It was Easter.

It was Christmas.

It was Eastmas.

It was Christer.

I had last visited my parents, the infamous Dicksta and Judester, around Thanksgiving. My boyfriend Ben and I made the trip and I stayed behind so I could hang with them. I’d just take their Buick SUV back to Madison since the Dicksta isn’t driving these days and they have a spare vehicle. No big deal.

The Buick and I made our way to Madison, fully intending to see the parents again soon. Probably for Christmas.

But instead of spending Christmas with them, I spent it like so many other days I’ve spent over the past nearly four years.

In pain.

When I let them know I wouldn’t be able to make it, it wasn’t really a surprise to any of us. We’d been through this before. And we would be through this again.

One of the saddest parts about missing Christmas with them was how I wasn’t that disappointed. I’d gotten so used to missing things that it just wasn’t a big deal.

But hey. I’d certainly be there soon, right? We’d take advantage of after-Christmas sales and have Christmas in January. Annnnnyone can have Christmas on Christmas. But January makes it a bit more special.

The Buick’s license plate sticker expired at the end of January. Judester offered to mail the renewal sticker to me.

Nahhhhhh. Why mail it when I’d be coming any day now? It would arrive in the mail while I was in Holmen and then I’D have to mail it back to her when I got back to Madison because it would so clearly arrive in my mailbox while I was gone.

Keep it, Mom. I’ll be there soon.

Then January came and went. I went nowhere.

February FOR SURE I’d be there. If I got pulled over by a cop, I’d  explain the situation. It wouldn’t be a problem since it would only be a week or two into February. Technically, the plates had been renewed. I just didn’t have the little sticker.

February came and went. I went nowhere.

And then March. Ben traveled, first to Seattle for a book thing, then to Portland to visit his brother and family. That was the PERFECT time to go to Holmen.

Ben went and came back to Madison and it was almost April. I went nowhere.

He was back for a week and then took off for a writer’s retreat in California. Now that CERTAINLY would be a good time to make the trip.

Ben left. I stayed in Madison.

He was getting back the day after Easter. I wouldn’t want to be gone as soon as he was back in Madison. What sense would that make?

Then it was Easter. I was determined. I got up early, fighting the urge to make my mom her favorite chocolate cake and resisting the impulse for a quick run to Target to get the Dicksta plain pastel M&M’s. The kind they have for Easter. Oh, I should probably return some overdue library books since I have plenty of time.

These are the kinds of things that have always made me late. The impulse was so strong that I proudly wrote on a Post-it, “Things I’m not doing so I can save time.”

What a great idea. Why hadn’t I thought of that before?

I’d leave Easter morning between 9:30 and 10 a.m., a goal that would have been impossible if I made a homemade cake, created an Easter basket for my dad and returned library books.

I wasn’t feeling great on Sunday morning but since I got up early, that would allow me plenty of time. I could actually look forward to the drive, right?

I started feeling worse and worse, wondering how much stress was playing a part. I called Ben. If I wasn’t at my parents by noon, that’d be ok, right? No big deal? I wasn’t really going to eat so even if I didn’t get there until 2 p.m., it was fine, right? Right.

It was after 5 p.m. when I pulled into Prairie Creek Farm. I was cakeless, M&M-less, and those library books were still overdue.

By the time I arrived, everyone who had come for Easter had left. I was sad. And relieved in a way. I have been so late for so many occasions because of chocolate cakes, etc. This time was different. It wasn’t my usual time blindness that delayed me. It was retching in the bathroom.

Now, here I was. Finally seeing my parents after nearly six months. That’s a long time. Especially when your parents are 80 years old.

I quickly recalibrated, something being so sick for so long forces you to do over and over and over and over.

I was home. And it was Easter. And it was Christmas. And it was Eastmas. And it was Christer. Time for presents!

You don’t have to laugh but it helps.

Such is the story of people who are chronically ill.

We’re your friends, your neighbors, your co-workers, your family, and maybe we’re you.

I joined the club nearly four years ago. It started with running being more strenuous but doable. And then it got harder and harder and hurt more and more. I had trouble breathing. I had “Michelin man” legs that felt like they could explode from pressure. My hands throbbed.

It wasn’t just when I was running.

My hands would go numb, my feet would fall asleep. The fatigue was endless.

Everything that had been easy before was becoming difficult. And then painful. And then damn near debilitating.

I went from having a primary care physician that I had never met because I’d been so healthy to getting to know Dr. Shrugs-a-Lot well. I went through a battery of tests, MRIs, CAT scans, and the result was always the same.

They couldn’t find anything wrong. We all get slower as we get older. It’s stress. It’s menopause. It’s probably a bug working its way through my system.

Nevertheless, she/I persisted because she/I knew her body well and had only gotten faster as she’d gotten older because by midlife she was too tired to party like the old days and knew something wasn’t right.

I was diagnosed with chronic fatigue. And then fibromyalgia. And then in November after meeting a new doctor who listened and carefully reviewed my history, Small Intestinal Bacterial Overgrowth (SIBO).

Some days, I still think they’re missing something. Other days, I begrudgingly accept it . 

I’m no longer the person who has run every day for years. I’m no longer the person who takes photos of toilets on those runs.

I’m no longer the person with a full social calendar. I’m no longer the person who not only texts people back right away, I’m no longer the person who interacts with people much at all.

I’m no longer the person who I want to be. So I’ve ceased being in the world.

It hurts to feel forgotten about. It hurts when people care and reach out.

It hurts to know I’ve not been there for friends to celebrate good times or to be there for them during hard times.

It hurts when I can tell someone believes me. It hurts when I suspect they don’t.

Did I mention it hurts?

And therein lies the rub.

Pay attention to me. Also, leave me alone.

Is that too much to ask??????

This is the part where I’m supposed to say it’s been a journey. And I guess it has.

But it’s been a journey I haven’t wanted to share. And I have wanted to share.

I realize how privileged I am in so many ways that I didn’t earn. And that so many people are battling so many things. And that the issue of chronic pain and chronic illness, especially from so-called invisible illnesses like my own, isn’t something I gave much thought to before. And how gross to suddenly care about something that has been affecting millions of people for years the moment it affects you. And that my mantra, especially with running, was “Mind over everything.”

And I realize I can be a big ‘ol selfish asshole. And it hurts knowing the world keeps on turning, as it should, whether you feel like being part of the world or not.

Writing has always been my way of trying to make sense of the world and my place in it. It’s just that I don’t want to be this way in the world. Yet here I am.

Writing has also always been my way of trying to feel a bit better. And it’s been my way of trying to make others feel a bit better, whether it’s because of another silly picture of a curbside toilet or some semi-sweet story of wisdom gained from the Dicksta or Judester.

This is your invitation to come along on my journey of being Chronically Käri and figuring out how to be in the world even when it’s not the way you want to be.

I promise, it won’t be all sad. It can’t be. And it isn’t.

We all have our journeys, some planned, others far from anywhere we wanted to be.

Sometimes you need to travel alone, sometimes you need company.

Whatever your pain, whatever you feel your place in the world is, I hope we can keep each other company.

And/or you can laugh at the bittersweet joy of Christmas on Easter. Eastmas. Christer. 

Annnnnnyone can celebrate Christmas on Christmas. But celebrating Christmas on Easter just makes it more special, right?