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Mr. Buford
Assistant Bureau Chief
California Department of Justice

Dear Mr. Buford,

On NPR last night, I listened to your interview with Audie Cornish about the National Instant Criminal Background Check System and its implications on gun control. I’m not writing to you about gun control, but rather to urge you to use better language when talking about people with mental illness. You used the term ‘mental defectives,’ and I believe it would be valuable to understand that by using that kind of language you are perpetuating the stigma people with mental illness face. That stigma not only hurts those dealing with mental illness, but it hurts everyone in our society, including you and me.

I have experienced that stigma since 1988, when my mom was diagnosed with Schizoaffective Disorder, Bipolar Type. This biological brain disorder interferes with the chemical balance in her brain causing her to see and hear things that aren’t real.  It also causes very high highs and very low lows.  You might find her cleaning the house for 48 hours straight one week and then crying in bed for five days the next.  Every day you’ll find her upset with and worrying about the people who are breaking into her house and stealing her stuff who were sent by the childhood friend’s grandmother who hypnotized her. And she can’t control any of it. She has no control over her mood or her thoughts. And as if mental illness wasn’t horrible enough, now she’s developed Anonsognosia, or lack of awareness of her mental illness, and her body has become immune to the medications.

I know it’s difficult to understand what that’s like.  So, for a minute, imagine how you would feel if you were told this letter is a figment of your imagination. In fact, your feelings about receiving this letter aren’t real either and you need to take medicine because no one believes you and tells you it’s all in your head.  Imagine experiencing this personal hell every day of your life and not being able to trust your own mind.

My mom was just discharged after a 46-day court-ordered hospitalization, her fifth in the past twelve months.  She wasn’t discharged because she’s stable, but rather because United Health Group insurance refused to pay beyond day 23.  In fact, she was discharged against the advice of the psychiatric team at the hospital to my 75-year old dad because my middle-class, retired parents cannot afford to continue accruing the $1,000 per day that it costs to get her the care she needs.  And because my parents are not considered ‘impoverished,’ my mom does not qualify for any of the county programs.  This means my mom is stuck in a broken mental health care system in which she cannot get the help she desperately needs because she is neither rich enough nor poor enough.

This broken system won’t change for my mom and the other 45.1 million Americans living with mental illness until first the stigma is dispelled.  That’s why I’m writing to you because it starts with each of us as individuals.  It starts with using the term ‘people with mental illness’ instead of ‘mental defectives.’

I appreciate that you probably see the worst in people every day and your job isn’t about mental health care. But I would guarantee that you encounter mental illness on a daily basis without really even knowing it – from criminals and co-workers to family and neighbors.

So, I implore you to change your language and to start thinking about mental illness as you would cancer. People with cancer can’t control it and they certainly don’t want it. But when we as a society start changing the way we think about mental illness, it will alleviate the stigma. Reduction in stigma will lead to better, more, and easier access to mental health services. A better mental health care system means that perhaps, we can get in front of the mental illness behind horrors like Aurora, Sandy Hook, Oklahoma City, Columbine, Fort Hood, etc.  Or intervene in the PTSD coming back from Afghanistan where the suicide rate has surpassed the number of soldiers killed in country.  And that benefits all of us.

But it all starts with you and me and the way we talk about people with mental illness.

Thank you for your time.

Sincerely,

xxxx

There’s a scene in the movie The Town, where Ben Affleck’s character says to Jeremy Renner’s, “I need your help. I can’t tell you what it is and you can never ask me about it later and we’re gonna hurt some people.” Jeremy Renner pauses then simply says, “Whose car we gonna take?”

Just today, I realized that my brothers and most of my friends are like that. Without any explanation, they will help me. The rest of them are the analytical types that can’t help but require more information. Overall though, I can’t think of one person who wouldn’t come to my aid with little or no question.

Of course I’m not talking about hurting people. In fact, in this case, it’s exactly the opposite.

I woke up at 4:30 a.m. today with one thought racing through my mind. I have to do something. United Health Group refuses to help my mom, the state won’t help my mom, and we can’t help my mom. I have to do something. My executive director suggested someone needs to sue the state over the lack of mental health beds. I have to do something. A friend has the email address of the mental health person at the paper. I have to do something. People are dying because of the stigma around mental illness. I have to do something.

This morning, I emailed a friend and said, “I don’t know what yet but I have to do something.”

