Perspective

I was going to write today about how I weighed 146 lbs at the clinic this morning.  Then, I heard about a 14-year-old boy who ran away after he impregnated a 14-year-old girl who backed out of an abortion.  I read about the progress of a friend’s brother-in-law who’s treacherous path of cancer may be ending.

I decided to write about being thankful that the pain in my abdomen is likely a muscle strain and not something more serious. I’m grateful S is responding to and recovering quickly from treatment.  I’m happy that my mom is taking her meds and, while ever-present, she is able to look beyond the delusions. I feel blessed to celebrate the third engagement anniversary with someone I love even more than the day he asked.

I thankful for my health and happiness today – all 146 lbs of it.

Tofurky? Oh Boy…

Between viewing Forks Over Knives cooking a super greasy pot roast, and seeing nutritional information on a package of grass-fed beef (20g of fat per serving!!), I believe my days of red meat are over.  In fact, I believe I’ll be phasing out animal products in general.  However, I grew up in a meat-and-potato household.  In any given week of the five dinners I cook, 3-4 are meat based meals.  I eat tuna for lunch at least once a week. Oh, and I really love cheese. While incredibly worthwhile, this will not be an easy transition to a plant-based diet.

First, I really hate throwing food away so we’ll use up the blatant animal products we have at the house, including several cheeses, a flank steak, and tuna.

Then, I’ll work to build a stock of plant-based meals from which I can easily build a menu.

Last, I’ll continue shopping more consciously for whole and vegan foods.

Get Off the Fence Already

For more than a week, I’ve been perched upon a fence teetering between the easy out and jumping into the challenge. The nonsensical part is that I made up my mind to do something a long time ago and have been expending far too much energy waffling atop that fence.

Yesterday I called a donor with a question for work. She turned out to be a lobbyist. After hearing my idea she gently tipped me off of the fence, in the wonderful way only a Midwestern mother can.

Riding a fence is stupid anyway. I have no idea how to get Congress to make a change to a law, but I’m going to find out.

You don’t get to call my mom and the other 46.1 million Americans  ‘mental defectives.’  Watch out 18 U.S.C. § 922 : US Code – Section 922. I’m coming for you.

The Race is Long…

Way back when, I started my career in non-profit development as a bright-eyed 23-year-old.  It was the single most fulfilling job I’ve had to date. I worked long and hard and couldn’t wait for Mondays. Our event season ran from May to October and we spent 10-24 hours a day together during that time.  Needless to say, we were tight.

But making it on $21,191 a year is almost impossible and slowly one by one we moved on.  As many of us went corporate as moved onto to other non-profits.  While I averaged about 2.5 years per job, Jelly rooted into a non-profit, worked her way up to a vice president position. Just this past fall she took a position as an executive director.

She was born to lead and has all of the characteristics necessary to not only run an organization but to leave it better than she found it.

My first reaction was pride. I’m proud of her. But then I quickly turned it back on myself. Should I have been an ED by now? Am I as successful as I should be?

I’ve always liked being an individual contributor better.  I even thought dealing with an intern this past fall was the woooorst.  And the work an executive director does is mostly loathsome. There’s no way I want that job.

After spending too much time wondering if I was failing myself, I stopped to wonder why I was comparing myself to Jelly.  We were never on the same track in life, why on earth would I measure my success against her career path?

Baz Luhrmann said, “The race is long, but in the end, it’s only with yourself.”  True that.

Lol. Congress.

Mr. Buford noted in his response to my letter that the he learned the term ‘mental defectives from 18 U.S.C. § 922 : US Code – Section 922.  WTF is the term ‘mental defectives’ doing in US law? I emailed one of my college besties and go-to attorney to find out how to change the language.

Me: Hey – how do you change a word in a thing like this: 18 U.S.C. § 922 : US Code – Section 922? What is ‘this’ anyway?
Rasher: The citation below is to a statute (federal statutes – United States Code). Knowing what this is, I am now more curious why you are citing/referring to it??  I’m sure there is good reason.
Me: Well, if you’re Mr. Buford in California who has no concept of mental illness or the language to use when referencing it and you pull this statute as you reference point when talking to the media, you are perpetuating a stigma without even really intending to.
Rasher: Ah, so it’s in the statute.  So…..now what?  I feel some sort of crusade is about to be embarked upon….
Me: Who do I ask to change the language in the statute?
Rasher: Lol. Congress.

Lol. Congress. She just named my first book about my next ‘crusade.’

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

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

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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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.

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?”