After being diagnosed with glioblastoma, Dar became extremely sensitive to light.
The ringing in one ear had persisted for months. Dar was 56 years old, and a newly retired career firefighter. Of German descent, and having grown up in rural Iowa, he was steady and reserved — even shy — but he could storm with full confidence into a house ablaze, and his co-workers found him to be a calm presence in any emergency or crisis. He was good at his job and loved it, and never once counted the cost it could exact on his health.
Characteristically, he downplayed this seemingly innocuous symptom. I took his cue and didn’t include it on my list of things to worry about, a natural sorting hat when you’ve been married 35 years, and you’ve mutually seen a share of medical travails; a ringing ear was surely an easily explained, treatable … annoyance.
But then we attended my nephew’s play, which ended with enthusiastic applause from the audience. Dar winced in pain and covered his ear, describing the sensation as having his eardrum clapped, hard, repeatedly. “Yeah, I should probably see a doctor,” he admitted.
I made an appointment for the coming week. He’d see an ENT who we were certain would prescribe a medication or maneuver that would cure the ringing.
Meanwhile, my beloved father died unexpectedly. While in the throes of shock and grief, Dar kept his appointment at the ENT. Trying not to burden me, he quietly ducked out to get the prescribed MRI, then returned to help me with my father’s funeral arrangements.
On May 8, 2018, we buried my dad and were driving to a restaurant to join my siblings for dinner when the phone rang. It was a nurse from the ENT office, who haltingly told us that the MRI showed two brain tumors, and Dar would need to see a neurologist, preferably at Mayo, and as soon as possible.
Instant reeling. In the restaurant parking lot with hands shaking, I googled brain tumors. Treatment. Symptoms. Mortality rate. Reading aloud in disbelief…how could a symptom as trivial as a ringing ear act as the harbinger for something fatal?
We looked for consolation in the fact that Dar hadn’t had a seizure, and was physically fit and strong, so maybe his brain tumors were less serious? Conquerable?
But two weeks later, as we waited for surgery at Mayo, Dar had his first grand mal seizure. And a few days later, the biopsy determined that he had grade 4 glioblastoma, a diagnosis that pulverized to ash any sense of consolation we had held. Our family clung to each other, trying to process the devastation.
The next months involved chemo, radiation and living in the town of Rochester, Minnesota during the week, where we went for walks every day and tried to carve out tiny moments of normalcy in a city that always felt like it’s collectively holding its breath. Against better judgment, we adopted a puppy, and she became our constant companion. We named her Honey, in honor of our years of beekeeping together.
While we couldn’t wait to leave Rochester for our weekends at home, it was in Rochester where we would later have an experience I will forever hold with the roughest courage and the most tender love.
It was February, and Dar had finally finished his long course of treatment. We were back home, playing with grandkids, seeing friends, training the puppy, and even making plans beyond the day-by-day. Dar had been seizure-free, and he felt sturdier and more himself. After having had his driver’s license suspended for six months due to the seizures, he had recently been granted permission to drive again, and that mattered a lot to him. He wasn’t cured but we were taking up residence in the hazy land of reprieve.
We planned a weekend a few hours away with our daughter and family in Des Moines. On a snowy Feb. 17, 2019, we were on our way to meet them at their Airbnb when Dar, in the middle of the interstate, suddenly slowed the car, then stopped point blank. A seizure had taken hold. I managed to move him to the passenger seat and get behind the wheel in hopes that I could white-knuckle it to a hospital, any hospital, without sliding off the road or causing an accident. My daughter stayed on the phone, guiding me to a hospital exit, and an emergency room for my still-seizing husband. Even in the panic, I knew what this seizure meant, and Dar did too. In anguish, he groaned beside me.
A recurrence. At the hospital, the MRI showed a new defiant tumor, even larger than the original tumors, and accompanying this particular beast were unrelenting seizures triggered by light. Once admitted, I ran to the gift shop and bought him an eye mask. A friend brought the plastic wrap-around sunglasses worn after cataract surgery. Wearing the eye mask and the sunglasses, Dar had darkness, and the seizures settled.
Meanwhile, a major blizzard was on the way, and Dar needed to be transferred from the Des Moines hospital to Mayo in Rochester before it hit. The ambulance that transported Dar drove the three hours at an urgent but not racing speed, with me following behind. The gray clouds stacked one upon another and as we approached Rochester, my windshield and the highway developed an ominous sheen. Still wearing his eye mask and sunglasses, Dar was admitted to Mayo’s neurology oncology floor, and it was then that the blizzard hit with a ferocity.
