One year ago today I woke up to my four year old climbing into bed with me, crying, with a barking cough and feeling like he was a million degrees, telling me his throat hurt. It took a minute for me to realize I felt the same way. By the next day, the whole household, all five of us, had a fever. I’d begun tracking all our temps twice daily on March 13th, when the schools shut down and the seriousness of this virus started really hitting me. On Sunday the 15th my oldest son had a low fever of 100.4 but felt fine. It went away a day later and I chalked it up to a sinus infection. I think he was probably patient zero at our house but it could have been a fluke. We’ll never know. It seems likely we got it before lockdown began. Once it had begun, we followed the rules very strictly (although I did go grocery shopping once and no one was masking back then).

When he came into my room, with his barking, croupy cough, I knew it was COVID. I just knew. COVID, as far as we knew, was still barely in Pittsburgh (we were wrong). It was new enough that new cases were reported on the news. There was one at the Oakmont Sheetz as I recall shortly after we got sick. I remember telling people I thought we had COVID and their skepticism. “I don’t know anyone with COVID,” they’d say, as though they were the Universe. “Well, it’s a pandemic, so someone has to have it. And a lot of us are going to get it by the time it’s done.” To be sick and face invalidation is difficult. It’s hard enough being sicker than you’ve ever felt while having four sick kids while working from your closet while in total isolation without that exacerbating things.

We were lucky enough to live somewhere with grocery delivery but the stores were often out of things and needed to substitute and that didn’t work with my kids. COVID took our appetite and I had to offer them whatever food they were willing to eat that day, which was usually very something very specific.

Our symptoms lasted a week but by day 7 we were feeling good. They were saying that around day 7 is where you either got better or crashed, requiring hospitalization. We remained fever free for 24 hours and I took us out of isolation (the guidelines back then were basically just 24 hours fever free). The best day, though, the fever came back. The other symptoms too. This happened over and over. Sick a week then feeling 100% better for a couple days and then sick again. A month in is when it got worse. We were feeling worse and worse each day. It felt like the virus was eating us from the inside out. All the kids did was sit around on their iPads. All I did was sit around on my phone. We didn’t go outside. Didn’t play. It was harder and harder to force ourselves to eat and drink. I began having episodes where I almost passed out. I told my 15 year old how to do the sternal rub if I passed out and didn’t wake back up right away. I was delirious a lot of the time but didn’t know it. If you’re in total isolation, who is there to tell you you’re not making sense?

It wasn’t possible to get a test in March of 2020. Beyond the fact I couldn’t leave my four year old with severe COVID diarrhea home with his 15 year old brother (no childcare in isolation), they wouldn’t give me on unless I had fever, cough and shortness of breath or a known contact with someone wit COVID. When we were getting worse in April, I went to an urgent care where I used to work and basically used doctor-to-doctor privilege to get one even thought I didn’t qualify. By then it was too late for the test to have been accurate (maybe if I wasn’t delirious I would have realized this? Maybe we didn’t even know that at that point. Who the hell knows). I tested negative but the doc told me he thought it was a false negative given my symptoms.

GOD HELP YOU IF YOU TELL PEOPLE YOU HAVE COVID AND HAVEN’T HAD A POSITIVE TEST. The art of medicine means little these days. People want a test. Few will truly believe you had COVID without it.

The exhaustion was severe and I had to keep working full time. Some days I would do my phone appointments lying down because I was too tired to hold my arms up. By the end of a workday I was so tired, I didn’t have the cognitive energy to watch a movie. I couldn’t follow the plot line. Sometimes I’d just lie on the couch and stare all evening. The fever and chills came and went and brought an awful malaise with them. My joints hurt (left shoulder in particular), no appetite, nausea, diarrhea, stomach cramps, brain fog, a headache that nothing relieved, trouble balancing, flushing, neuropathic pain, extreme muscle tension, back pain, anxiety, depression, mania, apathy, conjunctivitis, insomnia, sore throats, runny nose, hives, and I developed hypertension. No, really. All of that.

My daughter couldn’t really do any distance learning and I really couldn’t handle everything I was handling and also do all the things I was expected to for my special needs son distance learning. I remember calling my daughter’s teacher crying and telling her to fail if she needed to, because I was doing everything I could just to not have a mental breakdown.

I’d lost my receptionist and I couldn’t exactly hire and train another one from isolation, so I was seeing patients remotely and also answering phones and emails, scheduling patients, sending out registration papers etc.

I was also dealing with my soon-to-be-ex-husband having a mental breakdown of his own and financially supporting him. At one point I had to worry about proving we truly did have a fever and needed to be in isolation to a judge since it was interfering with our ongoing custody battle.

And at one point sewage backed up in our basement. It was all very Job-like.

I’m not one to take these things lying down, though.

No one knew long COVID was a thing, so as our fever dragged on, it was scary. I was talking to all the docs I knew and none of them were seeing a fever like that. I began taking our vitals several times a day and recording it. I logged our symptoms and what we’d done that day, eaten. Anything I could think of to figure it out because we didn’t have time to wait around for someone else to do it. I figured out early on the fever was the key to it. Every other symptom you see in other conditions. But a fever lasting this long? It was unique. The fact it came and went was unique. Th e fact it didn’t respond to Tylenol or NSAIDs was bizarre. The fact it didn’t follow a typical fever pattern (worst at night and better in the morning) didn’t make sense. And there was something else: our fevers were synchronized. I could take 10am vitals and we were all fine. Fifteen minutes later I would start feeling chilled and look at my little guy who was now flushed. I’d check our temps and all five of us now had a fever. When it passed, it passed in all of us. That is not normal.

