Depression: Getting through the darkest days

Empowered patient: If you've never really experienced depression, it's hard to understand what it's like. Tobin Levy shares her downward spiral from thriving magazine writer to suicidal wreck — and how she's navigating her way to a brighter tomorrow.
By Tobin Levy
depression, blues Nils Juul-Hansen

As usual, I'd been gone longer than I'd realized — years instead of months. And as usual, upon my return, I was received not with fanfare but with trepidation, the most unsettling of which was my own. Though my homecoming was not typical, neither was my absence; both were more abstract. I hadn’t actually left, at least physically. In fact, I’d spent an inordinate amount of time hiding out at home, not answering the phone or returning calls from people who’d had the pleasure of knowing me when I was well. There was no point in talking to them. They’d immediately hear the depression in my voice and be almost as disappointed as I was that it had returned, that I’d disappeared, yet again, without saying goodbye.

My first days back were relatively quiet. I woke up before sunrise without the aid of an alarm clock, feeling rested and energized. Because my arms, like the rest of my body, were no longer weighted down by self-loathing and because the bathroom mirror no longer seemed intentionally cruel in its reflections, I washed my face, brushed my teeth and even applied a little makeup.

I put on clothes that actually fit and hadn’t been slept in, then drove beneath the pink and orange sky, hyper-aware of the fact that I actually noticed it, toward my local coffee shop. When I ran into people I knew and they asked how I was, I said “Good,” and I meant it. When I returned home, coffee in hand, and sat down at my computer, I not only wrote, but also enjoyed the act of writing. I could focus and think of words that had recently been lost to me as I had been lost to myself. I could easily delete pat, poorly written sentences without feeling as if the world would be better off if I, too, were permanently deleted.

During that first week, along with writing again, I started making my way through the 400-plus half-written emails that had amassed, as if placed there by a stranger, in my draft folder. I responded to more than 200 pertinent messages in my inbox. I returned texts and voice mails, then tackled — and made noticeable dents in — piles of laundry and stacks of overdue bills. I mopped, cleaned and put fresh-cut flowers from my yard into vases that I then placed throughout my house. At the end of the day, I got dressed up for no one in particular, grabbed Jonathan Franzen’s Freedom and took myself out for a glass of wine.

“I miss the person who used to write and read and talk about books,” said one of my best friends, six months earlier, before asking me to move out of the house we shared. It had taken her a while — years, in fact — but she had finally enlisted professional support, an objective person who gave her permission to self-preserve. In a tearful voice that I now recognize as genuinely concerned for my well-being, not simply her own, my friend explained that she could no longer live with a depressed person, a self-proclaimed victim — of life, friends, employers and men — someone who spent the bulk of her days either crying or sleeping.

My friend is a writer. She’s also shy, more comfortable expressing emotion in private on paper than publicly in conversation. When she speaks, her words are deliberate. It’s an artful and economic approach to language, one that leaves little room for error and hyperbole. Her view on my depressed self was spot-on. I couldn’t blame her for not being able to live with me (though for months I did).

Then, one day in early September, after a few weeks on Lamictal, a mood stabilizer most often used to treat people who suffer from bipolar disorder or certain types of epilepsy, I was once again the whole and engaged person my friend had been missing. It was as if I’d woken up from a long sleep full of misremembered nightmares. On each subsequent morning, I opened my eyes not to muddled anxiety and heavy sadness but to a light and beautiful lucidity. There was no Prince Charming, just my 13-year-old black-and white cat with her dirty paws and chronic halitosis. But I was back, and possessing circumspect optimism that this time I’d be staying for good.

During the following weeks, I slowly reintroduced myself to the world. I made plans with friends and family members, many of whom I hadn’t seen since my last depressive episode (even in the worst of times, guilt and an arsenal of Xanax, fake smiles and light conversation can usually get me out of the house). But the me they’d hung out with then wasn’t real or all that much fun to be around.

I started a book project, began a new exercise and skincare regimen and pursued crushes, some of whom were even kind, intelligent and age-appropriate. When, in mid-October, it seemed clear that the meds would stick, I tentatively reached out, via email, to my friend and former roommate.

