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I remember visiting the World Trade Center with my family when I was 19 or 20 years old. We rode up past the 100th floor and enjoyed sushi with an amazing view at the Windows on the World restaurant. After dinner and the stomach lurching ride down the elevator, we wandered in the courtyard between the two buildings. There was a man – I suspected he was homeless –sitting on the ground with his back resting against the wall of the central fountain. He was muttering to himself and pantomiming as if he were eating a meal; hand cupped under an imaginary plate while the other moved up and down towards his mouth, holding an imaginary fork. Suddenly, he jumped up and reached for an imaginary weapon…rifle? He ducked low, looking up at the sky, darting around the wall of the fountain, behind potted plants, and even groups of people as he made his way through what I think was his imaginary jungle. Mind you, this was in the early 80’s and he looked about my father’s age. I surmised he likely fought in the Vietnam war.
Those he ducked behind behaved in true New York fashion, paying him no mind and carrying on with their day. That struck me as fascinating. Here was this man, behaving irrationally in public, and no one paid him any mind. And I was memorized with him. In fact, over 30 years later, I still think of him often and wonder where he is. I wonder how he is.
I did not understand anything about mental illness, post-traumatic stress disorder (PTSD) or delusional behavior. This was my first exposure to what it could look like. But over the years as I began to work with agencies that delivered care to the mentally ill, I began to grasp how widespread it is. Recently, my daughter was diagnosed with a serious mental illness and it has rocked our very world. My daughter and I wished to share her journey. You see, it is not just the afflicted that struggles when mental illness occurs. Families are deeply affected and often do not know how to cope with it. I believe that much of that coping begins with accepting that mental illness is a disease. Not a decision.
My daughter suffered trauma through much of her childhood but all her years growing up, she appeared to be a strong and fierce child and then a strong and fierce woman. She pushed herself beyond her limits, working as a carpenter, car and motorcycle mechanic, and volunteer firefighter and paramedic. Her nickname was Mighty Mouse because of her small stature, huge personality, and her courage. The silliest things delighted her. I loved her laugh – it was mischievous and contagious. I was ever so proud of her.
But then everything changed, and it felt like it all changed overnight. Looking back, I see the signs now but I did not recognize them for what they were. She did a stellar job of hiding her inner pain until she could hide it no longer. All her hurting came out in a suicide attempt almost two years ago, which we never saw coming. Thankfully, she survived. But the mental illness that pushed her towards suicide and self-harm remains. The signs are no longer subtle. As I watched my child unravel, I watched our family grieve as we each tried to adjust to the not so Mighty Mouse.
Her clinical diagnosis is schizoaffective disorder with complex PTSD. What that looks like for us is that she creates her own reality. She hears voices, telling her that she should hurt herself. She sees things that aren’t there. The traumas we suffered during her childhood are magnified in her mind and when she is in a delusional state, that trauma is distorted, and time is fluid. But the telling of these “memories” are so real to her, even I sometimes struggle to weed the truth from her version of it. And I was there! She doesn’t sleep more than a couple of hours a day. When her anxiety builds too much, she looks to pain for release. My heart breaks every time she visits with a new scar or injury. This behavior absolutely crushes me.
I wake every morning, wondering if she is still alive.
Her sisters were angry at her. They believed she was making all of this up, looking for attention and sympathy. They avoided contact with her because they simply did not know how to deal with her. She kind of scared us. We were frightened at how weak and angry she suddenly was. She sometimes blamed us for our past and vacillated between being resentful and forgiving. I wanted to avoid her negativity and yet, I was afraid that if I didn’t give her the right amount of sympathy and attention, she would feel abandoned or that I didn’t care enough about her and try again to take her life. I resented being held an emotional hostage.
Immediately after the suicide attempt, she was hospitalized for a few weeks. When she was released, we felt largely on our own. She started seeing a private therapist and attending group sessions, but she couldn’t connect. She lost her job, unable to manage the anxiety in the aftermath. Medications that were prescribed en masse during hospitalization were difficult to manage and even more difficult to pay for without health insurance. We were given very little information for what to expect or how to navigate this new world. Her friends were very supportive and kind at first but little by little, fell away, at a loss for how to relate to her. Their discomfort in her presence was palpable.
My husband and I made phone calls, reached out to colleagues, insurance plans and mental health agencies. Little by little, things began to stabilize enough that we could breathe – talk about it, digest, and plan. Our journey was slow and full of apprehension and frustration speckled with moments of triumph. We continue making progress.
Families are often at a loss as to how to deal with their mentally ill family member and do their best to support that individual, but we do it without a compass. In a sense, mental illness is contagious. I can tell you from my own experience that dealing with my daughter’s struggle has impacted my own sense of happiness and anxiety. Mental illness has divided the family. When we are with her, we are often hesitant – unsure of how to behave. We grit our teeth when the schizophrenia is in full swing and agonize when the PTSD has its grip on her. And we do not trust when she acts like the old Mighty Mouse.
Mental Illness is so prevalent in the United States that 1 in 5 adults experience mental illness in a given year1. 1 in 25 adults live with a serious mental illness. 2.7 million adults made a non-fatal suicide attempt2 in 2015 and more than 90% of those who die by suicide have a mental health condition3. Neuropsychiatric disorders are the leading cause of disability in the United States. Untreated mental illness often goes hand-in-hand with homelessness and substance abuse.
So, what do we do? What can you do when your family is affected by mental illness? To start, talk about the elephant in the room. Get educated. Be supportive and allow yourself to be supported. Accept that this may be a long road and the climate will likely change at every turn. Let go of the stigma of mental illness and treat it like you would if your loved one had diabetes or anemia. Things can be done to manage it, but a cure may not be in the immediate future. Help them find support and therapy and hold them accountable for participating in their own care. Consider counseling or other professional help for yourself and other family members. Take care of your physical health. No one needs to be alone on this journey.
There are many qualified agencies in cities across the nation. SAMHSA (Substance Abuse and Mental Health Services Administration) and NIMH (National Institute of Mental Health) publish a directory4 of treatment facilities across the nation every year. The directory offers a comprehensive list of Federal, State and Local government, and private agencies that provide mental health treatment services. These services range from emergency and residential to individual and group psychotherapy.
Mental Health America5 has led the observance of May is Mental Health Awareness Month since 1949 and is the most highly recognized awareness event in the nation. They have reached millions of people through media, local events and screenings6 and this year’s focus is on how healthy habits can affect your mental health. You see, mental health is not just a neuropsychiatric issue. Whole Health is the path to a healthier body and a happier mind. For example, did you know that your gut and your mind are connected? What you eat can affect the way we think and feel and what you think and feel can affect the way our gut works! The adage “an apple a day keeps the doctor away” does not just apply to your physical well-being. Studies show that exercise reduces anxiety and increases the hormones that unlock feelings of content and happiness. To learn more about how diet and fitness affect your mental health and easy ways to improve your mood, look for events in your area.