Holding Onto Hope

(These beautiful lines were stenciled on the sidewalk, near where I parked my car, before meeting with a new neurologist.)

In one week, on two consecutive days, I had two very different medical experiences.

Day One: A follow-up with my rheumatologist. An appointment to “strategize” (his word) because after all my tests, he had no definitive answers or explanations to offer me. It’s been a lot of tests, even during the pandemic. A muscle biopsy, meetings with specialists, vials of blood (17 at one visit!), an MRI.

All these tests have ruled out a lot of really bad possible diagnoses. No red flags have been waved. And yet, we still don’t know why – why the pain has spread in my left leg.

I keep going to these appointments, I keep meeting with new doctors (a neurologist and a hematologist within the last few months) for two reasons. I remain hopeful that one day, someone will reach an “Aha moment,” something that gives us some answers, and most importantly, gives me some pain relief. But I also go to these appointments out of fear. Fear that my autoimmune disease is worsening. And when there’s something bad going on in your body, usually, the sooner it’s found, the sooner it’s caught, the better the prognosis. 

And then, Day Two: I received my first dose of the Pfizer vaccination! Here in California I qualified, not because of my age, but because of my underlying health condition. And all I can do is marvel at it all. In one year’s time, this horrific pandemic changed our planet, took the lives of over half a million souls in our country alone. And yet, in one year’s time, a vaccine was developed, tested, and is being rolled out in increasing numbers. 

And now I’m waiting. Waiting to meet with another specialist. Waiting for my second vaccination dose.

Which brings me back to hope.

The Present is a Gift

Let me begin by saying I write these weekly blog posts in advance. You receive them in your inbox each Wednesday morning, but I write them before Wednesday. 

Which means what you’re reading today has been written before the results of the United States election were made available.

So I don’t know what this morning looks like. I don’t know what the election results show. 

But I’m hopeful.

And really, with so much uncertainty in the world, that’s all anyone can really do. Begin each day hopeful. Begin each day with the awareness and recognition that, no matter what, each day is a gift. 

I try. 

Hanging in my bathroom, I have a small, framed piece of art created by Flavia Weedn. It is a reminder to appreciate each day as a precious gift. It is a reminder that each day is a promise of beauty and grace and wonder and magic.

That is my hope for today. 

 

Because of Ryan

Ryan, age 8. Strong enough to lift the truck that towed the space shuttle Endeavour. California Science Center, July 2016

I first became ill when Ryan was just two years old. He has grown up knowing me like “this.” “This” meaning pain in my legs, prescription bottles on the counter, doctors appointments written on the kitchen calendar.

It breaks my heart that Ryan has learned a powerful lesson at such a young age. People get sick. All different kinds of sick. Through no fault of their own. And sometimes there’s nothing you can do to make the illness go away. The only thing you can do is learn to live with it as best you can. 

But there is a flip side to all this. 

There has to be.” 

Those lines were taken from one of my personal essays, “Because of Ryan” which was recently included in the fourth issue of Please See Me. 

Click here to read the full essay.