For the next few weeks, we emailed cautiously, casually, back and forth. She was looking forward to reconnecting with the woman she’d become friends with more than a decade earlier. I was looking forward to making the reintroduction.

Then came the rash, a potentially fatal side effect of Lamictal, and with it news of my imminent departure. I’d been on Lamictal for eight weeks when small dots appeared on my chest. The bumps were red, itchy and slightly raised, some the diameter of a lentil, others the size of a pea. They quickly spread to my neck and face.

I was now faced with returning to the 35-year-old woman who’d walked into a psychiatrist’s office three months earlier after giving up on life and hope and medication. I hadn’t showered in days or gotten out of bed before noon in weeks. Tearless days had long been something only other people enjoyed. The office visit to the 10th psychiatrist in nearly twice as many years was as much a formality as it was a final commitment, the least I could do for the friends and family and therapist who might be more apt to forgive me, upon attending the funeral I’d envisioned for myself, if they believed, as I did, that I’d exhausted all of my options.

“Let’s go over your history,” said Dr. W. , while perusing the first-time-patient paperwork I’d filled out in the waiting room. But my history was as blurry as the framed medical degrees that lined the office walls. Both were impossible to decipher through tears and unleashed, imbalanced emotion.

“I’ve struggled with depression since I was 12. And I’m not bipolar,” I snapped, referring to two of the questionnaires her receptionist had given me, both of which were clearly geared toward that diagnosis.

Even if I only met with her this once, I needed the doctor to appreciate my psychiatric savvy and keen understanding of the Diagnostic and Statistical Manual of Mental Disorders (DSM). It was my bible too. “I’m not saying that you are,” she said. “What meds have you tried?”

“All the basic SSRIs and tricyclics,” I said, exhibiting my familiarity with the subject and thinking about the drawer in my bathroom that houses myriad half-empty bottles of head meds, all of which I’d stopped taking because of side effects or ineffectiveness. Some people have a sex drawer filled with K-Y, condoms and other kink; I have one reserved for my pharmaceutical defeat.

“Such as?” she asked. Her voice was calm and grating, grating because it was that of a stable person who, unlike me, was able to not take personally other people’s inflections.

“Prozac, Zoloft, Effexor, Lexapro, Celexa, Wellbutrin and probably a half-dozen others I can’t recall.”

“How did they work for you?”

“The Prozac and Zoloft killed my libido and made me feel like a droid. The Wellbutrin made me so speedy that I ground my jaw all day and looked like a coke addict. It also gave me insomnia. The Lexapro made me lethargic and nauseous. The Effexor gave me insomnia and made me hyper-anxious, nauseous and constipated. That was fun.”

“Did you try Cymbalta?” she asked, ignoring my tone.

“Yep, and Celexa. Both made me dizzy and tired all the time. I think one of them made me fat. I was also prescribed Xanax and Ambien for the side effects.” I started crying again.

“Did any of the medication help with the depression?”

“The Prozac and Zoloft sort of did. I wasn’t suicidal on them, but I wasn’t exactly happy to be alive either. I stayed on them the longest. Then they stopped working altogether.”

It normally takes a month or two on a new medication to know if it’s effective and to determine if the side effects are short-term or long-lasting. When they don’t work or stop working or the side effects are unbearable, it usually takes another several weeks to taper off the drug and get it out of your system before you can try a new one. I’d given up years of my life to the process, with limited success. I was tired, cynical and, at this point, wary of therapists and psychiatrists’ painfully expensive profession. At this point , I could have saved the money I’d spent over the years on therapists, paid my way through medical school and gotten my own monogrammed scrip pad.

Dr. W. then told me about Lamictal. “It won’t affect your libido or make you gain weight. There are very few potential side effects,” she said. “The only one to watch out for is a rash known as Stevens-Johnson Syndrome, or SJS . It’s rare, but it can kill you. If you notice a rash or a serious change in your skin, call me immediately.”

The possibility of a “death rash” (a term for SJS coined by depressed bloggers who vent their pharmaceutical frustrations online) didn’t faze me. I already felt half dead. It was the drug’s association with bipolar disorder that threw me off. “I’m depressed, not bipolar,” I said.

Dr. W. explained there’s been a shift in thought when it comes to treating chronic depression, one that views reoccurrence as a mood disorder similar to bipolar I but technically known as bipolar II.

