My Sister Had Schizoaffective Disorder

by Lisa A. Goldstein

Warning: This article contains details of mental illness.

The tattoo on my left ankle sums up our relationship perfectly. A small, black-ink, half-sun encircling a moon. At its simplest, these elements of nature are inextricably linked, beginning in the light, and ending in the dark.

Like me and my sister.

Dena and I had a unique connection from the start. We were both born profoundly deaf to hearing parents. While my deafness wasn’t diagnosed until I was 14 months old, they knew she was deaf by the time she was two months old. As a result, she didn’t have to make up for lost time like I did. But it was still more work for her because she didn’t like to pay attention.

I was the rule follower. She was the free spirit.

Whenever we got frustrated with daily speech therapy and practice, hearing aid issues, or any of the many things related to our deafness, we had a built-in support system. Expert lipreaders, we liked taking advantage of our ability to have entirely silent conversations. Whether in synagogue, youth group, or with family, we had a perfect way to amuse ourselves. It didn’t go over well when we took Earth Science together in high school; the class ended up watching us instead of the uncaptioned video being aired.

Sorry, Mr. Maxwell.

But it wasn’t just our deafness that tied us together. We had active imaginations and as children, made up dances to perform and played elaborate versions of Shoe Store or Office for hours. We grew up with a close extended family and all four grandparents living nearby. I have vivid memories of family vacations punctuated with unique experiences as a way to teach us about the world, like the time we traveled down the West coast and slept on a train. Our family was very loving.

The Beginning

At Dena’s Bat Mitzvah in 1989, I wrote and recited a poem:

“We have something special, you and I. There’s a bond between us that will never die. It has made us closer than we ever could have been. It has not only made us sisters, it’s also made us friends. We’ve learned, that even though we’re deaf, we can do anything anyway, and that’s a fact that you’ve just proved – doing what you have done today. In the future, you’ll be a success in everything you do. Dena, you’re the greatest – I love you.”

Dena and I were both petite brunettes, but she had straight hair while mine was curly. Yet I was the strait-laced one. I was also painfully shy, while she was an extrovert and made friends wherever she went. She was friends with *gasp!* boys before I was and in the “popular” crowd. And she’s the one who lied about not going to a boy’s house when our grandparents were babysitting.

She was fiercely independent and strong willed. She was the brave one, daring to go on Disney World’s Space Mountain multiple times while I could barely stomach a single ride. She got her nose pierced, bungee jumped, and was one of the first deaf graduates of Outward Bound.

Dena’s boldness was so much of what made her special; she had an innate light that drew others in.

Dena (left) and the author, Lisa (right), at Dena’s Bat Mitzvah.

We fought, too. Like sisters do. I didn’t like when she wanted to hang out with me and my older friends. But nothing was really out of the ordinary until she started middle school.

For some reason, she didn’t want to go to school in sixth grade and went to great lengths to avoid it, like hiding our parents’ car keys. My dad often endured two-hour battles, sometimes even threatening to drag her to school in her pajamas. After finally seeing a therapist, things improved. No one was ever given a specific reason for her behavior. 

Several years after that, there was a strange incident.

Dena cryptically told my parents, her best friend, and me separately about an upsetting secret she’d been holding. All I could get out of her was that it was a possible rape or sexual assault, and that we knew the alleged perpetrator. No amount of questioning revealed more, and when we compared information years later, her best friend and I realized that the stories didn’t match up. It’s impossible for us to know now how much of what she told us was true, and how much was because of her illness.

Life went on.

The author’s family. From left: Bruce Goldstein, Betsy Goldstein, Dena, and the author.

While I was away at college, Dena indulged in her love of nature, camping, and animals. She got a job at Eastern Mountain Sports. She tried acid. She started seriously dating a high school drop-out who displayed his bare, tattooed chest when he met our parents for the first time. OK, he’d been mowing lawns, but still.

After high school, Dena enrolled at American University. Around this time, she started experiencing symptoms of depression. A doctor prescribed Paxil, but she received little benefit. By the end of her freshman year, she had many incompletes. She never returned to school. Instead, she moved in with the same boyfriend and worked at a food co-op. I didn’t know about her drug use until years later. Turns out we had more reason to not like this guy; he was cheating on her. Thankfully, she cut him loose. But the next guy was even worse.

