"She doesn't care? Or is she not ABLE to care?"
Such was the question posed to me by my therapist. I repeated it several times so I could begin to internalize and digest the words. Sissy isn't ABLE to care. It's her illness, not the person. She simply isn't ABLE to care.
It's safe to say those words because it doesn't negate the emotional truth I feel which is that able to care or doesn't give a flying flip, Sissy is still incredibly difficult to live with, even on a good day. And par for the course, she's raged through a manic storm and is getting a three day cool down.
I just can't say it enough. Her three day cool downs after manic storms are unbearable. We all want to say "HOORAY! She's better!" only she's not. 72 hours isn't very long when you know it's going to send her headlong into the next 13 weeks of hell, taking the rest of us right along with her. It's like being in the last car of the roller coaster as the cars climb the first steep hill. The rest of the cars go speeding down the hill at 80 miles an hour but that last car lingers at the top for a split second, watching all the other riders before them descending into the depths, screams of terror already escaping their lips and there is nothing you can do. You're in the last car, gravity and momentum are taking you right down with them, like it or not but for that nanosecond you lament, oh, if only I could just stay here and NOT go down with them!
Lamentations. The moments in which there is an expression of sorrow, mourning, or regret, often demonstratively. Mourning and despair. Chasing pavements that lead no where. It's a waste. The desire to give up is overwhelming.
The trouble with mental health professionals is that they all have an idea about how to help an individual with a particular set of diagnoses and never do the two (or three, or four or five hundred thousand) ideas meet. And should those paths actually cross and parents of the ill be on board with said plan, in all probability insurance will be the bastard that spoils the fun. P doc has ideas for Sissy. CBAY has ideas for Sissy. Her therapist has ideas for Sissy. We have ideas for Sissy. Insurance says, "SAY WHA?! uh, yeah. NO." And the whole train comes to a screeching halt, we all get tossed out, Sissy included and someone, some where in that fray gets a hold of The Dad and I and says, "Well, essentially, it's your problem to sort out so," as they put Sissy's hand back on ours, "good luck."
Then Sissy takes one look at us and rages for the next 17 million hours.
Said to my therapist when I hashed out these emotions, "White noise. I hear white noise incessantly. It's like the sound of a distant train rumbling in the distance. The wheels churn on the tracks in a cadence that unendingly whispers, 'SI-ssy, SI-ssy, SI-ssy, SI-ssy, SI-ssy. I can't think! I can't move! I'm frozen in time and indecision. The other four of us are paralyzed by the incessant, overshadowing, omnipresent needs of an ill child that isn't ABLE to care or change and it always falls on our shoulders to carry the burden. Mental health is broken. And soon so will I be. Instead of Sissy getting a psych ward stay, it'll be me in the hospital bed."
"Why do you keep going back to the thought that it's your fault that Sissy isn't able to change?"
"Because it always falls back on the parents. We can't tell people, 'Hey, we've got a mentally ill child we can't manage; a child whose needs supersede our abilities; a child that isn't able to change and is a threat to the quality of life for the rest of her family.' Professionals might care but insurance sees only the bottom line. Then DFACS sees only who is responsible for the care and is quick to point a finger at abandonment. And society? Those that walk the earth in bliss, never being affected by mental illness? They hurl insults and injurious words unwittingly. Isolation? Hopelessness? Give me a child that 'can't care' and I'll give you an entire family destroyed by mental illness."
I paused, overwhelmed by my emotions and my words. "When Sissy is gone for even a short while, the rest of us are functional, light as air, happy, fulfilled and content. I get a glimpse of what we're all capable of together and separately and it makes me so excited. Then she comes home. She ALWAYS comes home. And in ten minutes flat, her cyclonic affect has destroyed our sanity, we come undone and our quality of life is reduced to subzero again."
"Can you tell the mental health professionals guiding Sissy's care these things? Can you be this real and honest with them about how negatively she impacts all four of you?"
"I have. It's a fruitless endeavor. It all boils down to dollars. You could record these sessions and play them for the whole world but it won't make a difference. Dollars always win. Not me. Not my family. Not mental illness. Dollars. Dollars trump every other card in the deck. And I live my days grasping for a sense of quality. As long as Sissy is our responsibility, we all suffer. I will never be enough for her. I'm her greatest trigger; the fact that I exist, breathe and provide for her makes her insane. But it doesn't matter. I don't matter. WE don't matter. It's only Sissy. SISSY SISSY SISSY SISSY ... "
I stopped to pull myself together then added, "Seven more years. What could my family achieve, do or aspire to, if for the next seven years we could live without the tornado called Sissy? What damage will living with a tornado for seven more years do to my two other children, one of which is also impaired? If we could learn to cage her tornado so the rest of us could live our lives unaffected by her issues ... but no. There is no therapeutic approach to help families in that way. They don't make tornado shelters for families that want to continue living in the house that the tornado is obliterating. The two are mutually exclusive."
We ended the session shortly afterward, time finished it up. I left feeling worse than when I went. I'm tired of trying, fed up when I don't get anything back, for what? For the tiny baby I laid eyes on ten years ago this November. Her haunting eyes refusing to make eye contact with me. A lifeless, joyless bundle in a car seat, one side of her head flat from being stationary for so long, her bottom raw and bloody but she didn't cry in pain, her clothes soaked with urine and her bottle filled with rancid milk. THIS image I see every time I look at Sissy now. Her drawback when I attempted to caress her head, her anger when I tried to tickle her, and those pleading, haunting eyes. I should have known. In that moment I should have known the extreme pain she felt would be the pain I would feel, every day I tried to love her, for the rest of my life. Because I will, though it kill me, though she never be able to care, though her other organic mental health and developmental delays overtake her, though she screams at us that she doesn't like us and will only be good if she's getting something.
I'm no hero. I'm a fool.
There is a parallel universe in another dimension that is right in our midst, right in front of our faces that we can't see or touch. In that universe, Sissy is whole and all five us are living a functional life.
We'll all be free when we can step into that dimension. Until then, I wait and hope that there is enough hero in me to outwit, outlast and outplay the fool in me.