My Family Taught Me To Hide The Truth About My Brother. I Wish They Hadn’t.

Since I was seven years old, my mother has told my older sister and I to respond that Joel was “fine” to inquiries about his well-being. My older brother Joel didn’t accompany us to meet relatives; instead, he stayed in his room when guests came to visit. The way he slouched on the couch in his sleeveless undershirt, laughing to himself while gazing into space, made me uneasy about entertaining company.

I listened to my brother’s enigmatic bathroom soundscape while I lay in bed at night. Through the small wall between us came his snickering and whispered words. He hissed like he was speaking to snakes and addressed a hypothetical audience in a language I couldn’t comprehend. I tried burying myself deep under the covers and covering my ears with pillows, but to no avail.

I was afraid that Joel’s illness “ran in our family” and might be lurking inside of me. Joel talked about swimming the English Channel in record time, and I never asked my parents why he seldom smiled. I was aware that these subjects should not be brought up. Being a doctor is a very prestigious career for Jewish Americans, and my father wanted his only son to pursue it. He frequently reprimanded Joel, saying things such, “You idiot, why can’t you just be normal?” as a result of his dissatisfaction and rage over Joel’s subpar grades.

In the 1950s and 1960s, the mother’s parenting style—her rejection of her kid during infancy and the years that followed—was frequently held responsible for schizophrenia. Joel wasn’t diagnosed until he was in his mid-20s due to my parents’ persistent denial. None of us understood how to give him the treatment, medicine, and social support he required because there was no diagnosis.

It is now recognized that schizophrenia is a neurodevelopmental condition with a hereditary basis that develops during pregnancy. According to recent studies, 3.7 million persons in the United States may have experienced schizophrenia or other spectrum illnesses at some point in their lives. Cognitive impairment can appear considerably earlier than the normal onset of schizophrenia, which occurs in late adolescence or early adulthood. For my brother, this was accurate. At the age of 13, he started to withdraw into his own world.

The problem is that family members frequently don’t seek help because they are too overwhelmed and perplexed by their loved one’s transformation, particularly if there isn’t a clear risk that the person will damage themselves or others. The individual who is suffering may suffer as a result of this disregard for the resources that are accessible.

None of us knew what was wrong with Joel until my sister started college. During a presentation on schizophrenia, her psychology professor described symptoms such as delusions, disordered thinking, and conversing and laughing with people who weren’t there. In order to diagnose and cure Joel, she advised our parents to take him to a psychiatrist. They declined, still holding out hope that he, who was 24 at the time, would “grow out of the phase” he was in.

I was away at college protesting the Vietnam War, smoking marijuana, and removing my brother from the family tree when they eventually decided to take him in and he received a diagnosis. I would respond, “One sister,” when asked if I had any siblings.

Since I hadn’t told Mark about him and it would have required taking him to their home, where Joel also lived, my parents never got to meet my college lover, Mark. Mark and I spent 16 months traveling together across Asia and Africa after graduating from college. We stayed with Mark’s folks when we got back to the United States. To my dismay, Joel accompanied my parents when they came for dinner. He appeared to be an elderly, troubled guy at thirty. On the stooping shoulders of his slender, six-foot frame dangled his oversized T-shirt. His well-worn flip-flops were accentuated by his rumpled khaki pants, which were carelessly rolled up to midcalf.

Mark’s mother looked at me, her brows lifted in perplexity.

Mark then gave me a puzzled look as well.

My hair was as crimson as my face. I muttered, “He’s my brother,” wishing I might vanish into the white carpet.

I hurried to give my parents a hug to get out of the embarrassing situation, and then I turned to Joel.

He bowed to offer me a brief embrace and an awkward peck on the cheek before saying, “Hello, Mimi.” “Hello, welcome home.” I was prepared for a flurry of inquiries from his narrow range of subjects, which included food, dining establishments, and restrooms.

As though removing a bothersome insect, he flicked his thumb and second finger at his crew cut. In reference to our journey, he inquired, “How was the food?” Have you have any American cuisine? How did the restrooms look?

As if to get his inquiries out before he forgot them, he blurted them out quickly without waiting for an answer.

