My mentor was dying and I had no idea what to say.
It was Spring 2018 and John Pettegrew, Lehigh University's chair of history and my dissertation adviser, had just received a call from his doctor. We were meeting to discuss my dissertation proposal; I'd completed my coursework years earlier with a 3.8 GPA and had done well on my exams. Every previous conversation I'd had with Pettegrew had been stimulating and enthusiastic on both ends. Because he was kind, he reiterated how much he believed in my proposed topic and, knowing that I'm autistic, made a point of understanding neurodiversity. I had switched advisers precisely because our minds were simpatico. Yet in this meeting, for the first time ever, I began to wonder if Pettegrew's cancer diagnosis might thwart that fate.
He asked that I leave the room so he could take his personal call. I did so, of course, but I could tell as soon as I returned that the news had not been good. All of the energy seemed drained out of him. He tried his best, but it was clear that he was distracted. To this day I question whether I should have even asked the next question that came out of my mouth, but my instincts told me that he would be okay with it.
"Professor Pettegrew, how are you feeling? Do you think I need to switch advisers?"
He smiled at me sadly, but with a twinkle still in his eyes, and said, "I'm going to beat this, Matt. You're going to get your PhD and I'm going to watch while it happens."
Those were the last words I ever heard my academic mentor utter in his own voice. Within a few weeks of that conversation, Pettegrew had passed away.
* * *
I was crippled with grief at the loss of my mentor. Little did I know that this would also be the first in a chain of events that would culminate in my mental health issues, for a period, becoming too much to manage.
All of my life I have struggled as an autistic person. When you are neurodivergent but live in a world run by neurotypicals, there are countless obstacles separating you from the kinds of lives that other people can take for granted. Finding and maintaining employment (much less gainful and emotionally fulfilling work) is more difficult, if not impossible. Every type of relationship, from those with family and friends to romances and mundane encounters with strangers, is fraught with difficulty because so many of the people around you speak a language that you don't understand. You are bullied, you are fired, you are dismissed as weird, you are left feeling alone. If there is anything worse than the loneliness, it is the sting that accompanies every occasion when your autism gets you penalized in the game of life. The pain is unbearable; the anxiety stems, I suspect, from a visceral desire to never have to feel that way again.
These struggles lead to traumas, and those traumas build up, eventually causing generalized anxiety disorder. For me it has destroyed romantic relationships, friendships and career opportunities. Many moments in my life that would otherwise have been happy were tarnished because of this. The anxiety disorder manifests itself in my life in a number of ways and, after years of therapy, I have determined that it is largely due to my neurological differences — both the fact that I'm autistic and the fact that I've accumulated a lot of trauma from the abuse I endured as an autistic person.
Despite this, around 2010 I resolved to build a life for myself, piece by piece. I would get a PhD in history, become a professional writer, find true love and learn how to reduce the obviousness of my autistic tics around un-empathetic normies. It was painstaking, but by 2012 I had obtained my MA in History from Rutgers-Newark, was en route to the PhD and had started making my living as a writer. In 2016 I was hired as a staffer at Salon and, after years of dating around, had found a long-term partner. When 2018 opened up, I could not have imagined life being much better, anxiety notwithstanding.
Pettegrew had met me a few years into my self-improvement phase and had been an early, reassuring ally the entire time. Now he was gone. The road ahead for my academic career was going to be bumpy. I tried my best to prevent spillover from that into the other, non-academic areas of my life, but that proved easier said than done. Trying to protect what I had built was like trying to protect a sequence of dominos after the first one had been knocked over. Eventually, I needed to be hospitalized for anxiety, depression and other serious mental health issues — not once, but twice in a span of six months.
Even though I am terrified of taking pills (I've reported on the opioid epidemic), the second hospitalization convinced me that I needed to pursue a pharmacological route, which I had previously avoided in favor of a strictly therapeutic one. When I was released, I was booked to see a psychiatrist, where I was prescribed a benzodiazepine called Xanax, as well as (later on) Lexapro. The Xanax in particular scared me, as benzodiazepines like Xanax, Ativan, Klonopin and Valium have a sinister reputation.
Nevertheless the drugs worked. If my anxiety was an ocean, the medication was a surfboard. It didn't reduce the size or tempestuousness of the waves, but it allowed me to ride them out as long as I kept my footing. Over time, though, I realized that when I didn't take the Xanax, my earlier fears about pills would be realized: I experienced severe withdrawal symptoms, including uncontrollable anxiety worse than anything I'd experienced before I was hospitalized. There was a deep depression, a feeling of hopelessness, that was analogous to what I had felt during the events which occurred between Pettegrew's passing and my second hospitalization. My body would break into cold sweats, forbade me from sleeping by stuffing my brain with racing and disjointed thoughts, and kept me uncomfortable with gastric ailments. Eventually my doctors agreed that I should gradually taper off the Xanax and use medical marijuana to cope with the withdrawal symptoms. It helps, but doesn't fully make them go away.
This process began more than a month ago. I'm still going through it now and worry that it may last even longer. My doctors did nothing wrong — I've learned, from years dealing with mental health professionals, that prescribing drugs is as much an art as a science — but still I'm in quite a pickle. There is a stigma associated with being dependent on a benzodiazepine, but I do not believe there is anything a reasonable person could have asked me to do differently. I did not break the law. I never took any benzodiazepines that were not prescribed to me, and I needed those prescriptions because I was coping with a debilitating ailment. My doctors did the best they could, and so did I.
* * *
"The withdrawal process is grueling, but what you are experiencing is extremely common and normal," Angela L. Robinson, clinical director at NorthNode Group Counseling, told me over email. "You need to allow your body to heal itself through detoxification."
