Letter to the Editor of Time in response to special issue “The Opioid Diaries”
March 3, 2018
James Natchtwey did well in capturing the wretched bodies and ebbing lives of the addicted. You can almost see the soul of the enslaved but can you understand why they destroy themselves with demon substances? I am mostly frightened. I find it incomprehensible, despite my daily dalliance with these drugs. Chronic pain leaves me little choice. My wincing heart and squinting eyes look as my anger rises. I know this is only part of a tragic tale that should be familiar to Americans by now. Nothing new here. So my compliment is more of a demand to hear the rest of the story. At least an attempt to know more about addiction and the treatment of chronic pain; two separate yet related issues. We seem to be treating it as one, consequently,solutions thus far seem only to add to the problem. Here as well, to picture only a sliver with few words is not only disingenuous, it is dangerous. It is deception, even if unintended.
I make my demand because many medical professionals, politicians, journalists, family,friends, the public overall, even some pain specialists do not understand. I have been indicted before diagnosed. I have been judged and labeled by loved ones and neighbors who reckon themselves to be skilled practitioners who call me ‘addicted’ based upon sensational-type news ‘”education” that makes for tortured stories, great photos and scary stats. Crisis and epidemic are words that grab and don’t let go, if those images are powerful, as intended. What echoes are the wails of mothers who have lost children, first responders who describe addiction as stealing away their work as they struggling to handle their own own difficult emotion. I have suffered treatment by beleaguered and cruel doctors who suppress a monthly groan not quite convincing enough as they threaten to deny treatment; Physicians who complain to patients, as if the pain to be addressed is theirs..angry for doctors jailed for some drug offense. Or doctors who impose artificial conditions,blaming character, on the record, rather than medical infirmity for your presence as they dangle that script just beyond your reach; Pharmacies and staff who complain about petty rules making their jobs harder, rules you have not established. Or look with a cold eye, if they dare to meet yours. Finally to spit out a law that makes you drag out the door in desperation to try one more store.
I have also heard silence deepening my desperation while paying medical device overlords for expensive alternatives that are colossal failure...Last ditch treatment chosen out of lack of choice. Through these times that slowly stole my life was a parallel battle of six years to gain disability benefits... ending with a judge who has no trouble with denial with the worst record in Florida. Six years waiting to be granted a hearing that she warped into a trial. Hers was not a guilt/innocent determination, except in her courtroom when I was judged “guilty” of pretending to be unable to work because of chronic pain. She beat me so much more, as I wept in a darkened courtroom, atop a mountain of medical records, staring into a videocam while she hid her face.
Then, there is an inaudible roar of the DEA that drives fear into the work and lives of those who must touch and take these drugs. Closing the insane circuit are lawmakers who seem suited to don white lab coats like a wise healer/researcher or beneficent gods to decide how best to practice medicine. Do they dream of being saviors who will cease the national crisis? So far, they seem to only make life harder for those who struggle to treat and live with chronic pain.
As media can warp understanding by way of selectivity, so too, has media ignored the shifting business of drug dealing, at least in Florida. Once pill-mill central for many states, short-sited legislators shut the sites down. Dealers simply established a new base, within prisons.It would seem only one small newspaper covered the initial story of a sting called “operation checkered flag”. Check your pre-conceived notion of inmates. Corrections officer ran this operation. While about 70 officers were placed under investigation,the story was told by one of two bosses interviewed while he worked gleefully on the race car he bought with profits from the business.What is the end of that story?
But I mostly plead as part of the untold story. Opioids grant me life. This is gained through excellent medical care and the cautious use of opioids. It has taken me years to find and establish treatment, during which I endured excruciating diagnostics, multiple procedures, a double failed Boston scientific device, countless pharmacies, taming of wicked side effects and reckoning with many losses in life. But I have life on this slow ascent up the opioid ladder. Living in fear that someone, other than my doctor and myself, will take it away and I will be forced to a life wanting to die for lack of relief. It is imperative to make a distinction between legitimate treatment and addiction. And continue learning and telling the story. One whose knowledge rings true is a professor and researcher at Columbia University, Dr Carl Hart. He seems to stand alone bravely and with compassion sharing his knowledge that no other seems to speak of. It gives me hope. It can bring hope and true solutions to our nation struggling with this substance scourge and the treatment of chronic pain. We can save lives and restore the life of patients who suffer from chronic pain.