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Blessed be the wildebeests.

Hope you have a good weekend everybody!

I'M SURE THEY MEAN WELL, BUT...by Tania Irie

I’m sure they mean well when they tell me to “be grateful” but.…

Do people ever stop to think that maybe my being unhappy with my current situation is exactly what is motivating me to do better and be better so I can have better? I won’t settle. My feelings are valid, regardless, and I don’t need anyone to tell me any different.

You be grateful for whatever you want. I’ll be grateful when things start getting better for me. Right now, I’m very uncomfortable with my life and circumstances and still I’m learning many things through the struggle. I’ve been homeless for eight months. In the beginning, I felt somewhat hopeful and thought to myself, don’t worry, things will get better and I will figure it all out. It will be all right. But now, I’m not so sure. I was naive then. 

Right now, I’m busy trying to lift myself up out of this mess by changing the things I cannot accept rather than “accepting the things I can’t change." Follow your own path and I will follow mine. To each their own...

Tania

RYAN'S STORY - PART THREE by Donna Erickson

THE STIGMA OF MENTAL ILLNESS CONTINUES

Ryan was getting more delusional, and we had the crisis team come in to evaluate him. Jeff met them at the group home, and told them that Ryan needed to be hospitalized. But this time was a little bit different. Ryan never went off his medications, and what he had in his system was doing some good. We noticed Ryan came in and out of psychosis repeatedly, instead of remaining psychotic. One minute he was talking about his six wives and six children, but later on, he knew that was not true. Yet, the delusions kept coming (and going), and we still felt he was unsafe in the community. During this period, Ryan had signed up for classes at the local university, and was issued an ID with a different name. Nothing ever came out of that.

The crisis team concluded that Ryan wasn't bad enough to be hospitalized. We disagreed. We felt Ryan was tricking them. According to the crisis team, Ryan needed to do something in danger to himself or others, before he could be hospitalized. I believe that the individuals who make these laws are clueless. If they were to experience the unbearable stress this puts on the families — not to mention, the absurdity of inviting danger — the laws would change. Right now, the patients have the laws on their side. But the laws are not always in the patients' best interest, and that leads me to believe that, unless you've gone through it, you can't understand how bad it can get. The bottom line is, we just want to keep our loved ones safe, but the system doesn't let us. We are at its mercy.

We had been through this so many times by then, that we knew it didn't get better on its own. I tried calling Ryan's psychiatrist, but kept getting voice mail. I left a long, detailed message. I explained that the crisis team was not seeing what Jeff and I were seeing. Ryan was able to answer all of their questions, but soon after the crisis team left, Ryan was insisting his real name wasn't Ryan and his birthday was in July, not August. Finally, I totally lost it on the phone. I broke down and cried, begged, and pleaded for his doctor to section him. I asked, "Why do we have to wait for something horrible to happen? Please help us help our son now." I got no response.

So... something horrible happened. I got a call from the group home manager explaining that Ryan had removed and disposed of a bunch of smoke detectors from the group home, and the building owner was pressing criminal charges against Ryan. I was furious. This all could have been avoided, if someone had just listened to us. The worst part of this experience was witnessing how the system set Ryan up to fail — and then blamed him.

Ryan was able to remove the smoke detectors from common areas in the building (he did not remove any from client bedrooms), over a period of several days, and dispose of them in the dumpster. The fact that nobody saw this happening, doesn't say much for the staff. A lot of the time, they are on their cell phones or watching TV.

Finally, Ryan was hospitalized. I got several calls from the administrators of the group home, informing me that Ryan would not be allowed to return. He would have to go to Respite - a step-down program sometimes used for DMH clients when they’re released from hospitals. When I asked who had made that decision, I was told there was a team involved — a team of DMH and BAMSI (group home vendor) administrators. They even threatened to evict him.

While hospitalized, Ryan got in touch with the Disability Law Center and the Committee For Public Counsel Services. He was advised not to go to Respite. I did some research and discovered that Ryan has a lot of laws protecting him. The group home cannot just tell him to leave. That's his home. It would necessitate a court hearing. When I spoke to a contact at DMH, I was told there would be a meeting for us to attend with Ryan. I made it very clear that I didn’t want Ryan moved from his group home, mainly because most of the other homes are in very unsafe areas. I never heard back from DMH, and there never was any meeting.

Ryan appeared at a hearing with a court magistrate about the criminal charges. Ryan apologized to the court officials and the fire chief. He explained that his illness affects his reasoning, judgment, and sense of reality during a psychotic episode. He described how these behaviors are uncharacteristic for him when he is stable. The court decided that the charges would automatically dismiss with no police record in six months, if Ryan stayed on his treatment and stayed out of trouble. We all breathed a sigh of relief six months later.

