On the flight into Boston I paged through a newsmagazine featuring the overdose death of mega-talented actor Philip Seymour Hoffman. He reportedly had had a drug addiction problem in his early twenties and in an earlier interview was quoted as saying that he would take “anything I could get my hands on. I liked it all.” He and his longtime girlfriend and mother to his three children separated at the end of 2013 and she had custody of the kids. Earlier in the year he had relapsed after decades of sobriety and admitted himself for rehab. He was there for ten days. I was curious to know if he had been given a benzodiazepine when he was discharged. Hoffman died of a heroin overdose. Some people made judgmental comments about his death: “How could he? He was so talented and successful?”
Six years earlier I might have been one of the people who asked those questions. Not anymore. I understood the destructive power that depression and anxiety can have and how dependence on a drug can set you free of your own thoughts, at least for a little while. There’s the hook. The “little while” turns into a month, then a year, then one more year. You can no longer imagine feeling fine on a daily basis, or even remember what your life used to be. Once you can no longer hold the hope of feeling like things will get better, there is no motivation to stay away from drugs like Klonopin, even though it’s supposed to be prescribed as a very short-term medication.
I peered out of the window as the plane banked over Boston Harbor. The water was choppy and dark gray, roughly slapping the edges of the concrete piers. Winter cold had stripped the trees bare and long late afternoon shadows from the buildings made the city below seem as tired and dispirited as I felt.
I held Larry’s hand as the plane bounced down on the runway and the force of the brakes seemed to push me forward to yet another new course of treatment, another psychiatric opinion, another therapy method, another desperate grasp at finding a solution to my state of mental distress. I didn’t really want to be there. It had been an emotional respite to be “nowhere,” just thirty-five thousand feet in the sky, moving at five hundred miles per hour, as if I didn’t belong on the earth.
Larry and I checked into the hotel and soon after Dr. Mona Lisa arrived in time to go with us to meet with Dr. Jerrold Rosenbaum. It had already been a long day and I was feeling anxious about having to talk to a new psychiatrist. I didn’t want to appear too crazy and had a tremendous fear that he would recommend I be hospitalized again.
Dr. Mona Lisa knew how incredibly busy Dr. Rosenbaum is, but after he looked at my thick chart, his curiosity was piqued and he wanted to take me on as a patient.
Dr. Rosenbaum oversees a department of over seven hundred faculty members, including psychologists, psychiatrists, neuroscientists and well over a hundred trainees. He has written or edited twenty books and many scholarly articles with a special interest in people who suffer from previously treatment-resistant psychiatric problems. After Dr. Mona Lisa explained all of that to me, I felt very honored that he would consider seeing me as his patient. Because of his leadership role and caseload, Dr. Rosenbaum is unable to accept new patients.
I felt both comfortable and in very good hands as soon as I met this attractive man with a gentle, sincere voice and manner. I could see as he sat across from me that he wasn’t going to treat me like a powerless child, but would expect me to participate in my own care. I felt something I hadn’t known in a long time—hope. My shoulders relaxed as I sank back into my chair.
That night, in the hotel room, I was certain I would be able to sleep calmly since I was free of the noise of the psychiatric ward at UCLA, but that wasn’t to be. I had a powerful anxiety attack that made me jump to my feet.
Our hotel room had a bathroom with two doors, one leading to a small sitting area and the other into the bedroom. There was also a door between the sitting area and the bedroom. I could walk a full circle, from the sitting area through the bedroom, through the bathroom, and back to the sitting area. As I paced this circle, my mind ran rampant, my heart beating wildly. I was consumed with worry about heading into yet another program or treatment. My body felt like such a dumping ground for too many medications that had not helped me. I could only guess at what Dr. Rosenbaum would try. Could I survive yet another round of trial-and-error? I didn’t want to merely be tranquilized as a way out of pain, but I was losing hope that anything would help.
As it turned out, Dr. Rosenbaum’s first suggestion was not for another medication. It was for me to stay in the Boston area for the next three weeks and start treatment rounds of electroconvulsive therapy there at Mass General. The words made me gasp. Having a convulsion because of electricity coursing through my brain seemed like such an extreme measure.
