My journey with long COVID began with oatmeal.
Oatmeal with raisins, blueberries and a touch of honey, to be specific. I was three days into quarantining after being diagnosed with the coronavirus the week before Halloween in 2020. A group of my coworkers and I had caught the virus covering an NFL game in Las Vegas. I was quarantined in my home bedroom and, like so many other folks, trying to find ways to connect with my kids and husband through the bedroom door. My husband had left the oatmeal, the same breakfast he made me each day the entire first week after we became parents for the first time, outside our room.
I knew I was lucky my symptoms didn’t exceed a fever, chills and fatigue, but it was when I started chewing the oatmeal I realized, I can’t taste a thing. I could only feel the texture of the oatmeal against my tongue. It was different from the way a cold hides your taste. It was like eating sawdust. I knew something was really wrong when two days later, my husband, forced to enter the bedroom to retrieve a suit he needed from the closet, screamed out, “What’s that smell???!!!” (Not the kind of question that evokes confidence in the person on the receiving end.)
I shuffled over to the bathroom counter where he was staring at a vase of flowers someone had thoughtfully sent as a get-well gift. “This reeks!” he shouted.
My face turned red. I couldn’t smell a thing.
“This reeks!” he shouted. My face turned red. I couldn’t smell a thing.
The flowers were sitting in water that needed to be changed, although it wasn’t cloudy. They looked beautiful and smelled fine to me. That’s when I realized how blank my canvas of familiar scents actually was. I was a week in at that point, feeling physically better except for the heavy fatigue, but I wasn’t worried. I was confident, like so many others, I would get my smell back sometime within a few weeks, or months at the latest.
That was almost exactly two years ago. I’m still waiting.
It took me a long time to share my journey with long COVID because I feel guilty. There are so many people who died or have had horribly debilitating experiences. I was worried that talking about not being able to taste ice cream or literally smell the roses would seem petty. But I’ve since learned that there are many people out there who may be dealing with the same thing, and I hope sharing details of my experience and what I’m doing may be useful.
After several months of still not being able to smell or taste, I went, on my doctor’s recommendation, to see an ear, nose and throat specialist (ENT). Dr. Paul Neubauer, M.D., listened as I explained why I was there and ran tests to make sure there was nothing else at work that could lead to the same condition. A few things in that initial visit stood out to me.
For one, I learned why, when I couldn’t taste the flavor of a food, I could detect saltiness or sweetness. As he explained it, anyone could throw their taste buds down a hallway and they are so strong they would never stop working. The problem was in my olfactory system. COVID severed the nerve coverings. When mine regenerated, rather than connecting directly to each other, they were slightly askew (think fingers interlocking rather than touching tip to tip). That altered my sense of smell. I can tell when a new smell is present, but it doesn’t smell like I remembered. Great news if I’m in a stinky bathroom. However, the typically fresh scent of laundry detergent and my husband’s cologne now makes me want to gag. Some incidents are slightly funny, like the former, but as Dr. Neubauer pointed out, others can be very serious. Gasoline and burning wood for a fire don’t register as they once did, for example.
I can tell when a new smell is present, but it doesn’t smell like I remembered. Great news if I’m in a stinky bathroom. However, the typically fresh scent of laundry detergent and my husband’s cologne now makes me want to gag.
Parenting and life at home have been impacted in small ways. I can clean up vomit or a not-so-pleasant bathroom situation without hesitation. It does give me pause on occasion when someone says “What’s that smell?” — an anxious reminder of the flowers, perhaps, but also because I don’t want to be that person unaware of what’s going on around them. This happened when I hopped in my car to drive my kids to school this week and my 8-year-old asked, “Mom, why does your car smell like Indian food?” I was relieved because Indian food is one of our favorites but still, I couldn’t smell anything. And also, I can assure you I wasn’t eating that in my car.
The other thing Dr. Neubauer opened my eyes to was just how important our sense of smell is. It’s nostalgia. Most moments of happiness and memories can be tied to a smell. And therefore, the sense of smell plays a larger role in our mental health than we might think. He encouraged me early on to find foods I currently enjoy the taste of because he said depression among COVID long-haulers is a valid concern.
He put me on a program to smell six different oils twice a day for 20 seconds each. Rose, eucalyptus, lemon, clove bud, sweet orange and peppermint. My directive was to “sniff these while in a quiet place and just think of each scent. Think about how it ‘should’ smell.” The activity certainly hasn’t hurt, but two years later, the eucalyptus scent I once loved still isn’t pleasant at all.
My ENT also recommended I try acupuncture. I’ve been seeing my acupuncturist, Iris Netzer-Greenfield at NOA Health and Acupuncture, for almost a year now. The first time I saw her, after she put in the needles and left the room for me to relax a bit, the hot tears came out of nowhere. If you’ve never done acupuncture, you may not know you aren’t supposed to move once the needles are inserted, so that was a quandary. The tears were streaming down the side of my face and I desperately needed to blow my nose. It left me thinking this wave of emotion feels so strong it must happen to everyone else who gets acupuncture. In that moment, I chalked it up to a literal release of tension, sadness, pressure of expectations and overall gratitude for the time I had had with my family during this horrific pandemic.
Iris is magical. She didn’t say a word about my face upon her return, but she laid out a plan.
She is hopeful that by working together once a week, I’ll get at least 20% of my smell and taste back. The thinking behind this eastern medicine practice is by pinpointing certain pathways, it will make everything flow better. In other words, jump-starting my system and getting the “train back on the track” toward the destination of healing. She is focusing on the pathway that is connected to my lung because, in eastern medicine, that is the organ linked to the nose.
I can report I do have twinges of scents returning. I can taste and smell mint in a recognizable way. A week ago, I thought someone was burning the pumpkin candle in our kitchen when I was out of the room. When I returned to the kitchen, I saw that I was right and that made me smile.
Candles on a birthday cake, the fresh cut of a football field, my kids’ hair after a bubble bath. Even my husband’s favorite cologne. I’m hopeful the ability to smell these things will come back. In the meantime, acupuncture, lots of nose therapy and answering the question “what’s that smell?” with a bit of humor rather than horror is all right with me.