Despite the frenzied pace, I took a day off this week and traveled to Boston to celebrate my brother’s birthday. Over the past year I’ve watched his MS advance and take hold of his body and mind in a targeted effort to steal him away from himself and his life. His once brilliant and extraordinary mind is enduring what could be the final assault. He cannot speak other than to say rudimentary words, mostly labored yeses and noes. He cannot stand on his own and he certainly cannot walk. When MS takes over it is ruthless. Yet somehow my big brother manages to communicate his satisfaction with life — with his wonderful partner, his family who loves him, his compassionate caretaker, and his comfortable home.
Nature has played a cruel trick on him — anointing him with MS when he was in his late 20’s. His burgeoning career as a stellar journalist was quickly compromised. Seeing a future of uncertainty with the ins and outs of MS resurgence and stealth disintegration, he altered his career path, working the next decades as a desk editor at the Boston Globe, writing on rare occasions, and, in the 90s, helping to found Out Magazine. But MS was always there, lurking. Stealing bits and pieces of him in fits and spurts as the years passed. He retired early and has been eking out moments of comfort, even joy, with his partner Miguel, living in a modest home just west of Boston. But the day has come, the day when the disease is making clear that it will not relent, it will not release him. It will not turn back.
What most people do not realize is that many benzo victims are as ill and as disabled as my brother who has MS. Though, with benzos, I believe we are dealing with something more sinister. The benzodiazepine epidemic could have been avoided. The cause of MS remains beyond researchers’ current understanding. Benzo injury does not. Yet, safe prescribing is still uncommon. When patients experience adverse effects, prescribers still tend to increase the dosage. And when symptoms worsen, doctors rarely recognize them as tolerance or kindling. Still. Too often additional medications are prescribed, compounding the injury, placing the patient in deeper jeopardy. Once the source of benzo illness and injury is detected (usually by the patient), tapering and healing can begin. But for too many healing takes years. The definition of recovery becomes relative. Expecting full recovery can seem foolhardy.
Who knows this better than a benzo victim? Over the decades, benzodiazepine risks have gradually been made available to members of the public who care to hear. A small number of clinicians and journalists started listening to patients’ horror stories and took a better look at the evidence. Victims of benzodiazepine misprespcribing began finding each other, educating each other, and advocating for awareness and change. I am grateful beyond measure that one of the originals, Geraldine Burns, appears as the heart of As Prescribed.
As I sign off, I want to acknowledge my brother’s generosity. He has been a reliable supporter of As Prescribed. He might not be able to speak or write the way he used to, but he can still express his empathy for those harmed. With a nod, he lets me know that making this film is the right thing to do.
Please consider joining the cause. Help us finish As Prescribed.