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.”

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.

What I Really Mean When I Say ‘My Leg Kinda Hurts’

It began with a writing prompt. Then some notes. Then several drafts. And resulted in a completed essay published on The Mighty.

 

“ ‘My leg kinda hurts, but it’s okay.’

That’s my standard answer when I’m asked how I’m feeling. I hesitate to say more. I don’t want to tell them (my husband, my son, my parents) how bad my pain is, simply because there’s nothing any of them can do to ease my pain.”

You just read the beginning of my recently published essay “What I Really Mean When I Say ‘My Leg Kinda Hurts’.” 

The reality is more complicated than that.

Click here to be re-directed to The Mighty to read my essay in its entirety.

All I Can Do is Take It Step By Step

I recently finished reading Claire Cook’s The Wildwater Walking Club: Step By Step. It was a fun, easy read. Exactly what I wanted. 

The book is meant to make readers feel good. To transport readers into another world, Noreen’s world, as she walks with Tess and Rosie and navigates life as a newly certified health coach. 

So, why then, were there times I felt sad? 

Why did this feel-good book leave me feeling a bit down at times?

It took me a while to figure it out. 

And then I realized – it’s the walking. (Which is a big part of the book.)

I no longer know the easy joy and pleasure that comes from going on a daily walk.

I do continue to walk each day in my neighborhood, but they’re not always joyful. Not always pleasurable. 

I walk. Certainly not at a quick pace. And not to count my steps. 

But to walk. To exercise. To spend time with my family outdoors. To observe our neighborhood.

But my walking is … I struggle for the right word. Difficult? (Sometimes.) Unpredictable? (Sometimes.) Pain-inducing? (Sometimes.) Exhausting. (Sometimes.)

I don’t always experience more pain after a walk, but sometimes I do.

Sometimes I experience random pain during a walk. A step off a curb that sends a jolt up and down my left leg.

A sudden gripping pain in my calf, that causes me to stop and wait and hope it will pass so I can continue walking. But then the walking has a bit of limping to it. 

If I walk while in pain, it’s still walking. 

And so I keep doing it. 

Because some days are better than others. 

And I walk, step by step, hoping for one of those better-pain days.

 

There Is No Shame

I saw this on the sidewalk recently, before a doctor’s appointment. A thank you to the artist!

“I’ve been living with Undifferentiated Connective Tissue Disease for ten years now, and I’m still learning how to do it. I don’t know if there ever comes a time when you reach the finish line and achieve the “gold star” for figuring it all out. You just keep figuring it out, moment-by-moment, day-by-day, and wake up the next day, and do it all again.”

And so begins my recently published essay, “There Is No Shame in Life With Chronic Illness,” published at The Mighty. (Click here to read the article in its entirety.)

The conclusion of the essay goes like this:

“There is no shame in your body not working/functioning/behaving as it used to. Your body, your life, you – are still a marvel. Never forget that. 

There is no shame in who you are and how you feel.

There is no shame in needing to learn this lesson over and over again.”

It’s an important lesson as we look with longing and hope to the new year.

Wishing you all a peaceful, healthy 2021.