Books, Boys, and Bodies

The view from our balcony. I admit – I didn’t get a whole lot of writing done.

For this weekly blog of mine, I generally write about one of three B’s in my life:

–  Books (because a writer must also be a reader)

–  Boys (mainly my fourteen-year-old son)

–  Bodies (living with my autoimmune disease, an invisible disability).

Last week, it occurred to me just how much those three are often connected and inter-related.

Let me explain.

Last week at this time, my family and I were in Maui. 

This was a big trip for us. The last time my husband and I were in Maui was for our honeymoon, twenty-three years ago. Our son had never flown before, and I hadn’t flown since before my son was born. Which means I hadn’t flown since my UCTD (undifferentiated connective tissue disease) diagnosis. Add in my worries about COVID, and you can understand why I went into this trip with a great deal of anxiety. At the same time, I was determined to experience the trip as fully as I could. 

Which is where the B’s come into play.

In terms of books, I brought one book and one magazine with me. I didn’t read nearly as much as I thought I would. There were no days spent lounging by the pool. There was too much to see and do — including a visit to the Barnes and Noble in Maui.

When it comes to boys, my son was much more adventurous than my husband. During the planning stage of this trip, my son had told us he hoped we could go parasailing and ziplining in Maui. I had been parasailing once before, many years ago, on Catalina Island. That time, my husband was an observer, not a participant. And he opted for the same role this time around.

It was because of my son that I pushed my body as much as I did. 

Parasailing? Me? Yes, definitely. The parasailing itself didn’t cause additional pain in my leg. The only pain and discomfort came from getting in and out of the boat. But, it was a small price to pay for the incredible experience, as my son and I rode tandem and admired Maui’s beauty from such a unique perspective.

Ziplining? Me? Yes, I think so. Neither one of us had ever gone ziplining before. We signed up for an eight-line zipline adventure that promised to be something neither one of us would forget. I worried that I wouldn’t pass the knee and ankle check that takes place before we’re loaded into the van and driven into the hills. (On my waiver, I did disclose the information about my illness, and I did pass the knee and ankle check. The woman who observed me and gave me the final clearance reminded me to just go slow and hold your son’s hand to help you.) The actual ziplining wasn’t nearly as hard on my body as the hiking and walking from one spot to another. And I admit, I did slip and fall during one of our walks — thankfully, no injuries or scrapes. 

What an awe-inspiring experience we had. Views of the Pacific Ocean if we looked one way, views of the West Maui Mountains when we looked the other way. 

I felt strong, something I don’t always feel. 

Because on this same trip, I did something I had never done before. I used a wheelchair. A very good friend of mine had encouraged me to take advantage of the wheelchairs available at airports. Don’t waste your legs standing in line and walking through an airport, she said. And she was right. But it still didn’t make it any easier for me to ask for that accommodation. In fact, I waited for the day before our trip to submit the request.

We did a lot of walking during our trip. (Sand is so hard to walk on!) We did some hiking, too. There was so much to see (chickens and roosters in parking lots, waterfalls, flowers), so much to admire (sunsets, rainbows, puffy clouds), and so much to be grateful for (our trip, our safety, all that my body can still do).

And we each came home with one more book than we left with.

Words Have Power

Words are powerful. What you say, and how you say it, have lingering effects. And I’m not just talking about words spoken to someone else. Also included in this list are the words we speak out loud to ourselves (I’m not the only one who talks to herself, am I?) and the words we think to ourselves. 

We know this. 

But sometimes, something happens that serves as a flashing-light reminder of just how true that is.

Last week, I had two such incidents.

My neighbor and I were chatting and catching up. She’s almost forty years older than me and was talking about some new pain she’s experiencing in her lower back/side area. Thankfully, all x-rays came back fine, no problems identified. She found herself in a situation that I know all too well. Tests are negative, big problems ruled out, but still no answers about what’s causing the pain and no clear direction given on how to alleviate the pain. 

“I tell you, living with chronic pain is no fun,” she said. 

I know.

“I don’t know how you do it,” she said.

I bit my tongue.

She went on a bit, describing the discomfort, and again said, “I really don’t know how you do it.”

I looked at her and said, “I don’t have a choice.”

I do it, I live with chronic pain, because I have to. Because there is no alternative.

And though not her intention at all, and though I’m not fully sure why, her words got under my skin and bothered me. 

