Poetic License

When my daughter was little, Halloween costumes scared the crap out of her. We couldn’t go to the mall during spooky season, lest there be a Halloween shop (as there usually was) or a few animatronics on display at the drug store in the middle of the mall. My ex-husband and I tried to get her over it a little at a time, but generally she wore things like bunny costumes and such until she was a little older. When we lived in Austell, GA, her dad was Frankenstein at the local haunted house. He got two months of decent wages for set-up and tear-down and for being one of the scare actors. It was very hard for Stephanie to deal with his make-up job, and sometimes she refused to see him before he left for work.

I don’t remember exactly when she stopped being afraid, but eventually Halloween became kind of our thing. She got into B-horror movies, costumes, haunted houses, and such as she got older. One year she helped me decorate our big front porch with crime scene tape, a chalk outline of a body, fake blood, and scary Jack-o-lanterns. It was, as one woman put it, a “Martha Stewart neighborhood,” with the moms all trying to outdo each other with pretty decorations and homemade costumes for their kids. Our house was skipped by quite a few of the neighbors because they thought it was too scary for kids. Or maybe they thought we were weird. I was handing out candy in a vampire costume. One year when I did make the kids’ costumes, I turned my son into a werewolf with fake hair and spirit gum. (All that came from my days of doing costumes for high school musicals. Unfortunately, the hairy face hurt coming off and he never let me do that again! That year, Stephanie was a vampire, complete with the white makeup and red lips with fangs. Although the kids loved to go out and nab a lot of candy, they were also excited to come back home and help hand out candy. I was almost always in costume, too.

As she entered her early teens, though, our daughter had a psychotic break. We learned that she was hearing voices and that they were telling her to hurt herself. We – of course! – sought help for her. She was hospitalized many times during the remainder of her life. Her mind also made her gravitate to the wrong people, the scary fringe crowd. She began drinking with a boy from school (though I didn’t find out about this until later). We employed a lot of doctors, therapists, pediatricians, and hospitals in search of help for her. We would see a little improvement, and then she would stop complying with treatment and would slide down again. She claimed the medicine wasn’t working. She began cutting herself. I locked up the knives. I tossed out any razor blades or X-acto knives I found. I’ll never forget her gynecologist, after one of her cervical surgeries (because she also had physical conditions along with mental conditions), saying to me, “She cuts herself. Have you seen her thighs??” I nodded and said, “We have taken her to so many doctors and therapists and she refuses to comply with treatment. I don’t know how to help her.” But oh, the judgment in that doctor’s face. It’s so easy for people to judge. They can’t believe that a normal family could have a child with such problems. They suspect that you’ve somehow caused it. No, I didn’t cause it. And I tried to help.

I fought for her. She fought me.

The IEP plan at school was the only thing that kept her from being expelled. She had a brilliant mind … brilliant! But it was also a broken mind. Every practitioner had a different diagnosis for her. These ranged from dissociative identity disorder (multiple personalities) to schizophrenia to schizo-affective disorder to bipolar type I with psychosis. I think the latter made the most sense. She had some of the classic highs (staying up for days on end) to the classic lows (not getting out of bed or bathing).

During ages 14-15 or so, her artwork featured the same character over and over. It looked like a demon to us. We were very scared for her. I wondered if (yes, I thought this) she was possessed. I would have done anything to help her. Anything. But she explained to us that the character was a fireman. “And firemen help people, don’t they?” she said. I still have my doubts that that was what her drawings were about.

When you have a child with mental illness, it isn’t as though you have a child with special needs you can see. No one tells you that you’re doing such a great job with your child, in spite of his challenges. Instead, most of us families just don’t talk about it with anyone. There is precious little support. It can be very isolating and lonely. These kids suffer, and their families suffer along with them. You try hard to help them and to help yourself at the same time. I gave up a job as a director and then worked part-time as a manager at another company so that I could take the train to the hospital downtown where Stephanie was an inpatient for those family meetings. I couldn’t be both the mother she needed and the hard-charging executive. I had to choose. Because of my own struggles with clinical depression, I had to put up walls that kept up the facade on the outside, toward other people, and the black clouds on the inside. I had to put my own needs aside completely.

By the time she was 16, she wanted to drop out of school, a devastating thought to her father and me. We were delighted at how smart our children were and dreamed big dreams for them. So we compromised. She no longer had to go to traditional school. We paid tuition for an online high school (which were sparse in those days) so that she could still graduate. That worked for awhile, but eventually we relented and let her take the GED exam. She then went on to community college, where she wanted to be a surgical technician. She changed her mind halfway through that program, but then, when she had enough credits, she wanted to transfer to Towson University. I was always on her side, trying to help her do anything I thought would make her happy or help her find a career she could manage.

In the end, nothing we tried worked. She had several hospitalizations after she moved to the greater Baltimore area, some of which she hid from us. I wanted so much for her to find her way in the world. Her dad and I paid her way for many years, hoping that she would have less stress if we helped her financially. It all put a great strain on our marriage and eventually tore us apart. We were left with tens of thousands in debt when she died of an accidental overdose of her psych meds and pain medication. We divorced. Our family died along with her.

The boogeyman, you see, was very real, and he was in her brain. She wouldn’t tell me exactly what these voices would say to her. She didn’t want to talk about it. I think in her own way, she wanted to protect us from hearing the worst of it. Many kids go through this, and many of them don’t make it to the other side alive. I have read many stories about other parents who have lost their kids to drug addiction or suicide, and I always think, “They were self-medicating, just like Stephanie was. They wanted to shut out the voices.” But what typically happens to those of us who lose a child in such a way is that people don’t want to talk about our child. They become uncomfortable, and I know what they’re thinking. That it could never happen to their little Johnny because they are good parents and would recognize the signs and get little Johnny some help and everyone would live happily ever after.

We did all the things we could to help her. Our family was pretty damned normal, and it was a fun family to be a part of! Part of the reason my son and I get along so well is because our family was fun, but it was also a family that went through fire together. It created bonds. Even with my ex-husband, I still have a connection. We made a lifetime of memories. Maybe his marriage now is better partly because they have no children together. He can pretend none of this ever happened, but I know it’s on his mind, just like it’s on mine. Stephanie is the big missing piece of our lives that left a hole so big. We each have our own way of living with the pain and the loss.

It took me awhile to embrace Halloween again. I spent quite a few years so triggered by that favorite family holiday that I would turn off all the lights and retreat to my room, watching Halloween each year. I couldn’t bear to hear the doorbell or a child’s knock on the door. I couldn’t bear to look at the decorations or the costumes. Instead, I immersed myself in scary movies. It started a new tradition that I share with my son. For spooky month, we rewatch our old favorites and try to find a couple of new ones. Last year I dressed as Alice Cooper for Halloween at work. This year I have another costume. I might go buy a pumpkin and carve it for Halloween night. I have some ideas that are pretty–not scary.

I wish that Stephanie had lived. I wish she had found ways to accept help and to learn to cope. I wish she had learned to protect her fragile heart and mind. I wish my family had lasted. I wish we were celebrating spooky season together. And mostly, I wish the boogeyman weren’t real.

~Jude