STUCK IN TEXAS by Joyce Berryman

Leah was born September 13, 1986. She was a miracle baby. I'd already given birth to three daughters and had my tubes snipped after the third. Later, my husband and I decided to reverse my operation. After one tubal pregnancy and a miscarriage, Leah arrived.
Leah's 31st birthday

Leah's 31st birthday

Leah had three teenage sisters to love and help care for her. Life was good. I gave Leah many advantages — private pre-school, pre-k, and kindergarten. She struggled in math and reading, so I hired a private tutor. Her grades in math brought up the suggestion to have her evaluated for possible ADHD, but her father refused to let this happen. We divorced after her fifth school year. 

In high school, Leah did okay. She loved music, took private lessons in voice, and performed with a music group. After high school, Leah attended community college, and worked at a super market.  During her second year of college, things began to unravel. Her first relationship ended, she dropped her classes, and quit her job. She stayed at home and started talking to herself. She called her voices the " people who live in my head."

Even though I'd gone back to school and received a degree in Paraprofessional/Special Education, I didn't see the warning signs. I asked Leah to see a doctor with no success. When she finally begged to see a doctor herself, I took her to a hospital emergency room only to be told there were no beds. This was in Washington State. The ER staff handed me some valium and antidepressants. Leah threw the pills down the toilet, so we went back and they gave us more. 

By this time, my whole family was trying to get Leah the treatment she needed. My sister lives in San Marcos, Texas. She told us about a community mental health service there that takes anyone regardless of income or insurance. So, we headed for Texas. Once in Texas, Leah improved a lot. Leah worked in the bakery at a major super market  for almost two years, never missing a day of work, often taking last minute shifts for other people. It was hard to think she was ill at this time. We were living with my two older sisters. My oldest sister has bi-polar disorder and with her moods, along with Leah's car breaking down, things began to unravel again.

Leah left home on foot in 90-100 degree temperatures. She returned home with blisters that no one in their right mind could walk on. Another time she left for four months and lived in a tent 20 miles from San Marcos. This was in the winter.  She tried to hold onto a job at McDonald's. Her boss wanted to help her and encouraged her to go home. It rains often in the hill country in winter, and some nights Leah tried to sleep sitting up in a plastic tub.  McDonald's had a truck stop close by with a bathroom. She was so tired she locked the bathroom door and went to sleep on the floor. The next morning, the truck stop manager told her, "If you ever sleep here again, I'll have you arrested." Leah's little encampment along side an I-35 access road was about a mile from the highway patrol office. They told her she had to move to a campground five miles away to be legal. 

The fear that dug into every fiber of my being, was not knowing if my daughter was okay and, if she did come home, how would I protect her? My fear abated when a crisis intervention officer typed a letter on official police stationery saying that Leah was fragile, severely mentally ill, and needed to be held, if found, because she had to take medication. 

When she did come home that spring, a judge signed an order that she was a danger to herself. Since then, she's been hospitalized twice. The second hospitalization was voluntary. She's been on many meds that make her worse. Sometimes she'd slap herself until her face was red and swollen. Sometimes, she'd come out of a trance and say, "Mommy, it's not me, it's the voices." I'd try to hold her hands, but she'd ask me to move away because "my hands will bite you."

Now Leah's on monthly shots of Invega and is doing better. It will be a year in November. I have a lot to be grateful for. Her treatment team includes me in everything. Leah is on Medicaid and I didn't have to beg for it. It took a year, but she received services for free, and Johnson & Johnson gave her the meds until Medicaid started.

We are a family working together to help Leah. She gets $470 a month from social security which is not enough to be independent. Young people with serious mental illnesses are handed a huge financial problem. If they can't work, they never get a chance to pay into social security. 

Everyone says we are so fortunate here in San Marcos. I agree but we're also held hostage to a place where Leah can get help. San Marcos is away from home and expensive to live in. Half of our income goes to rent. Leah and I share a one bedroom apartment. The rent increases every year by $40. If we could afford to buy a car, I could work evenings but all my energy goes to my daughter.

We appreciate what we have, but I wonder what happened to all the promises for community services after de-institutionalization in 1955? I believe the federal government owes compensation to full-time caretakers who took over the job of hospital staff when they abandoned thousands of people and families. The cost of lives and unmitigated suffering is unknown by any records. 

