IF ONLY

Healthcare is the culture I was nurtured in and the waters I swim in. My mother was a remarkably cheerful caregiver the decade she nursed my grandmother, and then my father, after strokes left them invalids. During the years she rolled their wheelchairs under our macadamia nut tree while she deadheaded the roses, or out to Bob’s Big Boy for lunch, because that was always a treat, she never complained. Still, I remember her once wondering aloud, “If only we had clot busters back then.” Yes, if only! She could say that because we have clot busters now. The medical solutions we most need are often just out of reach. Time moves on, and sometimes it leaves us behind.

In June of 1976, I started my first nursing job, working four ten-hour night shifts in UCLA's pediatric department. My favorite graduation gift was a nurses’ watch with fluorescent dials. When I needed to calculate and set the flow rate of intravenous infusions, I’d hold my watch next to the transparent cylinder in the IV tubing so I could watch the second-hand and count the drip, drip, drip of fluids per minute while I fine-tuned the roller-clamp dial. I was obsessed with getting this right. Of course, my job required a lot more than regulating IVs. Nurses should have caring hands and healing hearts as well as a watch that shines in the night.

Lighting was subdued on the graveyard shift, an unfortunate term for those working nights, but the medication room was always lit up like a nightmare. I spent a lot of time in that chilly cubicle, pouring out magic elixirs and popping pills into little paper cups. RN may not stand for refreshments and narcotics, but I dispensed both liberally for comfort and pain. The hospital was a sterile place, but there was another smell I remember too, clean and pungent all at once with Pine-Sol and traces of pee that drifted through the halls from the Toddler’s Ward. The spaces we inhabit, if only for a time, become unchanging places within us, complete in detail.

My apartment was across from an elementary school, and even with blackout curtains and earplugs, sleeping through recess, physical education, and after-school sports was interrupted at best. I tried, but I could never nap the day before the first shift of my three or four-night schedule, so I usually went without sleep for about 30 hours twice a week and was cranky. The kids on the playground tormented me and the kids in the pediatric ward were tormented by modern medicine, all for the right reasons, and sometimes experimental ones, and often for the sake of convenience. Parents weren’t allowed to spend the night with their sick kids in the 1970’s which was a torture for everyone involved.

This were no run-of-the-mill admissions for pneumonia or sports injuries at UCLA. The pediatric department was a revolving door of medical care for teens with cystic fibrosis, those in sickle cell crisis, and those stricken with various cancers. A lot of these adolescents were in the hospital for a tune-up, something to keep them going until their fragile, unreliable bodies broke down again, and they were readmitted. They all seemed so young, just one step beyond childhood, and I was just one step beyond them. At their age, I agonized about whether my body parts were too small or too big, whether I had the right kind of washed out, worn out, torn up Levi's, and a lipstick called Fire and Ice. I was preoccupied with what my friends, teachers, and parents really thought about me, and in that order. But the youths I cared for were facing the ultimate question of whether there would be "a them" to think about at all.

What did I learn during those six months when I was tired, clueless, sometimes not far from useless, and ill-prepared for the kind of misery impervious to refreshments and narcotics? Eventually, I was transferred off nights. I woke up and grew up and gained some perspective. At any particular time, we are faced with the medical challenges of that particular time. One hundred years ago, it was infectious diseases, and if we go down into the dark, backward abyss of time to the Enlightenment, that shining season of emerging reason and science, half the babies born didn’t reach adulthood. Then, as if by magic, because vitamins, minerals, bacteria, and viruses are invisible, more and better food, flushing toilets, antibiotics, and vaccinations led to our ever-increasing life expectancy.

Now that we’re living longer, newly identified maladies are bubbling to the surface. Sickle cell disease (SCD) was first described just 60 years before we treated it at UCLA with oxygen and the infusions of fluids, blood, and antibiotics I was obsessed about getting right. A mutation causes the red blood cells of those with SCD to be rigid and shaped like a “C” or a sickle. These abnormal blood cells get stuck in small vessels, causing pain, infections, and tissue damage. Now, 50 years later, there is a potential cure for SCD, which aims to fix faulty genes and restore normal function to the cells. CRISPR, the newly invented gene editing tool, is a “Gene Genie” that allows scientists to modify DNA. Can you hear what those adolescent who suffered the pain of sickle cell crisis are murmuring under their breath? “If only we had CRISPR when I was a kid.”