He said, “Whose car?”

If my mom had brain cancer instead of mental illness, we wouldn’t be in this predicament. If my mom had Lupus instead of Schizoaffective Disorder, we wouldn’t be in this position. If my mom had a broken hip – oh wait, she did and she received the care she needed from the insurance company without any hassle.

I want United Health Group to spend one hour with my mom and then look me in the eye and tell me she’s not sick enough to be hospitalized. I want them to hear her talking about stabbing my dad because she’s so scared of her delusions. I want them to see the infected wound on her thigh because she’s lost the wherewithal to care for herself.  I want them to look her blood sugar tracking and understand she’s not able to manage her mental OR physical health.

My mom has been in the hospital for 38 days because the psychiatric staff do not think she is stable enough for discharge – and they don’t see releasing her any time soon. But UHC is done paying for her.

The mental health care system in the United States is so, so broken.

My mom has been moved from the psychiatric unit to the ICU.  A rapid heartbeat and high blood sugar spell big trouble for someone with diabetes and a family history of heart disease.  The nurse assures me that there is no need to rush to the hospital.  Regardless, ‘ICU’ is a scary acronym that has left me swallowing hard all day.

Awhile ago, VP and I had coincidentally both started writing eulogies for mom.  Okay, he actually started whereas I couldn’t get past the idea to do it.  I want to. I want to write about the hand that reached through the water and saved me from drowning. I want to write about how she never swore at us.  And about how it was the greatest thing to get my mom to laugh. I want to tell everyone how she’d say “you turkey” as she chuckled at our antics. I want her to make the yam balls she used to make at Thanksgiving that no one would eat.  I want to hear her laugh again – I mean really laugh – I haven’t heard that in years. Mostly I want to preserve all of the memories with my mom that don’t start with mental illness.

In the last four years, we’ve lost a lot of my mom to mental illness and a stroke.  I’m so ready for her to be out of misery.  As of late, I’ve often wondered if death is the only way out of the darkness of her mind.  Now that the reality of the ICU is involved, it’s clear that I’m not ready to lose the rest of my mom.

Commitment has a good connotation, right? One is committed to school or one is committed to her craft. Marriage is a commitment. Every time you make plans, you commit to them.

Commitment is good. Unless the commitment we’re talking about civil commitment. Then commitment becomes evil. Albeit a necessary evil.

Thursday, my sweet, sweet mom will be taken by police to the courthouse to stand before a judge as the county attorney makes a case for her civil commitment.

The big advantage will be that she will finally have access to more outpatient care. She will also be required to be hospitalized as prescribed by the psychiatric team rather than the insurance company. Once at home, a case manager will regularly come to the house to check on her medication and if she’s uncooperative, she goes straight to the hospital.

The big drawback is that my mom will be physically forced to take her meds if she refuses.  Is that trauma better or worse than the trauma she endures every day by the delusions?

I don’t know. But I do know that her 75-year-old husband cannot care for her anymore. I know that my brothers and I can’t care for her. And I know that her insurance company has been doing the same thing with her mental illness over and over again expecting different results every time (who’s the crazy one in this situation??)

I just want my mom to be as healthy and happy as she can be and if this type of commitment brings us closer to that goal, perhaps it will be good after all.

She won’t drink water.

Its unclear where mental illness stops and my mom begins.  There used to be a clear line. When she would open up all of the windows in the house to ‘air it out’ on a day the mercury barely reached 50 °, we knew the wheels had come off the wagon.  When she started obsessing about the Bible, we knew her meds were off.  When there were too many tears for no apparent reason, we knew it was time for the hospital.  But ever since the sly fox of paranoia bellied up to the table fifteen years ago, we found ourselves caught in a game we can’t possibly win.

We used to know when mom started and crazy stopped.  Now, there is a mucky grey area instead of a line.  Now we simply measure shallow end versus deep end of the crazy pool as she hasn’t stopped treading in years.

“The city water is bad,” she says and she won’t drink it in any form. Not from the tap, not from a filter, not from a bottle allegedly from the French Alps.  A tiny breath of relief escapes as she finds nothing wrong with milk at this time.

Perhaps the insurance company will finally see, after four hospitalizations this year, that her mental illness will not get any better (or any cheaper for them) without significant changes to her outpatient care.

Oh mental illness, I hate you.