It’s Been 5 Yrs

January 25, 2026

Five years ago, I woke thinking the shirt I soaked through the night before was an annoyance, not the beginning of a battle that would overtake my body and brain and change my life forever.

I recently streamed New Amsterdam Season 4, Episode 8 and this scene sums up my last five years:

“My brain works at half the speed it used to.

It’s like you’re not you. Everyone sees the same you on the outside but on the inside something’s different, something’s missing. No, it’s worse than missing, something is gone and you don’t recognize yourself.

Everything’s wrong and I’m just…..less.

But you can’t send this new you packing because you’re not who you wish you were. You can’t even make that choice until you find out who you are now.”

It’s been 5 years of Halos

My angels here and on the other side keep showing me the way forward from feeling I am less than who I once was. I would not be “celebrating” my Covid anniversary if it weren’t for you, each and every one of you, especially the girls and Brian. Without you (and Neurofeedback -see last post) I would have quit a long time ago and not given myself a chance to find out who I am now. A note of encouragement, a really good hug, an unexpected monetary gift, a butterfly, rainbow, dime, or song on the radio when I need a reminder I am improving and I am worth fighting for all make me smile and keep me trying to put one foot in front of the other.

It’s been 5 years of Disturbia & Crazy Train

You would think I’d be able to predict life with a chronic illness after this long, but you’d be wrong. Weird shit (sometimes quite literally) pops up all the time. Just last Monday I wasn’t upright. Like at all. I walked 681 steps. All day.

It’s been 5 years of Starting Over

The expanse of cognitive damage never ceases to amaze me. Finding yet another skill I’ve lost and starting over from the basic motor skill continues to humble me. You’ve seen my before & after videos at the gym. They keep coming. This week I tried exercises that showed up on my feed of trainer working with his mom to help her not fall. I had a feeling my feet might not work together but, well, this was a whole new level.

It’s been 5 years of Life Changes

Five years is half a decade and you’d expect a lot to change. And it has. I’ve lost more than I ever imagined was possible from one illness, as have Brian and the girls, and with the losses has come a boatload of grief, tears, anger, confusion, and bewilderment but somehow (with therapy, lots and lots of therapy) I’ve become happy living in the limited space we’re in now. Being present today and not longing for what once was or worrying about what may never be has been the biggest change of all. Taking it day by day is such a cliche. Until you’ve lived it.

And it’s been 5 years of California Stars

When I walked into my 50th birthday party, one of the many surprises waiting for me was Steve singing California Stars. Of all the song titles in my book, he picked this one. And every time I’ve listened to it since, I am instantly transported back to that day and the feeling of love. But the love I think of goes far beyond the walls of the party. Everyone I’ve come in contact with since the day I woke up with that soaked shirt has been at one time or another, whether it be literally or figuratively, an answer to my dream of:

“I’d like to rest my heavy head tonight

On a bed of California stars

I’d like to lay my weary bones tonight

On a bed of California stars

I’d love to feel your hand touching mine

And tell me why I must keep working on”

I’ve never understood the value of rest before I got sick. There Ain’t No Rest For The Wicked was my mantra. But that was really maladaptive manic behavior meant to keep me safe from feeling any type of hurt. But now I have no choice but to take time out and you giving me shoulder to rest on, a comfy blanket to lie on, a hand to hold, and a kind word gives me the space to keep trying and keep being open to whatever comes next.

I took my last purple pills on January 1st. Now I wait. If you’ve seen me in the past four months, you’ve noticed my eyes are clearer. I don’t know if the gains I’ve made will hold, but there is always hope. Jonathan Toews returned to Chicago last Monday for the first time since he had to take a leave from the Blackhawks to focus on recovery from Long Covid and it just so happened to be my Long Covid anniversary. Watching him choke up as the entire stadium welcomed him back, I felt the love and pride the entire city has for him for all he has done and how he’s never given up trying to get back to what he loves. That is the same love I feel from each of you as I continue to share my story, advocate for treatment, gain back skills I struggle with, and try to spend as much time as possible enjoying friends and family.