After my “Friday Fun Run” last week, I felt unusually tired. I decided to work on the accumulation of three weeks’ worth of laundry and return some emails from home instead of going into the office. The news was on in the background. Mike Huckaby was on CNN discussing the mass shooting at a community college in Oregon and explaining how most shooters are “mentally deranged”. I immediately had a visceral reaction to that word “deranged”, AKA mad, crazy, crackers, nuts, unhinged, disturbed. I wonder why mental health conditions illicit descriptors attacking the character of the person as opposed to the very different language used (i.e. febrile, ambulatory, distended, acute) to describe physical health conditions.
One in four of us at some point in our life will struggle with our mental health. Not surprising, I suppose, given the numbers of us that struggle at some point in time with our physical health. We are both a mind and a body after all. Perhaps more surprising though is that only about 3% of those diagnosed with a mental health condition are violent http://www.eachmindmatters.org/wp-content/uploads/Stigma-Myths-Facts-English.pdf. I would imagine this statistic seems skewed given that the scope of American public discourse on issues of mental health have been left to main stream media and shaped by stories of, in Huckaby’s words, “uncivilized savages.” This language, directly from the dark ages, to describe a modern day condition most of us have encountered or experienced personally to some degree or another.
My mom had been on my mind for the last several days and since I’d not spoken to her in over a week and had been able to carve out a bit of time, I set 20 minutes aside to give her a call. Since being on life support for six weeks last spring due to surgical complications following a medical procedure, I’ve made a concerted effort to call her more consistently and more frequently. After sounding pleased to hear from me she responded to my routine question about how she was doing with, “I’m so depressed”.
For the next seventy minutes she shared her experience. For seventy minutes, I tried to listen carefully, quiet the longstanding narrative in my head that was screaming, “Here we go again”, remember, with newfound clarity why I had chosen to become a therapist and counselor educator, and took notes! It went something like this.
“I feel like I have a chemical imbalance. When I was in the hospital last spring, every person with a stethoscope changed my psychotropic medications. Once home I was on 10mg of Lexapro and I was supposed to go up to 20mg. I shifted my dose as directed and the medication snuck up on me. As the levels rose I began to experience symptoms.”
My mom described a series of days where she slowly descended into a psychotic state. “I was disoriented. I didn’t know if it was day or night. Both T.V.’s were on nonstop in my small apartment, I was anxious, rocking, digging my nails into my arms and legs, I couldn’t sleep, was afraid to leave the house and experienced flashbacks from the trauma of being hospitalized”. In brief moments of clarity she realized that she must be having a reaction to the medication. She put the 20mg pills in a drawer and replaced the bottle kept by the sink with the 10mg tablets. She said it took a while to become lucid again, but when she did, she attempted to seek the help she needed.
She described the events to her psychiatrist and requested to be taken off the medication. My mom had been assertive. “Throwing more meds at me is not how I want to proceed. There is an undiagnosed or misdiagnosed mental illness here”. She explained that it had been two years since her last full psychiatric evaluation and reminded her of the many medical complications in her recent past that may have shifted things chemically for her including being on life support for nearly three months.
The doctor responded by stating, “You are blaming me for this”. My mom explained that she absolutely was not. “Look, you gave me the right medication for depression and anxiety, it says so right here on the bottle. But the system gave me no way to access help”. According to my mom, she did not want to be hospitalized and so was understandably apprehensive about calling 911. Her county caseworker never returned her call (she’s in the process of trying to get a new one), and her follow-up psychiatric appointment had been scheduled 3 months out from the initial administering of the new medication. The psychiatrist took my mother’s phone number and said she would look into an evaluation but because she was in need of a reevaluation the psychiatrist refused to change her current medication. That was several weeks ago and my mother feels certain that she will not receive a phone call and that it will be months before receiving an appointment to be reevaluated.
