big brother
“Happiness is beneficial for the body, but it is grief that develops the powers of the mind.”
— Marcel Proust
Max — the sack
If I take away six water bottles from the bottles in my box, I’ll have six bottles in the Kroger’s sack and I can still stack them by putting six and six in the row to make 12 and then the other six more on top of one row of the 12 makes 18. I can put six more bottles and put those on top too, that will be 12 on the bottom row and 12 on the top row and I will have 24 bottles. On the pink note paper I can make 24 signs and tape them with 24 pieces of Scotch tape to the bottles. Each one has to say “Happy Mother’s Day.” This is the present to my brother’s wife. She lives in Austin and she is married to my brother. They live in Austin. He is coming to Houston so I can give him this present for her Mother’s Day. I have a Mother’s Day card too. I like her. She’s nice to me. It is a good present. I live in Houston with my girlfriend except for when she’s at her sister’s house. We have a good supply of water bottles that I buy at Kroger’s. I try to keep at least 20 cases of water in my house. There are 48 bottles in a case. (48 x 20 = 960 bottles) Drinking water is a good healthy thing to do. My girlfriend always tells me I should drink a lot of water, and so that’s what I do. I took 24 bottles from the case I opened. There were 48 bottles and now there are 24 in the box. I can get 24 more bottles tomorrow for my box. I also bought a card for my mother because she’s my mother. I need more newspapers for the Kroger’s sack I’ll give to my brother.
Max’s brother — family medical history, part 1
Max is my older brother. He was initially diagnosed as a high-functioning paranoid schizophrenic with a borderline IQ level and multiple personality disorders that remain undiagnosed. The Mayo Clinic defines him this way:
“Paranoid schizophrenia is one of several types of schizophrenia, a chronic mental illness in which a person loses touch with reality (psychosis). The classic features of paranoid schizophrenia are having delusions and hearing things that aren’t real. With paranoid schizophrenia, your ability to think and function in daily life may be better than with other types of schizophrenia. With effective treatment, you can manage the symptoms of paranoid schizophrenia and work toward leading a happier, healthier life.”
Max has never led a happier, healthier life. At 18 months, he was diagnosed with “an undefined abnormality” and again in elementary school as “low functioning.” In high school, he was labeled low functioning with identifiable personality disorders. As a young adult, he graduated to paranoid schizophrenia. He understood he was different but was more embarrassed about being Jewish and the kids who threw pennies at him. Each year, the state of Texas re-tests him hoping to deny his benefits if he passes. Do they think he will suddenly be cured? This fall, he will be 64 years old. Break out the balloons and party hats.
Max — the testers
The testers are mean. They make me feel bad and they don’t like me. I have to go in their white rooms and put the puzzles together and answer the same questions over and over. My answers are never right and they make me sit for hours to see what I can do but these tests they give me — words, puzzles, pictures — can’t explain what’s wrong. They just put me down. They want to take my money and they don’t ever help me. They are Star Trek robots in white coats. My brother says we have to go there but they won’t ever help me. They stand right in front of me and talk about me. I don’t understand what they’re saying but I know it’s not good and I know nothing they do will help me. I am invisible to them. I wish I never had to go back there.
Max’s brother — family medical history, part 2
Mental illness is a mental prison nightmare; not only for my brother but for my entire family. It’s an endless battle of orchestrating multiple appointments, dealing with heartless decision makers, witnessing humiliating experiences. My family has had to fight all these battles for my brother who is just stuck in the middle, somewhat helpless, always frustrated, with no escape.
Max is the oldest of four brothers born in the first half of the 1950s to a working class family with no money to spare for special support. From the beginning, there were clues that he was mentally challenged: slow to walk, talk, and learn. His interaction skills and emotional responses were limited and often inappropriate. He was tested and re-tested — too many times to track, and in numerous settings by medical doctors, psychologists, social workers, and counselors. All concluded he had a learning disability with varying descriptions and cataloging, depending on the whims of the assessor.
Growing up in Oklahoma as one of four children, Max’s emotional needs were overwhelming. He was sent to an institution to develop life skills: reading, writing, counting, hygiene, and manners. When we moved to Texas, Max came with us. In Texas, my brother was proclaimed, “mentally retarded” by Texas Mental Health Mental Retardation Administration (MHMRA). He attended special education classes in my high school. Graduation led him to early adult chaos: an endless series of failed and low-level jobs. In the 21st century, MHMRA has a kinder gentler term for his condition. Yet, their capacity to view him as a person of value remains unchanged. He once asked our Mom, “What’s wrong with me?” No one has ever had a real answer for that question. He is my brother and I love him; but that was never the question.
Max — transportation
I ride the bus with my girlfriend. She walks funny. Most people can’t understand when she talks but I can. She falls down sometimes but some bus people don’t care and they try to push her out of the way. Sometimes, the people just stare at us. Sometimes they laugh at us, especially when my girlfriend starts talking. We know they are laughing at us. They think we don’t see them but we see them and we hear them. There’s nothing we can do about it. I used to carry a stick, just in case, but my brother told me not to because I could get in a fight and get hurt bad. I still think I should carry the stick, just in case we need it. Maybe I won’t tell him.
Sometimes we call Frank. He’s the guy that gives us a ride for $20. My brother says to stop doing this for short rides because Frank charges $20 for every ride. My brother says that’s too much money to go four blocks. My girlfriend doesn’t like to walk and my knees hurt all the time.
