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

Mark

REWIND AND ERASE by Linda Rippee (PART ONE)

Today, I went and found my brother, Mark. He was lying on the sidewalk at a busy entrance to a shopping center. Cars were whizzing by. Another man was sitting there with him and, as I approached them, I could see that Mark was giving him money and asking him to count it. I was immediately suspicious. I asked my daughter to remain in the car.

I walked up quickly and called Mark’s name as I always holler his name before approaching him so not to startle him. I waited until he recognized my voice before I began conversation. Mark pulled another dollar bill from his pocket and asked me what denomination it was. I was concerned that maybe he was buying street drugs. No, that wasn’t it. Here sat another homeless person who had talked my blind brother into giving him all his money to buy a gold pocket watch. He laid out $14.00 which was all that he had. Unless that watch could verbally tell time, what on earth would a blind, gravely disabled man need with a pocket watch?

Good thing I had brought him food, water, and clothing. Mark was shirtless, but had a very heavy coat on. Today, the temperature is supposed to reach 98 degrees. I begged him to take off the coat. He refused saying the coat would be stolen. He was extremely sunburned already. The wounds on his face and around his empty eye sockets were still badly infected from two different beatings several weeks ago when he was robbed. Today, all he had with him was a small blanket. His clothing was disintegrating as he wore the same pair of pants all through the winter and spring. He didn’t have a cane to guide him. He has had 11 different canes this past year.  

I sat down next to Mark and, within seconds, it was obvious that he was delusional. He grabbed my hands and slapped them down, hard, on his leg that has a metal rod from crotch to ankle. He held both my hands down with his hands. His hands looked like leather and were cracked and bleeding. Regardless, he continued to hold my hands tightly. His entire body was trembling. He said, “We have to go back and erase each year that has passed since June 21, 1987 (the date of his motorcycle accident). Rewind and erase.”

I was shocked that he still knew that date. Yes, it was Father’s Day, but he still remembered the actual date. He proceeded to say each year backwards to 1987. With each year, he said, “Rewind & Erase!” He shook, violently, until he reached 1987. Then he grabbed and hugged me and said,” Now, don’t you feel better?”

I told him, “Yes, and I hope you do too.” He began to argue with the voices in his head, screaming that the police were implanting and growing people inside of people and controlling them. I tried to calm him and get him to eat the food I had brought him. He would take a bite, chew tiny bites, and then spit it out.

He brought up my twin. Mark doesn’t always comprehend what I tell him, but I continue to tell him the truth. CJ, my twin sister, had gotten bad news about a medical diagnosis. I shared her condition with him. He began yelling at the voices he hears and blaming those voices for all the pain and suffering of those he loves. The intent of his body language was to beat himself up. I hugged him, and once again reminded him that I love him — as I do on every visit. He didn’t want to let go and held on tight for a while. As I was saying goodby, he began crying. He said, “Someone disconnected me from my mother. They’re cutting out pieces of me.”

I slowly walked away, feeling sick to my stomach. If only I could “rewind and erase” all the horrible memories, delusions, pain, and suffering he’s had for the last three decades. Yes, Mark, I would feel better.

Linda adds: Every letter/email I’ve sent out has also been sent to the County Board of Supervisors. I’ve sent out over 1200 emails and my twin, CJ, has sent as many. Each time, we copy agencies and politicians. We’ve saturated them. We’ve sent out thousands of private messages all over the state, and made thousands of posts and comments in over 100 social media groups all over California. CJ authored the petition for AB1971* and we collected 56,000 signatures that went to the full assembly and senate. I’ve made 30 speeches speaking at public meetings. I’ve testified twice at the capitol in support of AB1971.* I’ve gone to the capitol and told my brother's story to support several other bills. There have been 12 news articles and TV interviews. Mark’s story has been published in three national blogs and used at medical conferences. We’ve friended, and are in contact with, several well-known national mental health advocates — Ron Powers, Teresa Pasquini, Leslie Carpenter, Dede Moon Ranahan, and DJ Jaffe to name a few. The Board of Supervisors are ground zero. They are aware of all that we’ve done. They stay silent and do not converse with our family. The next project we are working on is a documentary. I have many, many videos of my visits on the streets with Mark. We will make the videos available to politicians and to the public. They are undeniable. When they are shown, Solano County should hang its head in shame.

