Month: January 2020

Why I Feel Guilty About My Autoimmune Disease

Posted on by Wendy Kennar

I live with an invisible disability. A chronic medical condition causing chronic pain. An autoimmune disease called Undifferentiated Connective Tissue Disease. My rheumatologist described it as having overlapping symptoms of lupus, myositis, and rheumatoid arthritis.

On any given day, at any given time, I feel exhausted. Depressed. Angry. Confused. Vulnerable. Fatigued. Pissed. Worn-down. Less-than. Weak.

The emotions fluctuate on my day – my activity, my energy, my pain. 

But there is one underlying emotion that’s always there. One emotion that serves as the shaky foundation for all the rest. 

 

That is the beginning of my most recently published personal essay. Click here to be-directed to The Mighty to read “What It’s Like To Feel Constant Guilt With an Invisible Disability.”

Mister Rogers Taught Me

Posted on by Wendy Kennar

One of the first books my son and I read this year was Who Was Mister Rogers? We read it over the course of several nights at bedtime. Ryan didn’t know much about Mister Rogers. And, I think Mister Rogers only made his way onto Ryan’s radar because of the recent Tom Hanks movie. (We haven’t seen the movie, just the posters and billboards advertising it.)

Because Ryan is a big Tom Hanks fan, due to movies like Toy Story 1-4, Apollo 13, and the documentary film Magnificent Desolation, Ryan became curious to learn more about Mister Rogers.

I grew up watching Mister Rogers. But I didn’t realize what an impact Mister Rogers had on me until Ryan and I read this introductory biography. 

Now, I can acknowledge just how much of my teaching style was influenced by Mister Rogers. 

I always told my kids I loved them. (I referred to my students as “my kids”.)

I told my kids they were special. 

And each year, I acknowledged every student in my class with a customized achievement certificate. Because let’s be honest, not all kids are going to be strong mathematicians or excellent spellers. But every child has a special skill, quality, talent that deserves to be recognized. 

I recognized my kids for their neat penmanship, for reading aloud in a clear voice, for being a responsible line leader. 

As Ryan and I read, “Mister Rogers taught kids an important lesson, that everyone is special in their own way.” 

 

Chronic? Yes, Unfortunately.

Posted on by Wendy Kennar

“Chronic congestion.”

No, she wasn’t talking about the 405. 

The physical therapist was talking about my left calf. My calf is, was, the primary source of pain related to my autoimmune disease. For the last few months, the pain has traveled and now extends up into my thigh.

But apparently, what I refer to as a hard knot, or tightness, in my leg, my physical therapist calls “chronic congestion.”

She held my leg up, my foot pointing toward the ceiling as she rubbed and massaged and gave a basic summary of my case to another physical therapist. “She’s got chronic congestion all in here.”

It is chronic. I’ll give her that. My condition began in 2010 when I woke up with a swollen left calf, unable to stand or bear weight or walk for days. I was hospitalized and treated for cellulitis, a bacterial infection doctors believed was the cause of my swollen, red calf. 

But even after my calf regained its normal appearance, even after I could walk and drive and climb stairs, my legs were never the same.

About a year and a half after my hospitalization, I was diagnosed with a rare autoimmune disease called Undifferentiated Connective Tissue Disease (UCTD). It has overlapping symptoms of lupus, rheumatoid arthritis, and myositis without it being any of those diseases. It’s a medical hodgepodge in a sense, and a whole lot fancier way for doctors to say they don’t really know what’s wrong with my legs or what is causing it.

Whatever you call it, it means each day I experience varying levels of pain, fatigue, weakness in my legs with my left leg always worse.

So I completely agree with the chronic part of her statement.

But “congestion”?

I hear congestion, and I think of a stuffy nose. 

Or I think L.A. traffic and planning a visit to the Aquarium of the Pacific on a Sunday, a day the 405 is generally less congested.

It’s been weeks since the physical therapist used that term, and I can’t stop thinking about it – “chronic congestion.” 

It bothers me. 

Because, what can we do about chronic congestion?

City planners haven’t figured it out when it comes to southern California’s freeways.

And, as of right now, doctors and physical therapists haven’t figured it out when it comes to my legs.

 

Hoping For Courage

Posted on by Wendy Kennar
What is going on inside these legs?

Without going into details, I have a medical test/procedure scheduled later this week. 

Here’s what you should know:

I’m living with my autoimmune disease for almost 10 years now. In that time, I’ve already experienced this particular test twice. Each time the results were inconclusive. 

The test is being done a third time mainly for comparison purposes. It’s been a few years since the last test, and doctors are interested in seeing if any changes show up this time around. There are some concerns that my left leg may be worsening. If so, this test may give some clues about what’s going on in my leg.

Aside from the fact that I don’t want to have this test in the first place, I’m not sure what to think about this test and its possible results.

Here’s the dilemma:

Do I want the test to reveal something? To pinpoint a reason why my leg pain is increasing and my leg strength is decreasing? Would this perhaps give doctors a lead, a clue, in terms of more effective treatment? 

But what if my leg does test worse? What would that mean? 

Or, do I want this test to be like every other test I take – indeterminate? Within the boundaries of normal-enough? 

Which is reassuring I guess, but on the other hand it also means it provides doctors (and me) no answers, no explanations, no reasons why I feel the way I feel.

In reality the only thing I can realistically hope for is courage. Courage during the test. And courage after the test. In whatever form I may need it.

 

A Promise To Myself

Posted on by Wendy Kennar

Today is generally the day when many people state their new year’s resolutions. Grand plans for dreams, goals, and aspirations.

I’m not going to do that.

Instead, I’m going to state my intention to continue working on my memoir. I’m going to promise myself that I will not give up on sharing my story. 

For my fellow writers out there, I highly recommend Writing Hard Stories: Celebrated Memoirists Who Shaped Art From Trauma by Melanie Brooks. This collection is such an inspiration, providing insight into how different writers took something hard/terrible/horrific and used it to create something beautiful/meaningful/relevant.

Here are a few passages I’d like to share with you:

“The reason I write memoir is to be able to see the experience itself in a new way. I hardly know what I think until I write. The therapy is one way of sort of processing things. But it’s only in writing about some of these things that we discover and understand the metaphors of our experience that give our life meaning. Writing is a way to organize your life, give it a frame, give it a structure, so that you can really see what it was that happened.” – Sue William Silverman

“I was a writer, and then this big thing happened in my family. And the way that I tend to try to understand things is through stories – both things that I write and things that I read. That’s the deepest way I know of expressing something inexpressible.” – Joan Wickersham

“You take what you’ve been through, and if you are a writer, you have to write about it.” – Suszanne Strempek Shea

“It really becomes memoir, though, when you open up space for others to enter – when it becomes about more than you, or your family, or your own personal feelings.” – Edwidge Danticat

“Don’t forget, it’s scarier not to do it than to do it.” – Abigail Thomas