During every psychotic episode, abusive incident, lack of response from clinicians, or difficult period trying to access appropriate services for my son, my heart breaks a little bit more. The people who are supposed to be helping my son have sometimes made things worse. One of the BAMSI administrators told my husband, that we’re not doing Ryan any favors by educating him on the system. I really didn't appreciate that remark. Jeff explained that we aren’t the ones educating Ryan. Ryan is very smart and educates himself. Ryan has gotten workers suspended and terminated because he knows his rights, and because those people deserved it. For that reason, he’s seen as a threat by some administrators.

We need to remember that people with severe mental illness have been dealt a very tough deal in life. Through no fault of their own, they have a disease that prevents their brains from working properly. They should be treated no differently than a diabetic needing insulin or a cancer patient needing chemotherapy. But, the stigma of mental illness continues, due to ignorance. I hope and pray better days are ahead for my son and others who require mental health services. It's certainly not their fault, and we need to help the public understand that.

Tewksbury State Hospital, Tewksbury, Massachusetts - Ryan's home for more than a year

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Perspective through rock and time...

Hope you have a good weekend everybody!

A MOTHER'S DAY LETTER FROM TRAVIS (IN SOLITARY) by Travis Christian

Dede,

I got a laugh out of your story of Pat. I like that you can talk about him. I lost my dad in 2008 to pancreatic cancer. There's so much I wish I can say and do with him. I have dreams of him often and I get to talk and do things with him there. I'm happy he isn't suffering. Pat isn't suffering anymore either.

Thank you for not giving up and being a warrior for people like Pat. You are so courageous. You are an excellent writer. I can tell by the letters you write.

The story of your mom made my day! I haven't been exercising as much and I keep making excuses, so I've been feeling kind of anxious, but after reading that story of your mom, I can't just sit and do nothing. I hope you mom's leg heals up quickly. She is amazing. I don't know anyone who is 100.

It sounds like you are very intelligent and creative because you said that you and your brother put together a video collage for your mother. Did you go to college to learn how to write? Because I would like to write a book about my life, but right now it's just a crazy dream.

I am in Sacramento. I have my guitar in my cell. Who is "Cider House Rules?" I've never heard of them. Your mom is such a trouper. Her birthday sounds like it was a memorable time.

Who knows, Dede, you may have saved my life and all the people who sent me mail. I'm not out of the woods yet. I still struggle everyday. It's just not as intense. I thought I wasn't going to make it. I want to help you with your blog. Maybe I can be a success story about an inmate with mental illness who thrives. However I can help you that's how I want to help you.

Well, I hope you're having a good day and that some excitement comes your way. Happy Mother's day. I wish you the best.

Love, Travis

If you would like to write to Travis, his new address is:
Travis Christian BB8099 b-1 109L
California State Prison, Sacramento
PO Box 290066
Represa, CA 95671

You can send books to Travis from Amazon and Barnes and Noble.

See more stories about Travis on this blog:
Feb 3, 2018; Feb 6, 2018; Feb 10, 2018; Feb 27, 2018; March 14, 2018; April 18, 2018

#SteppingUp4SMI  #TreatmentInsteadOfJail

Travis and his mom, Kathy, on Mother's Day 2018

Kathy says, "I'm very grateful on this Mother's Day because I got to see and hug my son, Travis, for the first time in three  years. Thank you for all who write and pray for my son."

RYAN'S STORY - PART TWO by Donna Erickson

WHAT I'VE LEARNED ABOUT OUR BROKEN MENTAL HEALTH SYSTEM

During the eight-year period of Ryan's many hospitalizations (14, if I'm correct), I got to see first-hand how broken our mental health system is.

After Ryan experienced his first psychotic break at nine years old, nothing prepared me for what was ahead. We had seen his deep depression, knew he had intrusive thoughts, and lived with his behavioral issues. But I wasn't aware of the extent of what his medication was doing. We had never seen a manic episode until he decided to go off his medication at 25. What followed were eight years of pure hell for us.

We soon learned that the only way to get Ryan help was to call the police. An ambulance would arrive with a police car, and the police would begin questioning Ryan. Over time, Ryan got very good at tricking people into thinking he was okay, when he was actually very sick. Most times, Ryan would go into the ambulance, which transported him to the nearest ER. But once, he took off running down the street, until the police caught up with him. Since we were calling the police on a regular basis, they became familiar with Ryan. They knew he had a severe mental illness. Yet, we were told, "You had better do something about this,” — as if we could control Ryan's mental state.

I enrolled in a NAMI Family-to-Family twelve-week, intensive course, to learn all I could about mental illness. When I asked Ryan's DMH caseworker about group homes, she told me, "There are no group homes." That statement was very misleading. Granted, there was no list for getting into a group home. But there were indeed group homes. They were available to those coming out of long-term stays in a state hospital.

