BEYOND MY UNDERSTANDING OF WHAT BEING HUMAN MEANS by CJ Hanson (PART TWO)

To my twin sister, Linda Rippee,

I just came on Facebook, after taking a nap. I could barely read through your post without tears flowing down my face like a stream from a mountain top. A stream that never ends. I didn't think I had this many tears left. I feel so helpless, with my own illnesses, that I am unable to help with a physical presence. The responsibility and the experience of actually interacting with Mark have fallen on your shoulders.

Is there such a thing as survivor's guilt without having actually lost someone? I can't describe the pain I feel any other way, so I’m at a loss. I’m at a loss at the pain and suffering he endures every day on the streets, knowing that we have no legal right to force him to live with the few of us left, nor is it even possible. Knowing that we have fought for 32 years trying to help him and make his life better, and knowing that he blames us for allowing him to live as the doctors didn't believe that he would. Knowing that the laws in this county, state, and nation are against families of loved ones who suffer from traumatic brain Injury and serious mental illness. Knowing that, no matter how hard we’ve fought every day to change minds, hearts, rules, and laws, so far we have failed. We have failed.

I have such a hard time believing that we’ve failed, but we have. It matters not that we have fought every day. Every single day for 32 years. Yes, for a while he was able to live a somewhat normal life until the mental illness set in. The doctors said it would happen eventually, but what has happened to him since? The apathy of people with the power to change policies, rules, and laws is a clear indication that, not only have our efforts failed, but the lawmakers have failed. How many potential bills have failed over and over as the lawmakers insist there is more legislation now for the seriously mentally ill than ever before. That may be true, but they keep failing. Failing the sufferers. Failing the families. Failing society. No human being should have to live without options like our brother. I am having difficulty understanding anything anymore about this travesty.

Facing my own mortality only makes me feel more like a failure. I still have in my mind that 12-year-old boy who tracked me down at a friend’s house after I had moved away from home at 18, and clung to me begging me to move back home. I still have in my mind seeing Mark that day of the accident, barbecuing at Mom and Dad's house and telling us how he wasn't going to keep that motorcycle but was putting it up for sale. I still have in my mind that he was on his way to my home, in Fairfield, that night to see me when the accident happened.

Did I fail him, Linda? Did I fail him by making the decision to let the doctors try to save him? Was I wrong to want him to live? I thought I was making the right choices while I actually had power of attorney back then. I'm not so sure, now. What are we to do now? Lawmakers and officials have tired of our continued efforts and have turned their own blind eyes away from the situation. No one, who has any power to give families back their rights, or to change the laws preventing us from helping him, cares. Not really.

I have no faith in lawmakers’ motivations anymore. Not one has proven that they care enough about the families of the seriously mentally ill to truly push through what needs to be done to make a real difference. I can't stop crying — for Mark, and how he lives and suffers; for you, being the last one in our family to be able to go out and find him; for myself, for being so helpless in my own infirm condition and disability; for Mom, who will leave this earth knowing her youngest child will most likely die on the streets; for all the ignorant and uninformed people who find such joy in blaming our family; for those in the community who do care and have tried to help Mark and us for so long; for our society; for this very world.

My despair and tears are beyond my ability to explain anymore. Beyond my understanding of what being human means.

See Linda’s story yesterday, June 26, 2019. “Rewind and Erase.”

Mark

FIGHTING FOR CHANGE by Allison Brown

My story is pretty long and spans generations. My dad was sexually abused by an uncle beginning at the age of three until he was about 13. At age 17, this uncle died and my dad began having episodes of anxiety. In reality, my dad was experiencing manic episodes followed by severe depression.

By the 1980s, he married my mom and had three children. I was four the first time I witnessed my dad hallucinate. He was convinced my baby brother was a demon. He held him up by his feet and told my mother he had to kill him. My older brother escaped to a neighbor’s house and called for help. I watched from a window as he punched my mother in the face. Police struggled to restrain my father and take him away. He went to Greystone Hospital in New Jersey where he was diagnosed as manic depressive. 

My dad’s “episodes,” as we called them, happened many times throughout my young childhood. Most of them were violent but only in the sense that he saw demons and was attempting to protect people from the demons. 

In 1992, my dad has another episode. My parents were divorced and my younger brother and I were spending the weekend with him. The visit was supposed to be supervised by my grandfather, but the family knew something was off. They told us to leave. I locked my brother and myself in a bathroom until my aunt arrived. Later that day, my dad called my mom to tell her my brother was a ghost. She persuaded my dad to bring us to my grandparents house where she met us.

Allison’s father and grandmother

We had one last Sunday family dinner. My grandmother made her famous sauce and everyone pleaded with my dad to go to the hospital. He refused. There was nothing anyone could do. The next day, he went back to my grandparents’ house and asked to be taken to the hospital. My grandfather had one errand to run before he took him. He was gone 15 minutes. When he came home, he found my father foaming at the mouth standing over my grandmother’s lifeless body. He shouted “The queen demon is dead.”

My dad was found “not guilty” by reason of insanity and moved to the Greystone Psychiatric Hospital where he spent over a decade. He was then released on what is essentially parole for the mentally ill. He first transitioned into living with my aunt and, eventually, into his own apartment, but his illness was not curable. He continued to cycle through episodes. He spent the better part of another decade at Ancora Psychiatric Hospital in New Jersey.

As I came into adulthood, I became an advocate for care for my dad. I also advocated for the court to keep monitoring him for his safety and for the safety of all around him. Many times doctors refused to talk to me because of the HIPAA law. They’d listen to the signs I was seeing then tell me, "He doesn’t seem dangerous to us.” In 2012, after six months of communicating with his doctor to no avail, the doctor called to tell me, “Your father body-slammed me, stripped himself naked, and ran down the highway.” My father was eventually diagnosed with bipolar III disorder and schizoaffective disorder. He spent another five years away. Our story is sad and complicated and layered. It scarred my family.

My older brother turned to drugs. He had six children, by as many women, and was incarcerated for felony domestic assault. My husband and I adopted his youngest son at the age of nine but we were too late. He had been so traumatized that he was unable to function in our house. We had intense in-home therapy for four years. The safety of my own children was paramount. My nephew was Baker Acted (involuntarily committed) in Florida four times in one month for suicidal ideations. One time, a deputy came to the house and told me, “You just need to handle him better. This seems like a family issue.”

My nephew became violent in our home and was eventually removed in cuffs. The state did nothing to help us. The paper wrote a story about us. Nothing changed. Eventually, the court accepted our surrender of parental rights and put my nephew in a group home.

Our family has been knocked down so many times by the failures in the system. We have advocated for help. For change. For a better system. We’ve gotten no where. I believe families should have the right to discuss mental health issues with doctors and therapists even if it goes against what the mentally ill person wants. I believe in continuity of care, from therapist to therapist, which rarely happens. I believe in better training for our officers, teachers, and hospital staff. I believe in common sense laws that could save lives and protect our mentally ill loved ones as well.

Note: After two years in care, Allison’s nephew is healing. He’s receiving treatment and learning to cope with the trauma he’s endured.