According to the National Library of Medicine, "Schizophrenia is a mental disorder that makes it hard to: Tell the difference between what is real and what is not real; Think clearly; Have normal emotional responses; Act normally in social situations." A pretty straight forward, if not extremely simplified, definition.
The National Institute of Mental Health states that schizophrenia is caused by a mixture of the following; genetics, environment (in this context environment means exposure to viruses or malnutrition during pregnancy, problems during birth, different brain chemistry and structure.
Last week I said that I would get back to the whole "acceptance" part of being a parent of a seriously mentally ill child, SMI as they are referred to often. I don't know that acceptance is really at the core of my issue. I don't know that its what keeps me up at night. Nixi has schizophrenia, at this point I am absolutely certain of this. What keeps me up at night is the fact that I am NOT a neuro psychologist. I am not even a cognitive behavioral psychologist. I am a psychodynamic psychologist. What this means is that I conceptualize pathology from a standpoint of a person's ego development in relation to their world. Its easier if I just give you an example.
Nixi is 4, yet she has voices that tell her to that she doesn't deserve to live and that she must be die. From other conceptual frameworks in psychology this would be considered par for the course and somewhat a hallmark of illness. Yes, it is. But its not like these are separate entities from another time and space, these voices come from her head. And as such, from my chosen theoretical orientation, I stay awake at night trying to figure out where we damaged her...rejected her...made her feel worthless...failed her...in an attempt to come up with a way to fix those wounds and perhaps make her illness a little less savage. The command hallucinations almost discretely focused at me...how have I hurt her psyche so deeply that it has turned against me so violently? While I absolutely do not believe that we caused Nixi's schizophrenia, as I believe that it is a medical condition involving the brain, i certainly grapple with the nature in which her symptoms manifest. So, folks, that's what keeps me up at night watching videos and reading memoirs. The hope that I can gain insight into my and the rest of our roles that may in some ways shape this illness for her. I'd say maybe 20% masochist, 80% optimistic clinician...because if you can find where the psyche shattered you have a chance at putting it back together. Again, to clarify, I am not trying to find a way to "undo" schizophrenia. That's not going to happen. I'm just trying to find a way to mitigate its effects on Nixi's life.
A perfect lead in to a wonderfully strange, scary, hopeful, sad, and lovely encounter at Costco. Took the girls for a cheap slice of pizza and the always coveted lemonade with a shot of soda before hitting the pet shop. We got our food and found a large, somewhat empty table. Within moment a man in his late 20's sat down next to Safi and looked at my tattoos. The moment our eyes met I instantly knew that he was actively psychotic. This has nothing to do with my experience of living with Nix but everything to do with my years of clinical experience. When you work in the field you can spot it in an instant. He started asking me questions about my tattoos. As we spoke I noticed a few other people sit at his end of the table and it was readily apparent that they were all from either a Board and Care facility or a day program. Two ladies on the end vibed Autism or some developmental delay, another man mentally ill and perhaps developmentally delayed, another woman appearing mentally ill. So, after explaining my neck tattoo I said "These are my daughters, Safi has autism and Nixi has schizophrenia." Instantly the young guy sitting next to Safi says, "ME TOO! Ive got paranoid schizophrenia!" I tell him Nixi is on Risperdal..."That's what I'm on, and Cogentin for the side effects because they're really bad...but I don't think my meds are really working very good right now." The young guys proceeds to ask me tons of questions about Nixi and I ask him questions like if he had symptoms when he was a kid. He says no, but that he was in special education. As I talk to him, other than the hugely dilated eyes and odd cadence of his speech I don't notice any obvious cognitive deficits so I assume he may have had the insidious onset we see in children and it just wasn't recognized as the prodromal stage of schizophrenia. Then he begins to ask Nixi questions about her hallucinations. When she says they're monsters he replies, "Oh, man...scary." The gentleman sitting nearest to me, who I couldn't quite place, says ever so politely and eloquently "Do you mind if I ask how often she is hallucinating?" Stunned, but ready to roll because this experience is amazing, I tell him that her doctor estimates that she likely hallucinates up to 95% of her waking hours. He immediately looks deeply touched and deeply saddened. He says, "I am so very sorry." His speech slurred, slow..hands shaking and rolling...older than the young man who started our conversation and very obviously ravaged by the effects of years on older generation anti psychotics. It is he, however, who is the most stable of the group. Nixi stands, as I had tried giving her a quarter tab more of the Risperdal the night before to see if she could tolerate a small increase and indeed she could not..akathisia was back and she needed to be moving. As she talked to the young man and shifted her weight from foot to foot the woman sitting next to the young man says to her "Makes you want to crawl outta your skin, doesn't it?" Nixi replies, "YES!" I tell them that she is going to the psychiatrist this month for medication adjustment and they all nod their heads, young guys saying he needs his adjusted to. Our meal comes to a close and as we shake hands with each person at the table and thank them for their company, the older gentleman says to Nixi, "You're going to be okay, try not to be too scared". It was an amazing lunch. The ease with which Nixi spoke to these people and answered their questions without the hesitation we usually get was amazing. Big eye opener that we need to get Nixi more exposure to people living her life experience.
There's more to report but I'm completely drained from a busy, eventful week so I'll leave it at that and play catch up next week.
Sarah
No comments:
Post a Comment