Monthly Archives: January 2013

Jan 24 2013
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mental illness, reduce

Mr. Buford, A Solid Guy

Dear Ms. xxxx,

I writing this email to respond to your letter dated January 15, 2013, regarding my NPR radio interview.

Let me begin by saying I am very sorry for causing anyone, especially you to be offended.  I have been enlightened by your letter and understand how such terminology can be easily viewed as disrespectful, insensitive, and offensive.

I want to take a moment to explain how and why this happened.  As you may know, the subject of the interview was the federal background check system commonly referred to as the National Instant Criminal History Background Check System (NICS) and how states such as California use the system to prevent the sale of firearms to persons prohibited from owning/possessing them.  To prepare for the interview, I brought along some NICS training materials which include the terminology we agree is offensive.  Upon responding to one of the questions, I hastily referenced these materials in an effort to formulate a accurate and complete response, without regard to the language contained therein.

As you may know, this terminology is embedded in federal law specifically Title 18 United States Code (USC), Section 922(g)(4). While this is in no way an excuse, it does offer some explanation of how the term was included in the conversation.

That being said, let me be clear in saying that I am in complete agreement the term is insensitive and disrespectful towards patients, former patients, and loved ones affected by someone who has experienced mental illness.

Once you again, you have my sincere apology and promise I will not use this term again in any public forum!

Mr. Buford, Assistant Chief
California Department of Justice
Division of Law Enforcement
Bureau of Firearms

Jan 22 2013
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mental illness

A Letter to Mr. Buford

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

Jan 18 2013
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renew

So, What’s Going Right?

It’s become obvious that mental illness and cancer have overcome my life. I’m not sure I would want to be less invested in my mom and S, but I’ve realized I’ve focused so much on mental illness and cancer, I’ve lost sight of everything else. I feel like it’s all I talk about anymore.

So in an effort to reign myself in, here are 35 things that are going right (in multiple sittings because, while it’s great to focus on the positive, it takes awhile for the brain to warm up):

1.  CrossFit is an ass-kicking zen.
2.  This is a blissful, childless time in which I have my husband and my peaceful home to myself.
3.  I have friends of a caliber that exceeds awesome.
4.  I’m content in my job. It’s not long-term, but I have enough desire and challenge to keep me engaged.
5.  Composting and recycling have become a big part of our lives and I’m proud.
6.  Clean in ’14 has been good – and successful.
7.  I finally bought for myself a new computer.
8.  Everyday, I swear I love TB just a little bit more.
9.  My brothers and I are an anomaly.  What 29- and 31-year old men talk their sister daily and tell her they love her?  More than I think, I hope.
10. I bought myself a simple present. A car wash. And it made me so happy.
11. I’m doing more things I’ve always been too afraid to do. Like get a matching tattoo with my brothers.
12. My art room is set up.
13. I’m writing more. I started with this journal and it’s looking like Lol Congress is shaping up to be the book I’ve always wanted to write.
14. I’m learning again. I started with a computer class to learn about all of the cool things on my new computer.
15. I have a new ‘thing.’  While I never thought it would be mental health advocacy, the Virginia Ann xxxx Foundation for Mental Wellness has a nice ring to it.
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Jan 16 2013
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cancer

40 Weeks

On Tuesday at 8:15 a.m. S embarked on the next cancer treatment plan.  If all goes accordingly, she will be in treatment for 40 weeks after which she will receive injections for the rest of her life.

S will spend the next five days in the ICU as her heart and lungs are monitored while she receives 14 infusions of high dose Interleukin-2. After ten days of rest at home, she goes back the ICU for round two.  Then, six weeks later – during which time she will have two tumors removed from soft tissue and radiation on the cancer in her bone – she starts this process all over again for rounds three and four. If she’s lucky, she will only feel like she has the flu the entire time. If she’s unlucky…nah, there’s no need to throw that out into the universe.

Jan 14 2013
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mental illness

Whose Car We Gonna Take?

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?”

Jan 11 2013
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renew

Beasts

Beasts of the Southern WildAs someone generally skittish of any film labeled ‘independent,’ imagine my surprise at my love of the preview for Beasts of the Southern Wild.  The music is outstanding, the narrator and lead actress has found her niche at age nine, and the sparklers didn’t hurt either.

