MY BRAIN IS ON FIRE by Lynne Warberg

Since my son's birth, I lovingly photographed him every day to create family memories.  Looking back, these images have become an extensive archive representing a mother and son's unique view of over 15 years of heartbreak, hope, sadness and terror and reveal how a family deals with their child's rapid cycling mood episodes. By sharing my story I hope parents who may be experiencing similar incidents, can detect the symptoms and get help, so that an early diagnosis can be achieved. 

"My Brain is on Fire" is a fifteen year personal project about my son, who was diagnosed with Pediatric Bipolar Disorder or Juvenile Onset Bipolar Disorder, a form of bipolar disorder that occurs in children. Although, he exhibited symptoms at a very young age, he was not properly diagnosed until the age of eleven. My son showed symptoms of extreme behavior and mood changes for many years prior to being diagnosed. As a parent I sought every possible cause; parenting, nutrition, seizures, vision problems? Consistently I was told by almost every mental health practitioner, "We know very little about the brain," and no one was willing or able to diagnose him sooner because childhood mental illness is a very controversial issue.

The controversy lies in the "official" diagnosis and how a child psychiatrist interprets the child's symptoms and behaviors. Even though, my son developed rages lasting over an hour within any given day, and at the young age of 5 told us that he wanted to die, he was diagnosed with ADHD, Oppositional Defiant Disorder and agitated depression. These are the disorders listed for children in the DSM and doctors prescribe adult psychiatric medication according to the diagnosis. My son's first psychiatric medication was an antidepressant. His mania worsened. Next amphetamines were prescribed. I refused. His brain was on fire. Six years was spent in this vicious circle of try another drug with severe side effects never tested on children to see if it works. When he was finally diagnosed with Pediatric Bipolar Disorder by a psychiatrist we trusted he followed a treatment plan; medication and therapy, and was mainstreamed back into classes with "normal" kids. His life opened up for him, school was easier, he made friends, we had hope.

My son lost his childhood to mental illness. Now Sam is 25 and two years ago was also diagnosed with schizophrenia. He lives at home with me. My heart aches for all of us dealing with severe brain disease and especially for those who have lost their child. 

To read more of Lynne's and Sam's story and to see her photos.
Go to http://visura.co/user/vitabrevisphoto/view/she-needs-to-beat-that-child

Photo Credit: Lynne Warberg

FIND ANY REASON by Deborah Fabos

Sometimes it can be difficult to remember that our loved ones suffer with a chronic illness. The symptoms can ebb and flow of their own accord often bringing irritability and what seems to be a harshness toward those who love them.

Living with a chronic illness myself, I can attest to the great difficulty of the most simple of tasks that normally pose no challenge at all.

The stress of the symptoms - economic hardships, isolation, and strained personal relationships -exacerbate the suffering for everyone. Staying mindful of our loved ones suffering along with attempting to maintain a healthy balance for all can be exhausting.

Try to be kind. Try to encourage. Find any reason to let them know that they are loved.

Help them find a reason to maintain the struggle.

HAPPY PIC

Photo Credit: Marisa Farnsworth

Hope you have a good weekend everybody!

HOPE IS CRITICAL - by Craig Willers

My name is Craig and I'm 53 years old. I was diagnosed with paranoid schizophrenia at 18 and later other illnesses. So, 35 years down the road, and miraculously, I'm still here.

My journey's unique and starts in my early years. I worked from the age of 17 and haven't stopped yet. I rarely call in sick for my mental illnesses except for my hospitalization at 23 (a month and a half). My hospitalization was a critical turning point in my life as I discovered (slowly) that I did feel a difference on my meds and counseling was breaking through my psychotic shell. I learned the voices aren't real and that the medications can bring my psychosis way down. I'm still sick but hope to go into remission someday.

I'm married and we'll celebrate our 25th year next August. My wife's been crucial in my support system and just happens to be a nurse (Hospice). I plan to retire from my grocery store job in early 2018 (32 years) and go into Peer Counseling if possible. I want to reach back and show others there is hope out there.

Meds and counseling definitely help but my spiritual path (Christianity) has also been a huge motivator in my life. I believe hope is critical as my life has lead me through some truly dark places and I'm still here. If you're reading this, there is hope! I don't believe I'm a special case, just unorthodox in my approach to living with mental illness.