Max’s brother — lists
People to meet with in Houston:
1. MHMRA representative re: disability payment discrepancies
2. Banks re: error in Max’s current bank statement and his trust account
3. Heath Care Services Representative re: issues with Max’s caregiver
4. Dietician re: Max’s nutrition plan
5. Primary care doctor/nurse practitioner re: reviewing Max’s medications and lab results
6. Social Security representative re: understanding Max’s new benefits
7. Sheltered Workshop Supervisor re: funding issues and target date for closing their doors
8. Our mom — re: make dinner plans and get gift for Max to give mom.
Discuss with Max:
1. Bank statement — tracking expenses because he’s overdrawn on his checking account again
2. Diet — eating the foods that will kill him
3. Diabetes — controlling blood sugar with medicine, diet, and exercise
4. Hygiene (particularly dental care) — brushing and flossing — dentist says all teeth are decaying
5. Apartment — landlord is concerned about recent activities (cutting down small trees on the property: leaving alarming notes for surrounding neighbors, apartment health hazards)
6. Rug replacement — following Houston flood, need to replace carpeting that got wet and is now mildewing.
7. Bugs — reminding about remedies to prevent roaches
8. Water — buying water in bulk — good but taking up way too much room
Max — family
My mother lives in Houston. She asks A LOT of questions, too many questions. My father is dead. I have three brothers: one is in Houston, one lives in Austin, and one is dead. If I need something or I have a question, I call my brother in Austin. My other brother doesn’t like to talk to me. When he does talk to me, he talks real loud and slow, like I can’t hear his regular voice. I talk to my brother in Austin almost every day. Sometimes he gets mad at me because I call him when he’s at work but he still talks to me. I know he can fix things and I can get money from him when I need it. He is smart. I think he will always take care of things. He makes me mad when he asks me about my money. He thinks I spend too much and he can tell because he looks at my bank statement in his computer. I send him receipts for what I spend but I don’t send him everything because it will just make him mad and he will cut me off, like Enron. Sometimes he asks me questions but not as many as my mother.
I know he thinks I spend too much money but he’s not my boss and I have a girlfriend who is really my wife but we can’t get married because we will lose our checks. We need our checks to pay our bills and buy the food. We used to work at the place that hires people with problems like ours but they don’t have any more money so only real bad off people can be there now. I worked there for 25 years. Now I’m retired.
Max’s brother — black hole of benefits
Texas is not the place to live if you have a mental disability. To be mentally ill with limited resources is just a slow-moving death warrant. I am buried in my brother’s issues. It is my responsibility to do battle with the MHMRA, but Max battles just to get through another day.
My latest appeal to secure additional benefits for my brother took over a year. In the middle of that effort, I was informed that Max was losing his Sheltered Workshop support. When Max first joined the workshop, there was constant work for him and he was able to learn and use skills to be productive and help the workshop make money. When my brother was prescribed with anti-psychotic medicine, the workshop staff ensured he took his medication. Eventually, this medicine successfully calmed Max so that he no longer needed this help. He was able to learn the routine to administer this medicine himself.
Max — music man
One time, I was a DJ at the gym. I played music and people danced all night: Elvis, Beatles, Sinatra, Aretha, Temptations, everything. All my friends came but the supervisors said I didn’t “qualify” to play the music. I don’t know why. I didn’t do anything wrong. I just played music and people liked it a lot. You can ask my friends. They called me Music Man.
Now we stay home and watch TV and go to the store. I like that better because a lot of times my legs hurt. Sometimes I go to the doctor. If I run out of money or I don’t have any more medicine, I call my brother. I had a brother who died and it was bad so I don’t like to think about it. It was bad when my dad died so I don’t think about that. I might die sometime. My girlfriend might die. I wish we could get a dog. My parents had a dog but he died. My mother never stops talking. Every week we eat lunch out. She pays or I pay. I can get the money from my brother in Austin.
Max’s brother — endgame
Over time, the workshop’s funding diminished. Eventually, the staff could no longer train clients for work and it’s now an adult daycare for persons with serious mental and physical disabilities. Max’s attendance at this workshop was invaluable to him. It was a place that provided him a reason to leave his apartment five days a week. He could be supervised, productive, and socialized. State disability cutbacks led management to end all funding. All qualified workshop clients must now find another place to be supervised, productive, and socialized. Max is too high functioning to qualify for a service that no longer exists.
MHMRA suggested clients could apply for alternative support. When they determined Max no longer qualified for support, I took him for eligibility reassessment. After more than 50 years of assessments, it was suddenly determined that Max now qualifies for disability support. The examiner concluded that Max has Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), an autistic condition that had onset before age 10. He now qualifies for a new program, and for one brief moment, it was like “Success at last!” The reality came swiftly. Due to low state funding, the waiting list for eligible new clients to join this program is 8 to 10 years. Of course, Texas always has another brick wall waiting for my brother to slam into; head first.
Max — the dream
I like all Beatles music. I close my eyes and I picture myself in a boat on a river with tangerine trees and marmalade skies — that’s the song. Marmalade is like jam but not as good as what we get at Kroger’s. I have to check my blood sugar. I don’t like going to the doctor or the dentist but my brother says I have to go. It’s a long drive and I have to take two buses. It’s hot and sometimes it hurts to walk. People stare at me and some of them laugh or push me out of the way. You have to be really careful.
I close my eyes and I can see the dream. I am in a beautiful house by the river with my girlfriend. She is my wife and we are happy. We have lots of money. I can buy her lots of presents. She likes pretty flowers and cute stuffed animals. We don’t need any more medicine or doctors. All the pain is gone. Everything is good in the dream. We can dance to Beatles songs all day. At night we look up at the sky and we see the diamonds and they are everywhere.
