A Clinical Trial Participant Tells His Story of Depression
There is hope for depression, but it doesn't start that way.
The Frontier Psychiatrists is not, despite the name, only from the perspective of literal Psychiatrists. The name is a reference to The Avalanches song, for one thing! We love to feature the voices of patients (and other stakeholders) in pursuing human health. This is a newsletter about the frontier, where things are full of possibility. It's not just the old, stale, worn out hope, it's about new possibilities for how well you could feel. Today, I have an article submitted by a clinical trial participant. He enrolled in a research study, to evaluate the effectiveness of accelerated transcranial stimulation. This is his story, only lightly edited for ease of reading. It’s a dispatch from that hopeful frontier. Jonathan Rosenberg is the author, and his story is, at times, challenging to read. His pain pokes at us, right through the page. The story starts with a portrait of Jonathan as a young man, and it hurt to read, even knowing he does ok in the end. I know Jonathan because he enrolled in a Study for an investigational treatment. When he asked if he could share his story, I said yes.
I mark the beginning of my battle with Depression starting in the late winter and early months of 2007. I was 20 years old and a student at Rutgers University.
I suffered from moderate and more manageable depression for most of my high school years, also. That was 2001-2005. The difference between what I began to feel in early 2007 compared to what I thought I knew Depression was? It was like night and day. I felt a new and sharp intensity. I felt disconnected from my college housemates and the world. It began as a mild feeling off, just down, mixed with the sense that I lacked any ability, energy, and enthusiasm to lift or change my mood.
As January turned to February, my panic began to grow. I knew I was heading in the wrong direction and could not correct my course. Even forcing myself to keep working out and running brought little relief. My housemate Ben asked me why I suddenly began to drink wine every night, and I do not remember giving him a good answer. I was trying to numb my pain and the unrelenting feeling of despair that stuck with me from the moment I woke up until the moment I fell asleep. I do not know when my housemates began to realize that something was wrong with me, but by March, it was becoming clear that my withdrawal from social life was more than a phase. My constant look of anxiety and sadness was not going away. I was suffering, and I could not hide it. I managed to drag myself to the Rutgers Hertado Center for Student Medical Services and was prescribed Wellbutrin.
I was told by the nurse that it increased the likelihood of having a seizure, especially with alcohol, but truthfully, at that point, I would have been happy to have a seizure. I took the meds but did not feel any better. I looked up a therapist in nearby Highland Park and made it to one session. I do not remember what exactly we talked about, but I think I brought up my parents’ challenging marriage. Nevertheless, I remember leaving just as anxious, withdrawn, sad, and miserable as I was when I came. I missed the subsequent few sessions until the therapist (mercifully) pulled the plug. The therapist decided that, since I was unable to make the sessions, it was best we stop the therapy for now.
Truthfully I was relieved, it was one less thing I had to drag myself to. Going to my classes was getting very difficult for me by March. I forced myself to go, but I felt so isolated sitting in a room of social and happy students while this invisible illness plagued me. A disease that was making every waking moment absolute psychological torture. No one can successfully convey to someone else who has not suffered severe depression what severe depression feels like. It is a combination of feeling lost in your own life, totally cut off from everyone else, while aching in agony as every slow-moving moment pains you. Every moment you are telling yourself— over and over— hold on, hold on, this pain will not last forever. But this pain is so strange and unlike anything you experienced before that every single day is a battle to hold on. The pain is your brain hijacked. You no longer have any interest in the things you usually do. But it is worse than that. You stop watching the games—if you love a hockey team, like I did. If you like going to concerts, you stop going. If you like being around your friends, it becomes too painful to see how lucky they are not to have this terrible deterioration of spirit, and you avoid them to minimize that pain. That only alienates and isolates you further. The pain is both a positive and a negative, an added excruciating feeling of isolation, loneliness, and misery. And the pain is a negative, a lack of interest and energy in things that interest you. I think William Styron once described it as a “brain storm.”
It would be a better name than depression.
People do not understand why people with severe depression withdraw and isolate themselves, but the reason is simple. The pain of feeling depressed and alone is slightly better than the pain of seeing your lucky friends and family be able to laugh, joke around, make plans, and live their lives. Once the depression sets in, anything other than lying in misery in your isolation becomes a challenge that you desperately try to get through without thinking about suicide and ending the suffering.
