The Language of Pain
The first time that I heard the word “dysregulated” was from a social worker on staff at a facility where my daughter was staying in Orlando, Florida. The first time I that I heard the word ” labile”, as in her mood is “labile”, my daughter was on a 72 hour hold in a hospital in California. The first time I heard the words “treatment-resistant” was when she was thrown out of a facility and taken to that hospital in California where she spent a weekend being assessed for the umpteenth time.
As these words that defined my daughter’s life entered my vocabulary, I felt their weight and their limits and the infinite doom that accompanied each one. I might be “dysregulated” when I am tired or stressed and need to get out for a walk with my dogs. But, this is not what the staff at the facility was talking about. “Dysregulated” in terms of my daughter was a much more encompassing term than just “out-of-sorts”. It meant that she could not be pulled into control – not by the staff nor by her own will.
I know what this looks like. Crying, raging, sneering, hard laughing full of derision, claims of being misunderstood and then the fall into sadness. When the anger dissipates, she looks spent, little and harmless. The victim of a terrible storm.
The more clinical term “labile” stopped me in my tracks. I was standing in the lobby of the University of Minnesota’s Veterinarian School where I had taken my dog that morning. He was sick; I was scared – both for him and for my daughter, whom, I had been told over the course of the day had tried to jump from the van en route to the hospital, cursed at everyone in sight and treated the staff at the treatment facility from where she was being tossed so appallingly that they were all stunned. The details were disturbing.
The sun was going down. The world was grey and cold. The parking lot behind the banks of dirty snow was thinning out. In a flurry of phone calls as they were bringing my dog to me, I learned about my daughter’s admittance to the hospital. Every fiber of my being ached for her. I just wanted to be there protecting her from what she had brought down on herself. Her mood was “labile”, a nurse told me with a soft voice in a soothing tone. But, she said they are keeping an eye on her and I shouldn’t worry. Yeah, right.
What the nurse and I both knew, that is so hard to explain to those on the “outside” of the mental healthcare world, is that once my daughter gets started, there is no stopping her. I feared how the hospital would be treating her when she is like this. Her rage had been fueled throughout the day by the treatment facility’s control over her life. She was not going to be able to walk away towing her bags behind her. She was deemed unsafe to herself and to those around her.
When these kind of things have happened in the past and I have been around, I have stepped in and been the buffer. Like I had a silent, safe room in my back pocket, tugged it out, pulled my daughter out of the situation, set her inside and stood guard until the rage/sadness passed.
After her discharge, she spent some months on her own before she wound up in a facility for the “treatment-resistant”. There, she was heavily drugged. I guess when they claimed that they had had success with patients like my daughter, they meant that they had staff pharmacologists, the bartenders of the psychiatric establishment, who knew every cocktail of psychotropics known to man. All of which they tried on my daughter. None of which worked.
“Treatment-resistant” means drug resistant.
Now, my daughter is home. I do not want to use the language of the psychiatric industry that took years of her life. But, then, how do I describe how she is feeling? “Not well” doesn’t capture the depths of her unhappiness or sadness or frustration or sense of loss or any of the waves of grief and physical pain that she seems to endure hourly.
She told me that she is at a “breaking point”. I want to stand by with comfort, but I keep making mistakes, inciting her anger and, at this point, I want to keep my distance. Her needs are insatiable and I am only human. The saddest thing is to realize that you really do not have any power in anyone else’s life. My desperate want for her to feel better looks pathetic. I printed out a wonderful letter from a kind man who offered a simple form of meditation that might be a stepping stone to future peace. No dice. I’ve suggested food, nutritional supplements. Not interested.
She has made the first important step of getting off of most of the drug regime that Austen Riggs had her on. The benzos will be the last battle and she is definitely not ready for that yet. It is almost like there is some comfort in the “known” world she inhabits.
This is the shift I wish I could set into motion. A little shove into the world of possibly feeling better. I think that it is possible. She doesn’t.
Here I stand with my arms overflowing with ideas that might help. But, she is not ready.