“I’m not bipolar,” I said again, shifting my train of thought to Carrie Fisher, who admitted to the condition in a 2000 interview with the formidable Diane Sawyer. I wished I had super highs, during which I felt confident in side buns and a bronze bikini.

In lay terms, she described BP I as a sine wave, in which there’s a baseline mood, but the person’s actual mood curves sharply above and below that baseline. The mood cycle of people with bipolar II, when charted, is similar; the above-the-baseline curves are just not as extreme.

“You really think I’m bipolar?” I asked. She’d made a convincing argument, even drawn me a picture. “We don’t need to focus on the diagnosis, just on getting you feeling better.” And soon I was.

For the first time in two decades, I navigated through life’s roadblocks — friend, family, relationship and work dramas — instead of running into them and becoming an emotional wreck.

The most exciting change was my ability to experience happiness. Before the Lamictal, when I was on and off meds, there were moments — playing with my nieces, two-stepping at a country dive, listening to music — when I experienced joy. But, unbeknownst to me, it was subdued. Until now, I’d been unaware of what the word truly meant. Happiness was a different experience when it wasn’t dampened by anxiety, insecurity and a preoccupation with its departure.

Suddenly, the word happy, like the word depressed, seemed overused and inadequate, too full of nuance to exist as a sole utterance. There should be at least 400 words for both, like the Inuit have for snow.

Then came the rash. I spent the night in bed (and in denial) with a glass of wine, a spray bottle of Benadryl and my web browser opened to WebMD. Instead of browsing gruesome images of SJS, which leads to cell death that, in turn, causes the epidermis to separate from the dermis (it’s the antithesis of pretty), I was researching late-onset bee allergies.

I’d been stung three days earlier. Two of my friends, both in their mid-30s, had recently developed a severe bee allergy. The following morning, I ran a low fever. My glands hurt. There were bumps on my tongue. My throat was constricted. The skin on my neck was pulled tight and looked, as my doctor, a friend, so eloquently put it, “like plucked chicken skin.” He took photos of my rash with his iPhone and sent them to my psychiatrist, whom he also called, then gave me a shot of prednisone and a prescription for a week’s supply of the corticosteroid. “It might make you anxious and irritable.”

“Great,” I said, crying and laughing like a crazy person. “That’s really fair.”

“You must stop taking the Lamictal,” he said.

“But you’re not a dermatologist. You don’t know,” I shot back. My doctor pulled out a book featuring images of people with late-stage SJS. Though alive, they all looked as if they’d recently been exhumed.

“You don’t want this happening to you,” he said, handing me a box of Kleenex and a Xeroxed photo to take home. It was of a man with SJS, lying in a hospital bed. His body was covered in red, raw splotches. He looked like a burn victim. “The good news is that your psychiatrist found something that worked for you, which means you’re headed in the right direction. There has to be something else.”

I looked at the photo and thought about my new skincare regimen. I’ve always been insecure about my looks, and before the rash, my skin looked great. But I’d have given up my new, nearly flawless complexion for a few more months of happiness, calm and productivity. My life with-out those things was not worth living.

“I don’t want to take something else. I want my Lamictal,” I said, sounding like a petulant child. I sobbed like one too, trying to relax the short involuntary breaths that shook my entire body.

He gave me a compassionate hug, then left me in the room to compose myself. I thought about the friends and family members to whom I’d recently given the good news of my return. I focused on the black-and-white wall clock hanging on the exam-room wall, listening to the ticking of its second hand. How much time did I have left before I went away again?

The next day, in a last-minute decision, I drove from Marfa, where I live, to Austin, where I’m from, to attend a Halloween party thrown by many of my oldest friends, including my former roommate.

On the solitary seven-hour drive, I thought about Sleeping Beauty. She was lucky, waking up after a hundred years looking as lovely and youthful as the princess did when she pricked her finger on the cursed spindle. Because all of her friends had also fallen asleep, they too remained unchanged. Sleeping Beauty didn’t have to worry about her biological clock or struggle to play catch-up in terms of her life goals. I didn’t have that luxury. While I was away, most of my friends were meeting their husbands, having children and publishing books.

