Liss Murphy of Boston was one of the first people in the world to be successfully treated for severe depression with Deep Brain Stimulation, an electrical device implanted deep inside her brain. Now, researchers funded by the Department of Defense are trying to bring that technology to the next level, and use it to treat depression and PTSD. Here, she describes her own experience before and after the operation that changed — perhaps saved — her life.
By Liss Murphy
What is depression? After all this time, I should know. I don’t.
I know some things about depression, though. Depression is the ultimate subtractor, a thief. It erodes just about everything you are, you were, you have, you want. It takes the promise out of your existence. It destroys any semblance of hope or potential or desire or goodwill. Gone, it just is gone. It is utterly corrosive in a way that I still cannot understand.
Depression stripped my life of many things, of everything I knew at the time. It took away the promise of a normal day; the ability to enjoy and progress in my career and interests and relationships; the ability to think.
What follows is an attempt to make sense of the unknowns, of which there are many. But also, what follows is a story of sickness, recovery, healing and acceptance.
What was it about August 13, 2004 that made the day what it was?
I have been told that I’d had depression before. Sure, I’d felt lousy, hopeless, tormented. But I was able to function. I could and did go on, as I needed to. It was not a roadblock.
This 2004 episode was different in every possible way. It descended on me overnight, it seems. Yes, I had been tearful and unhappy for a few weeks leading up to my crash, upset that my husband and I had separated. But so what?
It was the beginning of a complete system meltdown — a mental, physical, psychological, physiological meltdown. A total shutdown.
The details are foggy, though some of it seems so clear and vivid. It was a Tuesday, a gorgeous sunny August day. My office had a view of Lake Michigan. I walked out of the office mid-morning and never returned. My computer was on, my running clothes, sneakers, other personal belongings in my office – waiting for me to return. But I never went back.
One important detail I cannot recall is whether I drove to work or took the subway. I think I drove but … I am hung up on those details now. Because that day I did not just have a mental meltdown; it was the beginning of a complete system meltdown — a mental, physical, psychological, physiological meltdown. A total shutdown.
I can still see each room in my Chicago apartment as it was back then, as confused as I was. Each day, the rooms got more confusing, more messy, until it all blended into a universal squalor. I see images of brown rice boxes on the kitchen counter, dull steak knives, the tips of burning cigarettes against the hue of a bluish-purple sky just before nightfall. I slept on the couch. I stopped running, started smoking. After that day in August, I only left to see my psychiatrist, three or four times a week, until I came home to Boston.
It wasn’t feeling sad. It was feeling nothing. It was a total void of feeling. For two years, I was basically mute — totally withdrawn from everything.
We tried lithium. We tried two rounds of electroshock therapy, for a total of 29 or 30 sessions. No response. In April of 2006, my doctors met at McLean Hospital to say, “Where do we go from here?”
Trials had recently begun for Vagal Nerve Stimulation, and when we asked at MGH about that trial, I was told that I’d be a candidate for that, and also for a Deep Brain Stimulation trial. I suspect they thought that what I was going through needed something a little stronger than Vagal Nerve Stimulation.
If it works, great, and if it doesn’t work, then I have my excuse. I tried all these things. I can leave this world and not feel badly.
The surgery took place on 6/6/06 — an awful date, but no matter. The week before, I had cut my wrist. I was hoping that something would happen during the surgery and I would pass away. But I wanted to give it one last shot. Not that I was hopeful, but it felt like I was at least doing something. I thought: if it works, great, and if it doesn’t work, then i have my excuse. I tried all these things. I can leave this world and not feel badly.
It was a long surgery, eight or nine hours. I was awake through most of it, wearing a metal frame on my head that helped the doctors navigate through my brain. They had me play computer games. The frame felt heavy but the operation itself was painless.
During the operation, they tested the electrodes they’d implanted in my brain, and when I responded, I could tell instantly: a surge of warmth would come over me. Then they’d shut it right off. They just wanted to see if they had the right place.
For weeks afterward, they tinkered with the settings on my device. Was I better? It was hard to tell. It was a very gradual process.
Then, that October, my grandmother passed away. She’d been very close to me, the only family member I had seen in a depression. It was a huge loss. I hadn’t written anything, had barely spoken or done anything, in two years, but I wrote a eulogy for her, and delivered it. So by then, I must have been well enough to do that.
It was just this feeling of ‘Wow. This is okay. I could get used to this.’
The beginning of the next year, in the winter of 2007, I wrote in my journal that I felt peaceful, or calm. It was night, and my sheepdog Ned was in bed with my husband and me. And it was just this feeling of, ‘Wow. This is okay. I could get used to this.’
At the end of 2007, there was a battery malfunction — though I didn’t know it at the time — and I suddenly felt awful. It all came back, and I spent four days in bed, unable to do anything, and ashamed to admit my worst fears. We went to see Dr. Dougherty, the Mass. General psychiatrist working on the DBS trial, and he said, ‘Yes, Liss, we need to replace this battery.’ And I understood that something had happened, and that I didn’t make it happen, and that I wasn’t making it up.
