Depression: My story

“For most Islanders, January to March are the difficult months,” wrote Milton Mazer 40 years ago in his book “People and Predicaments: Life and Distress on Martha’s Vineyard.” “There are periods when day after day, heavy low clouds oppress the Island, the sun gone, the night sky moonless and starless …” Dr. Mazer’s book described the study he conducted on Martha’s Vineyard beginning in 1961. Beyond pointing to seasonal factors that might trigger mental illness, Dr. Mazer sought to understand the “stresses that are peculiar to the conditions of life on the Island,” and why incidences of mental illnesses such as depression were so much higher on the Island than on the mainland.

Mental illness affects one in four families, according to the National Alliance for Mental Illness (NAMI). On Martha’s Vineyard, that number is much higher, as it was when Mazer studied the community: The incidence of depression (as self-reported; actual rates may be higher) is nearly twice the state average.

What is mental illness? What causes it, and why is there such a high rate of it on Martha’s Vineyard? How is diagnosed, and who is afflicted? And why is it so hard for people to talk about?

Martha’s Vineyard Times contributor Jonathan Burke spoke to Islanders and families who’ve suffered from depression, schizophrenia, bipolar disorder, and anxiety disorder. In the months to come, we will publish their stories, along with stories exploring why the Vineyard rates are so much higher, how police and public health officials treat psychological issues, and how mental illness on Martha’s Vineyard has changed since Dr. Mazer began to study it. Each month, Martha’s Vineyard Hospital psychiatrist Dr. Charles Silberstein will write a column addressing questions about mental health.

Hermine Hull, whom most readers know from her West Tisbury town column, has written the first story, about her lifelong battle with depression.

I have often thought about writing about depression, my lifelong companion, but when Jamie Stringfellow, my editor at The Times, asked me to write this article, I didn’t know if I could do it. Just get my thoughts down. See how it feels. My husband Mike said, “It’s up to you,” but he worried it would bring on an episode of depression. Will it? I can feel my body tightening just thinking about it.

I have been very open about my mental illness. It doesn’t seem any different to me than other bodily sickness or impairment. I accept it, meaning I accept myself as I am. I struggle with accepting that it recurs, often out of the blue for no reason, and that I will likely have these recurrences for the rest of my life. Since I have lived with depression most of my life, I suppose that is to be expected. But it’s still hard when it happens. My friends and acquaintances know about my depression, so know that I am writing this to you, and to someone I may or may not know, someone I may never meet.

My way of coping has always been to “take to my bed,” to curl up under the covers and hide from the world, to wish I were dead. Dying would end/solve everything. Being healthy, I was unlikely to die without making my own effort. That is what I thought about while I hid away — suicidal fantasies as vivid as paintings. It would last a day or two or three, sometimes a week, and I would get up and resume my life. Then one day about four years ago, I couldn’t get up. My dead-weight body just stayed put. Time washed over me, and I couldn’t move. Then the day was gone, the one after that went by, and then the next one, too.

So I stayed in bed. I couldn’t face anything. Summer was coming and I would have to open my gallery. I had no new paintings. I didn’t want to go to my studio. I didn’t want to paint or clean or garden or do any of the preparation to get the gallery ready to open. It was overwhelming. My sign was old and worn-looking, aligning itself with the impression I felt of myself. “Who cares?” I thought. “I’ll just stay here till I die,” and continued to spend my days wrapped in a quilt to hold my body together, and thinking that if I didn’t get up, if I didn’t eat, if I didn’t sleep except in patches, if I didn’t talk or see anyone, I would eventually die. Mike would be better off without me. He could find a wife who didn’t want to die, who could be a fun and loving partner for him instead of someone who cried all day.

My friends and my brothers called. I couldn’t answer the phone. I didn’t want to make everyone around me miserable. I just wanted to die. Mike said, “Why don’t you get up and go for a walk? Do something you like to do? You will feel better.” But I couldn’t get up. There was nothing that would make me feel better. I was dead already, just lying here waiting for my breath and body to catch up to reality. I felt nothing. No body. No thoughts. No will. No interests.

Mike worried about me. It made him stay at work longer hours, to avoid coming home to a wife who was barely there. He ate canned soup lots of nights. It was hard. I hated making him miserable. I was my problem. I still couldn’t get up.

