This is the second installment in a three-part series about being prescribed ketamine treatment for a traumatic brain injury. You can read the first installment here.
If you’ve ever taken an upper, you know how glorious the climb can feel. When the ketamine hits, I feel a tingle in my body not unlike a high dose of ADHD medication taking hold if I had first dissolved it in a crisp glass of champagne. Suddenly, I have so many thoughts. I look down at my life as though from a distance and see patterns I’ve never seen before, actions linking one event to another. I am generous on ketamine. I think I could forgive anyone who’s wronged me if they ask nicely. I think I could forgive them even if they didn’t ask at all. I try to ignore the chemical drip of the medicine in the back of my throat, although in my altered state, even that is a slight comfort, as though it’s evidence of my reaching for something better, and the possibility of eventually holding it.
Floating on the waves of ketamine, I suck on a lollipop and wonder why I don’t allow myself joy. Before I can finish the thought, the answer comes to me: because I have convinced myself that if I don’t let myself get excited, then I won’t be as disappointed when something goes wrong. But that’s not true because when something goes wrong, I’m disappointed all the same, no matter what I expected. The dread isn’t keeping me safe. I’m not keeping myself from heartbreak this way. I’m keeping myself from joy.
In my notebook I write: I don’t want to be afraid of how much I want something. I want to just want it, without reservation.
And, somehow, through tripping on ketamine in a doctor’s office two hours away from home, I know I am getting closer.
The addition of more treatment, which the doctors recommend because I have not seen the level of improvement they're looking for, hits hard. I am brought back to every moment of my life when medical treatment has had to be prolonged because I am more fucked up than we thought. From doses of migraine steroids to a second surgery and round of radiation for cancer at 22 that spread to my lymph nodes instead of tidily containing itself to my thyroid to the brain injury that refused to heal itself and landed me in this office in the first place. My mind is whirring, from the emotional fallout of this revelation to the financial implications. Although insurance covers my ketamine treatment, I’ve had to drive 480 miles per week to the appointments and the accompanying costs have been substantial. On top of that, I haven’t been able to work on the two days per week that I have treatment, which, as a person who relies on freelance work, has changed my financial situation. Oh, and I’m getting married in five weeks.
Originally, I was prescribed four weeks of insurance-covered ketamine treatment (via the off-label use of the nasal spray Spravato, which is also known by its generic name esketamine, a ketamine derivative and was approved by the FDA to treat treatment-resistant depression in 2019). But, as is often the case with treating chronic illness – in my case a traumatic brain injury as a result of a concussion three years ago – the plan has changed. On one hand, I’m glad my doctors at Kaizen Brain Center, in La Jolla, CA, where I’m taking Spravato are honoring the science and my symptoms in their recommendation for four more weeks of treatment. On the other hand, I am devastated. I have been fighting this brain injury for much longer than I ever expected and the addition of a few more weeks of treatment is painful.
I am exhausted. I don’t know how I’m going to fit four more weeks of this into the month before my wedding. Alex, my sweet fiancé, reaches across the table and stills my fevered calculations. We will figure it out, he says. I nod but we both know that inside I am thinking the same thing I am almost always thinking: I am so broken.
For many people struggling with conditions such as depression and post-traumatic stress disorder, ketamine therapy is a lifeline. But it isn’t without its costs. I am emotionally and physically exhausted. I am crying at the drop of a hat then smiling more than I have in years. I am pointing out small beauties (that tree! this coffee! the sunset!) then collapsing into a long afternoon nap. I text my best friend: Why am I so exhausted? Then I answer my own question: growing new neural pathways, and trying to calm my inflamed brain is really tiring. The protocol I’m following, which calls for treatment twice a week, has taken over my already crowded life, which is spilling over between managing my chronic illness, working, and planning my wedding. And though I had been eager for the four weeks of treatment to end, I’m now equally worried I won’t be able to continue, either because of insurance issues or the inability to transfer care closer to home.
