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Loving someone who deals with a brain illness is one of the greatest challenges I’ve ever had to face as a mother, a wife, or an individual. When someone has a physical illness, there’s indisputable evidence it exists — it shows up in a blood test or maybe as a cast on a broken arm. But when someone has a brain illness, like bipolar disorder, depression, or schizophrenia, it shows only in their behaviors, which can be interpreted in myriad ways. Lazy. Willful. Mean. Weird.
Our older son, Andrew, arrived into a loving family after an impossibly long labor. My husband and I had envisioned him having a happy childhood and an eventual path to college, then a fulfilling life with a good job and a loving spouse. You know, the usual. We didn’t realize that Andrew’s intense crying jags, which left me weeping and dumbfounded, weren’t typical until our second son came along and was a happy, easygoing baby.
As a young child, Andrew threw tsunami-sized temper tantrums filled with a simmering rage that lasted for days. When he started hurling things, we had to hold him tightly until he calmed. Those long-lasting outbursts left my husband and me drained and worried. Andrew, on the other hand, would be just fine for a few weeks or even months afterward … until the next outrageous explosion. A spell could be triggered by something as small as not getting to wear the particular pants he wanted.
Teachers didn’t see what we at home saw. Andrew was charming in their classes. Of course, he’d often ask to go to the nurse, though nothing was wrong physically. And he refused to do his homework, even though he was very bright. Friends and family sympathized with us, mostly, but were clueless about how to help. And one person even blamed me, the mother who bore the brunt of all this, for Andrew’s behavior. She insisted I was too strict with him.
This isn’t the future we envisioned for our son all those years ago.
We had hesitated to take Andrew to a psychiatrist because we didn’t want a label to prevent him from achieving that future we imagined for him but, eventually, Andrew’s wild and prolonged outbursts forced us to push past societal stigma and make an appointment. It took a while to find the right psychiatrist, but when we did, she spent a long time getting to know Andrew and sent him for a number of tests before she delivered the blow: “Andrew has bipolar disorder.”
What? Our son? Sure, now at age 12, his current life plan is to make it as a rap star or die trying. Sure, he has erratic sleeping and eating behaviors, spends his allowance recklessly, and exhibits wild mood swings. But bipolar disorder?
Accepting the diagnosis meant letting go of some expectations we had for our son and suppressing our anxiety over what the future held. It took a long time to get Andrew stable on a good medication profile. Of course, the newest, most effective medications were also the most expensive. It was a fight with insurance every month to get our son the medicine he needed for his own safety and ours.
But even with an excellent psychiatrist, a therapist, and medication, there were still major fallouts from the illness. On Mother’s Day one year, Andrew, 19 years old and with 20 dollars in his pocket, flew across the country to live with someone he’d met on the Internet in hopes of enhancing his music career. And although we were in contact with Andrew via phone and Skype the whole time he was in Texas and we saw that he was getting worse, he never asked us to come home. His illness results in a serious lack of judgment sometimes.
What he did was put a call out on Facebook for help to get home, which we never saw. But our adult niece saw his plea, so she sent him money immediately. He got home, got back to his psychiatrist and back to regular doses of his meds, and was finally stabilized again. And it took some time before we even found out that our niece was the one who rescued him.
When he was 20, every tooth in his mouth had to be extracted and replaced with a full set of dentures because of his daily consumption of more than 10 cans of cola and his habit of never brushing his teeth. Andrew used caffeine to elevate his mood — self-medication.
We had hesitated to take Andrew to a psychiatrist because we didn’t want a label to prevent him from achieving that future we imagined for him.
There were so many dark, dark nights with Andrew’s behavior and the consequences of that behavior that sometimes I’d collapse into our bed, sobbing. My husband and I thought we were going crazy. It took everything we had just to hang on to our sanity. Then a beacon — NAMI (National Alliance on Mental Illness) — shined light into our darkness. Through our local NAMI affiliate, we found help and hope and so much support. We met other families just like us, dealing with a loved one with a brain illness, people who could understand our upside-down lives without our trying to explain it. We learned so much about Andrew’s illness that at long last we were able to look at him with compassion instead of the horrible, and shameful, feeling of contempt. We realized his behaviors were not willful and mean, they were the result of a very real, very insidious illness.
The people at our local NAMI not only embraced us, they embraced our son. They asked him to speak about his illness to caregivers, doctors, teachers, and parents at conferences and events to promote understanding and empathy. And he did — eloquently and charmingly. I was so proud of our son for using his experience to help others. I was proud of him for speaking out, for trying to smash the stigma surrounding mental illness that keeps people from seeking the help they need.
After one of those events, Andrew and I discussed writing about his illness. I promised him I would. Someday. At the time, our painful experiences were still too raw.
Eventually, I realized that writing about our experiences could shine a light for others, could help them navigate their way out of the darkness we had lived through. I wished someone had told us about NAMI sooner. I wished we weren’t afraid of being judged and sought treatment sooner. I knew that by speaking honestly and openly, we could make the path easier for others.
So I wrote a novel, Lily and Dunkin, told from the points of view of Lily, a big-hearted, nature-loving transgender tween, and Dunkin, a 13-year-old who has bipolar disorder and spirals toward psychosis. While I researched exhaustively for both characters in the novel, many of Dunkin’s traits were based on our son. For example, Dunkin can’t consume enough caffeine and sugary foods, just like Andrew. And Dunkin has the same racing thoughts our son experienced. Even Dunkin’s decision to stop taking his medication mirrors Andrew’s decision to stop taking his medication because he thought it impeded his creativity.
I wrote Lily and Dunkin with my son’s blessing, yet I was terrified for him to read it. What if he hated it? What if he felt I’d gotten it wrong? But after reading an early copy, Andrew said, “It’s like you were inside my head, Mom. I’m so proud of you. This book will help a lot of people.”
We learned so much about Andrew’s illness that at long last we were able to look at him with compassion instead of the horrible, and shameful, feeling of contempt.
I hope Lily and Dunkin will provide mirrors for some, so they feel less alone in the world, and windows for others to create empathy.
A mother wrote to me recently about her sixth grade son, who is both transgender and has bipolar disorder. She thanked me for writing a book that might help others treat her son with kindness and understanding.
Andrew is not the person he once was. At 23, he’s living in an apartment with roommates. He is content and in control of his thoughts. He takes lithium and goes regularly to a psychiatrist. He writes and performs rap music on EPs, at live shows, and in videos under the name 2Brain. He is living his dream. Andrew embraced his illness because he said the flip side of bipolar disorder is maintaining high intelligence and creativity, which he wouldn’t want to give up. Here are some of his lyrics:
I tend to self-hate, can always criticize,
It’s easy, since I rarely look myself straight in the eyes.
But I’m learning that’s no real way to live.
So since I know that I am getting better, I’ll start trying to forgive.
Andrew, who at one point in his life couldn’t stand his dad or me, stopped over for lunch last week. After eating and chatting, he and I walked the dogs around the neighborhood, and Andrew said, “You know, you and Dad are the coolest parents I know.”
This isn’t the future we envisioned for our son all those years ago — having a brain illness that makes attending school and work impossibly difficult right now. But it’s a present filled with hope and help, recovery, and creativity.
And that’s more than enough.
Donna Gephart writes award-winning, humorous middle grade novels from her home in South Florida. Read more from Read Brightly below:
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