Wishing you all the best and Aloha.

Photo Credit: Craig Willers
Craig as DJ at his most recent gig.

NO RESPITE by Gloria Hill

My son's been struggling with schizophrenia since he was a junior in high school and he will be 43 in November. We've suffered along with him and so has his older brother. In my experience, neither the public nor the professionals are aware of the family's suffering and struggling. It's unbelievably horrible for all of us, and there is no respite from it no matter where you go or what you do. It's always on your mind.

Most days, my son's aware he has delusions or at least checks in with me about what he perceives as delusions. The medication combination and dose are the best possible for him and he willingly takes them because he understands what might happen if he stopped them as he has experimented with stopping and checking them.

I credit a very good psychiatrist who practices in Sacramento, California with getting him on the correct meds. The best one for him, which has enabled him to go to college, is clozapine. It's probably the only miracle for many people who don't respond to other meds but it has no injectable form and works more effectively over a period of years not days or weeks. (Always check with your mental health care professional about appropriate medications.)

My son attends a mostly peer support group which I sometimes facilitate, and he has very good ideas for others in the group.

Finding a good residential treatment program is almost impossible and not affordable for many families. That's something families need assistance with when they have a disabled adult relative. No one mentions this and it's a primary reason many people with serious mental illness don't do well in the community because of lack of good supervision and support.

Photo Credit: Gloria Hill
Bret loves to fish.

HAPPY PIC

Photo Credit: Marisa Farnsworth

Scary House!
Hope you have a good weekend and safe Halloween everybody!

LOSING FARRON by Mary Barksdale

My son was diagnosed with paranoid schizophrenia at the age of 24. Over the next few years, he went on and off his meds and in and out of treatment. On January 2, 2004, he called 911 and asked for the FBI. The dispatcher told him she could not send the FBI but she would send police officers. He called back and requested that police should not come because he would not know the real ones from the fakes. When two officers pulled into my driveway, he killed them with an assault rifle through my front window.

My son spent the next 14 months in the drunk tank of a jail built in early 1960's in semi-solitary. When a new jail was built in 2005, he was placed in a cell block with other inmates. He had been on meds and the new jail gave him a safe place. He was taken on two day trips to our state hospital for examination by a psychiatrist. His family was also interviewed by this doctor and his diagnosis was paranoid schizophrenia. Same diagnosis as at least three other phychiatrists and multiple other mental health professionals.

He was sent back to this hospital for three months to determine if he was competent to stand trial. The original doctor from this hospital that was assigned to his case was taken off and a new one was assigned. He was sent back to jail with a diagnosis of Psychotic Not Otherwise Specified and was taken off his meds. Back in jail and off his meds, he went downhill. The DA offered him a plea bargain for life without possibility of parole (LWOP) and he accepted. 

Days after my son arrived at prison, I heard on the local news that he was in ICU because he had been beaten by guards. When I got to Montgomery to see him, he was comotose, on life support, footcuffed to the bed and was being watched by two prison guards. He'd been beaten, but that was not the reason he was on life support. Prison staff recognized his serious mental illness (SMI) and gave him psychotropic drugs with heat warnings. Then they put him in a cell with no air circulation when temps outside were 108 degrees. He died from neuroleptic malignant syndrome .

Neuroleptic malignant syndrome (NMS) is a life threatening neurological disorder caused by an adverse reaction to neuroleptic or antipsychotic drugs. When these drugs are given and the person is in heat conditions, the chances of NMS increase.

We won an open records law suit that forced the Department of Corrections (DOC) to release their records on my son's death and made Alabama government more accountable. We also won a wrongful death lawsuit against the DOC.

Photo Credit: Mary Barksdale
Will, Farron and Phillip Barksdale

FINDING SARAH by Joann Strunk

Thirteen days after walking away from her adult day care program, my daughter was found as she wandered out of the woods not far from where she went missing. She'd never been more than two miles from town the whole time. Someone saw her and recognized her as the missing woman. She was taken to the hospital in Fort Thomas...about an hour away. She was dehydrated to the point that her kidneys were shutting down. She will be here until Monday at least.

