I read January First this week. It was so familiar, like a pair of clothes that I have been wearing for a year. The parts that horrify others are part of our normal, every day life. The holds, the screaming, the stares from strangers. Medication management, mood tracking, and frequent psychiatrist appointments. We have crisis lines to the local psychiatric hospitals posted on our refrigerator, and have the personal cell phone to our psychiatrist — just in case. It’s all part of our life.
Something about reading the book kicked me into acceptance. Until now, I had been alternating between denial and sadness. I hoped that this was “just” the trauma speaking, because Little Man has been through a lot of trauma. I hoped things would get better. Medications would be discontinued eventually. We would have happy holiday memories of decorating the house and trees. We would have touches of normality amidst the craze.
On other days, I felt very sad. I felt sad for Little Man, and sad for our family. I felt sad for the future that would not be. Little Man struggles significantly with mental illness. He is six years old, and has already spent 10 days for in-patient treatment at the local children’s psychiatric facility. He was released not because of stability or substantial improvements, but because his reactive attachment disorder and that he was starting to see his nurses as his family, undoing all the work of the past year. He now attends private school. He is the youngest child who has received private day school in our county, which is one of the 100 largest districts in the nation. He’s the youngest child in all four of the private day schools that we toured (likely covering 4-5 counties). He will never have “normal”. We will never have “normal”. We will lose friends and possibly family members. I already feel sad that I cannot really speak about Little Man’s challenges with the heartfelt honesty that would heal our hearts. Some people become scared. Some people tell us that if we tried this alternate therapy, if we tried this behavioral strategy, if we tried this diet, then everything would be okay. Some people minimize (because no one wants to think of a six year old having hallucinations or making death threats). Some people begin to see him as “other” and “less than”, which is my biggest fear and the largest reason that I don’t talk about much. We plan everything carefully, with escape routes. We learn to ignore the stares of strangers who likely believe that we are the cause of these meltdowns, that we should be “stricter”. We run into doctors who think the same. Stigma exists everywhere, and our lives are entwined with it.
Reading January First, I am starting to find acceptance, an acceptance still tinged with the blue edges of sadness. I don’t know that the sadness will ever go away. But — There are other children like Little Man. There are other families who face the same challenges, who spend much of their time working to create low-stress environments for their children. There are others who know the ache of loneliness and the fierce anger you feel at the unaccepting world. This helps ease the ache. Little Man will likely need medications forever. Little Man will never be “normal”, whatever the hell that means. I have no idea what Little Man’s future holds — high school graduation? College? Job? Relationships? I don’t know. I don’t know. I know that I love him, and will always love him. I can’t think about “what if” because the stories of adults with mental illness in this country can be so sad. (And it’s so not the adults’ fault. Our country sucks.) I live here, now, with him. I live in the moments of freeze tag, brushing back the hair from his forehead, or seeing his face light up when we hang our first twinkling lights in his room. And I live in the moments of screaming, of damage control, of crisis management and de-escalation strategies. I accept that we will always have to seek the moments of joy. We will never take them for granted.
In that way, there are gifts. There are gifts to seeing the fragility of happiness and life itself. There is a tiredness, but there is also a presence. We are here, with him, now. If we leave this moment, he will find ways to bring us back, rapidly. There is the gift of knowing him, which I would not take back, even if it meant that my life was calmer or quieter. There is the gift of connection and hope in finding other families who fight. I never realized how awful the stigma towards mental illness is in our country. I never realized how it affects every inch of someone’s life. We don’t talk about mental illness. We don’t talk about living with mental illness. At best, we watch it on reality TV and feel grateful that it doesn’t affect our lives. We judge, we shake our heads, and we go back to the comfort of our quiet lives and laughter. I don’t have that anymore. I don’t have the “blessing” of ignorance, and that is the biggest gift that I’ve been given.
January First also reminded me why I blog. It’s not to share tips and strategies. You can pick up any book with those. It’s to share life. It’s to share our life. I write to bring humanity back to mental illness. I write to lift the veils on others’ eyes. I write because this world will only be healed when we accept all shades of the rainbow, the stormy and the calm, the wild and the withdrawn. I will keep writing; I will keep fighting.