For many ketamine patients, the treatment is a lifeline. Amber*, 39, started intranasal ketamine after decades of treatment-resistant depression. Her insurance company initially approved ten treatments over five weeks and she’s currently trying to get them to approve more sessions. In the waiting, there is fear. Ketamine has changed her life. When she explains it, Amber says it has lifted the cloud. Her spouse says she’s a different person. It has quelled her suicidal ideation. She is able to cope with things that before seemed impossible. “I don’t know that I can think of anything crueler than having this experience then having it stop,” she said. “Like getting a glimpse of what I assume 'normal people' feel like and then being like, okay, it’s over, insurance says no.” I know what Amber means. I also feel at the mercy of medical bureaucracy, as do so many chronically ill patients in America, which is six in ten of us, btw. And the lack of a solid plan for what’s next can be especially difficult for patients. I want to know what’s next – in an unruly body, a schedule is often the only solidity I have to cling to.
Most of the time, the questions I ask doctors and therapists are all different forms of the same question: is this anxiety about change normal? When I ask Quincee Gideon, a Los Angeles-based psychotherapist who specializes in chronic illness, about the terror I felt at the unknown future of my ketamine treatment, her answer was easy and unequivocal: yes.
Gideon explains that patients with chronic illnesses like treatment-resistant depression can be especially sensitive to change and uncertainty in plans. “You’re re-experiencing traumatic medical experiences where you need something different than the average person needs,” Gideon tells me. “That’s painful for anyone but extra painful for people who are getting that feedback a lot.”
Another factor that affects the efficacy of ketamine treatment is the environment in which the drug is taken. “It’s about how safe you feel,” Gideon said. “There has to be a space for someone to experience the full range of what’s possible.” I feel safer at Kaizen than I ever have in any other medical setting, which is one of the reasons I’m so hesitant to leave. How can I trust my untrustworthy body to be in a dissociative state anywhere other than the safest place I know? I am torn between the comfort of Kaizen and the feasibility of another month of 240-mile round trips.
In the end, I decide the traveling is too much, and I start to look for another clinic. I know I’m lucky to even have these choices, especially living in a country where healthcare isn’t guaranteed. I know I’m privileged, even as I know healthcare shouldn’t be a privilege. I have flexible working hours so I can take entire days off for treatments. I can afford to put gas in my car and pay the tolls of the roads between La Jolla and Los Angeles. Even as I dread switching clinics, there is the privilege of having clinics to choose between. In other countries, and even other states, there aren’t.
As I try to find a new clinic, one place quotes me $1,000 out-of-pocket per session; another says they can start me in three weeks, which would create a gap in treatment that could possibly erase the progress I’ve made so far; and a third has me undergo a psychiatric evaluation where the doctor types the entire time and never once looks me in the eye as I share the worst parts of my life. In the middle of this, I am in crunch mode for wedding planning and I wonder how anyone expects me to answer emails about table settings when my brain is on fire. I tell Alex: I am running out of time and he puts his hand in my hair and says oh, honey.
In my ketamine notebook, I write: nothing in my life is untouched by this. This, being my aching body. I wish I lived inside another, one that walked through the world without the constant need for assistance and accommodation.
In the end, I choose a new clinic 30 minutes from my apartment in Los Angeles. The medication is covered by insurance but the appointment isn’t, so each one will cost me $100 plus the cost of Ubers there and back. It’s expensive but I weigh it against the cost of entire days spent in the car to and from San Diego and cross my fingers.
I am four weeks into treatment, I can feel the changes – the coils of my anxiety are slowly loosening. I am letting things go instead of obsessively trying to control the world around me. I am belly-laughing with my niece and nephew. I am walking around my neighborhood and feeling the turn of autumn. There is a level of peace that I wasn’t sure I’d ever find again after my brain injury and I am hoping that the proximity of the new clinic alone will allow me to relax even further into the treatment. I am hoping that the next four weeks of treatment will get me ready for my wedding. I am hoping that the new clinic is a place I come to feel is even half as safe as Kaizen. This is the drumbeat of the ketamine: I am hoping. I am hoping. I am hoping.
If you are experiencing anxiety or depression and need support, please call the National Depressive/Manic-Depressive Association Hotline at 1-800-826-3632 or the Crisis Call Center’s 24-hour hotline at 1-775-784-8090.
*Names have been changed to protect privacy.