Ryan's hospitalizations had begun in private hospitals. There were many. I soon learned that abuse is rampant in psychiatric facilities. Once stabilized, Ryan told me his stories regarding the details, and some things I saw for myself. I have since learned that all of these incidents should have been reported to the proper authorities. But we were new at this, and didn't know that at the time. The following list is what we have encountered:

1) At Faulkner Hospital in Boston, MA, Ryan was placed on one-on-one watch while psychotic. The security guard watching him refused to let Ryan use the restroom. Instead, he made Ryan urinate on the floor and clean it up afterwards.

2) Psychotic patients are known to have outbursts. I'm sure it’s a difficult job to work in a psych ward, but these nurses are paid well, and get to go home at the end of their shift. They, obviously, have the better deal. However, their behaviors are sometimes worse than the patients. Instead of trying to de-escalate one particular adverse situation, a nurse at Norwood Hospital said, "Ya know, Ryan, at the end of the day, I get to go home to a family who loves me. But you have nothing, and you'll never have anything in life."

3) Another time at Norwood Hospital, when Ryan was coming out of mania, he was looking very disheveled. He needed a shave and a haircut, and he hadn’t showered yet. A male nurse said to Ryan, "Oh, well, don't you look like the next serial killer." Ryan was very hurt by the nurse's comment and called me on the phone. I immediately called to speak to the nurse. I told him his comments were hurtful and inappropriate. I said, "Maybe next time, you'll think, and show some compassion." The nurse replied, "You're right. I tried to apologize to him, but he walked off." I explained that I didn't blame Ryan for walking away. I said he did that because he was so upset. I also pointed out how fortunate the nurse was that he was healthy and able to work. I let him know that my son isn’t able to work because his illness is so debilitating. Ryan didn't ask for this illness, but sometimes he’s made to feel as if he did — as if it's his fault.

4) The whole situation with the ER serving as a holding place is a horror show. Ryan has spent up to six days alone in a tiny room, with only a gurney, waiting for a hospital bed. I’ve heard that sometimes insurance companies will refuse patients, if they’ll get paid less by MassHealth (Medicaid). In the psychiatric ER, there are no TVs, yet right down the hall, for ER patients who are not psych patients, there are TVs in every room.

Ryan always gets worse in the ER. It’s no place for a psych patient. It's chaotic, with absolutely nothing to do there. A psychotic patient needs a calm, nurturing environment. I can't imagine living like that for even one day, never mind six. Then, if he acts up, they punish him. There’s not much to take away, but I remember they took away his Bible. They also forgot to give him his medication, and I always feel that I have to hover over the staff.

5) Last summer, Ryan's doctor tweaked his medication, because Ryan was still feeling very sedated. Unfortunately, he became manic. His doctor said this was highly unusual. His doctor hoped by adding in more medication, he could stop the episode. But Ryan's illness progressed. Jeff and I were seeing the red flags. Ryan called Jeff at 2 a.m. saying he was lost in Bridgewater. My poor husband had to drive over to the police station, so they could figure out what street Ryan was on and bring him back to the group home. Then Jeff drove back home and had to be at work at 5 a.m. Not fun. But typical of what we parents go through.

TO BE CONTINUED: PART THREE
THE STIGMA OF MENTAL ILLNESS CONTINUES

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On the road again. Can't wait to get on the road again...

Hope you have a good weekend everybody!

UPDATE ON RICHARD QUINTERO by Nicole Finn

For the first time in the 48 days since Richie's arrest, we are excited to finally share a positive update!

Alice, Richie's mom,  received news today that he is being moved out of the maximum security prison in Raleigh to Central Regional Hospital in Butner, one of the three state psychiatric hospitals in North Carolina. While we've not heard anything from DSS or his public defender, the source is quite reliable so we are cautiously optimistic that the move will come to fruition ASAP and before any additional harm comes to Rich while incarcerated. 

We believe this move may have been sparked by him finally having a forensic evaluation (nearly 7 weeks after self admitting he suffers from schizophrenia and 6 weeks after the public defender was given detailed documentation of his history with severe mental illness), as well as the large amount of public awareness surrounding his 'story' brought forth by help from all of you.

While the war for justice and demand for adequate, ongoing and accessible treatment for individuals with serious mental illness (SMI) is far from over, this particular battle — the battle to get a non-violent mentally ill man out of prison — is a victory worth celebrating. So tonight we take a much needed (albeit brief) breather, cry happy tears for the first time in too long, and sleep on a bed of optimism. Then, tomorrow, we wake well rested and ready to face the next battle in the fight for his wellbeing.

Many thanks,

Alice Gates Yorks
Brooke Bowlby
Nicole Finn

Click here for Help for Richard Quintero on Facebook.

