Four years ago, tonight, I drove home from Bend after sitting down with hospice staff to explain to them, in vivid detail, including pulling out my phone and showing them the name and phone number of the high-up person I would contact to call their bluff about their inability to access Medicaid dollars on her behalf (something I had never done before that moment, including during my time as a Governor’s staffer), how they were absolutely going to find a way to allow Dara, my dying cousin, to stay in their facility. She had brain cancer, which presented as a stealthy, hostile takeover of her ability to think rationally, and, yet, they claimed she didn’t want the help.
Let’s review her diagnosis: brain cancer. Terminal brain cancer. They knew my aunt and uncle would do anything for their daughter and the staff thought it was okay to ask them to spend huge amounts of money to provide care around the clock for their dying daughter, despite her eligibility for coverage, while simultaneously caring for their soon-to-be orphaned grandson.
Later, I braced myself and walked to her room. There, I saw the increasingly cruel effects of her disease: she wanted nothing more than to communicate but her hearing was largely gone and when she tried to ask me to repeat myself, her words sounded like nonsense. She met my sad smile with a crooked, half of her face quit working weeks before, grin. I sat on the edge of her bed, held her hand, and willed her to feel my deep and abiding love.
The hospice team came around, eventually, and because I had to get back to town so I wouldn’t miss any more time away from my corporate job (I had no time off left and flexibility was not offered), I soon pointed my car toward home. The brief relief I felt after helping solve a problem disappeared as the reality of her situation returned to focus.
Not long after I started driving the weight and enormity of the situation hit me, hard. I used the colors of the sky as an excuse to pull to the side of the road; I needed a photo of that moment. I got lost in contrasts: dark pockets tucked into glowing clouds; dry land stretched into snow-topped mountains; and, blinding blue sky above crisp, cold air. I waited for my vision to clear and again pointed my car west.
13 days later, she was gone. Less than a month later, I worked my last day at the fancy corporate (see: no flexibility) job; she inspired me to walk away from what I thought was my life-long ideal. That dream, however, was destroying me by inches and my renewed awareness about the fragility of our lives allowed me to say a painful but necessary goodbye.
A year later, on the anniversary of her death, I gritted my teeth and sweated through the pain of my first tattoo. Did I mention I didn’t like tattoos to the point that I secretly judged people with ink on their skin, including Dara, previously? I could think of no better way to demonstrate to her, and to me, my dedication to living life as fully as I could manage. Soon, I also stopped wearing mascara. During the year she was dying, I asked myself repeatedly, “what would I do differently if I were Dara?” and I kept thinking about how much time I spent applying and removing mascara. Other than a couple of special occasions, I haven’t worn it since.
Near her birthday in 2014, I boarded a ferry and attended a writing retreat called Write Doe Bay on Orcas Island where I wrote down my deepest, most shameful secret (and I didn't combust, as I was sure would happen) and then read it to a room full of strangers, a handful of whom are now among my very closest friends. I also read aloud bits of Dara’s life and mine, our intertwined story. With what felt like her encouragement, I claimed my space as a writer that weekend. About a month after that, I earned my undergraduate degree with a 2.549 GPA. Better 15 years late than never.
Approximately two years after her death, I experienced the miracle (it is a miracle for me – I’m not asking for your thoughts on the diagnosis or treatment of my brain) that is an ADHD diagnosis and the medication that allows me to access my brain’s superpowers while reducing the destructive impacts on my life. Depression is a constant presence in my life but with the ADHD diagnosis, I was finally able to make sense of decades of mistakes and forgotten promises and an inability to complete what seemed like the simplest tasks all while maintaining a bright and shiny exterior in an ongoing attempt to fool the world. I continued to fulfill the promise I made to Dara that I wouldn’t let the darkness dominate, wearing a bracelet that reads, “I will fight the fuck back” and her initials (along with the initials of each of my grandmas) whenever I needed a little extra help.
Three years later, I felt melancholy and asked a dear friend to meet me for a drink, not realizing until we sat at the bar that evening why I felt so overwhelmingly sad. I didn’t try to hide my lingering grief because he was willing and able to let me pour out my sorrow without flinching, trying to change the subject, or rushing. I put the metal swizzle stick from my drink in my pocket and it now rests among the treasures on my writing desk, a reminder of what true friendship looks like.
Four years later, I’m still here. I think of her every single day. I say her name, often, because her mom tells me it helps to know Dara is not forgotten and because she is forever a part of my story. This image of her that I took through the screen in her kitchen window the year she died hangs on the wall of my office. She is just over my right shoulder, right now, as I type.
She was the most invigorating, infuriating, inspiring person I’ve met in my soon to be 40 years living this wondrous life. Dara would flip me off, moon me, tell me to pull the stick out of my ass, and then loudly proclaim her love for me within a three-minute period. She teased me mercilessly about being a good girl. In sorting through boxes and bags of memorabilia from my parents’ attic, I found these photos tucked inside of an envelope in a teenage effort to hide the evidence that I occasionally let myself break rules along the way.
She knew I had it in me to live differently, to not shy away from my vulnerabilities, to disregard societal rules; it took her death for me to believe her.
I still play it safe. I worry more about the comfort of others than I do about my own – and not in a good, generous way.
Dara is glad to add a “not always” to my above statement about playing it safe. Sometimes, I find the strength and courage to express what it is that I need, and want. I drop everything and go when an opportunity to really live appears. As often as I can, I tell the truth about how I am doing. If you were to ask me right now, this would be my answer: I’m struggling. And while “struggling” is a word loaded with negativity, it also means action. As my bracelet says, I’m fighting the fuck back.
Part of fighting back, right now, consists of not letting my words from a week and a half ago remain in draft form any longer. They are blue, serious, and heavy. Nonetheless, about an hour before the end of the anniversary of Dara's death, I will click "Save & Publish." Because I can and because I must.