The genetic glitches children with cystic fibrosis (CF) inherit, one from both their mother and father, causes their bodies to produce abnormally sticky mucus, which plugs up pathways in their lungs and pancreas, putting them at risk for infections and malnutrition. At UCLA, we made sure these teens got their antibiotics, enzymes, postural drainage, and chest wall oscillation 24/7. If you had cystic fibrosis in the 1970s, getting and staying healthy was a full-time job.

I remember a girl so fragile that her hip bones barely lifted the hospital sheets and so pale that when her cheeks flushed, the pink seemed almost painted in watercolor onto her iridescent white skin. She was sublimely delicate when she died. Watching her parents sobbing in each other’s arms, I came to understand that when you lose a child, you lose a world. It was hard to do this job without feeling the sadness and madness. Now, scientists are investigating an inhaled messenger RNA that may get at the root cause of cystic fibrosis. Can you hear what parents who have lost their children to respiratory failure as a result of CF are whispering?

There is a moment after we inhale when our inflated alveoli exhale oxygen into the surrounding capillaries in our lungs, where it is embraced by swimming red blood cells, which, in turn, carry this life-sustaining O2 to every cell in our body. This is why clogged TINY air sacs in the lungs and rigid red blood cells stuck in MICROSCOPIC vessels are BIG problems. When scientists followed the ever-narrowing pathway of clues into the intricate depths of bodies impacted by these disorders, they discovered the cystic fibrosis gene, which is almost 100 times smaller than the width of a human hair, and the sickle cell anemia gene, which is 33 times smaller than that. Medical care is turning us inside out.

Biology is bossy, maybe even overpowering. But science comes from Scientia, meaning knowledge, and focuses on demonstrable facts. So, in their never-ending pursuit of medical solutions, researchers are focusing on inherited disorders because they can and on neurodegenerative diseases, which are increasing in incidence since we're no longer dying from other things.

And since my husband has had Parkinson's disease (PD) for fifteen years, we’re more than ready to repair his dopamine system. Like so many others, it is in my grief that I find my greatest hope. For years, I nurtured a broken-hearted optimism about dramatic breakthroughs in treatments for Parkinson’s disease. We read books; we consulted specialists. The brain itself has no sense organs, but PD is caused by the death of nerve cells that produce a neurotransmitter contributing to feelings of alertness, motivation, and happiness, in addition to affecting movement, balance, and muscle control. Parkinson's is a whole-body experience producing a profound sense of unease, like staggering off a roller coaster you got on by mistake, dizzy, unbalanced, and discombobulated. The fistful of pills my husband takes daily, the never-ending physical therapy, and deep brain stimulation have all helped…a little. But the holes in our hope widen despite Michael J Fox's enthusiasm, and as the days, months, and years my husband has lived with PD accumulate, we realize a cure is out of reach. So, we squeeze some happiness into our lives because we are not only waiting for a remedy but living day by day.

We will always be playing Whac-A-Mole in medical care, forever sighing and saying, "If only…." about something. Health care strives to extend mortality, promote thinness, and ensure our peace of mind. Will our lives be better through gene manipulation and all the other chemical gizmos doctors pull out of their bags? Take a deep breath. We're about to find out. My nurse's watch with light-up dials is no longer ticking, but time is passing all the same, and this is a very long story. As you can see, it is definitely To Be Continued.

Science doesn’t have a system of morality built into it; it’s just a tool for helping us get what we desire and defend against what we fear. What we want hasn't changed for thousands of years because, as far as I can tell, human nature hasn’t changed either. We want to control the catastrophes that indiscriminately fall into our lives and those we love. But time moves on, and the medical solutions we need most are often just out of reach.

Sharman Ober-Reynolds was born in LA and completed a master’s in fine arts at Arizona State University. She worked as a FNP in autism research and is primary author of The FRIEND Program for Creating Supportive Peer Networks for Students with Social Challenges, including Autism. In 2023, Sharman was the first-place recipient of the Olive Woolley Bert Awards and has published creative non-fiction in bioStories and Adelaide Literary Magazine. Sharman now lives and writes in an old house in Salt Lake City with her family and Cadoodle.