Weird? Strange? No. It’s My Reality

A young child might think a non-green tree is weird.

Let me set the scene.

A virtual appointment with a neurologist, a man I have never met before. This was a doctor my rheumatologist and my neurologist both hold in high regard and wanted me to meet with. For a second opinion, for a different perspective, for a new set of eyes to look at me, my medical history, my test results.

He asked questions, I answered. He looked at my legs over a screen. He asked me to stand and sit and squat and tip toe and balance on one foot. Some things I could do, some I couldn’t.

And after all that, this doctor looked at me across a screen and said, “It’s strange.” (In all fairness, this doctor did refer to my symptoms and labs as strange rather than me.)

I momentarily bit my lip and replied, “I’ve heard worse. Usually I hear the word ‘weird.’ “

This doctor chuckled and said, “Weird works.”

And then I finally did it. I finally had an answer for a doctor in the moment.

“No, weird doesn’t work,” I began. “Because nobody knows what to do with weird. No one knows how to treat weird. No one knows how to help weird.”

A thirty-minute initial consultation with no answers. The doctor needs more time to review my medical history. I need to contact him after an upcoming ultrasound, and then we’ll set up an in-person visit for him to look at and touch my leg.

In the meanwhile, I’m left feeling despondent. 

And still with pain in my leg.

You can click here to read “The Hard Realities I’ve Faced After My Doctor Told Me, ‘You’re Just Weird’ “ back in 2018.

 

Questions Without Answers

You can’t find all answers in books. Ryan (age 4) and I at the public library.

“How did you get it?”

My son has asked me that question many times during the ten years I’ve been living with my autoimmune disease.

It doesn’t get any easier to answer, because there really is no answer.

And like most things in my life, things that are hard to understand, things that are hard to make sense of, I try to sort them out by writing about them.

Click here to read my personal essay, “Questions without Answers” recently published at ChronicallyLit.com.

 

A Visual Representation of Hope

My top purchase during these last few months?

The one I look at, over and over, with gratitude, that has a place of prominence in my home?

Pete Souza’s collection, Obama: An Intimate Portrait. 

I’ve wanted to add this impressive book to my library since I first read about it and then saw it in my local Barnes and Noble.

But – the book was $50. It was big and heavy. It took up a lot of space. 

All that was true. And still true.

Except for the $50. I found the book on sale, and being the bargain-shopper I am, bought myself a well-deserved present.

But then Mr. Souza’s book arrived, protectively wrapped in cellophane, and I hesitated to open it. 

I didn’t want to devour the book all at once. I wanted to savor it, the way my husband and I used to leisurely share a chocolate soufflé at our favorite French restaurant. 

So that’s what I did.

Over the course of the last few months, I’ve looked at a few pages at a time. Many were images I had never seen before. Many were images that just made me thankful this man and his family were living in the White House when my son was born. In fact, my twelve-year-old son and I looked at most of the book together. 

This is a book that will remain in our family for generations to come.

This is a book of proof – we, as a country, are capable of “this” – opportunity, diversity, acceptance, respect, greatness.

This is a book of promise.

This is a book of hope.

Vote.