When I arrived in Austin, I drove straight to the party, which hadn’t yet started, and quietly helped my friends set up. These were the people I’d hurt and worried most when I was depressed. These were the people I’d first informed of my miraculous recovery. Unbeknownst to them, the Halloween party would also serve as my goodbye. I was confident that I’d go away again; it was only a matter of time. The following morning, I said goodbye to my friends and drove home.

Two weeks after Halloween, the death rash returned. My family doctor assured me that the post-Lamictal flare-up was not out of the ordinary and put me on a seven-day course of prednisone, which made me apprehensive and physically miserable . During that period, I also went back to my psychiatrist, who talked to me about my “options.” But, still mourning the loss of my miracle drug, I wasn’t yet ready to hear them.

“Can’t I try the Lamictal again, at a lower dose?” I pleaded, crying, remembering how, the last time I’d sat in her office, I wasn’t only happy but also thankful to her for saving my life.

“I’m sorry, I don’t feel comfortable going that route,” she said. “It would be irresponsible.”

“Well, it would be irresponsible of me to try something new right now,” I snapped. She’d mentioned Paxil, one potential side effect of which is suicidal thoughts. Then there was lithium, which can lead to tremors, nausea and weight gain. “If I try one of these and it doesn’t work, I’ll be a danger to myself.”

“I think you’re right,” she said. “And, ideally, we’d like to have as few unknowns as possible when starting something new. The effects of the steroids would be an unknown.” And so I left, scrip-free.

After my appointment with Dr. W., I drove back to Marfa, which is a three-hour drive from the nearest airport. Its remoteness and small population (less than 2,500 residents) make it an ideal place for hiding — from yourself, from the world. By mid-November, hiding was once again all I wanted to do.

I fixated on the looming holidays, which I’d opted to spend in Marfa, away from my family. In an attempt to catapult myself out of depression, I hosted a Thanksgiving dinner for 28 guests, then a bridal shower for 40 and a rehearsal dinner for 90. At each event I was anhedonic, unable to experience pleasure or enjoy people. Midway through the bridal shower, I snuck off to my bedroom to sleep. I spent New Year’s Eve at a friend’s house, drinking myself into oblivion. I woke up with a large purplish-pink bruise on my knee, a knot on my head and only a vague recollection of falling.

And then I hit rock bottom, planning my suicide and the letter I would leave behind. It was a very clever note to be read at my funeral. In it, I thanked many friends and family, and then listed a series of ex-boyfriends who, if in attendance, would be asked to leave.

Midway through January, I packed a small suitcase, found someone to take care of my cat and drove back to Austin. I moved in with my mother, her husband and their two very large mastiffs. I enrolled in an outpatient program for depression at a local hospital, where I was reminded of how democratic mental illness is. My group included a retired fireman, a successful CEO, a struggling waiter, a philanthropist and a 20-year-old girl with a pierced tongue and tattoos. Most were new to therapy. I felt out of place and over-educated in the field of boundary setting and self-awareness. And the social worker who led the group, an overweight woman who spent each session drinking from a “Buffy for President” coffee mug, did not exactly inspire confidence. It was a 20-day program. I walked away after day eight.

I went back to Dr. W a few more times. She put me on Abilify and Prozac. The Abilify blurred my vision and depleted my already low energy. Dr. W decided to “treat one of the symptoms” with Adderall. After taking it for the first and last time, I didn’t blink for 12 hours.

Once again, I begged Dr. W to retry the Lamictal. She refused, citing liability. So I found a psychiatrist who was willing to assume the risk. “Some Lamictal rashes are benign,” he said. “Perhaps if we titrate up more slowly, yours won’t come back.” After I agreed to make regular visits to a dermatologist, we began what would be a glacial process of getting me up to an effective dose. And by glacial, I mean starting the medication at 25 mg, then bumping it up another 25 mg every two to four weeks. Because the lowest effective dose for me is 200 mg, I’m still working my way up, checking the mirror each day.

I’ve experienced several false alarms (summer means relentless mosquitoes), but so far, so good. I moved into a house with a garden and a porch swing. My mood is improving. The suicide note has been replaced by writing projects that don’t involve my imminent demise. I am cautiously optimistic, trying not to think about what will happen if the rash returns.


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