Long Covid Awareness Day

Today is Long Covid Awareness Day. We have a ribbon:

I’ve never had a ribbon before. Not one that was specifically for me.

The grey in the ribbon represents loss and grief, the teal represents hope and support and the black represents the loneliness and isolation that comes with Long Covid.

Loss and grief

They asked us today to post a picture in black and white of something we’ve lost the ability to do. That sounds like it might take too many of my marbles, so instead - totally on brand - I’m spending a thousand words to do what one image could do.

I miss riding horses. I miss being able to stand in a crowd and watch music. I miss being fully present wherever I am - without the constant drone of symptoms or longing to be back in bed. I miss sick days. I miss sick days so much. Symptoms that would have had me laying in bed a few years ago, now I have to power through. Because they’re never going away. I miss flexibility and freedom in my schedule - without pacing and planning. I miss mornings. I miss being a morning person. I miss running (a thing I NEVER thought I’d say). I miss working and productivity. I miss having ambition and dreams for my life that involved a career and starting my own business. I miss having a salary and health benefits. I miss - most of all - my mind. I miss the clarity of thinking - being able to understand people when they talk, being able to listen and focus without feeling the fatigue creep in.

Hope and Support

Today - my mental state has shifted so much from 2020. I have accepted life here a little bit. Accepted the pacing, and learned that life hides in unexpected places and meaning and purpose are found in bed as much as they’re found in the pulpit.

I have learned that my worth is not about anything I produce. I have learned that things I thought were a part of my identity - in fact - are expendable.

And me - this body, this soul - lying on the couch without thought or creativity - they are as beloved and purpose-filled and glorious as anything He has ever made.

I have lost so many things that felt essential to who I am and yet - somehow - I am more me than I’ve ever been.

Isolation & Loneliness

They say chronic, invisible illnesses are some of the most isolating things.

I can’t compare to others. I don’t know what the world is like for a billion different people in a billion different situations - but I can compare before Long Covid and after.

Before - I had the privilege of being known in my symptoms. When I wasn’t feeling well - I would tell people. But when the symptoms don’t stop, you learn not to talk about them. You just can’t - not constantly. And so I’ve lost the ability to sit around the table with people who know how I’m feeling.

Of course, there are moments I will share, but most of the time it’s easier to just be. If I show up - people often assume I must be feeling okay. Instead, I’ve learned that doing things while I feel bad is okay. In fact, that’s the only way to do things. If I wait to do things until I feel good - I will not do them.

Before - the ways of connecting worked for me. Now I see that the practices we’ve set up in the West to connect with one another are all infected by abelism. People are hurried and rushed (they have to be to produce enough in this culture). People can fit you in as a friend as long as you can keep up beside them as they hustle through life; as long as you can do the work to meet them in between meetings or in the corners of life that they have left. For those of us who move slowly and unpredictably - who cannot hurry or rush or walk - we are often left behind.

American life does not seem to slow down for those who cannot keep up.

And even the American Church - it will love and welcome you as long as you can come to meet it wherever it does business, but it doesn’t have time to come and find you. Unless you have something to offer. And it sadly seems too busy to notice when people are missing. People slip away and everyone moves along as if they never existed.

And even God. This Western world has infected even the ways we’ve learned to connect to God. It’s the deep study or intentional stillness or time set aside for thinking and reflecting - these things are not accessible to everyone.

So. I have learned.

We have learned new ways of being - me and God. We have learned to lay together in the dark and not think or speak. We have learned to scroll TikTok together and watch New Girl again. We have found each other in new ways of being.

And as I’ve lost one version of Church I have found another. It turns out that a lot of people have been left behind for a million different reasons, and there are pockets where they have gathered together and are building something different. They have carved out a space for me there - to be wanted - not because of what I produce, or how my mind works, or how I am gifted - but because I exist.

And my relationships have changed.

Friends hurry along at the Western pace. I raise my hand and ask for them to sit with me for a while as I rest. They love me, but they don’t have time. But I have no choice. I cannot keep up. So I sit and rest. And when I look up - I am left behind. They are specks in the distance.

But I am not alone.

There are so many who are still here, sitting beside me. These people who have remained are those who will fight to understand and learn and listen and come and find me wherever I am. I am so in love with each one of them.

And I love them all the more for the way my illness has revealed what was always within them.

**

There is so much space for loss and grief on that ribbon, but also - you can see that flicker of hope; that bright burst of color tucked behind. Emerging. Impossible to be fully covered by grief or loss.

Happy Long Covid Awareness Day.