Hands on the banisters…tight, gripping…trying to catch my breath…heart racing. Doubled over.

I try to breathe normally.

Breathe.

Just breathe.

My breath comes back before my heart quiets. I finish the climb. Out of breath at the top. Again.

I stumble and stagger to the bed.

Laying my body down, the room spins. Ripples of nausea. My dachshund jumps on the bed and licks my face. She is worried. I am worried, too. She burrows under the blanket and curls up against my back.

I am still heaving. Trying to breathe.

Finally, it all settles down–my breathing, the nausea, the spinning. I curl and pull my knees into full fetal position. The dachshund nestles even closer, her nose cold against my back. I can sleep. And I do. Thirteen hours a day. Sometimes more. Rarely less.

They call it Long Haulers. They call it Long COVID. They call it Post COVID Conditions.

What I call it cannot be repeated in polite company.

I am exhausted.

Depleted.

I am so very weary of being tired, out of breath, aching, confused and scared.

Three years, six months, and ten days now since that phone call. Too anxious to wait any longer, I called the Health Department as soon as they opened. I have been sick for three days. They had tested me two days earlier.

I gave the woman on the other end of the phone my name. My date of birth. Last four of my social. She seemed surprised. “You’re positive.”

“What do I do now?” I could hear her shrug her shoulders.

“Call your doctor?”

I do. I’ve had the same doctor, Hyla, since 1998. She is very responsive. I can’t get through to her. I am surprised. I am desperate. I have the CORONA-19 Virus. I am trying not to panic.

In late 2020, the news outlets report health care professionals are overwhelmed. I am overwhelmed too and newly diagnosed.

I sleep. I call my doctor’s office. I sleep some more. I have a gruesome headache. The headache has been with me for so long, I name it Frank. It is already powerful – naming won’t hurt. I call some more.

I make a tele-health appointment to try and get Hyla’s attention. Finally, she calls. I ask her how long? I asked her if I will be okay? I askk her a lot of questions. She says, “We don’t know.” She says, “The recommended protocol is Vitamin C, Vitamin D, B12, zinc, magnesium, potassium. Arthritis Strength Tylenol. ICU patients show improvement with Pepcid, of all things.” She said, “Elderberry is showing some promise.”

She tells me what to look for and how I will know if I need to go to the Emergency Room.

“Don’t go if you don’t have to. Please.”

Three years, six months, and ten days now since the diagnosis. Before the vaccine. Before the antivirals. “My doctor said, “We don’t know.” Vitamin D. Vitamin C. The Bs. I take them all.

Three weeks after the diagnosis, I am somewhat better. I work from home, but I nap two or three times a day and sleep all night. I don’t know what is wrong with me. I think depression. But the headache?

I take the vitamins. The elderberry. The Pepcid. I sleep. I still have Frank-the-Headache for weeks and then months.

My doctor says, “We don’t know.”

After 9 months, finally, I am better. I shout ‘Hallelujah!’ on my social media.

This is premature.

A relapse.

“We don’t know,” Hyla says when I ask why it came back and how long it will last.

I am called back to the office in the town where I am employed after working at home for months. I discover I cannot walk. I cannot get from my car to my office. The drive has worn me out. Fixing breakfast, dressing for work and thirty minutes on the road might as well have been six months on the wagon trail. Casting off furniture like ballast. My old life gone like pianos sinking in the mud en route to Oregon.

I begin working at home again.

I am exhausted easily and often. I have a built-in seat in my shower. I could not bathe otherwise. I cannot stand but a few minutes or walk a few steps. My thoughts are cloudy.

I insist my doctor see me in person. Long COVID, I suggest. I have been reading the research buzz. I read abstracts online, mostly from the UK as they are releasing studies before the US.

“We don’t know,” Hyla says.

She says, “Good luck.”

I am not depressed, but I am. I develop anxiety.

Hyla says, “That, too.”

Many of us long-haulers do.

I break out in rashes.

“Yes, people report that.”

My old life is gone.

I enroll in a study out of Johns Hopkins. The questions go on and on and list all the possible permutations of Long COVID. I have kept my taste and smell but have no executive function. No cough to speak of, but the headache…Lord, the headache. Mercy, please. And then, body aches. Stiff joints. Hyla says I seem to be mimicking chronic fatigue syndrome.

“Good luck.”

I go back to work at the office. I feed the meter all day long via a phone app so I can park by the front door.

Three years, six months, and ten days now and they still don’t know much. I quit taking the zinc because I’m told to, but I can’t remember why. My short-term memory is gone. Some days my cognitive function is like swimming in a vat of molasses.

I am determined to reclaim my life. I join a yoga class. I can’t do it. Not even savasana–the one where you sprawl on the floor like a dead corpse.

I drop out.

I have failed beginning yoga. I used to take advanced classes.

Periodically, the symptoms abate. The headache is gone. I announce my recovery. I rejoice. Truly. Rejoice. I have hope again.

I feel almost good when I wake, though I tire easily. I tell myself I am just out of shape. Six to eight weeks of relative calm.

And then I relapse.

Another recovery. Another Hallelujah! Another relapse.

“We still don’t know.”

I am at the beach. My friends drive me to doors. Carry my things. It takes me half an hour to traverse the block to the chair they have set up for me as close to the boardwalk as possible. I discover I cannot stand in the wet sand. Can’t keep my balance when it shifts with the surf. I want to cry, but I laugh instead.

Long COVID is not going to beat me.

Three years, six months, and ten days. The WHO reports that 6,938,353 people have died from the coronavirus COVID-19 outbreak as of May 31, 2023.

For the 760 million people with COVID who didn’t die, 20% or more had or have Long COVID. Some for weeks, some for months.

Me? Three years, six months, and ten days.

My case is considered mild. I am one of the lucky ones. I did not die. I have not been declared disabled. I have not had to quit my job. I do not have to use a wheelchair or an oxygen tank. I have been fortunate. The initial illness itself, too, was mild. No hospital.

The doctor is as weary of saying “we don’t know” as I am of hearing it.

Elderberry. Vitamin C. Vitamin D. B12.

Lucky.

They begin to know some things. I am given Lorazepam for the anxiety and Modafinil for executive function. I have a rescue inhaler. They help but are not enough. I am not well, though I no longer have the headache. I begin to consider my future.

What if this is as good as it gets? This. Right now. Living this way.

It’s time to go to bed. I must climb the stairs to get there. It will take all the strength I have left. I will lie there for a few minutes, gasping, scared before I can breathe. Scared after. Still and all, I will settle into sleep to do it all again tomorrow.

The dachshund burrows next to me.

Three years, six months, and eleven days.

A long long-haul.

NOTE: This was written some time ago. The doctors have me on a drug cocktail that works for me. I feel infinitely better.