Three days before my wedding, my brother called to tell me he was spending $4,000 a month on Oxycontin. He uttered a sentence that shifted everything forever: “I am a drug addict.”
Ten months later, we found out my first child, then just 2 weeks old, had a permanent hearing loss in both ears, there was no cure and she’d have to wear hearing aids for the rest of her life.
Twelve months after that, a detective called from Los Angeles to deliver the news that my brother had died of a heroin overdose. He was 30 years old.
In every instance, I was thrust onto a desolate road in the middle of the night with no map. Panic-stricken, I had to come to terms with the fact that I was stranded, determine where exactly I was and somehow find my way back home.
Today, we all find ourselves on that road, grappling with an unknown terrain and all the fear and anxiety that accompanies it. We’re collectively standing in uncharted territory, and no one knows what will happen. Frankly, this has always been the case: Marking a calendar or mapping out a five-year plan may make us feel like we have a measure of control, but any number of things can throw even the most meticulous plans into disarray.
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In the wake of this global pandemic, so many people are asking the question that has run through my head over and over again these last few years: What do I do now? What I’ve learned is that sometimes you just have to accept that, no, you don’t know where you are or how to get “home,” but that it’s virtually impossible to stay stuck forever.
When my daughter was diagnosed, I felt powerless. By 3 months, she’d had a kidney ultrasound, an MRI, a traumatic blood draw and several trips to a genetic specialist. Certainly not how I’d envisioned the start of her life. And even after all the tests and appointments, the doctors told us they didn’t know the cause of her hearing loss, whether it would get worse or what it would mean for her future.
What happened with my brother, of course, was different. While I wouldn’t change a thing about my daughter—from her curly brown hair to her glittery hearing aids—I would very much like to have him back, and it’s hard to spin any good that has come after his death as a silver lining. The common thread, though, is that I wasn’t prepared for any of it, and putting one foot in front of the other became my knee-jerk survival response.
For my daughter, that meant getting her fit with hearing aids and enrolling her in speech therapy at just 6 weeks old. It meant educating myself, asking questions, challenging answers that were unacceptable. Her hearing aids weren’t covered by insurance, so for two legislative sessions spanning three years, two other moms and I drove back and forth to Austin to testify in front of committees and make face-to-face contact with elected officials. And in September 2017, Texas passed a law mandating insurance coverage of hearing aids and cochlear implants for children under 18. This was something I could do not only for my child but for every child like mine in the state.
When my brother died, I could barely open my eyes each morning, much less formulate a disciplined plan for what would come next. If I hadn’t had a baby who demanded regular feedings, I’m not sure I would have made it. For months, I wept through all of them. And yet even in the early days, there were things that had to be done. So I did them.
The day after my brother’s funeral, my family flew to L.A. to pack up his house. Even though no one was ready to do so, we sorted his things into piles of keep, donate or trash. In Judaism, moving forward before you’re ready is built into the grieving process. On the final day of sitting shiva, a weeklong Jewish mourning custom, loved ones are instructed to rise and take a walk around the block. Even if you don’t feel like it, you go.
As we come to grips with a changed world, it’s O.K. to “not feel like it,” to feel sad, scared, frustrated, restless, disappointed, angry. When you realize your life is headed in a different direction than you had anticipated — even if it’s not ultimately a bad thing, as in the case of my daughter’s hearing — it’s disorienting. Grant yourself time to find your bearings. Curl up in a ball and stare at the ceiling. Stay in pajamas for days on end. Watch bad reality TV.
But know that stasis is not the answer nor is it really an option. As a result of this global health crisis, systems will change, priorities will change, we will change. We can’t go back to what was. We can only respond to what is and take steps toward what we hope will be.
I started writing after my brother died as an exercise in survival. That writing turned into a book. And that book connected me with other folks who were grief-stricken. I partnered with one of them on a podcast about the opioids crisis. And that podcast turned into a media company. None of this was the plan, and yet, here I am. For the most part, I’m happy and fulfilled but acknowledge that no map could have led me here.
When I look around, everything looks vastly different than I thought it would. But somehow I’ve made my way home.
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