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My story

This year there are two incredible bills before the California State Legislature that have the ability to make comprehensive care and treatment more readily available to people suffering from serious mental illnesses, specifically schizophrenia spectrum and those afflicted with substance abuse disorders.  I wrote a letter of support while waiting in the E.R. with my father, to advocate for him and ensure that he recevied care.  Whether or not the bills pass, everything I wrote about is true and if you've ever wondered, "Why NAMI?" or why do I do what do, here's a chance to learn more. 

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"It was 9:38 p.m. when I called 911. My emergency was the need for an ambulance; my father would not respond when we tried waking him up. His breathing is fine, his color is fine but he will not open his eyes or respond to us in any way.  My husband watches him while I unlock the front door and ensure a clear path to my dad’s bedroom, grab my jacket and hat (because it’s cold in hospitals), and make sure that I’ve got the “important papers” binder and my notebook where I log all of my dad’s medical care.

The paramedics arrive and immediately begin to assess my father while simultaneously getting as much information as possible; what are his conditions, how long has he been like this, has this happened before, does he have an ID, what are his medications, does he take them regularly, have there been any changes recently? There’s an answer to every question except knowing whether this is cataleptic or symptomatic of another potentially more serious condition. My husband and I wait as they bring in the gurney to carry my father out to the ambulance. I follow behind them, get the name of the hospital and then head straight to the car. 

The drive is short and familiar. Heading to the E.R. entrance is automatic, pulling into the garage and parking in the usual spot on the incline facing East. There’s always good parking at this hour. I’ve arrived just as my dad’s been registered and have to wait until he’s been placed in a bed before they can allow me back to see him.  I’m waiting in the car, checking in with my husband and sending messages to my sister and aunt. The hospital name comes up on my cellphone; they’re ready and want me to come in. The number is already saved in my contacts. This is the 4th E.R. visit this year.

It’s 1:34 a.m. and Willy Wonka and the Chocolate Factory is on mute in E.R. room 64, the room we were in in January. My father’s blood has been drawn, urine sample taken, chest X-rayed, EKG done and he came back from a head CT not too long ago.  I’ve provided the details about “why” we’re here three more times and watched multiple health professionals attempt to rouse him but still no response. I’ll be waiting for at least another hour before his test results come in and in all likelihood will be told, once more, that there is nothing medically wrong with my father and he’ll be released.

There’s not a lot I can do while I wait just like there’s not a lot I can do once we’re sent home. So for now I’ll make the most of it and let you know how lucky we are. We are so lucky to be here receiving care right now. This is the moment that so many families hope for, dream of, pray for, and wish they could be in; their mentally-ill loved one is in the hospital and regardless of the circumstances that brought them here, this is the chance to get that evaluation, to get that 5150 and maybe finally be able to see their loved one get the care they so desperately need.

For the families waiting, “desperate” is not as accurate a description so much as despondent, utterly exhausted, feeling helpless and despairing as they watch their loved one suffer from the effects of their mental-illness and are told time and time again that there’s nothing that can be done.  These loved ones can, even with a diagnosis in their records, refuse treatment, decline care, deny that there’s anything wrong and continue to fall apart to the point of a more headline-worthy tragedy all because, “it’s their choice.” 

Three years ago it was my father’s “choice” not to interact with anyone and to ignore any health care providers he encountered. It was his “choice” to compulsively leave on all the lights and water faucets at the “board and care” facility with cracked ground, low-hanging wires, and no heating and air conditioning that he “chose” to live in.  It was my father’s “choice” to disappear for days at a time walking miles in soiled clothing without means of contact, money, food, nor water only to be picked up by law enforcement cities away and returned to his facility, or taken to hospitals that did the same because he presented well.  And it was his “choice” not to take his medication and stop eating until he dropped to a weight that verged on irreversible damage before he was finally hospitalized to have a large and painful abscess that he “chose” not to talk about treated.  This is not the trajectory nor story of everyone with a mental-illness but it is all too frequently and one case too many the reality of countless others.

There is a very real and inherent danger in the way we use the word “choice” when discussing people with extreme mental-illnesses and/or histories of substance abuse.  In these contexts “choice” becomes a double-edged sword that prevents these individuals from receiving appropriate care when the opportunity arises and then blames them for the consequences of their untreated conditions. Rather than recognizing a person’s agency and respecting their rights the framing of “choice” places the burden of responsibility on the individual suffering while at the same time absolving the “unaffected” from any duty of care or meaningful intervention, in a way that would be unthinkable if we were talking about someone with a brain disorder or other recognizable debilitating condition.  

They say that privilege is not recognizing that something is a problem simply because it is not our problem. The statistics as underreported as they are bear out that there are far more people affected by these conditions than we realize or care to admit.  It is amazing how often we hear that someone has “lost their mind,” or ask, “who in their right mind?,” would make the kind of decisions that lead to such perilous outcomes, and yet our policies, our institutions, our professionals, our programs and ourselves still respond in a way that ignores the literal truth of those very observations. These are the many parties who actually do have a choice and the opportunity to find a better way to respond to and care for our loved ones in need. Choosing to support and pass SB1338 and AB2830 is a step in that direction.

It’s 5:33 a.m. now. The movie and several infomercials from 70s music collections to full-body massage chairs have come and gone. My father has been medically cleared based on his physical tests and the attending doesn’t know what to do. The telepsych consult advised they could not make any decisions due to my father’s inability to answer their questions.  He is still here, unresponsive to everyone. I ’ve replied to all the incoming texts but don’t have any answers. What I do have is a choice and I choose to advocate for my dad, to see that he has equal access to and is given the care he deserves. No matter how limited my capacity may be, advocating matters because regardless of the cause of this hospital visit, my father clearly cannot interact at all with the health professionals and provide them information that would enable them to help.  I choose to speak up so that others have more than hope to be in this position but are given the opportunity to do the same.

All I humbly ask is that these stories be shared and read and given the fullest consideration... Please take the time to recognize that these are more than anecdotes but the lived experiences of those statistics [you hear about]. Please know that these problems and their consequences are very real. Please understand why the burden of care cannot continue to be left up to the impaired individuals.  Please respect why we family members cannot afford to let things continue as they are, to be in a society where our loved ones are allowed to suffer, to live in squalor, and continue to fall mentally and physically apart until there’s nothing left because it’s their “choice” to do so.  No one chooses that kind of pain. No one chooses that path of destruction. No one wants nor aspires to those conditions at any point in their lives. We were not taught from an early age that that life is an option much less an acceptable one and yet as a society we continue to accept it. We do not want this for our loved ones any more than we would want it for ourselves. We cannot do this alone and we need your help. Our loved ones need your help. There will never be a perfect system nor a magical solution to this problem but there can be change, there can be improvements, and there can be progress with your help... "

What we can do

While we ourselves cannot vote on these bills, and their time on the docket will come to end, there are still other ways that we can help.  We can write letters of support for other opportunities.  We can learn about resources in our local community. We can donate to and fundraise for the kind of organizations that work tirelessly for individuals with mental illesses and their families like NAMI so that they can continue to provide those services for free. We can support each other by talking about our experiences and listening.  We can help each other feel seen by normalizing these conversations.  We can share this message.  We can walk together on May 21st in solidarity.  Together, we can do something.

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