My friend Jayne Johnson worked for Island Counseling back then. She and Mike got me to go for an evaluation, then to begin seeing a counselor. I would go, then come home to bed. I opened my gallery, arranged old paintings on the walls, and stayed in bed the rest of the time. I went with Jayne to Cathy Mann’s Fourth of July party. More accurately, I tried to go. I couldn’t be anywhere, even with dear friends. The light was too bright. There was too much noise and movement around me. I felt assaulted by everything everywhere. I wanted to go home to my bed, so called Mike to come and get me. He did.

The next day, Jayne and my therapist, Kristine Leone, and Mike told me I had to go into the hospital. Of course I didn’t want to go. I didn’t know what to expect. Would I be strapped against my will onto a table and given shock therapy or terrible drugs? Would I have to have roommates? What would be expected of me? What would I have to do? What would other people be like?

Everyone who loved me wanted me to go. Jayne and Mike brought me to McLean Hospital and left me there with my quilt, my pillow, a bag of books, and some clean clothes. I had been given drugs at the Martha’s Vineyard Hospital emergency room, so I remembered nothing about my trip. I was lucky that no one wanted to room with me because of my insomnia, and there was a single room available, so I unpacked my clean clothes into the empty drawers of the desk, lined up postcards of my paintings across its surface, spread out my quilt and put my pillow on my bed. My books went on the bedside table. Fairfield Porter, Wolf Kahn, Richard Diebenkorn, my favorite artists, and paperbacks of P.D. James’ mysteries. I loved that little room. It was tiny, but spare and orderly. It felt like a monastic cell and a cocoon all at once, a place of emptiness, peaceful. There was nothing needing doing. Best of all, it had a beautiful view that I could draw. (Yes, I had brought my sketchbook, too. Odd, since I had been unable to paint for months. Hopeful?)

Everything is very routine in the hospital. You are given a schedule to follow, and staff remind you where you are supposed to be. In fact, someone checks on you every 15 minutes throughout the day and night to make sure you don’t try to commit suicide or hurt yourself. I was in a locked ward in a psychiatric hospital. I felt tranquil, rather than distraught.

The first morning, I went to my first group meeting, and heard one person after another speak of dealing with their depression the same way I did, staying in bed, isolating, afraid to move, afraid to breathe, curling into ourselves, worrying about things that might never happen. It was such a revelation to hear a roomful of strangers saying my thoughts out loud, one after another. After five days as an inpatient, I was released to spend another five days attending McLean’s Behavioral Health Partial Hospital Program. Days of group meetings, evaluations, private therapy with my doctor and therapists from 8:30 to 3, gave structure and a wealth of skills-oriented information and practice to those early days. I stayed with my cousin Wendy, who drove me in every morning and picked me up every afternoon; I was still too fragile to be able to drive. She, her husband Rob, and their two golden retrievers gave me a supportive home through this time.

I began learning about myself, began my journey of new medications, weekly therapy with Kristine and Jean Hay, healing therapies and massage with Joanne Scott, doctor’s appointments with Beth Donnelly. I couldn’t have a better care team.

Kristine had said that when she met me, “Your depression engulfed you.” It is a part of me. It’s not all of me, and I work to make my peace with it. We travel together like Peter Pan and his shadow, stitched together at the heels.

I am supported by dear friends, by my brothers who love me, by the warmth and goodwill of my community. I am especially supported by my husband. I am totally grateful that he doesn’t understand the what or why of my illness. I hope he never does. But it has affected him, too. There are things I cannot do, places I cannot go, things that are difficult, sometimes impossible for me to handle. Mike has had to take over a lot of what I used to do. He is learning about ways to help me help myself. He worries when, on days like today when I am writing, he comes home to find me still in my nightgown, wrapped in my quilt. I still write this way, on the sofa in our living room under the windows, with sun pouring in, my dog and cat on the sofa with me, a pile of books and newspapers beside me, my journal, my Oxford English Dictionary, my laptop computer. My good habits and bad habits are disastrously similar; Kristine says it depends on my intentions, although I know it would be better for me to have more regular habits. Or so I was told in the hospital, to pile books on my bed and sofa so I couldn’t easily lie down, to be up and dressed first thing.

