Ben Behind His Voices Blog
One Family’s Journey from the Chaos of Schizophrenia to Hope
NEW!– the Ben Behind His Voices audiobook has been updated with a new intro, epilogue, and bonus material! – available only in audiobook form. (updated 2022)
Hear all of the original award-nominated memoir, and find out what has happened in the decade since. We continue our journey through crisis, help, and into hope.
Guest Blogger: CJ Hanson, Mental Health/Brain Illness Advocate
One day into June, and the official #MentalHealthAwarenessMonth is over - but the fight is far from over.
Please welcome guest blogger, C.J. Hanson, with these thoughts regarding her brother who has serious brain disease. CJ is one of the authors in Dede Ranahan's award-winning book,
"I have strong opinions regarding the many different causes for the continual denial of help and easier access to real treatment for my brother since the beginning of his trauma and brain illness of Schizophrenia and Anosognosia.
We initially thought the care he needed was going to be available to him given how severe his multiple disabilities including having lost his eyes in an accident and then brain illness.
We each have our own obstacles. But, like most families - access to that elusive help - was slammed shut on us because Mark is an adult who happens to have anosognosia related to the brain illness.
Waiting for him to figure out what is best for him.. what is safe for him... that he even has a serious mental/brain illness... will never happen.
No one can understand the respective roles that we are each left to play amidst the absolute expectation from society that we should just innately have all the answers, when we have a loved one with SMI/SBD - an expectation that we are fully capable to physically house and care for someone so floridly psychotic after he has fallen 34 years into the abyss and the tiniest of cracks of his mental illness. Our shattered and fragmented Mental Health Policy & Laws which includes abandoning the most vulnerable of those among us and their families is cruel.
Many of us are just family members struggling to be what we are not. - Medical professionals, Neuro Psychiatric professionals, Medical intervention, Legal and Financial advisor, Psychiatric Technician, Social Worker, Protector, Nurse, even Guard - day and night. Every day and night.
From what I have seen some of the top advocates for Mental Healthcare Reform are those who have paid the ultimate price already... either the loss of their loved one to suicide, abuse, injustice or just completely and forever lost in their illness.
Some family members, advocates and activists are still smack in the middle of their struggle to avoid those outcomes.
But, we are all advocates and activists - for Serious Mental/Brain Illnesses and the change towards quality of life, comfort, justice and fairness in #MentalHealthcareReform. Which means including the family members."
~ CJ Hanson
PS - I hope that my friends, group members, and followers will visit the new Facebook page which will follow the development of the movie documentary and give us a "like," follow it... and if you are moved - to contribute to the production and success of the documentary. Please share the link to the page on your timelines and to your friends too for the success of this important project. We will be successful with your help!
https://www.facebook.com/noonecaresaboutcrazypeople
#NationalShatteringSilenceCoalition
The Public Cry: #freebritney! Is There More to the Conservator Story?
Listen, I want Britney Spears to be happy too. She's incredibly talented, seems nice, obviously loves her children, and has worked her ass off pretty much all of her life. And, yeah, her dad seems like a controlling asshole. Also, it has to suck to have your adolescence questioned and paraded all over the media. She was not treated with respect, to say the least. The paparazzi and press were shameless in their interference - and, well, sheer gall. Anyone might crack under that kind of pressure and scrutiny.
(Imagine if all Your teenage love starts and fits has been plastered over the tabloids. I mean, Seriously.)
But, after watching Framing Britney Spears (and to channel Carrie Bradshaw), “I couldn’t help but wonder.....” even now, are we getting the whole picture of her conservatorship?
This is not a popular take right now. And I’m not saying that Brit shouldn’t be “set free”. Honestly, it’s none of my business.But, since I am a conservator myself, I’m just saying there might be more to the story. Have we fully seen in that documentary what a conservator can do to help? To avoid disaster? To protect the conservatee? We have not.
Even Brit herself, speaking out after the documentary aired, has said “everybody has their story.”
Here’s mine.
I applied for conservatorship in 2003 when my son Ben was about to sign papers to “set himself free” from the psychiatric unit in the hospital. He was psychotic, confused, a danger to himself - but would have been released anyway because he had “rights.”
But by applying for conservatorship and right to treatment, I bought him some time - time to stabilize and to plan for discharge.