Rich Quintero

RYAN'S STORY - PART ONE by Donna Erickson

BACKGROUND 

I am a 62 year-old wife and mother of one son, Ryan, who is 33. I wanted a child so badly, so I endured years of painful fertility tests and treatments. In the fall of 1983, my wish came true. I was finally pregnant and looking forward to motherhood. My husband, Jeff, and I had no idea what was ahead of us.

From day one, Ryan stood out as "not your average baby." He was born so wide awake and looking all around the room. He definitely was not a sleepy baby. All I kept hearing was, "He's so alert.”

On the second day in the hospital, one of the nurses rushed in and asked me to bring him into the room with me. I'll never forget the look on her face as she exclaimed, "Wow, what a temper on him!" He was keeping the other babies in the nursery awake — when all they wanted to do was sleep. I look back now and see that as the first sign that something was not right.

Ryan had trouble socializing when he was in nursery school, and I was advised to put him in home day care and have the school system evaluate him. The day care arrangement worked out well, and it seemed to be a better fit. The school psychologist assured me he didn't see any signs of a mental disorder, such as schizophrenia, and remarked that Ryan had some endearing qualities. Ryan later attended a different nursery school and started making friends. I thought my troubles were behind me.

In kindergarten, Ryan began acting like a dog and growled at the teacher. They didn't know what to make of him, and the school psychologist was called in to monitor him. He was promoted to a transitional first-grade classroom.

Ryan's school years were uneventful until fourth grade. He’d been seeing a child therapist for depression. But his anxieties became a concern when he thought his hands and feet were falling off and all his teeth had holes in them. He was admitted to a psychiatric facility where they diagnosed him with psychotic depression. Later that week, we met with the psychiatrist who broke the news to my husband and me. Ryan had bipolar disorder. I broke down. My mother was bipolar, and I knew how hard her life was. My intuition told me Ryan's life would never be easy. I was right.

Ryan was able to hold it together for the school day. But when he came home, he was tough to live with. Somewhere, the label oppositional defiant disorder was added in. I attended a parents support group, and Ryan's psychiatrist taught Jeff how to physically restrain Ryan. He continued seeing psychiatrists and was put on medication for bipolar disorder at age 11. It helped. He stopped throwing things when he didn't get his way or was told "no." But he was still an extremely stubborn and difficult child.

By high school, Ryan began to mellow out somewhat. He had a routine, excelled in art and playing the trombone, and enjoyed writing scripts and making films with his friends. But, after high school, Ryan's group of friends moved on with their lives. Ryan felt stuck. He tried working a part-time restaurant job. After a while, he was let go when the store needed someone who could work longer hours. He decided to attend a two-year college program for filmmaking and video editing, which he was very good at, but after one year, the pressure and long commute were too much. 

Next came trying his hand at his own video business. He got some jobs for weddings and other social events, and made good use of his skills. His illness was under control, but he was very unhappy emotionally. He had read negative things about psych drugs on the Internet and had already experienced some nasty side effects. At age 25, Ryan decided to try going off of his medication. I wanted to support him, especially when Jeff said to me "He deserves a chance," but I feared what would happen.

First, Ryan felt this incredible energy. He helped me clean closets and set up his living quarters in the basement. This was the first sign of hypomania. Soon his illness progressed to full-blown mania with psychosis. He started having delusions and talking in rhymes. His thinking was disorganized and not making sense. This began an eight-year period of revolving-door psychiatric hospitalizations. In the hospital, they would stabilize him, and then he would come home and stop the medication. He was constantly in and out of the hospital, convinced he didn't need medication. 

The chaos was taking its toll on us. So we found a rooming house in another town where Ryan moved in. He was trying a holistic program called True Hope from Canada, which was high doses of all-natural vitamins and minerals. People on the program were claiming they were able to come off of their psych medication. It worked for a while, but Ryan eventually de-compensated and ended up back in the hospital. And he was told not to return to the rooming house.

I had been attending NAMI support group meetings and learned that Massachusetts (MA) clients of the Department of Mental Health (DMH) could be placed in a group home if they had a long-term stay in a state hospital. Ryan was already a DMH client. He understood that this was the best option for getting him housing, since any housing for mental illness was extremely hard to come by. In fact, there was a housing crisis for mentally ill individuals, and it continues today.

So we refused to take him back home and requested a transfer to a state hospital. I learned that there was a long, statewide waiting list. That's when I got my state representative involved. He did something magical, because suddenly, Ryan's name was at the top of the list. After a year-long stay at Tewksbury State Hospital, Ryan was released to a group home in Bridgewater, MA. That was three years ago.

TO BE CONTINUED: PART TWO
WHAT I'VE LEARNED ABOUT OUR BROKEN MENTAL HEALTH SYSTEM

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Rose love.

Hope you have a good weekend everybody!