The nurses quickly learned the extent of Dar’s extreme photosensitivity. The slightest sliver or flash of light created a seizure. A gap between the shut drapes could do it. The light from under the shut bathroom door. The tiny red power light on the TV, which they hastily covered with a piece of duct tape. The staff hung blankets over the windows and posted a sign on the door warning everyone to keep the lights off. The nurses and doctors fumbled and bumped their way in the darkness, talked in low voices, and ran their tests in the room rather than wheeling him anywhere. All while working with a skeleton crew due to the heavy snow, high winds and the bitterest cold.
We had hours and hours alone each day. I remained huddled against him in his bed. No TV, no music, just the cold wind howling outside our disorienting cocoon. In a shower room down the hall, I sobbed at 3 a.m. A friend sent a gift basket that included honey-scented lotion. The smell of that lotion buckled my knees in memory of our spring beekeeping and in agony over the coming loss.
We spent a week encased like that, holding hands and talking, but between the darkness and his sleep mask, without eye contact. We recounted for each other 35 years of memories as they arose, like tiny bursts of flame and warmth. Every camping trip we took with our kids. The births of our grandbabies. Our youngest son’s open-heart surgery. Stories of our growing up years we both already knew but wanted to hear again. The qualities that first attracted us to each other, and the slow, steady bedrock of love that built, layer by layer, through every celebration, every wrenching moment, and the weathering of life’s heartbreaks. We talked it all through, in a setting that was hushed and narrowed to only the most essential, but also permeated with the strangest, most lingering sense that God was somehow a fellow sojourner in this place.
We laughed over the dumb stuff we did — the near misses — the times best summarized by “what were we thinking?” We let tears slide when we talked about regrets and of things undone. We revisited our favorite songs, and recited snippets of lyrics that had carried us over years. We marveled at the unique personalities and wirings of our grown kids, and traced their winding steps from birth to adulthood.
A heavy wordlessness descended however, as we were pierced by knowing that Dar would not be there for the milestones of our grandchildren. I was losing my partner in it all, and under Death’s arm, I was also losing our satchel of shared dreams for the future. We wept together for a long time, acknowledging what our kids and grandchildren were about to lose as well.
There was no distraction in our conversations, and nothing we needed to do except exactly what we were doing. Apologies would bubble up, along with the sweetest and most complete forgiveness. And when he dozed off, I curled into him, unable to sleep due to my ever-present internal tremor of awareness that perhaps this moment in time was the rarest gift two human beings could ever share. Full vulnerability, full acceptance, full knowing and being known. Nothing held in, with every last bit of it belonging. Darkness enshrouded in light. Midnight, with the brightest moon.
One night, he told me he didn’t want me to be alone and that I should marry again. Those words he choked out, and I tried to quell my reflexive protest, and to listen instead. We were approaching a defined split in the road, and he hurt, really hurt, imagining me walking on alone.
We returned home after the medications finally began to calm the seizures, but Dar steadily declined week by week. He repeatedly told our children and their spouses, our grandchildren, his fellow firefighters and everyone who visited him that he loved them and was proud of them — an unabashed effusiveness suddenly and mysteriously unlocked within him after his experience in the darkness. It rendered others touched and speechless in its sincerity.
And on July 12, 2018, Dar roused awake and asked for a sip of coffee. I held the cup to his lips. He swallowed once, rested his head back on the pillow, smiled weakly and said, “Thanks, Doll” (a term of affection he had never used before). Then he slipped into a coma, and later that evening, he took his last breath.
Author Barbara Brown Taylor, in her magnificent book “Learning to Walk in the Dark” writes, “I have learned things in the dark that I could never have learned in the light, things that have saved my life over and over again, so that there is really only one logical conclusion. I need darkness as much as I need light.”
Cancer may have taken my husband’s life, but it was the darkness, as Brown continues, that helped me to “see the celestial brightness that has nothing to do with sight.”
I walk in the early morning darkness, and it’s there I feel his spirit burn like a million suns.
This post was written and submitted by a CURE reader. The article reflects the views the author and not of CURE®. This is also not supposed to be intended as medical advice.
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