Surviving and Thriving

When it comes to the most important roles in life (in my opinion – spouse and parent) no one gives you a handbook with practical, helpful tips and tricks.

And so it was when I received my autoimmune disease diagnosis. My rheumatologist gave my illness a name, and started me on medication, but he didn’t provide any advice on what it would mean for me long-term, what I should do that day, and the day after, and the day after that one.

Thankfully there are other patients out there, telling their stories and sharing their experiences. 

I recently read Ilana Jacqueline’s Surviving and Thriving With an Invisible Chronic Illness: How to Stay Sane and Live One Step Ahead of Your Symptoms.

It is the book I wish my doctor had handed me that November morning all those years ago. 

While I admit some of the advice and some of the anecdotes don’t apply to me (I’m not trying to decide if I can move out of my parents’ home, for example) I’m still glad I read it. And as you can see from the photo, I still found a number of passages to highlight and mark with sticky notes.

For example:

“Life with chronic illness is about managing expectations while keeping the hope alive enough to still make plans for the future.” (So beautifully put)

“Chronic illness isn’t something you beat or fight. It isn’t a race or a life-long quest to return to normalcy. You don’t reverse, battle, or spar with it. Chronic illness is something you outsmart.” (I haven’t figured that part out yet. I admit, most of the time I’m still trying to resist my chronic illness, still trying to prove I’m tougher and stronger than it is.)

“Acceptance isn’t defeat: It’s a declaration of self-respect under irrefutable circumstances. This is where you are and you’re going to make the best out of every moment of it.”  (I had never thought of acceptance in terms of self-respect.)

“Learning how and when to ask for help is going to be a huge asset to you in life.” (I continue to struggle with this one.)

“It is your body and your responsibility to treat it with confidence, intelligence, and above all, compassion.” (An important lesson for every human being.)

Prime Time or Off-Peak?

“The other night I sat on the couch as my husband stood behind me and brushed my hair. I told Paul I felt like I was slowly falling apart. I was becoming just like one of my Grandma’s purses.

‘What does that mean?’ Paul asked.

‘My grandma never liked to get rid of a purse. She’d tape the handles, because the rest of it still worked. It wasn’t ripped. The zipper worked. Just the handles were breaking. She’d use a taped-up purse,’ I said. 

‘That’s who I’m becoming,’ I said.

‘No you’re not,’ he said. 

But it’s how I felt just then. And it’s how I feel a lot of the time. Parts of me work just fine. Other parts, specifically my left leg, is more like the taped up handles – kind of working, kind of getting the job done.” 

The paragraphs above are from my recently published essay “Prime Time or Off-Peak?” (It was written last year so I must now let readers know my son is thirteen, and not twelve. Which means I’m forty-five, and not forty-four, as stated in the essay.)

You can click here to be re-directed to Kaleidoscope Magazine Number 83. My essay is on page 62.

There Is No Shame

Did you know July is Disability Pride Month?

I didn’t. 

Maybe it’s because I don’t feel pride when it comes to my invisible disability.

It’s more like resignation. Sometimes.

And sometimes it’s denial.

I don’t really know what it is, honestly, because having an invisible disability means I have a complicated relationship with my body. 

It’s a relationship that requires me to learn, and re-learn, what it means to be brave, to be strong, to be courageous, to ask for help, to say no.

And I have learned that just because it’s complicated and confusing, doesn’t mean it’s something I need to hide. Because the fact is, my invisible disability is a part of who I am. And it’s not going anywhere. And neither am I.

On that note, I’d like to share a link to a post I wrote last year for The Mighty. I think its message is an appropriate way to acknowledge Disability Pride Month. 

Click here to read my essay “There Is No Shame in Life With Chronic Illness.”

A Soft Strength

Fairfax High School Senior Year Photo, Class of 1994

“For years, I used my hair as a diversion.

It began with my ponytail phase. Every picture in my mom’s photo album shows me with my hair pulled back into a ponytail. The photos didn’t capture the back of my head and the way I carefully color-coordinated my ponytail holder with the day’s outfit.

When I entered my teenage years, I attempted to dress my hair with a variety of colorful clips and barrettes. I hoped to turn eyes away from the red pimples on my forehead and cheeks. 

By my senior year in high school, I had grown my brown-M&M-colored hair down to my waist in hopes of distracting from the worsening acne on my face.” 

The paragraphs above are from my most recently published essay, “A Soft Strength.” You can click here to be re-directed to HerStry and read the essay in its entirety.

Lessons Learned

“Now, my bandaged leg was tender and sore, and walking was more like a slow, laborious shuffle.

‘I know it’s hard now, but it will get better. This will pass,’ Ryan said. His tone was soft. Soothing.