In full, this cinematic delight wrapped me in a cocoon of music and a little spitfire named Hushpuppy walked me through her life in the Bathtub.  She showed me a story so real and so genuine, I had a hard time believing I wasn’t beside Hushpuppy the entire time.

It was beautiful.

Photo credit: Beasts of the Southern Wild

Jan 09 2013
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mental illness, reduce

Safety in Numbers

My mom has been in the hospital for 39 days. Schizoaffective Disorder = 39. Mom = 0.

My sister-in-law asked if I would chat with her friend who’s mother, while undiagnosed, clearly has mental illness. Last night, we talked for 4.5 hours. It was mostly a ‘pay it forward’ evening to help a stranger feel less alone. Or as my brothers and I call it, ‘safety in numbers.’

I did walk away with a new perspective. I’m thankful to have learned about Schizoaffective Disorder. I’m thankful my mom is diagnosed. I’m thankful we had about 20 years with her post-diagnosis before the mental illness staged thishostile takeover that appears to be permanent. I’m thankful the mental illness never lashed out at me. My mom is seemingly a walk in the park compared to this person’s mom.

Her healthcare is where the bulk of her mental health challenges lie. Our mental healthcare system in the United States is broken. My mom’s insurance is refusing to pay for her hospitalization but under the civil commitment, the doctors will not release her until she’s stable. United Health Group, I implore you to spend an evening with my mom in psychosis. When she tells you that she wants to stab my dad or she weeps and asks you why she’s not dead yet, you may understand that mental illness is as dangerous as liver failure, brain cancer, or a stroke – and should be treated and funded as such. You may start to appreciate that mental health is as, if not more, important than physical health.

The stigma in our society further inhibits better healthcare and more services. Use of the words ‘crazy’ and ‘schizo’ perpetuate the shame and stagnation. My mom is not rich enough or poor enough to get the help she needs. Unless something drastic happens like my dad convinces her to divorce him so she can be ‘impoverished’ and ‘uninsured’ so she can get help she needs for a disease that she doesn’t think she has (I’d like to meet the salesperson who can close that deal) or they sell all of their earthly possessions, my mom will die before she gets an ounce of the outpatient care she needs. As she desperately needs help, it likely won’t be long before we lose our mother. The blood of this beautiful human being will be on your hands, United Health Group.

This year, I will work on removing the word ‘crazy’ from my every day vocabulary. Unless of course used within conversation with my brothers. It’s just too apropos to our situation.

Jan 08 2013
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cancer, renew

Deadlifts & Death

I can deadlift 120 lbs, back squat 125 lbs and overhead press 60 lbs.  I’m pretty excited about that, not because it’s a lot of weight, but because the misogynist trainer said, “You’re stronger than I thought.”  And when I made TB guess what I could max in each of those lifts, he guessed almost 50% short for the dead and the squat (he was five pounds too generous with the press.)

The stereotypically ‘cute blonde sorority girl’ often leads people to underestimate me. I don’t mind though. I’m a wolf in sheep’s clothing and that continues to play in my favor.

Yesterday also brought the PET scan results.

Is it harder to lose someone slowly or suddenly?

I’ve asked a few people that question. From their answers, I can only ascertain they both suck in different ways.

Dr. Cure It found another tumor in S’s other shoulder in addition to the one on her ribs. But worst of all, there is something lighting up on the scan in her knee.  As an avid runner, it could be (fingers crossed) as simple as the spot that lit up on her foot – a big, fat nothing.

Or it could be cancer. In her knee.  In her bones.

Since she’s been booted from the clinical trial now that it’s obvious the Ipilimumab isn’t stopping melanoma, the next course of treatment hinges on the result of her MRI on Thursday.

If it’s cancer, there’s a pill.  It’s a sixth month treatment and it’s only because she has some crazy mutation to the cancer.  But it also sounds like the last option before there’s nothing more we can do.

If it’s not cancer, she is strong enough to endure the barrage of treatments that will make her so sick she will be hospitalized during treatment.

Either way, the cancer is progressing and she’s about to get a whole lot sicker.

 

Jan 06 2013
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mental illness

I Wish My Mom Had Brain Cancer

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.