The second conversation occurred the next day, during a telehealth appointment with my rheumatologist. Near the end of our conversation, I asked her about a trip my family and I are thinking of taking. 

“We’re thinking about going to Hawaii,” I said. “But I haven’t flown since before my son was born, and he’s 14. I haven’t flown since I have this condition. And I’m worried, because of the blood clot I had after my biopsy.”

(In case you missed it, I had a second biopsy in September 2020. A “routine” procedure that was supposed to provide some answers to my rheumatology team. No answers, and I developed a “very rare” blood clot in my left calf. You can read about it here.)

She answered my questions, told me some things I could do before, during, and after flying. And then she said something that has been on repeat in my head since she said it.

“Oh, go, you need to have some fun.”

And that advice, given with a smile through a screen, was encouragement and validation I hadn’t realized I needed. 

It’s Stressful

There’s been a lot going on these last few weeks. And I’m not even talking about the big scary stuff such as the heartbreaking devastation in Ukraine. 

I’m talking about things in my own little corner of the world. 

I had some medical tests done recently. Here’s the thing about that — it’s stressful. It’s stressful knowing you need the tests in the first place, it’s stressful waiting for the tests (because for me, it took several weeks to get the appointment), and then it’s stressful waiting for the results.

I was very glass-is-half-empty about it.

I was sure these tests would not come back with good news.

I tried to explain my reasoning to my therapist. 

For years now, I’ve had many symptoms that aren’t quite “right.” Not red-flag wrong, but enough to cause a doctor to pause and order more tests, just to be sure, just to rule out something else.

For years now, those tests have all come back fine, or at least, okay-enough. But as I told my therapist, I feel like there are only so many “get out of jail free” cards a person gets. I felt I must have used up my limit by now.

There’s the other part of me that feels as if I’m waiting to be further punished. As if some higher force is looking down at me thinking, “Ha. You’re talking about pain in your leg. You’re saying it’s harder to sit, to stand, to walk, to drive. You think this is bad now. I’ll show you bad.”

But then a friend of mine gave me another way to look at it. 

She told me that the higher power up there figures I have enough going on. This higher power knows I’m dealing with crap (aka pain and the complications that come with chronic pain) every day. So they’re not going to give me something else to deal with. My plate is already full.  

My friend used a few curse words in our conversation that I will leave out of this blog, but she made me laugh, and helped me see things in an entirely different way. 

It’s true. I am dealing with “crap” every single day. Some degree of pain. There are medications to take. Medications to try. Appointments, consultations, labs, scans. Heat, ice. Rest, exercise. It doesn’t stop.

And in case you were wondering, my tests came back with good news. 

13 Ways Writing Is Easier Than My Autoimmune Disease

It all started from a 5-minute writing exercise. I used a prompt from Barbara Abercrombie’s A Year of Writing Dangerously: 365 Days of Inspiration and Encouragement (great book!), and when my timer went off five minutes later, I knew I had written the beginning of something. That first draft went through some significant changes.

13 Ways Writing Is Easier Than My Autoimmune Disease is the final result. 

I’m happy to say it was recently published at The Mighty. You can click here to read the essay in its entirety.

4 Reasons Why Chronic Pain Sucks

(This magnet hangs on a board near my desk.)

I’ve been told I have a positive attitude. I’ve been praised for not letting my autoimmune disease take control of my life.

I try. I try very hard to look at the bright side, to acknowledge that things could always be worse, to do the things I want to do pain or no pain.

But, in all honesty, the last couple of weeks have been really bad. Like trying-not-to-cry-as-I-walk-back-to-the-car-after-taking-my-son-to-school bad. 

In our home, we don’t curse. Even words that other families might use, like “sucks,” isn’t a word we use. Except, occasionally. 

Today is one of those occasions.