Note: Solano County has declared Mark to be competent.

*AB1971. This bill would, until January 1, 2024, expand the definition of “gravely disabled” for these purposes, as implemented in the County of Los Angeles, to also include a condition in which a person, as a result of a mental health disorder, is unable to provide for his or her basic personal needs for medical treatment, if the failure to receive medical treatment, as defined, results in a deteriorating physical condition that a medical professional, in his or her best medical judgment, attests in writing, will more likely than not, lead to death within 6 months, as specified.

See Linda’s story, “I’m Past Anger. I’m in Complete Despair.” June 6, 2019, in the archives.

Mark

Mark

TRAVIS & ME - OUR JUNE PRISON VISIT by Dede Ranahan

On Sunday, I visited Travis. I didn’t see him in May because our visiting day fell on Mother’s Day which I spent with family. He walked into the visiting area and, at first, I didn’t recognize him. His hair’s been shaved short — for summer — and he’s growing a beard. He looked great. I told him, “I really like your haircut. And your beard.”

We hugged and Travis said, “I finished reading your book.” (His mother, Kathy, sent him a copy.) Then he said the most perfect thing, “I love Pat. I love all his Facebook posts. He’s so funny. And smart. I think he’ll be an influencer for our generation. I copied the list of his favorite books. I’m going to read all of them.”

Travis’s eyes filled with tears as he spoke. My eyes filled with tears as I listened. Travis was clearly moved. “I totally get him,” he said. “I like him so much.” More tears.

I’m getting such heart-felt reactions to Sooner Than Tomorrow. In reviews, in emails, in cards and letters. Many have commented about Pat and his sense of humor. But, hearing about him from Travis, in person, with tears in his eyes, was mind-blowing for me.

I reached for his hand. “Thank you,” I said.

“I wasn’t sure what to expect when I began reading your book. And then I couldn’t put it down. You’re such a good writer.”

Travis is reading other books, too. He’s taking a college health class during the summer. “It’s really interesting. I’ve read the first three chapters. It’s about physical health, mental health, emotional health — about keeping everything in balance. I’m ready for these college classes. I wasn’t ready for them before I was sent to prison. My self-esteem is much better now. I know I can study and learn.”

Travis was also pumped about a basketball tournament he took part in on Saturday. His team (“We were the ‘crazy’ team. All of us have psych issues.”) beat five other “normal” teams. “We were champions for the day. We never played together before and we just clicked. Sports are important to me. I ran 10 miles (around the prison yard) for the soldiers who died on D-Day. To honor them. I’m in the best shape of my life.”

I asked Travis if there had been any more discussion about transferring him to a prison closer to his family in Southern California. He said, “They’re not going to move me right now. My psychiatrist and my psychologist are going to take me off lithium. It’s affecting my thyroid. Then I won’t be taking any medications. They want to watch me and see how I react. We’re all hoping I can function okay without meds.”

Travis likes his medical team. He thinks they’re competent. He thinks they care about him. “They like me,” he said. “I tell them about my feelings and my emotions. Not every client is open with them and they appreciate that I am.”

“I’m growing,” Travis continued. “I’m making the most out of my time in prison. I’m working out. I’m reading. I’m writing songs for our church service. I’m a better person than I was.”

“Travis, it sounds like you’re focusing on the positive aspects of being here. Do you think other inmates do that?”

“I don’t know. I don’t want to judge anyone else. Probably not everyone does. There are fights and other bad stuff happens. Being here is forcing me to know how to interact with others. It’s not always easy living with my cellie, but I’m learning about relationships. I was kind of a recluse before I came here. I managed a motel in the mountains and I spent a lot of time by myself.”

It feels like our conversations are evolving. Travis asked me questions, too. “How are you doing, Dede?” (good) “How’s your mom?” (good) “How’s The Jazz?” (good) “What books are you reading?” (Mama’s Last Hug by Frans De Waal, I Miss You When I Blink by Mary Laura Philpott, Another Rubber Chicken Dinner by Bev Chinello)

Visiting hours ended. It was time to leave. “Have a good month, Travis. I’ll see you in July.”