Being around people only makes depression worse. It only amplifies how far away you are from them, even if you are sitting 3 feet away. Despite how hard it was to meet my academic and social demands, I forced myself to join a few of my housemates to visit a friend in Boston sometime in late March or April. For two and a half days, I suffered more because of the intense social gatherings and the good times I could not participate in. I dragged myself in and out of the house, which was pretty frat-like.
I’d call it a casual party house, similar to what I lived in at Rutgers. I put myself in a situation where I was forced to be around 10-15 people all day for 2 days who were happy and optimistic. Those people probably could not understand why I looked distant and in despair. No one confronted me, but the vibe of something being wrong with me and my pain was palpable. So palpable, in fact, that when I entered a room of 10 people, the people began to leave one by one…until I was alone again. I could do nothing to explain myself. It was obvious to these people who did not know me that I was going through something. I was not meant to be in my social setting, and my despair oozed out as negative, unfocused energy. I was avoided—like I had the plague. When I decided to step out and walk around the streets of Boston on that cloudy, rainy Saturday, I remember feeling so lost, lonely, and hurt, and I could not find any way to lift my spirit.
I walked for most of the day, and when I got back to the house, I foolishly decided to take LSD, thinking maybe it would lift my mood. It definitely did not, and when I happened to talk a little to one of my mutual female friends, we decided to make out in a room with 3-4 other people there. Eventually, everyone left except me and the girl. I called her “Alice,” and she encouraged me to take things to the next level. She got naked. I was still extremely depressed, even under the influence of LSD, and I had no libido at all. When she saw the hesitation in my face, she told me in a mocking tone to put “my d*ck in her v*gina.”
And they say romance is dead!
She was not only not that attractive to me, but the severely depressed? We have no juice, no mojo, no desire for sex. I had no erection and could not perform for this girl who was turning hostile, perhaps because of her insecurity that I could not get going because of her appearance. Eventually, she got dressed and left the room. When I got dressed and left the room, I saw Alice whispering and giggling with another girl, who was no doubt making fun of me. Truthfully, it hurt, but my pain was already at a high level, so I ignored them and walked away from them. The next day, when I told my two housemates from Rutgers what happened, they kept their distance from me the whole drive back to New Jersey. I still remember my roommate D making eye contact with me through the rearview mirror as I sucked on an unlit cigarette on the way back. He looked concerned and uncomfortable. The trip to Boston was a failure and the lesson? When you are already in a severe depression, please do not push yourself into a social situation with LSD or other drugs— it only amplifies suffering.
I meant well when I decided to go with my friends to Boston. I thought that was better than staying at the house at Rutgers alone. But truthfully, I would have been better off alone than exposing my pain and suffering to another group of college kids who did not know me when I was not depressed. When you are depressed, you get a lot of well-meaning advice to get better, like going out and exercising, spending time with friends, eating healthier, and just trying your best to behave like you normally would under different circumstances. But the sad truth is you are not the same person when you are in a severe depression. You feel too lethargic to exercise and unmotivated to do anything requiring effort and concentration. If you are eating at all, and I mostly was not, the last thing you want is healthy food. And that’s when people turn on you a bit. When you slow down, isolate yourself, and self-medicate with alcohol or other substances, you get blamed for worsening or even bringing on the depression itself. But in reality, you are just trying the only way you know how to subdue the agonizing pain for a couple of hours at a time. I remember my family thought I had a drinking problem during that spring and early summer. But the real problem was what was causing me to seek the numbing elixir daily. I preferred my family to think it was an alcohol problem. At least that was not depression. Depression seemed weak and pathetic, and drinking seemed more masculine. But after a while, I was able to admit that drinking was not the cause of the problem but rather the effect. I had an actual mental disorder that manifested itself with tormenting anguish. My “brain storm” did not relent. It went from morning to evening and back again the next day.
By the time April, 2007 came and the semester began to wind down, I began to drink more heavily every day. I started most days with 5-6 cans of Coors Light to numb the pain, and I usually had about 12-18 cans per day. In one 24-hour period, I once finished a full 30 boxes, but usually, 12-18 was enough. This may not be the right thing to say, but it is the truth: drinking large quantities of alcohol was my only escape from the suffocating despair and isolation I felt while sober. I was in excruciating mental pain that would not relent, and I was grateful that at least alcohol numbed the pain. For me, that was better than taking pills that did not work despite the assurances by doctors and WebMD. My housemates knew something was wrong, but no one asked or said anything about it. So I kept drinking every day for most of the day, and that is how I got through the entire month of April.
