by Jessie Close
I call that mouse the Close family mouse.
After Mattie and I finished at McLean, Calen and Sander arrived for a week of tests at the hospital and went through the same procedures, including having skin samples taken from their butts. The reason Mattie and Sander were included was that we are all in the same family, yet Mattie and Sander didn’t have our mutated genes.
After the doctors collected all the data from the four of us, we moved to the next stage of research. Every two weeks big boxes were mailed to Calen and me containing doses of liquid medicine prepared by McLean Hospital pharmacist Laura Godfrey. We were supposed to drink one dose after each meal at specific intervals for a total of six months. Some of the doses contained glycine powder with lemon flavoring. The other doses were a look-alike, taste-alike placebo. We didn’t know which doses contained glycine and which were the placebos, but the first time we took glycine, Calen and I both became nauseated and vomited. This meant that we were getting too much glycine, so the amount was cut back until we had no side effects. Because this was a “blind” study, we weren’t supposed to be able to tell the difference—but trust me: after you have vomited because of something you drank, you don’t forget. Calen and I could both tell which drink contained the glycine, because it was the only time we had any side effects; that did not happen on the placebo, no matter how high the dose got. To be fair, we both got a lot better on glycine, and once the dose was adjusted we had no side effects. That made it worth it. The amazing thing is that we persevered. That is something we are very proud of. It turned out to be a good thing, because we got so much better on glycine. It was particularly hard for me, because I got glycine first, then I had to get through thirteen weeks waiting for the time when I knew I would get glycine again.
I was proud that both of us completed the first twelve weeks. After that came the six-week “open label” phase, during which the study was no longer blind and we were told that we were getting glycine. Dr. Levy and her team began increasing our glycine intake while giving us periodic blood tests and checking our weights. The results showed that our symptoms improved when we took glycine, but not when we took the placebo. Dr. Levy said this was significant because it demonstrated that our mutation was “medically actionable,” which meant the deficiency caused by the mutant gene could be at least partially corrected by taking glycine.
Dr. Levy and other researchers have found mutated genes in individuals with mental illnesses, including those with schizophrenia, bipolar disorder, autism, epilepsy, attention-deficit/hyperactivity disorder, and intellectual disability. Sadly, she and others still have a long way to go before they understand the mysteries of our brains. This is just one reason it is so important to support biomedical research. There are so many individuals and families who would benefit from such an investment.
Although the clinical tests are finished, Calen and I are still being studied. With the support of NIMH, we are continuing to take glycine to see if it will enable us to cut down on the pharmacopoeia of meds that both of us are now taking. If it does, glycine (or something like it) in pill form may become available for others with similar mutations.
I’m really proud that my family has played a key role in helping scientists pinpoint a possible cause for severe mental illnesses, but I’m also happy that Dr. Levy got us involved for several reasons. The fact that my children, siblings, parents, and Tom immediately agreed to donate their blood and be tested says a lot about their characters. I’ve been frank in this book about my family’s disputes and our different personalities. But when it came to helping Calen and me, and possibly others, they were “all in.”
There’s another personal reason why these tests mattered. When you have a mental illness and people are talking behind your back about how you are “crazy,” when everything in the media suggests that persons with mental illnesses are dangerous and scary, and when you realize that sometimes you can’t trust your own brain to interpret reality for you, you often feel as if it is all your fault, that somehow you are to blame and that you are responsible for your wild mood swings or for seeing things that aren’t there or hearing sounds that no one else hears.
I’ve made mistakes in my life, and I am not trying to avoid taking responsibility for many of the foolish decisions I’ve made, but what Dr. Levy’s research documents is that it isn’t just all me. I have mutated genes that affect my brain, just as some people are born with a physical challenge. And despite our illnesses, Calen and I were able to make a unique contribution to medical science. If we had decided not to participate, no one would ever have known that our mutation was actionable and we would not have experienced the benefits of glycine.
Why some individuals develop a mental disorder and others don’t remains a mystery. Uncle Seymour had one, so do I, and so does Calen. Other illnesses have been mysteries to us, but scientists have solved them. I hope someday we will not only find ways to help those of us who do have one but also find a cure. I hope that day comes soon.
CHAPTER THIRTY-SIX
I’m finally home after giving two speeches with Glennie and spending a week at McLean Hospital for more testing with Dr. Levy. Two weeks gone was too long, but I’m basking in the quiet once again. Last night, after finally getting home, I lit a fire in my woodstove, then walked outside my house in the dark and, with the creek as background music, reacquainted myself with the stars and the moon. The sweet, thick scent of smoke from the chimney wrapped around me. The huge snow-covered mountains looming above me glowed in the moonlight. I was home.
This past summer saw a new roof on my house. I can’t help but think in metaphor—that the new roof represents me, a woman who went from being severely mentally ill to being capable of living life almost unhindered by my disorder. My old roof was growing lichen, and pieces of the dark green shingles blew off whenever a wind picked up, which is often. Now, with my new roof, I welcome and even challenge the wind.