I always turn to wave at Travis as I walk away. He’s always waiting. And he waves back.

Travis & me - before his haircut.

Travis & me - before his haircut.

http://www.bit.ly/soonerthantomorrow

ONE OF THE LUCKY ONES by Sheila Ganz

When I punch in the five digit code, I steel myself to get into the elevator.  To leave my sister. To hold back the tears. I remind myself that she’s finally near me at a good facility in San Francisco, and even if I stayed another hour, I’d still have to leave. It wasn’t always this way. The five-year nightmare started in 2010 when Barbara was spiraling out of control.

It’s gut-wrenching to watch a loved one suffer emotionally and physically, and be powerless to help her. I love my sister. In our 60-something years, we’ve always been close. My sister lives with schizophrenia.

As I walk through the sliding doors and go to my car, I think back to moments we had in Brockton, Massachusetts, where she lived with our mother. Every year, when I visited, we made a point to have lunch together at a local sub place, then get crème-filled donuts covered in powdered sugar, and drive to the local park that has a small lake with geese and ducks. We found a bench and basked in the sun enjoying the peaceful surroundings. We shared our problems of the day.  Hers about a co-worker and mine about all the different aspects of making a social issue documentary film. We pondered solutions.  In the distance the rush of a waterfall smoothed things over.

The beginning of the nightmare.

It all started when Barbara’s psychiatrist retired and she couldn’t find another she liked. Her prescriptions ran out. She wasn’t getting along with Mum and called the police. When the officers saw Barbara’s disheveled state, they took her to the emergency room for a psych evaluation. But the relative, who was her healthcare proxy, didn’t believe in psychiatrists. He took her out of the hospital, that night, before a doctor could see her.

Soon after, Mum decided to sell the house and move the two of them into an assisted living facility. I flew out to help with the move. Nothing could prepare me for the shock of seeing Barbara’s furtive looks, hollow cheeks, sagging skin, and clothes hanging off of her petite frame. I was heartbroken.

Barbara’s reality was as real to her as it was unreal to us. In the unfamiliar environment, her world was fraught with danger at every turn. The food in the freezer was poison. We had to coax her to eat a few spoonfuls. Her main activity was pacing up and down the hall for hours yelling, “The police are going to put me in jail.”

I asked her not to yell because it was disturbing the other residents. She insisted, “No one else is here.”

I gave Barbara a shower and could see her ribs. Mum and I tried reasoning with the relative to get her the help she desperately needed, but to no avail. The insurmountable brick wall of the HIPAA privacy law prevented us from taking action. It was excruciating to watch my dear sister waste away.

After months of Barbara’s disruptive behavior, the relative was forced to get her medication for the schizophrenia. It helped a little bit. Then she fell and had a minor fracture to her left hip. She was moved to a rehab. Mum and I called her everyday to persuade her to eat.

Mum had congestive heart failure. She passed away in 2013, shortly after her 86th birthday. At which point, I finally had permission to move Barbara to a facility close to me and to become her healthcare proxy.

I learn about other families who have loved ones with serious mental illness.

As I researched places to move Barbara to in San Francisco, I called her everyday around one o’clock EST. It was ten in the morning for me. I did my best to encourage her to eat and deal with her fears. Often, her last words were, “Get me out of here.” I fought back the puddle of tears.

Looking for support, I joined National Alliance on Mental Illness (NAMI) and went to their group meetings. Parents and siblings with loved ones living with serious mental illness (SMI) — schizophrenia, bipolar disorder, and schizoaffective disorder — shared the struggles and obstacles to get treatment for a person with SMI. I learned that comprehensive care is a rarity. And if a loved one is over the age of 18, families are blocked from speaking with medical professionals because of the HIPAA privacy law. Their anguish was palatable.

Hospital policies designate the limited number of acute psych beds for persons who are a danger to themselves or others. If the person is gravely disabled, they become part of the revolving door system. They get help for a few days, are put back on the street, become sicker, or go to jail for a minor offense. What if that were my sister? I felt outrage at the inhumanity.

In fact, a friend suggested that I put my sister on the street, so she would qualify for help. The thought was crushing. I argued with her that I would never do that. She was insistent that this is the only way.  