Once May of that year came along, it was even worse. Now, the sun was out, my peers were crowding the streets and parks. The long days got longer. All I really wanted to do? It was be dead. I mean that sincerely. The feeling of severe depression is excruciatingly painful. It is suffocating; many people end their lives. Even though I have survived many depressions, I believe it was by pure luck. Maybe, a tiny flame in my heart does not want to be extinguished, as well.
I remember going back and forth from my parents' house in Paramus to the house my roommates and I agreed to rent for the upcoming year—how full of promise 2008 was, in theory. Living with the pain I was in, it was hard to stay in one place long, so I thought a few days at home might make things better. It did not. My poor mother could not understand what was happening to me. She was upset that I finished one of her old whiskey bottles and replaced the contents with apple juice. Drinkers, like myself that summer, convince ourselves “no moms would notice.” I was incorrect. She noticed. Quickly. This is not a good strategy, I can attest, from the sober vantage years of hindsight.
My older brother and uncle thought I “just” had an alcohol problem. I let them believe that, because that story was less embarrassing than admitting I had depression. When I finally admitted that depression was the problem? My older brother could not understand or relate. He tried to motivate me anyway. He attempted to talk me up. He would tell me that I was intelligent and good looking and had so much to be proud of. This, similar to the apple juice subterfuge, was a poor trick. His warm words could not reach the cold recesses of my heart. Seeing my older brother happy as usual was something that I was jealous of. Why was I the one in the family to get this terrible illness?
We never know why, is now obvious.
As that horrible May progressed, school ended. I managed to get decent grades in 4 out of my 5 classes. I was able to receive an extension on a term paper. I had to show the professor a bottle of my meds to prove I was not lying about my illness. I was happy to show him. He told me his daughter also suffered from Depression. To this day, I am grateful for a political science professor who was kind.
I drank heavy through may into June. Stories about depression seem to naturally include “I kept drinking,” in the thick of it.
Usually half of a 3 gallon jug of wine would do the trick. Sometimes a bottle of vodka mixed with soda or juice made an appearance. Of course there was beer. I drank everyday. I drank from the second I woke up throughout the day. Even that felt like too much time being sober while suffering with depression.
Between May and June I split my time between New Brunswick, and home in the north in Paramus. Either way, I drank heavily. Even though I was 20 and 6 months away from being able to purchase alcohol legally, I had no problem getting alcohol from anywhere I wanted, including big stores. When I was desperate, I am ashamed to admit, I helped myself to a few bottles of wine from the local synagogue. Mostly, however? I purchased it.
I was in the same painful rut I felt back in February. But the Depression was still there. I kept drinking everyday. Finally, in late June, I felt that it was time to at least take a break from the drinking and try one of the antidepressants I was prescribed. I could not do both at the same time, my doctor told me.
I stopped drinking, and took Cymbalta. By the 2nd day I felt that it was giving me side effects like slight headache. To me that felt like it was doing something. Miraculously, and I know antidepressants are not supposed to work that way, I felt joy— almost elation— on the 3rd day. It truly felt like my depression had lifted. I felt again motivated to buy jeans, and finish my American foreign policy research paper that I got an extension on. In the end I got a B on the paper. Some clinicians may worry that a sudden transformation from depression to feeling very good may be a sign of bipolar disorder, but that is a technical concern. The point—for me— is after 5 painful months? My depression was finally over. I remember listening to Creedence Clearwater Revival with my new clothes on. I headed back down to Rutgers to my house to join my friends in the summer and get ready for the upcoming fall 2007 semester.
When I got back to the house on L. street in New Brunswick, just off campus from Rutgers University, my roommates must’ve been surprised. I was smiling and full of enthusiasm. Not at all like the suffering miserable alcoholic they got used to seeing in the previous 6 months. Just weeks before the end of summer and beginning of the fall 2007 semester I began working as a waiter at a diner about 2 miles away from campus and my house. Little did I know that working at this diner would turn my unlucky romantic fortunes around. At the diner I met a girl, an incoming freshman to Rutgers, we’ll call her Tiffany. She was also working as a waitress. Tiffany was a sweet and literary. She loved books and writing. In the first few weeks I got to know her as a coworker she seemed to fall for me. We made plans to hang out. The first time she came over I am ashamed to admit my antidepressants made it tough to “get going.”
