I've learned something about advocacy. It's something I learned at my very first advocate event. It's not about me. It's about my story and how I can personalize my story within the framework of how it impacts the community for whom I advocate.
As a breast cancer patient, I have always been able to detach my own emotions. I can speak on behalf of the needs of our community with ease and if my brain doesn't get in the way, I can generally make the points I feel must be shared. I can discuss matters that are necessary to help all of us. I listen to others, I monitor what is being shared on twitter and in the blogs. Despite my mom's mets diagnosis and the fact that I've watched so many die, despite the fact that I know some of you are burning through the paltry number of available treatment options, I've been able to keep my emotions in check.
I've expanded my efforts to advocate on behalf of those living with serious mental illness. Not just the bouts of depression that have come and gone over the course of the past several years in my own life, primarily triggered by external circumstances and in no way am I minimizing how terribly debilitating that can be, but I speak of those living with things that are at the top of the mental illness scale. These are people who may look like there is nothing wrong with them, but they are people who struggle in ways I can't begin to understand. I try. I empathize but I can't truly understand.
I can relate to the frustration of a misfiring brain because of the damage I suffered from the chemotherapy that hopefully will keep my cancer from recurring. While frustrating and at times, debilitating, it's still not mental illness. At times, it feels like it must be close. When I listen to others who have been diagnosed with brain illness talk about their disorganized thoughts getting in the way, I understand. Yet, I can point to the poisons infused throughout my body. I know why and I know how this happened to me.
Those who suffer from forms of psychosis don't get the luxury of understanding. Science hasn't come to the point of understanding why so called normally functioning people just break from reality: why diseases like bipolar disorder or schizophrenia suddenly blindside them, derailing their lives, their dreams and they find themselves trying to make sense of the senseless, trying to define a new path for themselves.
This is now highly personal. After months of intense care, I'm trying to help transition a young person from the bubble of safety that comes from such a high level of care to a more independent life. The next logical step is appropriate housing and outpatient care involving medication management with a good psychiatrist, a therapist who can keep a close watch to make sure there isn't a backward slide which might lead to another psychotic break, peer support through group therapy and a reintegration into life. Like cancer, ideally these professionals should be in constant communication.
Appropriate housing was arranged. Fortunately, there is an apartment that will not be a financial burden to anyone. Care, on the other hand, is another story. I have spent the past three weeks working with several people including a social worker, an insurance company advocate, people running different programs in the NYC area that would be appropriate for someone who is capable of moving forward and after three solid weeks, not one thing is in place aside from the housing.
On Monday evening, the frustration finally reduced me to a heap of tears. Eleven hours of phone calls, and not one acceptable solution. Indeed, not even one UNacceptable solution. Basically, NO solution. By 6:30PM, I could take no more. I sat down and began to sob. How is it possible that someone who needs support to jumpstart their life has no options for care?
I find this beyond disgraceful. I know how to navigate this stuff and every door was slammed in my face. Programs have fallen victim to budget cuts. More mental health dollars are being spent on ME and the likes of me, rather than those who are in true need of care. This is something that must change. I will be in Albany next Tuesday with NAMI, making noise at the state level. But really, I want the noise to be a national conversation. I'm going to find a way to get myself to the National Council for Behavioral Health Conference in Washington DC which is taking place in May.
I'm still learning and there is much I don't understand because I haven't had the opportunity to listen to the patient population or their families. I'm looking through a small prism at the moment and until I can get all of my facts straight, I want to proceed cautiously. I fear that my advocacy will not be properly effective. I'm unsure I will be able to share the frustration I've experienced over the past several weeks without having my emotions bubble over. I know from my brief meeting with Tom Insel (yes, I'm name dropping), the director of the National Institute of Mental Health, that some mental illness advocates struggle with evidence based medicine and with the science. While I don't have those struggles, I'm not so sure about those emotions.
I do know I'm not prepared to write this population off which is what seems to have been happening, slowly but surely. And so, I will give it my best shot. I will try.
Those who have, can draw from an endless well of funds to buy the best care for their loved ones. The rest, THE MAJORITY, are left to scramble for crumbs and the crumbs are barely edible.
I'm not okay with this. I'm not okay with jails being used as holding cells for mentally ill persons. I'm not okay with homelessness. I'm not okay with HIPAA handcuffing families. There is a fine line between the rights of an individual and the need for family involvement. It's a line that needs to be well-defined and it's a line that I hope to help draw.
Care to help in a small way? Consider reaching out to your national representative and ask them to support HR3717: The Helping Families in Mental Health Crisis Act of 2013. It's a start. We need to start somewhere.
PostScript: It's Brain Awareness Week. Are we sufficiently aware of the stigma attached to diseased brains? To damaged (chemo)brains? Are we including everyone's brain in this awareness campaign?? Awareness. It's a trigger word for me. I hope brains does it better than breasts.
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