Tuesday, November 22, 2016

A safety pin story and plea for Mental Health Reform

This originally appeared in my other blog The Silver Ribbon Campaign and Briefly here on Myalgia Mommies. The bill passed through the house and will be considered by the Senate after Thanksgiving. I urge you to call your Senator, we can still get a positive change in 2016. 

I am wearing a safety pin as a sign that I will stand for tolerance and all safe spaces. That includes brain science....

It's funny how timing happens. Today H.B. 2646 The Helping Families In Mental Health Crisis Act is being marked up in the House of Representative Energy and Commerce Committee. It has been over a year since this bill was introduced. It will address many of the holes in the current mental health system. It comes at a time when many are going on record as demanding better access to mental health treatment. I hope the bill is passed as quickly as possible.

Over the years I have called and emailed the congressional offices many times. Below is the message I sent today. I am not passing out Silver Ribbons at the rally. I am asking that everyone please put a safety pin in their lapel instead. This is a symbol that we believe in brain science and are making sure it is funded. Thank you.

Thank you for taking the time for fully considering the substance of H.B. 2646 today. This fall it will be eighteen years since I lost my mother, Margaret Ray, to suicide. I have tried to make things better. Recent statistics would indicate that my efforts have not been successful. All I did was pass out Silver Ribbons. I think I already gave you one. If you don’t have one and want to show support for Mental Health reform please just put a silver safety pin in your lapel as a sign that you believe we can cure brain diseases.  It is an excellent bill.

When I was in school the Surgeon General released a report on Mental Illness and stated that it was the greatest Public Health threat facing the country. I had the opportunity to see the science of brain imagery and the cutting edge of research first hand when I went on a book promotion tour in 2000. Over the past sixteen years I have endeavored to keep up with the reading and have changed and evolved some of my understanding of what a brain disease looks like. We've come to understand profound things about ourselves and our brains. We have tried some programs that worked and sadly are seeing the glaring mistakes that were made. We need more beds and a general increase in funding. H.B. 2646 addresses many of these issues and takes steps to move forward with best practices.

During that long ago tour, I passed out silver ribbons as part of a larger national effort. (I also inherited the foundation for my poor mother who took her life when I was a law student. When she took her life she left a hole in mine and because she involved the media, she put a huge red flag on my internet background check. Whether or not you believe in stigma against the mentally ill, I believe that it has had a strong impact on my career options.) At the time several of the national mental health advocacy organizations were supporting the silver ribbon for the brain campaign. Mental health is just not something people want to talk about. I don't think anyone wants to wear a silver ribbon.

Almost everyone is touched by a story of mental illness. If they haven't experienced it yet, they are either very young or incredibly self absorbed. Helping someone with any kind of bought of illness can be exhausting, it is harder when the illness must remain a secret. Over the past few decades, getting mental health treatment in the US has been a struggle for many resulting in long sad stories. I have found that if you wear a silver ribbon and put yourself out there as a mental health advocate, people are going to tell you horribly sad stories that you can't do anything to help.

So, thank you for doing the hard work of listening to all the families who have called in and told their stories to you during this lobbying effort. I wish I was there with a basket of silver ribbons. If you wish to show your support, please put a silver safety pin on your lapel to show that we take care of invisible diseases too and everyone will try to be grateful.


Anna-Lisa Johanson, JD-MPH
Please join me in wearing a safety pin as a sign that you believe that science will overcome mental illness. In these sad days, it's a way of saying that we are doing the best we can. 

Saturday, March 12, 2016

My Cheeseburger

We all must be careful with the words we use. Words have power. Don't get me started on politics…It is also this permanence that kept me from writing.

Of all the aspects of my narrative to focus on, the fact that I’m doing it while I have a headache or am in pain is not what I want to highlight. It’s like the card that says “Ginger Rogers did it backwards and in heels…” I stopped writing this blog because I didn't want my definition of myself to include any diagnosis or conversation about my health. It is what it is.

I haven't updated the blog in two years because I have been quite undone…by a son.

He is amazing and the third child was the one that pushed us over the edge into constant chaos. We call him Cheeseburger. It was the only thing I craved while pregnant.…I was a vegetarian for years so there was particular irony when I heard the siren song of a burger.

As a third child he exceeded our population growth limit and I’ve been mindful and tried to use cloth diapers and as few resources as possible. So, I’ve legitimately been busy.

I told my neurologist that if you took the World Health Organization Disability Test and replaced the word “Disability” with “Children,” you get a pretty high score. At least I do. I’ve been overwhelmed by my children and recognize that I am blessed that the little monsters are healthy and bright enough to do so.

This blog continues to get readers despite my inactivity in part because I said that Myalgia Mommies are very different from Chronic Babes. (One of my favorite communities and is AMAZING!) To me Chronic Babe is a great resource for reminding you will get through this and be adorable.  This blog was meant as a place to go when you felt like "on top of all this pain I have to parent!" the goal is to be an entertaining distraction and as a reminder that you are not alone. My third pregnancy made me face exactly what it meant to be a mother knowing my limitations. I suffer from chronic daily headaches, fibromyalgia and anxiety. Children are triggers for all of these conditions. A child is a selfish, expensive decision (or blessing!) that alters the course of your life. They are also the source of pure magic.

I really wanted that cheeseburger.

I also feel like I need to stop mentioning that I have these chronic debilitating conditions because I am clearly still getting things done. Last weekend I went to a Mothers of Multiples tag sale. Those amazing women had multiple babies of the same age and were part of a volunteer club, they were all up, there and going through the motions.

There was a video that circulated the internet of the different kinds of moms on the playground: baby wearing mom, breast feeding mom, working moms, etc, I think if the Myalgia Mommies all had a secret nod we would be in a corner in sunglasses having quiet time. We could take turns watching the children like a pride of large cats.

That would be really cool.

I’ll look for you at the park.

Otherwise, it’s been a rough few months. I knew I was predisposed to a perinatal mood disorder or post-partum depression. It’s like a slow flood. You expect it, it comes, you deal with it, then you clean up after. I’ll blog about that separately. Also, I have three children.

I wish that every woman who suffers from postpartum depression can get the help and support that I did. In my case, I knew I was headed to a dark place: I learned of my pregnancy the same week that we put my father in hospice. He did not live to meet my son. Anyway…I keep promising myself that I am going to start writing again and this is a good first step.


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