Reading this, you might legitimately wonder what I have to be depressed about. Good question. I have wondered for years now. No conclusions. It just is. Everyone has their own issues and their own journey. I have always wanted to be a good wife, sister, aunt, friend, an artist and writer, self-employed. I have all that.

I have written about my beloved town, West Tisbury, in a weekly column these past 12 years. Reading my column, no one would ever guess that I have periods of depression and anxiety that paralyze me for weeks at a time. I still look out my windows, walk or drive through beautiful scenery to describe and to paint when I can. My dogs and my cat still do silly things that make me laugh and that make good stories. I still observe the seasons and the passing of time, outings with friends, holidays. I still love new babies and mourn the loss of old friends, the loss of old ways, the changes wrought by technology.

I asked Kristine to read this and tell me what she thought. She said I wrote graphically about myself in deep depression, but not how I was now. She said it would be empowering for others struggling with their own depressions to read that I have made progress, and give them hope.

It’s been quite awhile since I have woken up wishing I was dead as my first thought. Most days I just start the day. I assume that’s what most people do, just start their days. People tell me that I look well. I am. Most days are good. I am functioning, even accomplishing things. My husband is glad to have his wife back.

I have had to return to McLean a few more times. Maybe I will again. Since the last time, I have been able to use “the tools” I learned there to get myself up in the morning and do something with my day, no matter how small or seemingly insignificant. There are days when getting up, taking a shower, walking outside, making coffee, are all considered accomplishments. I still have to remember to make myself eat and drink water. I have no willpower over chocolate. I have to be relentlessly careful about my sleep habits, which have always been terrible, and still plague me. Those are things that feed depression. I have to fight the familiarity of that beckoning black hole of depression, an enchantress as wily and compelling as the Sirens of mythology. I try to live in the present. Being grateful for the blessings in my life every day is an important practice every morning. I know how lucky I am, but it has gotten harder as I am older.

Besides my human support system, I have been blessed with good health insurance. We had Harvard Pilgrim during my first hospitalization. It cost a fortune, approximately $1,000 a month for each of us because we are self-employed, but I was well taken care of when I needed it, and I could continue therapy, follow-up doctor’s visits, and my medications for a $25 copay. They did deny extending my stay in McLean’s partial program, and I came home earlier than my doctor and therapist advised, earlier than I was ready. For the past two hospitalizations I was old enough to be on Medicare, with a supplemental Blue Cross plan. I have nothing but praise for Medicare. They allowed me to stay for the full two outpatient weeks after my second hospitalization. It made a huge difference. Mike and I could never have paid for any of my hospital stays and care without it.

There are still days when I want to stay on my sofa under my quilt, curled up with a good book, but those days are intentional now, rather than all I can manage. I let myself enjoy them. There are still days when I feel overwhelmed and anxious, when I have to prioritize and breathe. There are days when I go through my folder from McLean or reread my journals. I write most days. It clears my head and makes interesting reading, a place to see where I was and where I am now, how I have to set limits, to accept what I can and cannot do.

I still have trouble initiating anything or following through with an intention or activity. All the things I most love to do are solitary — painting, writing, reading, gardening — making it so easy to stay alone too much. They are also all activities that are completely engaging if only I can begin. That difficulty with executive function troubles me. So does looking at piles of mail or pots of unplanted plants, unpainted paintings or walls, unfinished projects, anything I haven’t dealt with. Just start. Just do one thing.

All that said, I cannot tell you that I have changed my habits of a lifetime, even though I am told they all contribute to depression. I have trouble remembering or wanting to eat three meals, sleeping eight hours a night, keeping a regular schedule. I like staying up and puttering late into the night, then reading and/or napping in the afternoon. I worry about our future, that I feel more dependent than when we were younger. So far we have always covered for each other when we needed to. I can only trust that I will rise to whatever I must and cope with it, that I won’t let Mike down.

I have always been a reader, and have found it of interest to read about other people’s depressions, their experiences, their observations, their paths to getting better and writing their stories. We are all different and all the same. You will understand. Also to read about the advances in neuroscience, how genetic glitches can predispose us to mental illnesses that are no different from the common, accepted, physical ones, except that they are invisible.

Writing this has been more difficult than I expected. I would write, put it away for awhile, take it out to reread and rewrite. It makes me feel very fragile. But I did it. I know it was the right thing to do, and I hope my story will be of use to others.