In my case, I've come to the realization that, although very much impacted by serious mental illness in many of my family members, I rarely talk about what it looks like and feels like — to me. It is, of course, the biggest motivator towards my founding the organization Grow a Strong Family for family members to receive the information and support so desperately needed. I realize there's a healing power in sharing these deeply felt emotions and, as is taught in 12 step programs, a problem shared is a problem halved.
When I was five, my family moved from a veteran’s development in Flushing, New York to live in my grandparents' two family house in Bayside. This was a big move from a relatively crowded neighborhood to a quiet suburban community. My grandfather was retired and became a founding member of AA in Queens, New York. My grandma was manic-depressive (now referred to as bipolar) and in and out of the hospital. The move meant that my mom would take care of us (two little girls, five and nine) and her mother. It was the time when lithium was first introduced and little was known about it. The state hospitals were colonies where the very sick would live out their lives. In the middle were the occasional “regulars,” like my grandma, who'd become too sick (manic and not sleeping for a week before plummeting to suicide attempts or immobility and staying in bed for weeks on end) and return home when stable only to return as another episode would strike. It became our job to monitor grandma. We'd call mom, mom would have her hospitalized, and then grandpa would get her when she was ready to come home. Mom would visit; us kids rarely. Throughout this, we didn't talk about grandma or the impact her serious mental illness was having on us.
Fast forward. I went to college to become a social worker. Although my education has since taken many turns, the influence of my grandmother's suffering and the family silence left a deep scar in my soul. I wanted better services. I really wanted more efficient communication and understanding for our family. I wanted solutions that would support the whole family.
I danced around my calling, even with education, professional training, community work, and a strong focus on family until my beloved daughter, Erika, was diagnosed with a serious mental illness at age 25. In the interim, other family members had been diagnosed and treated, but there had never been a conversation about symptoms or the impact on the family unless I brought it up.
My daughter and I were very close. She was a velcro child. She was sensitive, sweet, creative, bright, had a great sense of humor, and knew she was loved and supported no matter what. Ours was a bond I’d dreamed about since I was a child and wanted to be a mother. We had similar interests, played games together, went on trips, shared music, and enjoyed a convivial relationship. There were times, of course, when there were family issues and our family addressed them openly and honestly. We knew how to ask for and receive help. For example, after graduating with her BA, it was hard for Erika to find work. We supported her need to be independent, while managing depression, by providing financial and emotional support. Even with all that, serious mental illness distorted our relationships, caused confusion, and tore us apart.
When she was first diagnosed, Erika relied on me in ways that had never been needed before. There was a plea to “help me understand.” “Come to my med appointment with me.” “Help me with graduate school.” “Help me with my assignments.” It was hard for both of us since we were assuming uncomfortable roles.
At the time, she had an awesome prescriber who was excellent at explaining the symptoms, the illness, and how to manage it. My daughter had a strong support system and the odds looked good for her recovering from her first manic episode with little negative consequence. However, she was also making medication decisions that prolonged her instability. During this period, she recognized that she needed more frequent therapy sessions but her past therapist was unavailable. She needed me to help her find a new therapist, which I did, and I made sure to emphasize that the work needed to be around her diagnosis and how to manage it.
By the time she finally ended up on lithium, (to which she responded, “Why did I wait so long?”) the nature of her therapy work changed and focused on historical family issues. Why any therapist would do this kind of work with an unstable client is beyond me. While my daughter was getting clearer, the focus was on rewriting the past and a rift grew between us. It went from, “I need space,” to “I hate you! You've never kept me safe!” The “space” grew.
After six months, I started a campaign to reconnect by sending funny cards, postcards, cookies, and other care packages but Erika emailed me and told me to stop. She said, “I hate your attempts to buy me off. Don’t waste my time. I just throw everything away.” So, I stopped. At another point, my husband, her dad, was in the hospital and I texted her and her response was, “I don’t care.” A year later, her uncle died and I emailed her to let her know. Her response was “Send my condolences. I really don’t care.” In spite of all of this, I held onto the hope that she would stabilize and return. Her responses were very hurtful. I found myself alternating between extreme anger (retroactive abortion anyone?) to overwhelming compassion because I knew that, as much as I missed her, she had to miss me even more. I was always the "I'm here for you" person for her and her illness pushed me away.
After a couple of years of silence, Erika defaulted on the student loans I co-signed on her behalf. I called her to see about resolving the loan issue. With no response, I decided to send her the things I held in storage for her. I didn't want her to lose her childhood mementos just because I sent them so I used the name and address of someone she was in contact with as the return address. Oh, my. This caused such a ruckus. She took out a restraining order on me and dragged me to court to defend myself. That is when I found out she had changed her name. When I first received the restraining order, I said to the officer, “It's very easy to stay away from someone you don’t know.” Alas. I brought a lawyer to court with me and the order was vacated since there was no threat involved. As we left, my attorney said, “Stay away. No more contact. She’s not safe for you.” And I have. It's been two years since that incident and there's been no contact.
I think about Erika everyday as I accept that, for her, this is what her illness looks like. She has no family support. She has no ties to her own foundation. Through her illness, she's morphed into a person I can't connect with and a way of being that is anathema to me. Yet, I miss the daughter I knew and loved. I grieve for her everyday. I want her to find her way back to me. I don't know where she is, what she's doing, or how she's doing.
On the other hand, I still have much work to do as I'm the primary support and case manager for another family member with serious mental illness. It's an uphill battle. The work is difficult because models of care don't acknowledge serious mental illness or the lack of insight, resources, and ability.
I founded my organization because I needed to understand what was not being made clear to me as a family member. With so much focus on the identified client, the family system is ignored. The outcomes are much better for everyone when there's open communication, factual education, and an understanding of how to manage serious mental illness effectively.