The First Incident

One year, I was home for Thanksgiving, and noticed Dena wasn’t herself. She was sitting alone, maniacally laughing. I asked what she was laughing about, and she wouldn’t say.

Not long after that, she came to visit me. I remember her going through my clothes and expressing aggressive, controlling opinions about what I should do with each item. She told me our grandpa was dying of cancer and no one wanted to tell me. She clearly believed what she was saying, but it didn’t seem like something our family would do. I grew increasingly uncomfortable in her presence, even more so when our parents confirmed that Grandpa was completely healthy. I ended up cutting her visit short by meeting our parents halfway to hand her off to them.

Soon after that, my Dad walked into the kitchen to find Dena with a corkscrew, trying to screw it through the palm of her hand. He struggled with her, and eventually wrestled the corkscrew away. He was ultimately able to pin her down on the sofa, where they remained for at least an hour before Mom came home.

“all the money our parents had earmarked for Dena’s college education went toward trying to save her sanity instead.”

Mom had only been home for a minute or so when I called long distance to tell them I’d been awarded a fellowship for graduate school. I had no idea what was happening in the background of our conversation. My Mom was simultaneously experiencing an extreme version of highs and lows— I was regaling her with my accomplishment, while Dad and Dena were still struggling on the couch. While pinned on the couch, Dena claimed to be Jesus. At one point, she said she was in a hotel room in Washington D.C.

When Mom got off the phone with me, she and Dad called a counselor friend who helped set up her admission to the hospital Psych unit.

Thus followed a year of psychiatric hospitalizations and psychotic episodes. Dena would disappear for days at a time. She’d do strange, out-of-character things— once, she abruptly left a lunch with my mom, who found her at our old high school.

The stress manifested itself in my stomach; every time my parents called, I’d have to run to the bathroom. I even began dreading conversations with Dena herself.

Once, Dena drove from Western New York and ended up in Vermont, where she was stopped by the police after driving 80 miles an hour on the opposite side of the expressway. It’s a miracle she wasn’t hurt. It’s a miracle she didn’t hurt someone else. The VT State Troopers called our parents to tell them Dena was in the hospital in Montpelier.

The doctor there was the first to mention schizophrenia.

After much research, my parents decided to send her to the Menninger Clinic – “a nationally ranked leader in the treatment of serious mental illness,” according to its website. But getting Dena there wasn’t easy; it took the help of her best friend – who actually flew there with her – to get her to acquiesce. All the money our parents had earmarked for her college education went toward trying to save her sanity instead.

Dena (left) and the author (right).

The Diagnosis

At Menninger, she eventually got an official diagnosis of schizoaffective disorder. According to the National Alliance on Mental Illness (NAMI), schizoaffective disorder has “symptoms of schizophrenia like hallucinations or delusions, and symptoms of a mood disorder, such as mania and depression. Many people with schizoaffective disorder are often incorrectly diagnosed at first with bipolar disorder or schizophrenia.” This was an awful diagnosis because of the combination. It’s also difficult to find the right mix of meds because it involves many different issues and changing body chemistry.

NAMI says that this condition is rare, at only 0.3 percent.

I always knew Dena was special.

The protocol at Menninger was no visits for a while – maybe a month. Once our parents were allowed to visit while she was an inpatient, they were invited to a counseling session. Dad attempted to correct something Dena had said. The counselor interrupted him and said, “Mr. Goldstein, you don’t understand. To Dena, there’s no barrier between what’s in her head and the rest of the world.”

That was one of the most chilling things that has ever been said to him. “Poor Dena thought everyone could read her mind,” Dad recalls. “And I realized we were never going to get the old Dena back.”

Dena’s friends asked me what was going on when they noticed her absence. I was vague and said she was having a difficult time. It wasn’t the stigma of mental illness we were afraid of; if it was up to us, we would have told everyone the truth. But it was her story to tell.

“to Dena, there was no barrier between what was in her head and the rest of the world.”

