Personal Accounts: Then and Now

Mother's perspective

Ms. Wasow is a social work professor emerita with the School of Social Work, and Dr. Moore is a resident physician in psychiatry with the Medical School, both at the University of Wisconsin-Madison, 6001 Research Park Blvd., Madison WI 53719 (e-mail: [email protected]). Jeffrey L. Geller, M.D., M.P.H., is editor of this column.

Being an old curmudgeon in my mid-70s, a social work professor, and a mother of a 50-year-old son with a severe form of schizophrenia, I'm used to complaining bitterly about an awful mental health system. In the early 1970s when I contacted a mental health center about my very ill son, they called the police, who handcuffed my sweet, quiet, gentle, terrified 16-year-old (going on seven) and transported him to the psychiatric hospital. His screams of terror still haunt me.

The health care professionals implied I had caused his illness. A psychiatrist told me my son was just "a rebellious adolescent" and that his father and I "should show him who was boss." Therefore, the doctor advised us to place our son in the YMCA and cut off all contact until he "shaped up." We were so desperate we actually followed his advice. It took us six months to come to our senses and resume contact with him. But by then he was mute with terror and feelings of abandonment. Several years later, when I asked him about that experience, he responded, "When you and papa wouldn't see me, I knew I must have done something SO BAD, but I couldn't figure out what it was." I almost passed out with anguish when he said that.

I do not remember who that psychiatrist was, and he is lucky. If I ever saw him again, I'd get him into a back alley and break both his legs.

Okay, as practicing psychiatrists you have heard all that before. The past 30 years have brought out an angry backlash from families and consumers alike, and that is a good thing. That was then.

And where are we now? Mental health professionals know that mental illnesses, like all other serious illnesses, are just that—illnesses with multiple causalities, about which not much is known. Alas, we do not have "cures" yet, either. But this little column is inspired by a specific incident that happened to me quite recently.

My son now belongs to an excellent, humane community support program called "Gateway," and life is 100% better for him and for us. Yesterday, I had an appointment with a young, new psychiatrist whom I had requested, hoping he or she could try out some cognitive-behavioral therapy (CBT) with my son. He has remained pretty uncommunicative since his six-month trauma at the YMCA. I thought that CBT might help him to talk a bit more.

I had not yet met with the psychiatrist, so I headed down to the mental health center to do so. As I walked in the front door, I tensed up: one false move and that psychiatrist was going to hear from me! (I've got a nasty reputation to maintain.)

I was greeted by a young woman with a warm smile, an extended hand, and the words, "Oh, thank you for taking the time to see me. I'm so happy to meet you." This so surprised and so moved me that the first thing I did was show her some photographs I had of my son when he was an adorable little boy of ten! I had not planned on doing that. She oohed and aahed over them, and then I was happily in her hands.

I will spare you additional "mush." She asked me excellent questions, ones that might provide information to guide her initial approaches to my son. She made me feel like an expert about my son, which I am in some respects, and I think I gave her very useful information. We parted with expressions of mutual thanks and appreciation. Oh, I am so pleased!

Maybe you have heard all this before, too? I hope so. But just in case you have not—for parents in my generation are still licking their wounds and sometimes forget to acknowledge the change—I want to say it now. The changes in treatment of patients with severe mental illness are wonderful—I am grateful—thank you.

From the young psychiatrist's point of view

As the tears moistened my eyes and threatened to spill over, I looked at the worn photograph. A boy of about ten … smiling … happy … full of life and all its possibilities. His mother sat next to me and told me about her child as she showed me the photos. She told of his love for the outdoors, making pottery, and playing guitar, to name a few of his interests. He was shy but adventurous and felt at home near the rivers of Wyoming, fishing with his sister. His mother glowed with pride as she described her son.

A shadow of sadness passed across her face as she told me of the atrocities the mental health system inflicted on her son in the 1970s. I gasped in horror as she described her terrified boy being pulled from her and the rest of his family at the young age of 16. My mind flashed to my own daughter, only 13 months old at the time. I pictured the police taking her away in handcuffs, doctors telling me that I should not speak to her, write to her, or see her under any circumstances. As I imagined the gut-wrenching guilt and conflict his mother must have felt, my stomach turned. She wanted to do what was best for her child, wanted to trust "the professionals," but at the same time her mother's heart and gut questioned the benefit of isolating a scared and sick boy. That's when I felt the tears, imagining the pain that this woman must have felt when she was not allowed to protect her own child.

I conjured up an image of the sweet little boy of ten from the photograph and could see a glimpse of him in the gentle, soft-spoken man before me now. His eyes downcast, a thick beard hiding and protecting him, he moved with caution. I said, "Hello, it's good to see you again." He replied, "Hello." I asked if he would like to have our visit while walking outdoors, instead of in the office. He said, "Okay." I asked if it was okay to take the stairs instead of the elevator. He paused, looking down for several seconds, and then, in a barely audible whisper, I thought he said, "Okay."

The rest of our visit was similar with short, timid answers and long pauses. Our past sessions had looked much the same on the surface. The difference during this visit was subtle yet critical. He was no longer a quiet man with "schizophrenia, prominent negative symptoms, and affective flattening." He had been transformed by his mother's brave willingness to share their story. His fearfulness made perfect sense in the context of the years of mistreatment at the hands of the mental health system that he had suffered in the past. Despite the limited exchange of words, I was now able to grasp the richness and wholeness of this man and his life up to this point. He had been wounded by illness and ignorance, but he is not simply a man with schizophrenia. He is so much more than that. He, among other things, is a man with diverse interests, fond memories, and potential for the future, and he has a family who loves him.

As a physician in this day and age, with our 15-minute medical checks, it is so easy to lose sight of the wholeness of the person, to only see our clients as snapshots during that one brief moment in their lives, to forget the context, the life story. How fortunate to have been given the gift of a broader perspective, a perspective like no other, through the eyes of a mother.

Synthesis

The comparatively simple exchange we have described took place in less than an hour. No tests, measurements, or questionnaires to be filled out—just two people exchanging information about a person with schizophrenia, with the hope of proving helpful to all concerned.

So our suggestion is this: psychiatrists and family members should automatically contact one another as step one. There are not always family members to be contacted, but when there are, please do so.