Losing Joy

When joy is at the bottom of the canyon with you lying next to it.

I have been tired this week. Unexplainably blanketed by fatigue. I don’t know why. But this story has been living and growing inside of me, and I wonder if its so heavy that, like ice on tree limbs, its weight is keeping me near the ground. So, take that as your self care warning for this read. It’s not light, but it may release something for you too.

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I started my career as a genetic counselor.

It’s nearly impossible to define that term now and encompass all that someone with that training can do, but at the time, it largely meant someone with a master’s degree who had specialized training in medical genetics. In my case, I worked with couples who were trying to get pregnant or who were already pregnant and had an abnormal test result, a family history of a genetic condition, or a concerning ultrasound finding. My job was to be their information giver, decision facilitator, and, in as much as they needed or wanted it, their emotional support.

I had been doing this job for about 6 years, which is important only in that my 20-something year old self thought that meant I was “seasoned”, when I saw a young couple who reminded me of myself. The parallels were uncanny and unsettling. They were referred for an abnormal blood test. We talked through their options before their ultrasound, but they were unsure if they wanted to pursue additional testing. They repeatedly told me that even if there was something wrong, they would not consider termination. Unfortunately, their ultrasound revealed a large cystic hygroma, an abnormality of the lymphatic system causing large, fluid-filled spaces behind the baby’s neck. This finding is often associated with chromosomal conditions, so the couple elected to do a diagnostic test to confirm. The baby had Turner syndrome, and while the diagnosis itself is not fatal, the prognosis was incredibly poor.

The couple was devastated, and frankly, so was I. They were such delightful people, the epitome of glowing. And their visit to us systematically and medically dismantled their joy.

I leaned in to this couple, calling them frequently throughout the pregnancy to check on their mental state, giving them my personal cell phone number to reach out at any hour. They intellectually understood the stats, but as time went on, hope won out and they told me they “Wanted to give their daughter every chance at survival.”

The husband called me on December 23rd. I was in the car driving home to spend the holidays with my family. His voice broke when I picked up the phone. It took several minutes for me to even understand who was calling.

“She’s been admitted,” he said. “She’s in labor.”

“She” was my patient, and she was only 28 weeks along.

The cystic hygroma had progressed, and now there were large cystic-like structures filled with fluid almost double the size of the baby herself. The delivery was a horror film, audible pops emanating throughout L&D as the cysts exploded on the way out of the birth canal.

He called me back, this time sobbing. “She didn’t make it.”

This time “she” was his daughter.

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Part of my role as a genetic counselor was to supervise students in training. The entire second year of graduate school is dedicated to on-the-job training, meaning you get to fuck up in front of supervisors who can save you and the patient so your failures can be processed and so the hospital can tolerate the liability.

I had a newbie with me on her first day of prenatal rotations. She was a smart one, eager to jump in and tackle her first real patient. I always adjust my supervision to meet the student where they’re at. Some are just ready for more faster, and she was one of those, so I encouraged her to take the family history for one of our first patients of the day. Turns out, this time the fuck up was mine. This patient was referred to us for a history of alcohol exposure during the pregnancy, but hidden in the records that I should have read in detail before meeting the patient was this note “FOB committed suicide.” FOB for “father of the baby.”

My eager beaver started out with a rockstar opener “Tell me about the father of the baby.” The patient crumpled, slack faced, tears rolling.

“He died.”

The most generous part of my job was having the time to give a patient. I was not bound to a reimbursement routine that demanded an 8-min visit, so I stepped in and gave the grief the space it was due. Eventually, our patient gathered herself and my student, bravery shaken but not gone, proceeded to take the family history.

The patient moved on to ultrasound. About 20 minutes later, I heard it. An animalistic keening. I started running down the hall, certain someone had been hurt, until I came to a stop in front of an ultrasound room. The wailing continued from under the door. It was my patient’s room. There was no heartbeat. Her baby, her last connection to her partner, was also gone.

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Up until May 26th, 2021, I didn’t know guttural loss like these. My experience of losing joy had always been slower, more gradual, with time to prepare the heart and allow the mind to take over. My mother’s death was like that, a steady slide towards grief that made it feel bearable even while it took over my being.

I was on my way to a dentist appointment, running 2-3 minutes late, as usual, but certain I could pick up the time with some…errr…tactical driving. My phone rang. Number I didn’t recognize. Let it go. The phone rang again. Same number. A chill ran down my spine. I clicked “Accept”.

“Ma’am, do you know a Patrick Greenwood?”

“Yes, he’s my husband, why?”

The firefighter’s words ran together in one long litany as I felt my insides roll and my reptilian brain take over. All I heard was “motorcycle accident”.

“Is he dead?” I interrupted the caller.

Stuttering…”No, no ma’am. He’s hurt, but he’s alive.”

“Then stop talking and tell me where he’s at. What hospital?”

I’m the wife of a Special Forces solider. Only death is a non-negotiable state. Everything else can be willed to better. Besides, those fuckers just won’t die. I needed information, not platitudes.