“I just feel like I’m falling through the cracks and I don’t know what to do”, my mom said. Frankly, and despite my professional training and experience, I didn’t know what to do either! My attempts to problem solve with her were met with rational descriptions of the many barriers preventing acknowledgment of her needs, dismissing her as a collaborator in her own care and thwarting the accessibility of lifesaving resources. “If I continue down this path, I will commit suicide. The meds are working against me and my Dr. is not listening. I’m really afraid”.
There it was, her clear cry for help. I started to slip on my professional hat. “Mom, if you go to the hospital, they can help you do that. They can work toward stabilizing you and provide you resources in a safe environment”. She reminded me about her fear of going into the hospital based on the trauma of her last experience and her belief that being hospitalized would make her sicker (a belief held by many in need of higher levels of care). Even as I reminded her that this fight would be a very different one than the last, I doubted that the medically driven psychiatric service delivery model was the best route for her.
Wasn’t it likely that an admission to her neighborhood psychiatric facility would resemble her last hospital admission? That each doctor would conduct their own assessment, change and adjust medications in isolation from her other chronic health conditions, and make decisions without consultation with her current treating physicians and therefore without a thorough understanding of her medical history. Not to mention the loss of independence in managing her chronic pain and reliance on the shift nurse to remember, get the dose right and administer it on time. I could tell that the thought of having to go through a version of that again in some ways created a forced sense of sanity-whatever it would take to stay out of the hospital.
I explored with her the possibility of reengaging in a day treatment program that would provide a higher level of care while keeping her out of the hospital. “I was in the wrong place when I was there”, she said. “They told me I had to be in the program in order to gain access to the psychiatrist”. I had heard this story unfold in real time about a year ago. She recounted it now as she had then. Her counselor acknowledged that she was higher functioning than most in the group but with Medicaid it was the only route to accessing a psychiatrist. She had even been directed at times not to respond to the questions posed in the therapy groups because, “We know YOU know the answer, Renee”. Initially, this story was shared with a sense of pride.
On this day, her take on that past situation was slightly different. There was recognition that if she returned, she wasn’t likely to gain what she needed because she would be excluded. Still, at the core of her experience was a sense that she is inherently different than the others she had been in the group with. “Those people are low functioning; they are homeless, addicts and felons and some are even mandated to be there. I want treatment but not with THOSE people”.
In a million mini moments throughout our conversation, I attempted to navigate my way through years of emotional baggage packed full of the relational challenges experienced by being raised by a mother with mental dis-ease. I gently reminded my mother that she is currently functioning at a lower level than she had been a year ago. I reminded her of how much I loved her and reminded her that she could call me anytime. I provided her with the National Suicide Prevention Lifeline (1-800-273- TALK (8255)) and informed her that she can call that number even if she is not currently in a crisis. I also offered to follow-up with her counselor directly but interestingly, my mom did not see the point.
This most recent incident with my mother presented new challenges for me as I attempted to listen with less judgement and more empathy. After traversing the relational peaks and valleys together for decades, the story was no longer personal. I realized that for many , it is a collective story couched in bureaucratic systems that too often fail to meet those suffering where they are. I somehow realized that the story was one that shouldn’t be passed through on my way to piles of laundry and emails but taken in, reflected on and shared in an attempt to raise collective consciousness.
Just like our physical health, sometimes we are on doing well and sometimes we need support and assistance. I reflected on my own experiences working in a behavioral health hospital and my acquired role as a mental health advocate and came to a disturbing conclusion. We can and must do better. The pain is overwhelming, the fear immobilizing, the confusion unnerving, the internal chaos maddening and we must do more for those suffering and those that love them.
In the midst of a cleansing cry after hanging up the phone, I realized that the innovative strategies designed to change the system existed within the details of this story and the millions like it; answers about how to speak to one another respectfully about mental illness, how to effectively train medical professionals to integrate mental wellness into primary care settings, how to reach those whose very disease prevents them from seeking or accessing mental health care and how to reach those suffering not on our terms but right where they are. It’s not just my story but one shared by many of us. And the solutions are in the cracks our loved ones, friends and neighbors are falling into!
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Alliance for Community Transformation and Wellness: http://www.redlands.edu/academics/school-of-education/20180.aspx