I Have a Brain Disease. It's Very Straightforward.
Typically I do not share much about my personal life. But I have one story that feels too apropos not to tell. It's about my high-stakes but totally straightforward experience of "brain disease."
The model for understanding addiction that currently dominates policy discourse is a biomedical model. In this model, addiction is a "chronic relapsing brain disease," and the most important areas for innovation are in pharmaceuticals and brain imaging. I have a lot of problems with this approach, and find that in a treatment context it does more to confuse than clarify. So I'm going to compare my own brain disease– from diagnosis through treatment and long-term recovery– to its forced analog of addiction. My fellow treatment counselor and writer William White has done the same with his experience of prostate cancer, since cancer is another common metaphor for addiction as a "chronic relapsing disease." White and I were both treated far better than our patients in addiction treatment, which highlights how disingenuous the biomedical model can be.
Diagnosis
I literally woke up one morning in 2023 with reduced hearing in my left ear, along with a subtle staticky sound. An audiology test confirmed I had lost some of my hearing on that side only. The Ear, Nose and Throat (ENT) practice ordered a "head MRI" to rule out a brain tumor– a possible but unlikely cause. The MRI was like "well, actually..." A mass by my left ear, about the size of an atomic fireball candy, was to blame. The good news was that it wasn't cancer, and it was growing very slowly.
Intervention
The bad news was that if left alone, the tumor was going to cause escalating damage and would eventually be life-threatening. In addition to the hearing loss, by early 2024 a local ENT recognized some subtle difficulties with balance as I walked; without noticing, I was already compensating for another kind of nerve damage. For what he believed would be "the best outcome," he referred me to a brain surgeon in Boston (the nearest large city), whom I'll call Dr. C. Dr. C is a known expert on these kinds of tumors and publishes on their treatment in medical journals.
Dr. C was thorough but efficient in our first meeting. One of the only non-clinical questions he asked was what I did for work– and I got the sense that what he was really asking what kind of life he was protecting. I do not support equating purpose with work, but for better or worse, it seems appropriate for me. I would have been more bothered if his one question was whether I had kids. Dr. C told me I was not going to die from this tumor, that it would be just a "bump in the road" in my life. I was hoping radiation would be an option– as opposed to having my head cut open– but he said it was too late to recommend that in good conscience. So I picked a date in January 2025 to go back to Boston and get my head cut open. One of my clients said, "Enjoy the anesthesia!" Being unconscious was certainly the highlight of the experience.
A few days after, Dr. C stopped by my room. He was there to check out my post-surgery MRI, and looked it up from the hospital computer next to my bed. In what he called the process of "scraping" the tumor out, he had needed to avoid harming other tissue– which might mean some of the fireball was still hanging on. But when he saw the image, he practically pumped his fist. "I got 99.999 percent of it," he said, grinning. He told me I should never have to deal with the thing again.
Recovery
Early recovery was rough. Everything was a struggle, including walking, eating, and staying awake. I got two different infections and had to be re-hospitalized and have my head re-cut open to "wash it out." I missed about 2 months of work. But eventually I got to a new, functional normal.
Dr. C wanted another MRI at the one-year mark to check whether the tumor is growing back. So far it is not. And so now, about 16 months post-surgery, it appears I am past this "bump in the road"– though there's no pretending it didn't happen. I am permanently deaf in my left ear: collateral damage from the procedure and a risk I was warned about. The left side of my face is also weaker, and I don't know if it will ever fully heal. I'm on a strong antibiotic for the foreseeable future due to the risk of reinfection.
But all the cliches about perspective and gratitude, for me, have been true. I feel like I got another chance at life– one that might not have been possible without health insurance, savings, control of my work schedule, a partner with paid time off, and extended family who live nearby. I am also thankful, of course, to Dr. C. He is more interested in my tumor than I am– just as I am more interested in addiction than are most of my clients. Our obsession is, hopefully, our patients' freedom to focus on other things.
My Experience of Brain Disease Compared to Addiction
1) Blamelessness: When I learned the tumor had been growing for 10-15 years, I thought back to the time of its inception: my late 20s and early 30s. I imagined I had seeded it myself, being in so many toxic situations and low-vibe spaces at that time. But none of my caregivers has ever suggested my choices had any role. People simply get undesirable growths in inopportune places sometimes. The same went for my complications from surgery: they insisted I could have done nothing to avoid any of it. One of my nurses quoted Good Will Hunting to me– "It's not your fault!"
Responsibility for the "disease" of addiction is a mixed bag. On one hand, framing addiction as a matter of bad luck (or even bad genes) should be destigmatizing: it could happen to anyone, it's not your fault, you just need the proper treatment. On the other hand, many people resent that this framing ignores their autonomy and often comes with pity.
Rosalie Genova
What seems clear, however, is that I got better care and support for my brain disease because no one blamed me for it. I could inform all my clients about my surgery (which I had to) without wondering if it discredited me as a therapist. Everyone involved in my care has been respectful and warm, which is far from the treatment many of my clients receive. I can post about my tumor here without feeling like I'm baring my soul or inviting judgment. That people with addictions cannot have these same assurances shows that we as a society (and a health system) are not fully on board with the "brain disease" model– even for purposes of understanding or kindness.
2) Definitive resolution: I got what most people with addictions want. I did not have to permanently swear off something I enjoy– though I will always miss music in stereo. I did not have to overhaul my identity. My brain had one discrete problem, Dr. C excised it, and I got on with my life. I am not expected to show daily vigilance against recurrence either. Dr. C just wants me to get an MRI once a year. If it ever shows the tumor growing back, he (or someone like him) will rid me of it again.
I envy Dr. C for how clear his task was, and how demonstrable his success. I cannot tell any client that "99.999%" of their addiction has been cut out, much as we both would love that kind of victory. But this newsletter is called A Cure For Addiction because I never say never. I want people with addictions to receive the same quality of care I did. I want addiction to be a "bump in the road" rather than a label of shame, a prognosis of chronic relapse, or a sentence to endless undefined treatment.