And then one day, ten weeks in, before I’d been able to figure it out, our symptoms went away. The kids went into a PANDAS flare and I gave them all IVIG. They had severe side effects which leads me to think their immune systems had been thrown really off balance. We went to the ocean for a week. And we seemed to be back to ourselves.

Except we weren’t. Looking back on it now, now that we’re truly doing better, we still had symptoms. My one son was depressed and I assumed it was because life is pretty crappy in lockdown, but once his long COVID was treated, his mood improved right away. I had an incredibly label mood all summer. I remember commenting on it to my friend, saying I was exhausted from actively having to reign myself in from being too high or too low everyday. My youngest had developed idiopathic hives. My oldest and my youngest were having difficulty learning. Their teachers were concerned. Our appetites were still off. I still couldn’t sleep.

On October 5th (also a Sunday. What’s it with Sundays?) our symptoms came back in full force. It was bad enough I took my oldest son and I to get tested to see if we’d been reinfected. We weren’t. But the symptoms wouldn’t go away. This time, I was aware of my cognitive impairment and the exhaustion was harder to deal with. I wasn’t going to let COVID ruin my kids’ lives and I sure as well wasn’t going to let it keep me from working. That was not an option. I’m the breadwinner for four kids. If I don’t work, we’re homeless. So, I decided I was going to figure this out once and for all.

I returned to the fever pattern. By now I’d joined long COVID patient groups online and even a COVID survivor physician group. I found other patients with the same synchronization of symptoms. It appeared in a piece in the New York Times. And two of my patients who I suspected had had COVID in February and now had long COVID also had this synchronization of symptoms. This pattern eventually led me to figuring out that our symptoms were actually mast cell based and I was able to develop a long haul COVID treatment for us that has reduced our symptoms by 90-95%. We still get flares but they’re manageable.

I hope someday we’ll be symptom free but I don’t know if that’s realistic or not. If there’s one thing coronavirus has taught us it’s that we don’t know shit. This little virus shut down the world. It’s killed millions. It’s likely left millions with long COVID too. And we still don’t know how to treat it. Not really.

I was sad today, looking back on it. Those ten weeks were so awful. Its return in October. Not knowing if we’d ever get better. People don’t get how scary it was. Remember March 2020? Remember how scared we all were? We knew nothing about this virus except that it was horrible enough to shut down the entire world. A plague. Like a sci fi movie. My kids don’t have normal immune systems so something as simple as strep or flu can knock them down for years. I couldn’t find any other kids with PANDAS with COVID. It’s a small community. I was talking to every practitioner and parent I could and we were the only ones. We were the guinea pigs. After everything we’d been through and overcome with PANDAS and now this? I was terrified. It was traumatic.

And so, I cried today. But suffering and sickness are inherent to life, so I knew there was no point wallowing. There was a party to set up, after all. We had The 1st Annual Spaar-Chiang-Fleming Corona Roast tonight. We made a corona cake and had balloons and glow in the dark axes and a bubble machine (why not?). And we had a coronavirus shaped piñata that we beat the hell out of (at one point my son was worried I was going to break the baseball bat. Damn, it felt good beating the living hell out of that paper virus). We each wrote down something awful about this past year and then something we wished for this upcoming year. We burnt them to send their ashes up to the fairies and saints. And we burned the piñata. The coronavirus is just a pile of ashes now. Ashes to ashes, dust to dust.

I told my kids I’m proud of how well they’ve handled this awful year of sickness and lockdown. I am. And I told them there really will be better times ahead. One of my kids wish was very simple: to return to school. I don’t know if that will happen this year, but it will happen. As my daughter told me when I was upset the pizza we’d ordered for the party was 2 hours late: it’s okay. It’s not like the cake fell and smashed into the floor. The party of our new life was interrupted last March, but it’s only dreams deferred. The cake is still safe on the counter waiting for us. And it will taste that much more delicious when it’s finally time to eat it.

Spring was never waiting for us, girl
It ran one step ahead
As we followed in the dance
Between the parted pages and were pressed
In love’s hot, fevered iron
Like a striped pair of pants

MacArthur’s Park is melting in the dark
All the sweet, green icing flowing down
Someone left the cake out in the rain
I don’t think that I can take it
‘Cause it took so long to bake it
And I’ll never have that recipe again
Oh no!

I recall the yellow cotton dress
Foaming like a wave
On the ground around your knees
The birds, like tender babies in your hands
And the old men playing checkers by the trees

MacArthur Park is melting in the dark
All the sweet, green icing flowing down
Someone left the cake out in the rain
I don’t think that I can take it
‘Cause it took so long to bake it
And I’ll never have that recipe again
Oh no!

There will be another song for me
For I will sing it
There will be another dream for me
Someone will bring it
I will drink the wine while it is warm
And never let you catch me looking at the sun
And after all the loves of my life
After all the loves of my life
You’ll still be the one

I will take my life into my hands and I will use it
I will win the worship in their eyes and I will lose it
I will have the things that I desire
And my passion flow like rivers through the sky
And after all the loves of my life
Oh, after all the loves of my life
I’ll be thinking of you
And wondering why

MacArthur’s Park is melting in the dark
All the sweet, green icing flowing down
Someone left the cake out in the rain
I don’t think that I can take it
‘Cause it took so long to bake it
And I’ll never have that recipe again
Oh no!

Oh no
No
Oh no!