I no longer have the constraints of living with a husband or children. My last husband, Mark, and I officially divorced ten years ago and we remain friends, and my three children are now gone from my home. I protect myself from alcoholism and bipolar disorder by—obviously—avoiding alcohol and taking my medications. But I’ll always carry the shame of doing the things I did when I was drunk and unmedicated. I’ll always question my diagnosis. I think questioning the validity of being mentally ill plagues everyone who’s on the right meds and no longer feels symptoms. This questioning can lead to stopping medication unless you’re very careful and compliant. Even after writing this book and reviewing everything that happened to me, as well as undergoing all the weeks of testing at McLean with Dr. Levy, I asked Mattie one night when I was feeling good if she thought I really was bipolar. She responded with, “Are you fucking kidding me?” So there’s that!
I wouldn’t mind being manic again for a day, manic without the ugly parts, but I never want to be depressed again. Losing mania because of fear of depression is a good thing. I don’t know if I’d make it through another depression, and that scares me. I have so much to live for these days and have managed to carve out a really wonderful life for myself.
My dog pack is up to four after rescuing a rat terrier named Rosco. He is my problem child, having suffered three abandonments, but I love him and will stick by him. Snitz rules the roost as the alpha, and only, female. She is my heart’s companion. She’s tiny at seven pounds but forceful, loving, and stubborn. She accompanies me on many of the trips I take to speak. She sits on the various podiums and never puts up a fuss. Snitz seems to absorb the angst I carry when I’m out in the world. She is classified as my Emotional Support Service Dog and is allowed to travel on my lap everywhere. I am grateful for her.
My life has been filled with sadness and loss, but I don’t concentrate on those things anymore—most of the time, anyway. I am alive. I have three wonderful children, I’m friends with my siblings and mother, and I have friends outside my family whom I cherish. What more could I ask?
/> I’m pleased to live alone, but there’s more to it than that. I not only protect myself from my mood disorder by avoiding alcohol and taking my medication, I also respect my conscious decision to remain mateless. This really isn’t much of a sacrifice, because I’ve had more relationships than most people have in three lifetimes. But I still look; I just don’t touch. And I still feel great relief when I look around my home and see only my things. The specter of being involved with a man and destroying another relationship strikes fear in my heart.
I can only dream about what it would have been like to live my early years with treatment. I can pine and feel the grief that comes from losing so much of myself in this lifetime, but then I’m questioning what is. I’m questioning reality and my faith, refusing to see what’s in front of my face. I’m grateful that we know so much more now and that people like Calen can get help early in their lives. I’m grateful to Glennie for her huge efforts to help end the stigma of mental illness, and I’m grateful to all the people with mental illnesses who have stood up to declare that they are ill in the face of such a stigma, both with and without the help of Bring Change 2 Mind.
But when all is said and done, it’s been my mom, Moo, who has stuck by me, even in my absence. As a mother I know what it feels like to know that I did the wrong thing as far as my children are concerned. I know, as a mother myself, how she must have been tortured by our absence in her life with Pop but I also know now that during those times I was in her heart, 24-7. I have no doubt about that. When she was with me, I felt especially loved. She was a fun mom and a cozy mom, a mom who read to me and cuddled with me, who brought me trays with food when I was sick, and who loved to laugh with me. And she helped save Calen’s and my lives with her unflinching generosity. Mom turned 90 this year. She’s frail and wisp-like now but her eyes and Yankee chin still show her spark, her determination, her love. I believe that when we each get close to passing from this life it’s the love we have nurtured in others that lights our way and makes our journey smooth. My mom will have a very smooth journey filled with extreme light. I love you, my Moo!
Resilience has allowed me to “put it all down,” to put all to rest. The four stages of grief are Denial, Anger, Acceptance, and Advocacy.
Now, when the final page is written, I can close this book and continue advocating for the mentally ill. It is my heartfelt wish that all of you join me.
EPILOGUE
by Glenn Close
Jessie and I are in the wings of Roy Thomson Hall in Toronto, waiting to be introduced. We can hear the murmurings of the more than two thousand people who have come to hear us speak—the title of our talk is “Mental Illness: A Family Affair.” Jessie has flown in from Montana, and I have flown in from Maine. It is April, often a difficult month for Jess—and for many who live with bipolar disorder—because it is a month of transitioning weather and light. While most of us glory in spring’s rebirth, Jess and many like her battle the fearsome possibility of crippling depression.