I bit my lip, took a breath, and smiled.

Those were all the same words I have spoken to Ryan each time he’s been sick. Reminders that he’s not alone. Reminders that I’ll see him through it. Reminders that the discomfort (whether it was a high fever, a bout of vomiting, or a hard coughing) would pass and wouldn’t last forever.”

The passage above is taken from my personal essay, “Lessons Learned,” a reminder that our children are always watching, always listening, always learning from the adults in their lives. I’m proud to say my essay was recently published at MUTHA Magazine. Click here to read the essay in its entirety.

Still My Hands

(One of my most favorite bulletin boards. Just one student’s handprints wouldn’t have been nearly as spectacular. But working together, every student’s handprints creates a beautiful rainbow!)

I’m pleased to share that my essay “Still My Hands” has been published in Issue V of ang(st): the feminist body zine.

Here’s a snippet of my personal essay:

“My hands will never again staple and design a bulletin board display. My hands will never write-out desk name tags or “happy birthday” certificates. My hands will no longer grade weekly spelling tests. Those days are memories of another time of my life, another identity.”

You can click here to be re-directed to ang(st) and read the essay in its entirety.

The Octopus in My Life

I’m pleased to share The Mighty has published one of my personal essays, “How My Autoimmune Disease Is Like an Octopus.” 

I wrote this piece in response to one of The Mighty’s monthly writing prompts. “What’s something related to your health condition you had to learn the ‘hard way’?”

Here’s an excerpt from my essay:

“No one told me this would be all-encompassing. That having an autoimmune disease was like having an octopus in my life, tentacles stretching out and touching one area of my life after another.” 

You can click here to read the essay in its entirety. 

Why Invisibility Is Not a Superpower for Me

(I think teachers are superheroes. This is me, in my fifth grade classroom, on my last day of teaching. March 2013)

Today, April 28th, is National Superhero Day.

When you hear the word “superhero” you usually think of either fictional characters (Wonder Woman, Spiderman) or real-life individuals (firefighters, nurses, doctors).

We believe our superheroes (both real and fictional) have superpowers. 

Along those lines, many people consider invisibility as a coveted superpower.

But I don’t.

In fact, there are days when I believe things might be easier for me if my “invisible” disability was a bit more visible.

Two years ago The Mighty published my personal essay “Why ‘Invisibility’ Is Not a Superpower When It Comes to Illness.” 

Today, on National Superhero Day, I’d like to share it with you along with a reminder from my essay:

“The truth is, there is no age or way to ‘look’ disabled. So remember, we all deserve kindness and patience, regardless of how healthy we may look on the outside.”

Click here to read my essay in its entirety.

Wendy, Who Doesn’t Fit in One Box

This past weekend I re-read a book that has sat on my shelf for a while. A book I haven’t picked up in quite some time. But a book I felt I needed to read again.

The book?

Fran Drescher’s Being Wendy

I admit, when the book was published back in 2011, it first caught my eye because of the title. There are only a few claims to fame for fellow Wendy’s:  my name is said to have been invented by J. M. Barrie for his “frendy Wendy” character in Peter Pan, and I’ve got a hamburger fast food chain that shares my name.

But I re-read the book, because I needed to be reminded that I don’t have to fit into just one box, that one single thing doesn’t define me.

(In case you’re not familiar with the book, Being Wendy is the story of Wendy, a young girl who doesn’t want to choose to wear one box for the rest of her life. In her hometown, the rule is : “The Boxville way is to choose a box for the rest of your days.”  She doesn’t want to just be a teacher, just be a police officer, just be any one thing.  Her ideas and her dreams are too far-reaching, and one box just won’t work for her.)

Lately, it’s easy to lose sight of that. 

I have been dealing with a multitude of tests and consultations with doctors, and in my experience, doctors don’t always take the time to see their patients as complete people. 

And I don’t want to just fit into my “chronic illness” box.

I need to remind myself that there are so many other parts of me, so many other aspects of my personality that have nothing at all to do with the persistent pain in my left leg.

I’m a reader.

I’m a writer.

I’m a sunflowers-over-roses type of woman.

I’m a silver-over-gold type of woman.

I’m a singing-along-to-Abba-while-I-cook-dinner type of woman.

I’m a never-learned-to-whistle type of woman.

I’m a jewelry-wearer.

I’m a candle-burner.

I’m a chocolate-eater.

I’m an apple-juice-with-breakfast type of woman.

I’m a daily-to-do-list writer.

I’m a believer in good omens and signs.

I’m a pen pal.

I’m a former florist.

I’m a current home gardener.

And the list could go on. Which makes me smile.

I’m not just a woman with an autoimmune disease. 

Regardless of what the tests show or don’t show, I’m so much more.

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.