For the first six years, I had surgery twice a year to replace the batteries. It was confusing for a while to learn the ups and downs of the batteries. That 2007 failure was the probably the most dramatic one — except for the infection.
When we moved to rechargeable batteries in late 2012, a line got infected, and then the whole right side of the device got infected, so I had to have brain surgery to remove it. And it took maybe four or five weeks for me to realize, “Okay, I don’t feel good.” I had the benefit by then of having had the system in place for six years, and the accrual of that. Still, it was not good.
I had the re-implantation surgery on Jan. 15, 2013, and that is when it got really ugly. I just didn’t know if I could hold on, and they didn’t know if they could get it back in the right place. There were no guarantees it would work. Dr. Emad Eskandar, the neurosurgeon, said something about how it’s a science but also an art.
I had to wait two weeks after the operation for the device to be turned on, and we didn’t know if it would work. That was dark. But it did work, and when, on Jan. 31, they turned the device on, it was instantaneous.
What does it feel like when you’re “turned on”? You get a sudden rush, like a rush of blood to your face. It’s very weird. It’s very warm. I remember sweating that whole weekend and saying to myself, ‘I’m having hot flashes, this is impossible.’ I remember waking up and my husband saying, ‘Liss, you weren’t sleeping with the covers over your head,’ and I hadn’t even known I was doing that.
It was like I was newly alive, living everything all over again.
And I remember the next morning, after the device was activated, just feeling brighter, or lighter. It was very surreal. I spent the day with my son, Owen. For two and a half months, I hadn’t been able to pick him up because I had an intravenous line in. I hadn’t really been around — I was there physically, but not available. And we went to a story hour. It was a long day, but it was great. That February and March, it was like I was newly alive, living everything all over again.
I don’t know why Deep Brain Stimulation worked for me when it didn’t for some other people. And I feel such incredible guilt over that fact. I do know that I wanted this to be over. I wanted to resume a life. I think that’s what got me through those bad weeks of 2012 and 2013: knowing that there’s another life to be had out there than what you’re currently going through.
I think that’s the most potent thing I had – the perspective of knowing what is on the other side. I had an opportunity to experience that, to know that, before the infection set in, and that gave me strength and a resolve that I did not have prior.
These days, my son is in preschool, and that’s been hard but great. And I think maybe the hardest part about this whole 10-year episode is, how do you rebuild your life? I still don’t have an answer. No one tells you how to rejoin life.
I’ve worked part-time, as a stepping stone back to being around people, and I’ve been thinking a lot about it. I’ve been looking at volunteering. I’d love to do something in a mental-health capacity. But these days, right now, my cognitive wherewithal just is not there.
It seems like a straightforward, easy thing to do; it is the exact opposite of that. Re-integration into everyday life is so hard that sometimes it hurts just to think about it. I am embarrassed and ashamed. I have been given a second, and third, chance at life; I have an amazing family and a team of doctors…I have been so blessed when I compare my situation to that of many others. The guilt is sometimes overwhelming.
I am angry at my depression; it took so much from me. Important things, or so I thought at the time: my career; my independence; and my voice. Those things seemed to vanish almost overnight. And reclaiming even a small piece of those things has been monumental work. I still have a long way to go. But this experience gave me a perspective that I would not have had otherwise; for that, I am grateful.
I grieved the loss of that life for a long time, a very long time. Only very recently is it beginning to feel more removed, more in the past, and I am not haunted when I think about it, as I used to be.
Today, I view my depression not from a place of fear, more from a place of conquest. I conquered it, I beat it, and I am better for it. If I am being honest, some days I miss it. Why? Because depression is mysterious, sneaky, fascinating. But even on those days when I do miss it, I wouldn’t trade what I’ve learned to go back to the happy life I remember from before August of 2004.
I had the amazing fortune of being in the right place at the right time when my illness was at its absolute worst.
I know how to be sick, and sadly, I became “good” at it. It is easier to be ill, or ill-functioning, when that is all you have known for the better part of ten years. But really, it is an excuse. I have a dedicated, caring husband, a beautiful three and a half year old son, and an amazing dog – each of whom hold me together in different ways. They are my anchors to this world, and I am beyond grateful. My extended family, particularly my mother, is incredible; and quite honestly, I feel great guilt that I have so much and can do or seemingly offer so little.
Life is tricky, that is for sure. When I was 36, I tattooed a question mark on my left forearm, the same arm whose wrist I had cut just four years earlier. Often, people comment on my tattoo and ask me the meaning. I can only reply with the obvious: “Why? Why do things happen the way they do?”
We will never know the answer or, better yet, understand. At least, I won’t. Depression is an ugly, ruthless, callous teacher; my teacher, whom I hate and worship. I have learned so much through this experience, far more than any schooling or work had begun to teach me. The lessons are hard to put into words; but the experience is unmovable, it is part of me.
I had the amazing fortune of being in the right place at the right time when my illness was at its absolute worst. Each day, I think of MGH, my treatment team and all I have experienced and been given. Literally every day I reflect on it, multiple times a day. And each day, I look at my son, and wonder how I will explain my history, myself to him when he is ready to learn, and it is difficult to contemplate. But I am here, and will be…And today, that is all I can be.