By a friend of Fairwinds
The following blog is excerpted from a talk that a friend of the agency gave to the staff. In it, she shares her story, sheds light on how drug-resistant depression affects people, and how ECT saved her.
On paper my life looks pretty near perfect. I had an idyllic and privileged childhood growing up in Longmeadow, MA. I married my college sweetheart and we just celebrated our 50th wedding anniversary. We raised our two sons in Newton, MA. Beautiful house, private schools, close-knit family, with a life filled with vacations and special memories.
We added a second home on Nantucket in 1984, and I had a successful interior design business. Now retired, with our sons both in LA with successful careers in entertainment, we bought a home there three years ago to spend our winters with our kids and grandchildren. I think you get the picture.
Of course, like everyone, there were some difficult challenges in all these years. I lost a sixteen-year-old brother in a tragic ski accident. My dad battled cancer for eleven years and was totally blind for the last six years of his life. Our younger son Sam developed hydrocephalus as an infant. He had surgery at three months and four more through the ensuing years. I’m happy to say he is fine.
I have suffered through four major depressive episodes throughout my life, starting in 1986 at age thirty-nine. All four times these episodes began in the fall, and clearly indicated some component of Seasonal Affective Disorder. All four times, they were triggered by extreme anxiety and worry about some member of my family. I suffered from anxiety as a teenager. I put a lot of pressure on myself to succeed in school, socially, and to please my parents and others, but my anxious depression began, as I said, much later on.
All four episodes followed a very similar pattern of severe anxiety combined with acute sleep deprivation, which quickly led to an inability to concentrate. Tasks that I normally took in stride became overwhelmingly difficult and my memory grew fuzzy. It was like going through the day with a brown paper bag over my head, with only one small slit. This anxious depression has a real physical component for me. I experience a lightheaded, dizzy sensation at all times and my appetite vanishes, resulting in extreme weight loss.
I sought the help of a psychiatrist pretty quickly that first time, and antidepressants and sleep medication were prescribed. Unfortunately, my depressions have always been drug-resistant and it takes many different trials and different combinations of things to be effective.
My first episode lasted about six months, with each subsequent one lasting longer and longer. Each of the first three nightmarish bouts ended in the summertime after arriving on Nantucket. Many people claim Nantucket as their “happy place,” but no one as much as I do.
It’s on Nantucket where I’d reclaim my life and begin again to enjoy and appreciate every day. My doctors urged me to stay with whatever medication finally helped and I was fortunate to have between six and eight years of enjoying my life between the horrific suffering. That was my pattern, which I’ve learned is quite rare, until 2013 when it happened again.
This time the onset was late fall, but the following summer came and went with no relief. By episode three I began to see a meds-only doctor—a psychopharmacologist—and also a psychiatric social worker for talk therapy. For some time, my psychopharmacologist had been urging me to try electro-convulsive therapy (ECT), commonly called “shock treatment.”
It terrified me, and I flatly refused, hoping that I would bounce back over the summer. My husband and I researched ECT online and we learned about another treatment for depression called Transcranial Magnetic Stimulation, or TMS. It’s a much less invasive therapy that involves attaching small magnets to the head that pulsate loudly, using electricity, in a prearranged pattern for about thirty minutes per session. Unlike ECT, where you receive general anesthesia for each treatment, you are fully awake for TMS. With input from my doctor, I made the decision to try the TMS first, with the hope of avoiding ECT. He set me up at Beth Israel Hospital. I went every morning, five days a week, for six weeks. I was able to talk to someone who had great results and I was hopeful.
Very sadly, it didn’t work for me. By now, it was mid-November with over thirteen months of suffering. I talked with my husband about the reality of beginning ECT. We felt there was finally no other option.
My doctor set up an appointment with the head of the ECT department at Mass General Hospital, which he felt was the very best at this treatment. I wrote out a list of all the medicines we had tried along with my history of depression. I remember the tears streaming down my face as I described the past thirteen months. Not surprisingly, they concurred—I was a candidate for ECT.
I had heard that someone I knew on Nantucket had had great results with ECT and I shakily called him. I don’t think he knows how important his pep talk was to me.
So exactly five years ago, the week leading up to Thanksgiving, I arrived at MGH at 6:30 a.m. for my first treatment. I can’t remember ever feeling such intense fear. I had read that ECT could impair my memory during the time of the treatments and in some rare cases cause long-term memories to be erased. I begged my doctor to give me as little electricity as possible because I worried all my beautiful memories would vanish. Thank goodness I wasn’t one of those rare cases.
For the first three weeks, my husband and I drove to Mass General at 6:00 a.m. on Mondays, Wednesdays, and Fridays. Registration began at 6:30 and they took patients on a first come, first served basis. The nurses and staff were fantastic and did everything to put me at ease. The most difficult part was the anticipation of going under general anesthesia three times a week. After my very first treatment, after sleeping a few hours, I picked up the phone and called three friends that I hadn’t spoken to in many months.
At the end of the second week, with six treatments done, I found myself going to the large, nearby supermarket. I had not been grocery shopping for thirteen months, because making decisions was just too overwhelming and exhausting. I returned home with six grocery bags that day!
Slowly, the anxiety, the gloom, and my dizziness began to lift, and by New Years Eve I actually had a few friends over to celebrate, which was something I never would or could have done a month earlier. It was like a miracle had happened… The treatment that I had so dreaded was allowing me to return to my old self. I felt stronger and more confident with each ECT experience. I was actually laughing again and having fun.
My doctor was a firm believer in weaning his patients off ECT very, very slowly. He explained that people who stop too quickly very often end up relapsing. So after my initial three weeks with such great results, I went twice a week for a while, then once a week, then once every other week, and so on. He wanted me to stay on “maintenance” a whole year from when I started to feel better. We were going to be leaving for LA for the winter and so my doctor made arrangements for me to continue ECT at UCLA hospital which was also a very positive experience.
By the summer, I think I was having ECT about every six weeks and so I returned to Boston for these. I finished my last ECT session in late November. I had graduated with flying colors! My doctor made me promise that if I had three sleepless nights or felt something might be brewing, I would call him immediately and we would resume treatment to nip it in the bud. Without wanting to jinx anything, I am happy to report that I have never needed to make this call.
Of course, I worry, especially in the fall, about my anxious depression returning, but it is so different because I know that ECT worked for me and if it ever recurs, I now have a cure and someplace to go.