Chronic illness sucks. Chronic illness that causes chronic pain really sucks. There’s no rhyme or reason to it. For example:

  1. Sleep does not equal less pain.  I rarely sleep through the night. If I only wake up once, that’s a good night’s sleep for me. But the other night I did something I hadn’t done in a long time — I slept through the night. My body had a full night of uninterrupted sleep. I woke up, amazed to realize it was morning. I got out of bed and felt … lousy. Terrible pain. From the moment I woke up until I went to bed again that night.
  2. Muscle spasms worsen everything.  I was sitting at my desk, with the dull pain I’m used to in my left leg. As my son was showering, my left calf began to twitch. And not in its usual twitching spot — more on the inside of my leg. This was the outer side of my calf. My muscle twitched, and I tried to rub my leg. My muscle continued twitching, and I bit my finger. It finally stopped twitching and I had a really hard time getting up from my desk chair. I had an even harder time stepping into my own shower. My leg was tight when I went to bed that night and no different when I woke up with the alarm the next morning.
  3. Rest doesn’t automatically mean relief.  I have been making an effort to take time for myself. To rest. Not in the form of a nap, but sitting outside on our patio, reading a book. I usually spend my days taking care of household chores, dealing with appointments, and writing. But I have been making a conscious decision to set aside some time during the week — when my husband is at work and my son is at school — just for me. To sit in one of my favorite places, doing one of my favorite things. I hoped to notice an improvement — an increase in relaxation, a decrease in discomfort. Nope. Maybe it’s too soon. Maybe I need to do this more often, more consistently. In any event, I got in some extra reading time. 
  4. Pain levels fluctuate.  When I spoke to my husband on one of his breaks, my pain wasn’t bad. It felt so good to be able to say that to him. By the time he called on his next break, about three hours later, it was bad. Pain-pill bad. I hadn’t done anything physically strenuous or anything I could see as a possible trigger (like gardening or standing on a step-stool to reach something on a high shelf in the closet). The pain shifted — from not bad to real bad. And for no apparent reason. 

What Doesn’t Kill You

Once in a while you come across a book and you suddenly have this urge to buy cartons and cartons of this book, plant yourself on a busy corner, and pass them out to everyone who walks by.

This is how I feel about Tessa Miller’s What Doesn’t Kill You: A Life with Chronic Illness – Lessons from a Body in Revolt.

While our chronic illnesses and experiences are vastly different, the book is so very relatable. The bottom line is everyone living with a chronic illness and everyone who knows someone living with a chronic illness, should read this book. 

I don’t remember how I first learned about this book. But I do know that this is one of the few books I have bought sight unseen. I bought it based on what I read about it. I bought it because I had a desire to read something by someone who “gets it.”

And Tessa Miller gets it:

“I needed a book written by someone who exists in that foggy space between the common cold and terminal cancer, where illness doesn’t go away but won’t kill you. I needed someone who lives every single day with illness to tell me that 1) I wasn’t alone and 2) my life was going to change in unexpected, difficult, and surprisingly beautiful ways.”

“I didn’t know then that my life had changed forever. That I’d be able to divide my experiences into before I got sick and after I got sick.”

“I became a professional patient, and a good one. I learned that bodies can be inexplicably resilient and curiously fragile. I would never get better, and that would change everything: the way I think about my body, my health, my relationships, my work, and my life. When things get rough, people like to say, ‘this too shall pass.’ But what happens when ‘this’ never goes away?”

“And they shouldn’t doubt the level of pain you’re in just because you’re not writhing around on the floor; chronic illness patients learn to live with a shocking amount of physical discomfort and often go about it looking natural.”

“But grieving yourself when you’re diagnosed with a chronic illness is different. The emotions might be similar to those felt when mourning a loved one—anger, sadness, numbness, disconnection from reality —but the process of ‘moving on’ is more complicated. Whereas the loss of a loved one has a sense of finality, the loss of self from chronic illness can feel never-ending.”

“See, chronically ill people grieve two versions of ourselves: the people we were before we got sick and the future, healthy versions that don’t exist (or, at least, look much different from what we’d imagined). There’s no guidebook for this kind of ongoing self-loss. No Hallmark card that says, ‘Sorry you’ll never be yourself again.’ “

“Your body and your brain are not two separate entities. They’re a partnership. What happens to your body affects your brain, and what happens to your brain affects your body. Taking care of your brain’s health should be no less of a priority than taking care of your body.”

“ ‘God doesn’t give you more than you can handle,’ as the saying goes. But that isn’t the way it works at all. Some people have more suffering, and some have less, and there’s no rhyme or reason why. Bad stuff happens to good people with no other explanation than it just happens. Little babies die suddenly and horrible old billionaires live to see 105 and decent people get sick forever. Shit will never make sense.”

“And despite what the writing of a memoir signals, I don’t love to talk about myself IRL; the page makes me appear much braver than I am. But despite the fear, I keep sharing my stories through writing because that’s how humans connect and stay alive. Stories give us empathy. They make us strong. They offer perspective.”

