Coffee with Virginia

Last night, as I was lying in bed, I started thinking about something that had happened.

I had been heading toward the bedroom with a simple plan in my mind. I was going to go into the bathroom, take my medications, and take care of my personal needs before going to sleep.

I knew exactly what I intended to do.

When I reached the bedroom, I almost walked into the bathroom. Then I decided to plug in my phone first.

That one small change was enough.

I sat on the bed, put on my CPAP mask, and lay down. Approximately ten minutes later, I suddenly remembered everything I had intended to do.

I had forgotten to go into the bathroom.

I had forgotten to take my medications.

I had forgotten the entire reason I had walked into the bedroom—until the thought returned ten minutes later.

Those are the kinds of situations I experience many times throughout an ordinary day.

To someone else, it might sound like a small mistake. Everyone forgets something occasionally. But when you live with chemobrain, these moments happen repeatedly. They interrupt your routines, interfere with your plans, and slowly change the amount of trust you have in your own mind.

Sometimes I will think, “Oh, I’ll remember that.”

I say it with complete confidence, even though I already know I have memory problems. The thing seems so simple and so obvious that I cannot imagine forgetting it.

But nope.

The thought disappears.

That is one of the hardest parts of living with chemobrain. You cannot always continue through life in the way you want to. You have to learn to work with the brain you have now—not the one you once had and desperately wish would come back.

I wish I didn’t have to live this way.

Over time, I have secluded myself more and more. When I go out and spend time around other people, I often feel as though I am out of the loop. Conversations move forward while I am still trying to follow what was just said. People laugh, talk, and connect while I sometimes feel like I am standing somewhere outside of it all.

I recently attended a birthday party. There were people around me, and I was enjoying being there with them. Yet somehow, I still felt completely alone.

I almost cried.

I held the tears back and quietly looked around at everyone gathered there. Nothing terrible had happened. No one had been unkind to me. I wasn’t actually alone.

But I felt alone.

It reminded me of being a child in a new place—standing among people but feeling out of the loop, unsure of where to go or how to become part of what was happening. It was the lonely feeling of believing that perhaps you didn’t quite belong.

That is difficult to explain to someone who hasn’t experienced it.

You can love the people around you.

You can enjoy watching them laugh and talk.

You can be grateful that you were invited.

And you can still feel separated from everyone in the room.

Chemobrain doesn’t always announce itself. Sometimes it is simply a forgotten task before bed. Sometimes it is the confidence that you will remember something, followed by the frustration of realizing you didn’t.

And sometimes it is standing in a room filled with people you care about while feeling as though you are completely alone.

That is the part of the fog nobody else can see.