Dr. Rosenbaum assured me that it wasn’t like the horrific treatments that actress Frances Farmer went through in the 1940s, or the ECT depicted in the film One Flew Over the Cuckoo’s Nest. There had been decades of study and modernization of the technique since then and ECT treatment was now relatively low risk and shown to be successful for depression like mine that wasn’t responding to regular medications. Still, my legs bounced up and down with nervousness and my palms broke out in sweat with the thought of having a seizure induced by electricity.
I could see that Dr. Rosenbaum was studying my every movement as I sat across from him in his office. He took the time to explain to me all of the long-range side effects of the huge amounts of benzos I had ingested in the past year and why continuing on them was not advisable. He also voiced his concern about my having been on so many antidepressants, none of which had helped me. Dr. Rosenbaum felt that my severe treatment-resistant depression was affecting my overall health and he was greatly concerned about my having suicidal ideations for over two years.
ECT has a strong and immediate effect on the neurotransmitters in the brain. It’s the minute-long seizure that changes the neural networks, the biological abnormalities, which are associated with depression. The modified seizure would make changes in the brain centers that control moods, appetite, and sleep. Typically, patients need six or more treatments to see a noticeable improvement.
The main side effect of the treatments was a possible loss of short-term memory for a while; usually patients can’t remember what happened in the time right before the treatment. The stack of release papers and informed consent forms that I had to sign prior to having an ECT treatment was intimidating, especially when I had to struggle just to keep our hotel room number in my memory. Wading through the “what could go wrong” pages on these forms was more than I could absorb. I signed everything, only reading some of it. In the darkness of depression, you give up caring what they do to you. You are willing to try anything to get out of the constant pain.
I was sent back to the hotel with instructions to have no food or liquids after midnight. I couldn’t take any medication at all, but benzodiapenes especially were not permitted because of how they might interact with the general anesthesia. I had been counting on being able to take a Klonopin to help minimize my apprehension and anxiety about the first treatment early the next morning. All night long I paced the oval track from the bathroom to the sitting area to the bedroom, around and around.
The next morning, a nurse had me change into a hospital gown, took my blood pressure, checked my heart rate with a monitor, and inserted the IV needle. It was an assembly line atmosphere, with a patient before me, and another after me. I waited my turn, wary of how casual the technicians were. What if they make a mistake? What if I lose all my memory and become what I fear most, a woman who can’t take care of herself?
Soon I was wheeled into a room of the outpatient psych unit of Mass General, where a doctor, nurse, and anesthesiologist were waiting. The nurse placed thick padded straps across my upper chest and on my legs above my knees, which secured my body to the bed as the doctor explained the procedure one more time and how quickly it goes. Two electrode pads were placed on my head, one on each temple. The doctor said about sixty seconds of electrical current would pass through the lobes of my brain, causing a controlled seizure.
He kindly rested his hand on my shoulder and looked in my eyes as he talked. The nurse put in a mouthguard to keep me from biting down hard on my teeth or my tongue during the seizure. Then the anesthesiologist added the “knockout” drugs to my IV. I was told to count backward from one hundred, but I don’t remember doing that. I was out.
When I came to, it took a few minutes to understand where I was and what had taken place. A nurse was asking me my full name and if I knew what day of the week it was, to make sure that my memory was intact.
The first physical sensation I felt was that the bed below me was wet and I was uncomfortably damp from the waist down. It took me another minute to realize that I was lying in my own urine. I couldn’t believe that had happened. No one had told me to make certain that my bladder was completely empty before changing into a hospital gown. I was humiliated to the core.
I was tired and spacey and only wanted to wash up, get dressed, and go back to the hotel. The muscles in my legs felt as shaky as if I had hiked a steep hill. My arms also shook, as if from muscle fatigue.
My short-term memory proved to be fine, so I was released for the day and told to come back in three days. This was to be my life for the next eighteen days: have a treatment, recover from it, and then return for another. I had short appointments with Dr. Rosenbaum so he could see how I was progressing. I didn’t notice much change after the first three treatments. He told me that people with profoundly severe depression, like mine, might not feel the remission of symptoms for at least six to twelve treatments, maybe more.
After the fourth ECT treatment, Larry took me back to the hotel room to rest. I was starving. I hadn’t had a bite to eat since an early dinner the night before. I ordered a stack of pancakes with a side of eggs from room service and looked forward to having a big breakfast.
