blocks, a Gamma Knife, and finally a nerve stimulator implanted in her face.
The stimulator hit a sweet spot, but only with the help of powerful painkillers, those dreaded opioids we are hearing so much about today. Thanks to both, though, for a number of years, my wife was able to live a normal life. Oh, the pain was always there, but it was manageable. There were still flare-ups and reluctant trips to the emergency room, but normal life usually returned afterwards.
This pain medication is expensive, the side-effects are terrible and none of your business, but well worth it. And when the pain is this real, there is no high, no lift, no euphoria, and no concern about addiction. To us, these opiods are miracle drugs, magic pills that gave us our normal life back.
Except, thanks to the cause du jour, life today isn’t so normal.
About 18 months ago, a series of medical calamities that took precedent over her TN, hit my wife. I won’t bore you with the details, but after a number of surgeries, nearly a month in the hospital, and months of physical therapy, she has fully recovered.
The only problem is that during those 18 months, the laws changed or the regulations changed or something changed… The word “opioid” suddenly became a buzzword — a scarlet letter like “tobacco” or “trans fat.” This crisis, this epidemic, this national emergency of addiction and overdose has become one of those rare issues Left and Right can rally around. Huzzah!
Well, not everyone is celebrating the feelzgood. You see, down here on the ground there remains the smallest and most vulnerable minority there is: The Individual, that one person who doesn’t fit into your Box or your Solution or The Cause of the Moment, no matter how worthy that cause might be. And that person is suffering, and right now that person is my wife.
Because the drive is so beautiful, we actually don’t mind that every time she needs a prescription refilled. North Carolina requires my wife see a certified pain specialist whose office is nearly two hours away. We’re not blind to the problem. Up here in the mountains we know all about the Pillbillies and the Hillbilly Heroin. We’re not unsympathetic. We’re willing to serve a greater good through some inconvenience of our own.
Besides, her doctor is great, the kind of professional you want monitoring such a thing.
But now her doctor’s hands are tied.
For whatever bureaucratic reason, he can no longer provide her with the dosage that keeps her comfortable, that allow her to live a normal life.
And so, after recovering from 18 months of that fresh hell, she was dropped right back into the old hell, the crippling, inescapable facial pain that steals her concentration, puts her on soft foods, and means a life of inescapable, unbearable pain. For the last three months, outside of a few hours of normalcy here and there when it magically became bearable, my wife is a wincing, immobile zombie living in a world of her own agony.
Yesterday, after an emergency trip to her doctor, she got what we both know will only be temporary relief, and she reveled in it with some real food and a trip to the gym. Right now, as I write these very words, I can hear her humming as she putters in her kitchen — a sweet sound no one should ever take for granted. She’s hoping to get in another workout and maybe get her hair done before the pain wipes her out again.
She’s even hoping to drive her new car. We’ve had it three months. She’s never driven it.
We haven’t given up. We will never give up.
Tomorrow, there will be another surgery, another nerve block. Hopefully, it will work. Hopefully, afterwards the pain medication she’s now allowed will be enough. Maybe it will cure her completely and she will never have to take another pill again.
I don’t know.
What I do know is that it doesn’t have to be this way.
Normal life is just a prescription away.
But she can’t have that because no matter how good your intentions or cause, one size does not fit all.
Follow John Nolte on Twitter @NolteNC. Follow his Facebook Page here.