I became Ben’s conservator (of estate and person) and fought for his “right” to be treated for a serious brain illness - and kept fighting. Because of that, he finally was stabilized enough (5 hospital stays later) to be placed in housing where he could begin to rebuild his life.
And, I had the right to information each time he was hospitalized again. Without those papers, I’d not even have been able to know where he was.
In the 18 years since that decision (one I have to renew every year), I’ve stayed as far as I can from making decisions for Ben. Not all conservators decide what a person eats for breakfast (like Britney's father in the documentary). However, I have been able to step in and help when necessary.
Some examples:
Ben thought he was “helping a co-worker” by co-signing a car lease agreement for her - without my knowledge. When she defaulted and he was hounded by debt collectors, I was able to get him out of the agreement.
Ben decided to sell a perfectly good used car we had gotten for him (he paid us back, bit by bit, and had been free and clear) and lease a brand new one....to the tune of almost $800 a month.He went over the mileage and “solved “ that by leasing a more expensive one. We have to declare bankruptcy to get him out of that debt.
He is a shopaholic. I know it makes him happy to feel normal...but did he really need a set of pool balls and cues when we don’t even have a pool table? I can’t really stop him, but I can keep enough money set aside (if he has any) to make sure bills are paid.
He has now been hospitalized 9 times. That’s a small number compared to others I’ve seen. But my conservatorship gives me the right to know medical information, from the smallest detail (yes, he is a patient there) to the larger issues of what a discharge plan is.
I can take charge of getting his disability payments back. This is absolutely essential right now, as he is back to square one and has no other income at all.
While he was in the hospital, I was able to keep up his credit card payments ((of course, he was maxed out and only paying minimums)
“But (I hear you saying in your head) why don’t you let him just make mistakes when he hits bottom won’t he learn his lesson? The answer is… No. With schizophrenia, even treated schizophrenia, learning from your mistakes is often not part of the picture. I wish it were.
I do not decide what he eats for breakfast, who he hangs out with, where he goes. I am a safety net, and he has fallen many times. Mostly I let him make his own decisions, but within reason.
Like today:
“Mom, did I get a stimulus check? Where is it?”
“Yes, and I put it aside to pay your rent until your social security is approved.”
“Oh, ok.”
(Because I know, from experience, that if that check is at his disposal he will not rest until it has all been spent on clothing he does not need. trust me , I know. I cleaned his room while he was in the hospital. He could also use it to buy pot. Nope. Not on my watch).
Conservators are not all dictators or assholes. Most of the time, we don’t even want the job. But someone has to do it, and if we can prevent total disaster we step up to the plate. Most of us strike that balance of letting go and stepping in. or at least we try.
So - i feel for Britney, I really do. But that documentary was very one-sided. I would just need to hear the other side of the story. Wouldn’tyou?
Amanda Bynes: Will She Become the Celebrity Face of Schizophrenia?
Amanda Bynes is in the news - again. But this time, much of the focus is on the possibility of a schizophrenia diagnosis. I mention this to Ben, and he says, "Hmmm. Interesting." This story will not, I suspect, make a dent in Ben's insight into his own illness - not now, at least. Patience is key when you love someone with schizophrenia - along with many other qualities.
But we follow the story, to see what the media does with it. I see Hollywood Gossip report she is on a "drug cocktail" and comment:
"I'm so glad to hear that Amanda is responding to medication (not "drugs"...these are medications to restore balance, not drugs to alter it). Yes, the big question is there: will she take the meds on her own? In my experience, probably not. Many medical reasons for that (see "anosognosia") but her parents should definitely go ahead with conservatorship. It has been a huge help for us! I blogged about this at healthyplace.com, website with great info and support."
My blogs on conservatorship have gotten the attention of Marketplace, a smart and fair show on NPR that is business-oriented, and they have invited me to be part of a show (coming up this week) on the topic of conservatorship, with Amanda in the news and all. This same issue came to light in when Britney Spears' parents sought to help their child after bizarre behaviors in public brought attention to her possible mental illness as well. At that time, I was booked to appear on Dr. Drew's HLN show, but got bumped by a Hurricane Irene story. This time, I hope I can be of some help on Marketplace, sharing the family view of how conservatorship can help.
I am Ben's conservator, but it doesn't mean I run his life, or control him. I am simply allowed to help him when he needs the help - and, yes, sometimes when he doesn't know he needs that help. (when schizophrenia symptoms take hold.) It's a safety net. And we need it.
Watch this blog for updates!