We set up the room service table near the window to get the full effect of the little bit of Boston winter sunlight that had found its way to our side of the building. I buttered the pancakes and poured syrup over the top. When I took my first bite, I almost choked on the putrid taste. I had to spit it out on the plate. The pancake tasted the way raw sewage smells. I pushed it all away from me. I told Larry that someone in the room service kitchen had played a disgusting prank on me, somehow making the pancakes look normal while adding some type of rancid and nauseating ingredients that would make me violently ill. The room service manager apologized profusely, saying that he was astounded that something like that had happened, and said he would send up another breakfast right away.
The second serving of pancakes tasted as bad as the first batch.
Larry decided to try the pancakes himself. It was obvious that he didn’t share my experience of the taste at all. He said they were delicious and ate the whole stack.
I tried a bite of the eggs and had to spit those out as well. A wave of panic set in.
What had happened to my sense of taste? I definitely couldn’t eat anything on the plate. All I could do was hope that it was a temporary side effect of the ECT treatment and that it would go away. I had been warned about the risk of memory loss, but not about having my sense of taste go haywire.
The next morning Dr. Rosenbaum responded that in all of his years at the hospital he had never known a patient to have their taste buds altered through ECT treatments. Dr. Mona Lisa had never heard of it, either, but said she would look into it. We sent emails to all the doctors and scientists we could think of, who in turn forwarded them on to every professional they knew. No one had ever heard of taste buds being so adversely affected.
I did notice some subtle improvement in my state of mind. I wasn’t sure if it was the ECT treatments, or having my freedom back after being locked up in UCLA’s psychiatric ward. I started to look forward to bundling up and taking a walk with Larry around the Beacon Hill area. I found myself seeing and appreciating pleasant things: kids playing, dogs wagging their tails, and boats docked in the harbor. Most noticeably, I found that my suicidal thoughts had been pushed out of the daily lineup of thoughts I had to fight against. The ECT treatments did seem to increase my willingness to participate in life once again.
The major disappointment was being in a great food city like Boston and unable to eat anything that didn’t taste putrid. I had to resort to drinking smoothies mixed with protein powder, because I could just swallow them and not have to taste them. Every morning I had a hopeful anticipation that my sense of taste would return, but each day brought repeated disappointment. I became frightened that this would now be my new “normal.”
The gradual lifting of the fog around my depression was a relief by day, but the anxiety at night was still relentless. I would be able to doze off for an hour and then wake up suddenly with a crushing feeling of fear. It was nearly impossible for Larry to sleep with my constant pacing in a circle. I would feel trapped in the hotel room, but going outside on the frozen streets at 1 a.m. was not an option.
Following my sixth ECT treatment, Dr. Rosenbaum did an assessment of my progress. He recommended that I continue with an ECT treatment program through an outpatient psych unit connected to Vanderbilt University Medical Center so that I could go home. I gladly agreed to the plan. I wanted to sleep in my own bed, surround myself with my four dogs, and see my friends again, which was taken as a positive sign by everyone.
I was missing Ashley and hoping for the chance to reconnect with Wy. Elijah, my grandson, was sending me texts to hurry home. He wrote that he was missing my cooking him pork chops, mashed potatoes and gravy, and corn on the cob. Time used to pass quickly and joyfully when I was out on a tour, but the past three months had seemed more like three decades.
Before I left Boston, we had a meeting with Dr. Rosenbaum about my panic at night and sleep issues. Sleep is paramount to helping the brain deal with depression. Without it, the amygdala, the area of the brain that controls the “fight or flight” survival instinct, goes into overdrive. You use less of the prefrontal cortex, which helps you apply reason and logic to whatever you’re experiencing and keeps you calm.
Dr. Rosenbaum went over a list of suggestions that he calls “sleep hygiene,” which he felt would lead to better rest for me:
1. Go to bed at the same time every night.
2. Rise at the same time every morning, even if you didn’t sleep well during the night.
3. Choose some type of regular exercise and stick with it. Daily regular exercise improves the quality of sleep.
4. Keep the temperature in the bedroom cool, if possible.
5. Don’t watch TV, especially late night news, or look at a computer screen in bed. The light stimulates activity in your mind.
6. Turn out all the lights and keep the bedroom quiet to facilitate good sleep.
7. Don’t review problems in your head. Use a relaxation exercise or think about a recent pleasant experience.
8. Try a warm bath and listen to calming music before bed.
9. No napping during the day. (This one was problematic for me since I rarely slept during the night. Along with the list, he gave me a prescription for a light sleeping pill.)