TRAPPED IN A MAZE by Kevin

Sometimes a few words, said by someone you love, can unintentionally bring forth the most horrid of nightmares. My mother recently mentioned to me how my brother, who is struggling with mental illness, “knows something is wrong”. It was said with no real emotion or emphasis and the conversation quickly moved on, but I have not forgotten those words.

Does my brother truly sense that something is wrong? Is he trapped in some maze fighting to find a way out, a way to correct the trajectory of his life? Are his delusions and seemingly random actions his way of trying to get back to the life he remembers? When he could pick up the guitar and play all night or talk to my mother about anything, though usually it turned to politics until 2 in the morning? Does he remember these encounters or perhaps a sense of them?

I assumed they were lost to him like his love for basketball, like his love for hiking and his love of trying to hit me with tennis balls when my back was turned. I was more at ease when I thought of him wandering in a haze, focused on his delusions and writings with no real care of the past or what was lost. One can't lose something if they don't remember losing it in the first place. But, if he does remember, the pain of that loss is something I cannot comprehend.

My tears remind me how much I love him.

A poem my brother wrote for our mother

A poem my brother wrote for our mother

THE WAY SOCIETY TEACHES US TO THINK ABOUT SMI IS WRONG by Nikki Landis

Nikki and Kevin

Nikki and Kevin

Another hospitalization. Please keep us in your prayers. 

I always question how much I want to put out there, but not talking about it reinforces stigma. Kevin's brain isn't working right. It's just another organ, folks, with a disease just like diabetes or heart disease. Unfortunately years of stigma and the "mental illness" myth has severely impacted research and treatment. 

Does our society allow 80-year-old patients with dementia decide they don't want to take their meds and live on the street? Or do we make sure they have a warm bed, a roof, food, clothing, and medications? There is almost no difference in symptoms between someone with serious mental illness (SMI) and someone with dementia/Alzheimer's. But nobody says, "He has the right to be homeless and refuse medication" about someone with dementia. 

Someone with heart disease isn't accused of being heartless. Everyone recognizes the heart that pumps our blood isn't the same thing as the heart we fall in love with. When a brain is sick, it isn't the same as the mind. Kevin's mind is still in there. It may not be able to control his brain malfunctioning, but it is completely separate from his actual brain. 

We call it mental illness, but it does a great disservice to the patients. Their mind, the part that loves and cares and wants to be happy, is still in there. There are many disease processes that affect thinking that aren't stigmatized. Yet I know dozens of families that are going through heartbreaking situations with SMI in their families and are scared to talk about it. 

I've never seen the fear of Parkinson's patients that I see of mentally ill patients. How many people know that Schizophrenia and Parkinson's disease are the same disease process? Hypoglycemia is to Diabetes what Parkinson's is to Schizophrenia. Simply different sides of the same coin. Over 50% of Parkinson's patients experience psychosis.

So while Kevin is in the hospital fighting a sickness that is trying to take his life, please take the time to look differently at the woman in the mall having a conversation with herself. Or the man pushing the shopping cart down the street that hasn't showered in a week. They are absolutely no different from the dementia patient in a care facility, or the Parkinson's patient in a warm bed, except that our society doesn't see them. Our society gives them "the right" to live on the streets hungry and alone. 

And don't forget the veterans who risked their lives, many of them giving everything except their lives, who have been left to fend for themselves by a government that signed a contract to take care of them. There are thousands of veterans being mistreated in "Behavioral Health Units" at VA hospitals across the country. As long as our government (and every single one of us that has a voice) allow the VA to even say the phrase "Behavioral Health" in regards to our veterans with brain diseases stemming from chemicals, burn pits, controversial medication practices, PTSD, military sexual assault (which is rampant, people), we are allowing the mistreatment to continue. 

I can't change the world. But maybe, as I sit here looking at my beautiful children who love their father despite his brain not working correctly, I can get a few people to change the way they look at things. The way society teaches us to think about SMI is wrong. The seriously mentally ill (neuropsychological disease, brain disease), are not happy living as though they don't matter. That's a lie everyone tells themselves so they can keep ignoring the problem. People with SMI have families who love them and have tried to move mountains to help them. There are laws to protect their "right to be sick," even though society wouldn't allow someone with any other disease process that significantly impairs thinking to exercise that "right."