Sarah says she left after a disagreement with someone. She felt that the whole town was screaming at her to go away and die. She walked through some woods and crossed the river (which is very possible...it is way down). She became lost in woods on the other side. She became convinced that the world had ended and she was the only one left alive. So she gave up.

Can you imagine being so psychotic and hallucinating and lost in the woods? She could find some water but no food. When she finally decided to try to save herself she was almost too weak to walk. Thank God she decided to try. The search teams had been very close to her...she heard people calling her name but thought it wasn't real. We were so close and missed her....it will take a while to forgive myself for that.

The director of her group home told me he didn't believe her...that she couldn't have survived out there that long. He thinks she's lying to protect whoever she was with. But I'm inclined to think it's true. I've never seen anyone so dirty. Her neck was green...it looked like mold beginning to grow. She was wearing the clothes she went missing in and they are in tatters. Her hair was one dreadlock with sticks and burrs...and she was dehydrated to the point of death. She told me that she's learned how easy it can be to die. She said she'd abandoned her things at some point. So why did her messenger show activity on Monday? A mystery...

I'm going to go try to find her things soon...to get to the bottom of what happened. Right now I'm just being here with her. The rest will sort itself out. I am so sad...so infinitely sad....at what our sick loved ones have to bear. Sarah's life has been an unbelievable horror...and the torment in her mind is even worse. We, as a society, are failing them so badly.

Photo Credit: Joann Strunk
Sarah

HAPPY PIC

Photo Credit: Marisa Farnsworth

Pumpkins! Ponderous Pumpkins!
Hope you have a good weekend everybody!

BE YOUR BEST SELF MINUTE BY MINUTE by Heidi Franke

In court with my son, Mitchell. He was doing a good job with self-surrendering on a drug possession charge, but as most know, he had attempted suicide and now has a new diagnosis of schizoaffective bipolar type. His drug possession charge was from the time he was psychotic and feared there were several men in his apartment with guns. He used a bat and broke out his window and used a neighbor's phone to call 911. The police did a sweep of his apartment and found meth. My son was delusional and beginning to have increasing symptoms of a serious mental illness. The drugs exacerbated, if not quickened, his decline in executive functioning. Thus his pending charge.

I let my son stand on his own in court and it started going the wrong way and he had no public defender. We had been cued by the mental health attorney what to say. It was a state case. I had to slowly step to my sons side just as the judge was going to take my son into custody. I said, "No!" Calmly I explained the course of his co-occurring mental illness with drug use. A nice legal defender stepped up to help. I was in tears at that point, and my son was quiet just waiting to see what would happen to him.

I would have been the mother in court holding my son back from the bailiff taking him. My son is mentally ill and doesn’t belong in jail. If he went in without his meds, it would be horrible. You see, my father was mentally ill with bipolar disorder and was untreated until the last 6 months of his life. He was in his 80's. 

I was just 12 when we landed in LAX and the FBI took my father into custody as we de-boarded the plane. My father wasn't with us so I went back. The FBI was putting him in handcuffs and taking him away. I remember holding onto my father, crying and begging them not to take my father. A little girl tried to take control of something beyond what her mind could grasp. If I was only strong enough to hold on they wouldn't take my father away. I remember someone pulling me off of my father and then the world fell apart. So yesterday, that little girl saved her son who could not save himself.

I remember, in my tears, the judge saying he understands about mental illness but I don’t think he really did. There was a court clerk looking up data and feeding information to the judge that I can't recall. Then I heard a recommendation from a prosecuting attorney to drop the warrant. I told them over and over Mitchell was just released from the hospital and, though the drug charge is real, there was a much bigger picture.

They saw a parent with knowledge and accountability willing to take care of her son. We left together, a court date reset. We went to a very nice case manager with pretrial services who asked Mitchell to check in by phone everyday. It was close. Please do not give up, whatever your struggle is in life. Be your best self minute by minute. Stand up for those less fortunate. Be a voice. Believe.

Photo Credit Heidi Franke
Mitchell Franke

Follow up note from Heidi this morning:  Mitchell moves to sober living home today. I am proud of his work. The bigger tests will keep coming. He still wears a gps ankle bracelet for mental health court. His mind and attitude are healthy. It's just fighting the brains attempt at hijacking the vunerable that will keep me worried. I hope he engages in new pursuits. There will be people around him to help.