As Robinson pointed out, it is normal to struggle as you taper off of a benzodiazepine dependency. The side effects can last anywhere from a couple weeks to a month, or even longer, depending on how long a patient took the drug and the extent of their dependence.
"Benzodiazepines are very powerful and complex drugs," Robinson said. "The drug works by slowing down activity from your nervous system, the information highway throughout your body, to your brain. Benzodiazepines work to decrease activity in the nervous system. It diffuses the physiological and emotional side effects of stress. The drug does not solve the root cause of the stress."
Robinson says she has seen patients respond to withdrawal in harrowing ways.
"Typically, clients have a severe physical reaction during the detox," Robinson recalled. "Remember, because the drug tranquilizes the activity within the nervous system, your body will start to feel restless, because the signals are waking up. I've seen clients develop uncontrollable shakes, psychosis and/or feel panicky. Other common withdrawal symptoms include sweating profusely, chills, insomnia and/or trouble sleeping, suicidal ideation, and increased depression."
Dr. Leela Magavi — a board-certified adult psychiatrist and board-certified child and adolescent psychiatrist who has worked with patients struggling with anxiety, depression and PTSD — wrote to Salon that she is wary of prescribing benzodiazepines precisely because they can be dangerous.
"I have evaluated many individuals who have endured similar symptoms," Magavi explained. "I would contend that most individuals struggle with titrating off of benzodiazepines due to their addictive properties. I only initiate benzodiazepines when warranted due to their addictive properties. Many patients present to my clinic on high doses of benzodiazepines, which were initiated by their primary care physician or another specialist. I find this very concerning and do whatever I can to collaborate with my physician colleagues to educate them about the potential dangers of benzodiazepines."
Given the risks, one might be apt to wonder if doctors are overprescribing benzodiazepines. Certainly, something similar happened with synthetic opioids, fueling an ongoing addiction crisis.
Regarding overprescription, Magavi was unequivocal.
"Certainly," Magavi told Salon. "I have had patients present to my clinic on alprazolam or Xanax 4 mg per day and other similarly concerning doses. Individuals hope for relief and improvement, but these short-acting, habit-forming medications can create more problems and rebound anxiety for patients." She urged people dealing with benzodiazepine withdrawal to advocate for themselves as much as they can.
"Some physicians may discount symptoms if they are not common, but I would recommend reiterating their symptoms or seeking a second opinion," Magavi advised. "I would encourage them to present to the ER with any acute concerns as they may need to restart the medication for a short period of time. Some physicians may cross-titrate to a long-acting benzodiazepine and gradually titrate off of this to decrease withdrawal symptoms."
Addiction counselor Dr. Aaron Weiner also expressed concern that benzodiazepines are over-prescribed, saying that they should only be used as a short-term solution to serious and immediate crises.
"Generally speaking, these medications are more indicated for say acute moments," Weiner told Salon. "Like if someone has just lost a family member or there's something urgent that has just gone on, but not so much for the chronic stuff. The tools do have a place in time, but I think that they are over-prescribed because it can be alluring, both from the provider perspective who wants to provide a solution, and then also for the patient."
He also urged anyone withdrawing from the medication to do so under medical guidance, since in extreme scenarios the process can cause cardiac events or seizures.
One thing I have noticed, during my own withdrawal experience, is that the nature of the anxiety I feel is a little different than its earlier incarnations. In the past, I was easily triggered by stimuli which reminded me of past traumas, and that in turn caused the anxiety. Now the anxiety is constantly there, beneath the surface, regardless of whether a specific trigger can initiate it. I asked some of the experts if this is normal.
"Definitely," Magavi told Salon. "Some individuals experience new-onset panic attacks, which feel completely different and alarm them. Most individuals experience an exacerbation of their panic and anxiety symptoms and may even experience frightening derealization or depersonalization."
The reason, Weiner explained, is biological.
"Generally speaking, anxiety is caused by something in the environment, seeing a threat, or sometimes it's being on edge. If you've been on edge for so long, because you feel like something bad is going to happen, that can become a habit, but what's going on with the withdrawal is that it's purely driven by a biological change and imbalance of chemicals in the brain that is in the process of being corrected slowly."
Magavi added that it is important for people struggling with withdrawal to try to confront their inner demons, the ones that caused their anxiety condition.
"It is extremely important to remain introspective, confront insecurities and weaknesses, and heal from trauma," Magavi said. "This allows individuals to work on the root of the problem and could considerably decrease the amount of medication they warrant or the dosages they require. To what extent does one need to undergo an introspective psychological biography to effectively address these issues? I advise all individuals to engage in therapy. I provide therapy during sessions, but individuals benefit from meeting with a psychologist and psychiatrist concurrently to expedite healing and recovery."
* * *
This was not an easy article for me to write (and I've had the displeasure of interviewing Ben Shapiro). But from a strictly idealistic standpoint, I want to make sure that no one who experienced anxiety like I do ever has to endure my current physical and psychological ordeal. On a more personal level, though, I am tired of feeling like I should be ashamed of my dependency.
Or of my anxiety.
Or of my autism.
Or of any of the things that make my neurology, my psychology, different from the norm.
I did nothing wrong. I was not wrong for being born autistic. I was not wrong for developing PTSD after being traumatized as an autistic person (and, on some occasions, for being Jewish). I was not wrong for seeking medical help so I could improve my life. And it was not my fault for developing a dependency on the drug I was told to take by doctors.
I am not ashamed. And if you suffer from anxiety, if you are autistic, if you were prescribed a medicine that later became toxic for you, you should not be ashamed either.
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