I took NAMI’s Family to Family class. It was very informative. I found out about anosognosia, a mental disorder where the person is not aware they have mental illness. This certainly was the case for Barbara.

I am inspired to make a documentary.

As a teen, I took painting lessons.I went to the School of the Museum of Fine Arts in Boston. When I moved to San Francisco, I went to San Francisco State University, finished my degree, was accepted into the graduate program, and experimented with sculpture and site specific sculpture. I also took a class in poetry writing and started to write a play. At a workshop on playwriting, I heard the phrase, “personal as political.” This was it for me. I knew I wanted to use my art to make a difference.

The last Family to Family class focused on advocacy. At the end of the talk, our guest presenter asked if people wanted to get involved as an advocate. I raised my hand. “I want to make a documentary that tells our stories.” Everyone sitting around the conference table clapped.

Now, I’m working on my third documentary. PIECE OF MIND is about the internal and external barriers to care for persons living with serious mental illness. Stories are told through the compelling, intimate narratives of a mother whose son has schizophrenia and sprays chemicals on his body to kill germs; Japanese American siblings, with a sister shot by police when she refused to go to the hospital for evaluation of schizoaffective disorder, who take her case to the US Supreme Court; and a man, with bipolar disorder, whose failed suicide attempt leads to events that transform his life.

Couched in these deeply personal stories, are solutions to the dire consequences of this public health crisis. The quest for healing and normalcy sheds light on the larger issues of the lack of inpatient psychiatric beds, and the role of law enforcement in approaching persons in the midst of a psychotic break. PIECE OF MIND will inspire greater awareness and compassion, and serve as an advocacy tool for comprehensive mental health care for persons living with serious mental illness.

In April 2014, I got a call. Barbara fell, again. This time, she needed a partial hip replacement. I felt bad for her injury, but I instantly knew this meant that she had a physical disability and would qualify for MediCal to live in a skilled nursing facility. It took another year on a waiting list. Then, I moved my sister to a good facility near me.

Now, when I drive home from seeing Barbara, I feel good knowing I can help her with things. She always thanks me. She’s eating well. She’s on medication. And I try and roll with it when the delusions take over. Barbara’s never been homeless, or involved with the police. My sister is one of the lucky ones.

Visit www.pieceofmindfilm.com to watch the trailer and get more info.

Sheila Ganz, Director / Producer credits: Emmy-nominated documentary ON LIFE’S TERMS: MOTHERS IN RECOVERY, which follows five women in a residential treatment program, who are determined to learn recovery and parenting skills to regain custody of their young children.  www.onlifesterms.com  UNLOCKING THE HEART OF ADOPTION about the lifelong process of adoption for adoptees, first/birthparents and adoptive parents in same race and transracial adoptions.  www.unlockingtheheart.com  Contact: sheila.ganz@gmail.com.  

Sheila

Sheila

ONE MOM'S LIST OF SMI NEEDS by Stacy Kollias

The “mental health system” isn’t really a system of care. There is no real “system” that exists.

We need funding to be spent on inpatient beds where the SMI (serious mental illness) patient stays until the “right” meds are found and he/she has fully stabilized. Not the treat and street situation we have now.

We need 24/7 intense supportive housing after discharge to keep the SMI on track with meds, shelter, food, and safety.

We need to build our housing infrastructure to accommodate differing levels of care for this population so, as they progress in recovery, they have a home they can afford and remain in.

We need to build outpatient clinics who work closely with the hospitals and residential treatment facilities to continue the same level of care when SMI are outpatients.

We need to change our involuntary civil commitment laws to mandate medication for inpatient and outpatients.

We need to repeal the IMD Exclusion.

We need HIPAA reform.

We need to fund research for schizophrenia and other serious mental illnesses.

We need to stop the discrimination of SMI and call it what it is — a brain disease.

We need neurologists and psychiatrists to work together and we need more of them.

We need clinical nurses and competent case workers.

We need so many vital things that aren’t currently in place, or they are failing miserably, and we watch our loved ones living their lives as the walking dead.

I would love to help everyone with a mental illness, but the truth is the chronically symptomatic SMI have been getting the shaft for generations. Since they can’t usually grasp their own best interests and needs — let alone articulate them in a way that will be heard and respected — they’re easily pushed to the back of the line. 

Stacy

Stacy