The Aftermath

Eventually, Dena moved out of the clinic. She eventually moved in with a new boyfriend, who was our dad’s age. She got mad at me when I told her she couldn’t bring him to my Berkeley graduation, claiming his age wasn’t a reason to dislike him. Ok, I admit it, it was my main reason. But I also didn’t know him and had no desire to. My gut feelings were confirmed when I found out later that he was a drug dealer.

Not long after this, Dena told our parents that she wanted to come home. She moved back to our hometown and got an apartment. She continued her ups and downs. Her moods were mercurial; she could be happy and charming one minute and angry and nasty the next. She had many drinking binges, returned to drug use, and had a few fender benders. Her weight ballooned due to her medication, an outward change reflecting her internal one.

She was Maid of Honor in my wedding. We had been worried about how she’d be on the wedding day, but thankfully it was a good day.

For her toast, she adapted the poem I’d read at her Bat Mitzvah.

Dena (left), the author’s mom (middle), and the author (right) at the author’s wedding shower.

She fell into the common trap of thinking she was doing well enough to eschew her medications. A long conversation I had with her at our family cottage got us nowhere. Trying to convince someone with paranoia that they should stay on their meds was a losing proposition.

Having graduated from Berkeley, I was still living in the Bay Area, working at a dot-com during the Silicon Valley boom. Dena flew out to visit, but not before my husband and I got rid of our alcohol. I could tell she wasn’t doing well. While she was visiting, she ran away. Her credit card was connected to our parents’ account, so they were able to track her whereabouts. Thankfully she eventually turned up at Mom’s best friend’s place in Oregon. Jill was a kindred spirit, to whom Dena confided that she felt she would die young. She was okay with that, my sister said.

When I was pregnant with my first child, my husband and I wanted to move closer to family. We ended up in Pittsburgh, only a few hours’ drive from Buffalo. Even though we were closer in miles, I kept my distance from Dena even when we were together, worried that her effect on my emotional state would endanger my pregnancy. This was why, when she surprised me with a visit one day, I told her she couldn’t stay. It stung me to tell her that. But it was the only thing I could do.

The last time I saw Dena was when she came to Pittsburgh for my daughter’s birth. As everyone crammed into my hospital room to meet the baby, I asked Dena for a hearing aid battery. Of all the things we brought with us for the birth, we’d forgotten an extra supply of batteries. Dena came to the rescue in a way only my sister could.

Dena holding the author’s daughter.

The day after, she yelled at me in my hospital room. It was a difficult weekend for her; I was getting all the attention and had the baby she wanted. She wanted to hold the baby, but I made her take her jean jacket off because it reeked of cigarette smoke. She wasn’t happy, but she took it off. The photo of her holding my daughter is the last one I have of her. As I write this, it sits framed on my now 18 year old daughter’s bedroom shelf.

Throughout the weekend, Dena grew increasingly uncomfortable. Instead of returning home with our parents, she opted to leave early by bus, arriving to Buffalo in the middle of the night.

“I’m so glad you were here,” I told her as we kissed good bye. “I love you.”

She likely resented me for achieving milestones she hadn’t, but in the weeks that followed, she had a boyfriend and the truck and dog she’d always wanted. She talked about going to school to be a veterinary technician. But she had all kinds of ideas, and her plans always started and stopped.

Maybe this time would be different.

A few weeks after she saw me in the hospital, she had our parents and grandfather over for dinner. They told me they had a good time and laughed as they fanned away smoke from the food she burned.

“in addition to our immense grief, there was a sense of relief. Relief, accompanied by immediate guilt. ”

The Accident

Mom and Dad came to visit me and my family in Pittsburgh over Valentine’s Day weekend. The phone rang after dinner. My stomach plummeted; I knew it couldn’t be good. It was a state trooper, who informed my parents that Dena was in the hospital. She had been in a car crash.

Something told me this was the end.

Before my parents drove back to Buffalo – unknowingly passing the site of her accident – Dad and I sobbed together in the kitchen. He voiced what we were both thinking, that in addition to our immense grief, there was a sense of relief. Relief, accompanied by immediate guilt. We were always afraid of what might happen to her because of her illness. But this accident was unrelated.