It was disappointing for us both, but I believed if I just stopped taking the meds for a short while I would be ok and able to answer the call of romance. The next time Tiffany came over I tried something else too. I smoked a little Marijuana and I was off to the races. I was able to perform for Tiffany! I didn’t last as long as I’d like. For the next few weeks I kept to the same routine and smoked before I had sex with Tiffany. I thought things were going well. I made one of the bigger mistakes of my life when Tiffany wanted to make our dalliance official. I was scared that I might fall in love with Tiffany. She was catholic. At that time, I was still taken with the a sense of loyalty to both my jewish mother and our religion. Dating and especially marrying a gentile was a sin. I was too scared to transgress. After spending a wonderful month or two with a beautiful, smart, Tiffany? I let her go.
I still regret it, 15 years later.
Sometimes, it seems like a smart woman will just fall in your lap. For me, it never really did again. Not yet, anyway.
During that fall semester of 2007, I was happy. I made it to all my classes, went tailgating to Rutgers football games. This is to Rutgers what high tea is to the British. I made it to a concert where I saw the Queens of Stone Age. The opener was The Black Angels, out of Austin, Texas—still my favorite band. I felt like my depression earlier was a bad dream. I hoped it was just an aberration— A one time terrible reaction to a mix of drugs, unrequited love, and not being able to find the right med in time. For most people, when they get a taste of how awful severe depression is, they dread that state for the rest of their lives.
One time was bad enough. It was just one bad experience. Depression was behind me. It returned in the late winter, 2008.
I stopped caring about the things I had enjoyed. I stopped watching hockey. I stopped going to concerts. I had to drag myself to my classes. I also started seeing a psychiatrist who did help me. During that next dance with depression, my hope was shattered. I was suffering a relapse. I knew, then, in my heart that this was going to be an illness that would haunt me throughout my life. I knew it in my gut. Thankfully, I didn’t resort to drinking. Maybe I was a little stronger, or wiser? The truth was probably that the intensity of the round two was slightly less awful than the first time. The first episode was a category 5 hurricane. The second one was a category 3. With help from my psychiatrist I got through the relapse and I was ready to start working and going to classes in the fall of 2008, the beginning of my 4th and final year at Rutgers University.
During the good times, I enjoyed. I enjoyed going to football games and tailgating with my friends. I enjoyed going to bars and playing intramural hockey. I actually enjoyed classes. I enjoyed the feeling that I was growing, and becoming independent.
In 4 years in New Brunswick, I started to feel comfortable running in the park and playing tennis with my friends. Maybe that’s one reason why, as graduation approached in June of 2009, I started to feel more numb. I had just returned home to live with my parents. I wanted the situation to be temporary, but I had no real plan moving forward. I remember saying to my mother on graduation day, just a month or so earlier, that despite my difficulty with the two Depressive episodes in college I was finally ready to stand on my two feet. Only a month later I was down and haunted by emptiness and anxiety. My father remarked to me several times that month: “It must be tough to leave college and return home.” My father said that based on how I looked in his eyes. I was sadder. I was more distracted than I realized. It took only another month for my outward appearance to match my internal state. I was going through the motions that June.
I ran a few miles several times a week and I worked out at a gym in nearby Teaneck New Jersey. I also got a job working at a real estate company’s customer service office in the Bronx that summer. As June turned into July, I felt that familiar descent. I could do nothing to stop it. I cried sometimes during lunch at work.
I kept showing up until the middle of August. The Depression finally slowed me down for good. I gave up working out and running, and I basically stayed in and resorted to drinking to numb my pain again. I remember drinking a lot of beer and watching sopranos from beginning to end to occupy the time during the day. I remember turning on a Rutgers football game and feeling so utterly removed and distant from that institution I only recently graduated from. This depression, which started in July, luckily eased just a bit in October, and my friend offered me a job at an online toy company. Even though I was not near healed from my Depression, I found the courage to start the job anyway, and miraculously a few days into the job I felt a lot better.
I worked at this job for about a year and a half until February of 2011 when I was hit by the big one. This depression that lasted a full 10 months of agony.
To be continued…
Jonathan’s story ends well, I promise. But his portrait of how disabling the depression was? He chose to start this story with it. He has more to say, stay tuned!
This is the reality of depression, which should really be renamed “frozen in agony”. These scenarios remind me of my own, and show how much well meaning “advice” needs to improve and how badly society still treats people who are suffering from mental illness. We are at a point now where it’s society that needs to change, the suffering person has done more than enough of the “wellness” spadework to compensate for the unkindness that they face every day.