***

Joel spent the majority of his youth living with our parents, and in the 1980s, they moved from New York City to Fort Lauderdale, Florida. Joel, who was in his 50s at the time, moved into his own apartment near our mother a few years after our father passed away. He came to see her every day and dined at her home. He never had a romantic partner or a buddy. Joel’s mental disorder was never mentioned by our mother.

I saw my mother and brother once a year for the next few years. Joel was taking medication at this point, but he was often disobedient.

Any unusual conduct made me fear that my own sons were turning into Joel when they hit their mid- and late-teens. They didn’t both.

My sister and I were abruptly thrown into the task of caring for the brother we barely knew after our mother passed away in 2001. What was required of us was unknown to us. Our mother never revealed any plans she may have had for Joel when she passed away.

I traveled from Tucson, Arizona, to Fort Lauderdale to see Joel often during the course of the following ten years. It became evident what he did every day: He would compose long lists of things to do, including bringing in the newspaper and brushing his teeth. To remind himself to drink water, he would arrange six red plastic cups in a perfect row on his folding table. Every day at the same time, he would ride the bus to the Golden Corral restaurant and eat the same buffet fare. Joel and I spent hours looking for the Bic pens he always purchased when the packaging changed. He taped his reading glasses across the front to keep them together when they shattered rather than purchasing new ones.

With time, I realized that Joel’s peculiarities—caused by his illness—were a part of his distinct personality. He found comfort and stability in his peculiar life rituals. Any alteration caused anxiety and perplexity.

 

 

The hardest aspect of my caregiving position, however, was learning how to properly interact with him rather than assisting him with his everyday activities. I didn’t want to speak to Joel in the patronizing manner my parents had, but I didn’t have someone to emulate. I recalled my mother’s response when Joel informed me he had stopped taking his prescriptions: “You have to take your meds or I’ll put you in an institution.” I didn’t want to threaten him. Rather, I managed to respectfully discuss with him the significance of continuing to take his prescription drugs. I struggled through, attempting to stay out of control conflicts.

I learned to regard Joel as a relatively good functioning person with schizophrenia, even though it was difficult to build a close relationship with a sibling who lacked affect. I considered letting him live close by, but I knew it would be too much trouble for him.

On one of Joel’s few trips to Tucson, my close girlfriend joined us for supper at the Golden Corral and to tour coin collecting stores, which has been his lifetime passion. She didn’t mind his strange chatter; she liked him for who he was—a disabled person. My long-standing shame started to give way to acceptance of my brother.

Joel looked at me with a half-smile on his face as he left his apartment on what would be our final visit. “I appreciate you visiting me, Mimi. I thoroughly enjoyed myself. I’ll see you in Tucson shortly. I suppose that he had also changed.

 

Joel lived a long life for a man with schizophrenia, dying in his sleep at the age of 67. His neighbor realized something was up when he noticed his newspapers outside.

I didn’t know how to care for my brother when my mother passed away. It is estimated that 53 million Americans, or one-fifth of all adults, provide unpaid care for a family member with long-term mental or physical health issues, such as a parent or grandparent, spouse or partner, or sibling. Like me, they frequently feel overburdened by the onerous responsibilities, are oblivious to the intricacy of care, and are unable to find their way through a health system that may provide support. However, things don’t have to be this way.

I wish there had been frank and affectionate conversations within my family regarding my brother’s future care. I would have researched Joel’s condition, asked questions, and learned about the emotional highs and lows of being a caregiver if there hadn’t been guilt surrounding his impairment.

Taking care of my brother was difficult for me and frequently frustrating. However, it also made me more understanding, particularly toward people who suffer from long-term mental illness. Joel wouldn’t be a family secret if he were still living today, I’m sure of it. I would make sure he understood how much our entire family loved and appreciated him for who he was.

Mimi Nichter is an emeritus professor at the University of Arizona’s School of Anthropology. She is the author of several books and has had numerous publications in scholarly journals and magazines such as Newsweek. She is now working with an agent on her most recent book, “Hostage: A Memoir of Terrorism, Trauma, and Resilience.”