We were unprepared.

Dena had sustained massive head injuries from a violent one-car crash. She was on a ventilator. The hospital kept Dena alive until our parents arrived. My husband and I drove through the night, too, going straight to my parents’ house so I could nurse before going to the hospital. While I was nursing, my parents called with the news that she was gone.

We suspect she had borrowed Mom’s car to drive to the reservation 45 minutes away to get cigarettes for cheap. Her dog was in the car. Perhaps she was distracted. More likely it was the dangerous, unexpected curve of the road after the toll booth, with its poor signage. It had been a bit rainy, and she never wore a seatbelt. She always drove her cars as she lived her life – carelessly and much too fast. The car flipped over twice and she was ejected and thrown into a ditch. Every time my parents pass this exit on the NY State Thruway, they blow a kiss. For years, my husband would make sure I was distracted as we passed the exit on the way to visit our parents.

Dena’s mental illness was mentioned in the eulogy; sadly, now we were free to address it.

The happiest day of my life was when my daughter was born and our family was there to share in our joy. Going from that extreme high to a devastating low just a short time later was almost incomprehensible. It’s a miracle I didn’t suffer from postpartum depression. If anything, my daughter saved me; she was an easy, happy baby and brought all of us joy during that horrible time. Three years later when my son was born, I gave him a name that starts with D, after Dena.

The author (left) and Dena (right).

My grief was – and still is – complex. It’s like a tennis match. The fight in the hospital would have been eclipsed by larger struggles with her desire to be an aunt and my need to protect my child. I would wonder if she was consistently taking her medication whenever she wanted to babysit. I would also wonder, why her and not me? And why did she have to deal with a mental illness in addition to deafness?

I knew so many different Denas. There’s Dena as a little girl, the happy, funny baby sister I grew up with. Then there’s teenage Dena, wild and bold. And there was mentally ill Dena. I wish I could say I remember the happy times more than the dark ones, but it’s the dark ones that seem to stay with me most.

I went to therapy, but never found a therapist I clicked with. I switched once and didn’t have the energy to do so again, given how much background I’d have to repeat. I searched for books on sibling loss to help me cope, but in 2002, there weren’t any.

Many friends have dealt with the early death of a parent; I assume it’s like feeling unmoored.

But losing a sibling is different. She was a partner I expected to go through life with, someone who’d share childhood memories and a bond like no other – especially after our parents are gone. Now she’s forever frozen in time at the age of 25, and I’m the only one left to remember our silent exchanges about cute boys.

I’ve changed in ways I couldn’t have foreseen, incorporating aspects of her personality into my own. She was fun-loving, adventurous, and a risk-taker. She never cared what other people thought. As a cautious, people-pleaser, my motto has become, “Life’s too short.” If I’m indecisive about something, repeating these words might be cliched but it helps. I keep in touch with many of her friends, for whom her memory still shines large. Those connections help sustain me.

“i wish I could say I remember the happy times more than the dark ones, but it’s the dark ones that seem to stay with me most. ”

Now we’re coming up on the 19th anniversary of her death. In a few years, I’ll have been on this earth longer without her than I have with her; that’ll be a tough milestone. I talk about her often, the good and the bad. By talking about her mental illness with my kids, it’s normalized and reduces the stigma.

Dena always wanted a tattoo. My parents found out that she’d gotten one when the hospital asked about her tattoo to confirm it was her. Later, Mom and I got tattoos in her honor; Mom has a branch on her hip with four leaves representing each of us, inked in our favorite colors.

My tattoo honoring my sister reminds me of this song in Miss Saigon:

You are sunlight and I, moon

Joined by the gods of fortune

Midnight and high noon

Sharing the sky

We have been blessed

You and I.

This article is for informational purposes only. It is not intended to be used in place of professional advice, medical treatment, or professional care in any way. This article is not intended to be and should not be a substitute for professional care, advice or treatment. Please consult with your physician or healthcare provider before changing any health regimen. This article is not intended to diagnose, treat, or prevent disease of any kind. Read our Terms & Conditions and Privacy Policy.