Back at the hotel, Jessie had told me that she is not doing so well. It had been a struggle to leave her house, her dogs, and her tiny hometown and to make her way through several airports to Toronto. And she is hurting herself again—rubbing the skin on her arm until it bleeds. Even though she has fought to manage her illness for a good ten years, it can still be a daunting challenge. As we wait to walk onstage, I see that the fresh abrasion on her arm is hidden by a Band-Aid. In fact, both her arms are covered with white scars caused by similar self-inflicted wounds as well as by sores from a near-death reaction to a medication. Whenever I look at those scars, I am taken back to the little girl who stood in the hallway, hurting herself so many years ago.
In 2010, I cofounded Bring Change 2 Mind—the culmination of a journey I began when Jessie and Calen asked me to help do something to fight the stigma and misunderstanding surrounding mental illness. Before doing anything, I asked them if they would be willing to talk openly, on a national stage, about living with mental illness. Because it wasn’t about me, the so-called celebrity, it was about them and our family together. Without hesitation, they said yes. They both admit now that they had no idea what they were getting into. Neither did I.
In the four years since Bring Change 2 Mind was launched, as the three of us have spoken across the country, I have witnessed a remarkable transformation in both Jessie and Calen. As they began to tell their stories, in speech after speech, on national television talk shows and in two public service announcements, they began to function better. They found their own voices, and they got stronger and more confident. We have since learned that all the research points to the fact that the most effective way to change people’s attitudes about mental illness and their behavior around mentally ill people is for them to meet someone living with a mental illness and to hear that person’s story. Becoming an advocate in order to help others can also result in significant recovery.
When Jessie told me in Toronto that she was struggling and hurting herself, my immediate reaction was, “Then tell them that. Let them know exactly where you are coming from. Start there.” She blanched because she had never talked openly about hurting herself. It was a mortifying secret. I hoped that revealing her struggle and talking openly about it for altruistic reasons would help her heal. As we stood together in the wings, I didn’t know if she could overcome her feelings of shame and distress, and it didn’t matter. The truth is that she has been consistently brave, has done so much, and has come so far.
We are introduced and walk out onto the stage to a standing ovation. That is something new. Somehow, our message has preceded us. The word is getting out. Jessie leaves the stage and I begin:
“The real truth is that I’m here tonight as the warm-up act for my sister, Jessie. It is because of her that I am here.”
I meant what I said. Jessie has grown into an extremely eloquent speaker. She is a natural. She is deeply moving in her authenticity and in her courage to speak about what makes so many feel isolated, full of shame and fear. It is her story that truly speaks to people. I went on to tell the audience about some of the characters in our family, setting the stage for Jessie. I also talked about how our family had no vocabulary for mental illness and at what cost, how vital it was for us to educate ourselves, and having the courage to start the conversation and provide support for our loved ones.
Jessie is very aware of the fact that she and Calen got help along the way, that our family happened to have the means to pay for stays at McLean Hospital and to help with ongoing support. The truth is that, no matter the circumstance, every family has its own particular quotient of pain. The question is, what do you do with it? Jessie and Calen are proof that, with help, those living with chronic mental illness can lead full and productive lives. Calen is seriously pursuing his art and is a married man. Jessie manages her world in a way that fulfills her and keeps her creative juices flowing. She is now a shamelessly doting grandmother.
That evening in Toronto, I end with a story told by Calen’s wife, Megan. When she mentioned to her parents that a handsome young man had asked her out and that he had schizophrenia, they were horrified. When asked what had caused her parents to change their minds about Calen, Megan simply said, “They met him.”
I turn and see Jessie waiting in the wings, smiling. Our eyes meet. Jess nods. She is ready. I turn back to the audience.
“Ladies and gentlemen… please meet… my sister… Jessie Close.”
Dashing Granddad Edward Bennett Close in his pinstripe suit
Handsome Grandpa Charles Arthur Moore on the lake
My dad on the porch of our house in the paracommando camp in Zaire
Bettine M. Close, Mom
The plane we took to go into the bush country
Our house in Zaire—this end of the house was Dad’s first clinic
A crowd gathered to greet President Mobutu
On our way to Mackinac Island from John Street. Our nanny who we called Ma-Ma on the right and the MRA nanny on
the left
The four of us, me being a goof
The four of us with Mom (in the back) and Grandmother Moore, her mother (in front of Mom)
The four of us and Ben, our collie, the day we left for Caux, Switzerland. It was my seventh birthday.
1960 passport photo for Switzerland
With my beloved Redstone Rocket
Family vacation in Zaire
The six of us on the front porch of our home in Zaire circa 1967
On President Mobutu’s river boat
My first and last modeling job, 1969
At KPOT in L.A.
Passport photo, age 22
Me with my darling James L. Thompson
A week before leaving for India
In Bozeman with Wowie, our Samoyed, a gift from Noah Davis
Mom, me, and Glennie in Jackson, Wyoming, early 1970s
With Pop on my wedding day to Tom Pick
Tom Pick, me, and two happy boys, Calen and Sander
Calen with sherry and cookies for Santa, 1983
My beautiful eldest sister, Tina Close, in Big Piney in the 1980s