“She had appeared to violate the rule. She was warned. She was given an explanation. Nevertheless, she persisted.” – Senator Mitch McConnell regarding Senator Elizabeth Warren
“Say I’m written on your soul, then write me on your skin.”- The 77’s
“Let’s get our first tattoos when you make it to five year survival date,” I said to
Naomi on one of our 2016 calls when she’d almost survived three years. She’s survived through a plan for assisted suicide (can one have assisted suicidal tendencies?) and she’d had two NED (no evidence of disease) scans, still she wasn’t sure she’d make it to five years. I was optimistic.
Nevertheless I had the tattoo itch, so I proceeded on my 40th birthday to have a pilgrim tattoo (of a sorts) inked on my left wrist, a sizable Jerusalem cross. On Thanksgiving a few weeks later, she showed me her three-year tat. A black bird, not a crow but a sparrow, for her Julia Sparrow and a light bulb for her Edison with a banner beneath.
“We can still get five year tats,” I said. Sure, she replied. But she still didn’t think she’d make it.
What we talked about that year was health. I’d experienced months of oppressive doom that culminated with a feeling that I was about to die. I’d poop out at mile eight, then six, then four, then two on my daily dozen mile runs. I’d walk a mile, run a half, walk a mile, run a half, until at last I just walked out most miles. My heart felt strong, thudding loudly, but my legs would shake. I felt weak. I was sure I was drinking too much or that I wasn’t taking in enough protein. I should disclose that I’ve had an undetermined autoimmune disorder for over fifteen years. I can’t eat gluten, beans, meat, dairy, nuts, corn, soy or many fruits. You know, veggies mostly, and some egg whites or nutritional yeast. But this was a new, a certainty of death loomed. While attempting to exercise on a stationary bike, my OB-GYN called to say that a recent blood test indicated my hemoglobin was at 7.7 and he was prescribing iron pills. I knew this was bad because when Naomi was diagnosed, the alarm bell was a hemoglobin count at 7.0. Crying, I called Naomi. She was 28, living in Jackson, Michigan, it was 2013, and the economy, like her health, was still a hot mess when that happened.
“Get the best specialist you can get,” Naomi said.
Naomi, who had avoided doctors (no money, no insurance, the kind of upbringing that said if you can still move, you are fine without meds), told me to get the special specialist, the expert to the experts. By 2016 she lived near Johns Hopkins. By then, she visited the ER weekly for a saline drip to rehydrate what her (failed) reconstructed rectum leaked in fluids. By then, she’d begged for a (second) permanent ostomy and had spent too much time on the phone, pleading for the chemo regime that would allow her to stay awake and energetic enough to be a mom for her two kids. By then, she knew she had to fight for more than than some doctors knew was available. By then, she knew that doctors were all doing their best but the ones who worked all the time in one specialty knew the most.
By November 4th 2017, Naomi’s life ended on a date a few months shy of a four year survival period, even with Johns Hopkins-top-o-their-field specialists. She tried all the innovative chemo options suitable for her. For a long nine months, they seemed to work. Until she got a secondary, soft-tissue cancer on her tongue, in her throat and in her lymph nodes. It grew fast on her. It hung jewels on her neck. It was a fat lady who took her ability to sing and owned the last note.
She died in her own home. She breathed her last with almost all her closest kin in the room. We stayed with her constantly. She stayed with us in the living room, sleeping on and off through most of the second season of Stranger Things. She slept while we reviewed all the pictures on her phone. We sang all her favorite songs to her. We laughed, prayed, shared memories, and cried a lot. It felt like “the best kind of death.” But when a mother is shy of her 33rd birthday, with a widow and two small children, and a huge set of parents, siblings, in-laws, nieces and nephews, surviving grandparents and close friends, there is no “best kind of death.” There is trauma.
There is anxiety, haunt, hurt, confusion, anger, void, blankness.
There was a home burial. There was silence. There was her beautiful face, her funny socks, her favorite clothes. Her children pounding in the nails on her wooden coffin. Flowers gathered. Flowers laid.
The days after her death before her burial, five of the siblings, myself included, decided to tattoo her on us.
Everyone of us knew she wanted a few things in this order:
- A longer life to raise her kids and love her husband.
- Less pain.
- More family and friends.
- More time.
- To outlive the current president.
- Fairness, justice, equity for all.
- Medicare for all. Homes for lonely teenagers.
- To make a difference.
- Less pain.
Sometimes the pain almost destroyed her. Nevertheless, she persisted. Two years earlier, when Brittany Maynard ended her life early, Naomi flirted with what dignity in death looked like. Her daughter, then in kindergarten taught her a lesson none of us could have, so nevertheless she persisted. She took more pain meds and sought all the experts and when the time came that they could do nothing more, she rested. She put rice bags around her tumor-laden neck. She shuffled between rooms main room and listened to us prattle though the light and sound hurt. Nevertheless she persisted. She’d seen this kind of death and had decided that she would persist.
Having been warned, she persisted. She insisted six days before she died, on going to our sister’s condo. The whole family came as an entourage. It rained. It took forty-five minutes to get her into the living room. She sat with us for a couple of hours. It took forever to get her back. It kept raining. Nevertheless.
She laid on the couch so she could watch TV with us and hear us chat. She insisted on upstairs, downstairs, until she couldn’t walk from dehydration and malnutrition. Nevertheless, she lifted her eyelids as we talked to her. All the way to the last six or seven hours, she willed some consciousness.
So when we entered the tattoo parlor, all of us ended with some version of her persisting. Nevertheless. Sparrows in flight. Storied family teacups. (See poem here) Emblems of what she left to assuage our anxiety and void.
Her death and burial have left me chronically anxious, measuring every word and move and motive I made. I went to the therapist to see what she could tell me. She said, get meds. I said, “Naomi told me to get the expert.” Who is that? She couldn’t say. She said my GP or my GYN, not experts in anxiety or depression by any measure. Therefore I haven’t gone for meds. I’ve had too many times when I needed a specialist. Before I put scripts into my auto-immune endangered body, into my anxious soul, I need an expert.
What do we do when have the medical advice we need and not the referral or insurance to handle it? By the way, my CIGNA refused coverage for my therapy this week.
But I’ll keep seeing my therapist. I’ll keep up my runs and healthy diet and trying not to drink too much, to avoid sugar, to use the sacraments of confession and the Eucharist and to be a good mom, a good wife. I’ll seek experts. I’ll persist, nevertheless. Grief will change you, I’ve been warned. So make good spiritual, physical and emotional habits while you can. Your time may not have come, but it will. And if you want to keep life threatening despair “unavailable,” do all you can to immunize yourself early.