My tactical driving became near NASCAR level as I careened in to the valet line at the ED. I don’t even remember giving the guy my keys which caused immense confusion 8 hours later when I couldn’t find my keys or my car.

This was still COVID times, so despite the urgency, I paused to put my mask on before flying in to the waiting room. As soon as I gave my name, I was ushered to see the social worker (bad sign) who assured me I would be able to go back to my husband “shortly.” Thirty minutes later, a tiny female doctor appeared calling my name.

“Yes, yes, that’s me!” I almost shouted.

We wound our way back through the ED, activity on all sides while she explained to me that my husband had sustained “a bit of facial trauma.” That is a direct quote.

When we finally got back to his bay, I peeked in. He was strapped to a stretcher, quiet, but with 5 people buzzing about him. I scanned the room and saw his helmet on the counter, cracked vertically across his mouth guard and covered in blood. His clothes were crammed in to a bag on the floor and you could see the blood splatter on the inside of the plastic. I slowly crept to his side and looked down.

I whirled around and shot back at the tiny doctor “A BIT of facial trauma?!? A BIT!” I glared daggers at her as my abject fear turned to anger and then to stone. Survival stepped in, and I became in that instant who I knew he needed me to be. Who we needed me to be.

I started cracking jokes, bad ones, but he responded. At one point he sputtered out “Babe, I think I broke my jaw,” and I quipped back “Oh babe, you broke way more than your jaw.” Every bone in his face, to be exact, except one, his left mandible. He also had a a displaced testicle, a broken knee cap, and a myriad of other minor bumps and bruises that attested to the miracle of protective gear. Oh, and his nose flapped in the breeze. Like, the skin and cartilage were literally in pieces under a gently placed piece of gauze already soaked with blood.

When the emergency team was finally convinced/amazed there was no internal bleeding, they brought in the plastic surgeon. An efficient gent with zero bedside manner who proceeded to walk me through all of the breaks in my husband’s face on a monitor 5 feet from his bed. I was doing good until he said “So, we’ll do a hemi-coronal incision and flap down his face.”

I felt little stars blink at the back of my peripheral vision and the world go cockeyed. I held up my hand as my head went between my knees. “I’m gonna need a second.”

It took 12 hours. When I was finally called back, I was only one of two people left in the waiting room. My husband had been put in to a medically-induced coma because he was “a little combative” when he came out of anesthesia. 🙄 It was well past visiting hours, but the ICU staff took pity on me and gave me five minutes alone with him. As I watched his body shiver, wracked with pain so intense it could be felt even while unconscious, I finally let the lost joy roll over me. I knew intuitively this was just the beginning, and while he had not died, a part of him…and us…had. Nothing…absolutely nothing…would ever be the same.

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When joy is lost without prelude or preamble, its like whiplash to the soul. Your heart being thrown around your chest in a series of crashes that leave your insides bruised and battered but still alive in an almost unfair half resolution of what is now without the explanation of how now came to be.

At the end of her graduate career, my student, that student, wrote me a letter telling me that was the single most important day of her career. She needed to be confronted with that level of human suffering, she said, and her responsibility in it to know that it was something she could not do for a living. She became a laboratory counselor, one who did not see patients, but a very good one, and an incredibly self aware one.

When joy is utterly, completely lost, going through it or even bearing witness to it leaves an indelible impression. One honest friend told me months after my husband’s accident how sorry she was that she hadn’t been more physically present for me and my daughter. “Your pain was just too hard to watch.” Sometimes I felt like that inside my own joy vortex, like maybe if I closed my eyes so I couldn’t see what was happening, it might feel a little less horrible or at least I just wouldn’t know what horror would happen next.

My instinct now is to say that the joy returned, slowly, and in small, almost mundane ways, my soul a turtle poking its eyes out after a storm. And while that is true, the after story shouldn’t be told without a long, hard, firm pause in the losing. Because when you are suspended in the losing, when joy is at the bottom of the canyon, not only can you not imagine it rising to meet you again, you don’t even care if it does.

The thing is, joy suffers with you. It’s not meant to lie on the floor of a canyon. And so it will rise.

Two days after my husband’s accident my daughter turned 3. It was Memorial Day weekend, and we had planned a small get together for friends and relatives in town for the weekend and her big day. My husband was adamant that the party continue. I was in no shape for Paw Patrol, but knowing that the year before she lost her grandmother two days after her birthday, I could not imagine clouding another birthday with loss. So, we had cake. And balloons. And presents. And SHE felt joy. I watched it snake its way up from the canyon and in to her little body as she stuffed her face with buttercream. The joy knew better than to try to coax her way in to my survival. Instead she found a willing host, and put joy around me if only to prove it was still possible.

The losing still overwhelms me at times, as I imagine it does my patients, and I’m back in the canyon, joy lying on the floor next to me, separate but there. Maybe that’s all we can ask for in the losing. Just the knowing that joy is there, can still exist, no matter how far outside or beyond us she seems. It’s a lonely place, that canyon. I appreciated the company.