How’s My Health?

(I may be in pain, but it’s fall, and a star-shaped leaf in my yard makes me smile)

The other day my next door neighbor asked, “How are you? How’s your health?”

I really wasn’t sure how to answer her. The short answer, and what I told her, is “Okay,” because I am okay-enough. I’m getting things done on my to-do list, keeping up with all my obligations, meeting all my writing deadlines, making dinner each night. 

But the truth is it’s been a rough couple of weeks.

And sometimes I’m not so sure I really am “okay.”

The pain has been pretty intense. The other night when my mom and I were chatting on the phone, she asked me if I had done something that might have contributed to the bad pain day I was having. (I think she meant something like take a long walk or gardened for an extended period of time.)

I told her the truth. “I woke up.” 

I woke up with bad pain. It stayed all day. Totally out of my control.

I’m also awaiting test results which is never an easy situation to be in. On the one hand, I never want doctors to find something new – which in my head means something scary, something bad. But on the other hand, if something did show up, maybe it would alter my treatment plan which would then maybe lessen my pain. Maybe it would give doctors an answer, so I wouldn’t have to hear, “We don’t know why…”

I received my booster for the covid vaccine. Which leaves me feeling oh-so-grateful to the researchers and scientists and medical professionals who made that possible. (And I feel badly, because I forgot to bring the nurse a snack. Each time our family has gone in for  a covid vaccination shot, we’ve given the nurse a snack – a granola bar or bag of chocolate-covered almonds. It was a small way of saying “thank you,” and “we appreciate you.” But I forgot the snack at home on that Friday morning for the kind nurse who gave me my booster and chatted with me about books.) 

And I almost fell. Twice in one week. Both times at night. Both times in my son’s bedroom – once before we read and once after we had read. I kind of flopped onto my son’s bed the first time and grabbed onto my husband’s arm the second time. But the incidents left me feeling shaken and scared.

So how am I? How’s my health? 

It could be worse. 

But it certainly could be better. 

It’s Pain Awareness Month

(You can’t tell from this photo, but I was in a lot of pain. But it was a great day! My family and I had enjoyed a fun family outing – which included a couple of hours in the car as well as an hour-plus of walking. And, I got these beautiful sunflowers – my favorite flower! So there were lots of reasons to smile. But my leg h-u-r-t!)

September is Pain Awareness Month.

It’s gotten to the point where I refuse to answer a nurse when he/she asks me, “What’s your pain level like on a scale of 1-10?”. (Just so you know, I don’t ignore the nurse. I simply explain I can no longer answer that question.)

I used to really try to answer. I’d look at the range of faces and short descriptions under the illustrations and try to figure out where I fit on that scale. 

But now I realize there’s no point. My pain level can change from day-to-day, hour-to-hour, minute-to-minute. 

And sometimes, many times, my pain level is irrelevant. It doesn’t matter how much pain I’m in. If it’s 3:00 on a weekday, then that means I need to pick up my son from school – regardless of how I feel. It’s non-negotiable. 

I rarely let pain stop me from doing my daily activities. Because if I did, I wouldn’t do anything most days — at least lately. (The pain has been off-the-charts the last few weeks which means more doctors appointments and changes to my medications.)

But also, I wonder what long-term pain does to me — my body and my mind? I’ve been dealing with UCTD since 2010 (even though I didn’t know it was until my diagnosis in 2011). Ten years of pain has to warp your perception of discomfort. A “5” on my scale, I’m sure would be at least a “9” on my husband’s scale. (This may be a very bad generalization, but at least when it comes to my dad and my husband, they are not as pain tolerant as my mom or I.)

Here’s the other thing about pain. Everyone experiences it. In some way, shape, or form, everyone is dealing with something painful. 

When you stop and think about it, that’s a powerful reminder to pause and really try to remember to treat others with compassion and kindness and patience. 

Because you never know what someone is dealing with simply by looking at them.

In Possession of the ‘Enough Stuff’

Even if I had pursued my first dream, if I had tried to become a United States astronaut, I wouldn’t have succeeded. Because now I know the truth. Apparently I’m claustrophobic.”

“The first time I had an MRI, I was completely unprepared for it. I thought an MRI would just be a fancy X-ray. Instead, I felt as if I was being swallowed up by a massive machine that slid me inside and wouldn’t let me back out. It was loud, it vibrated, and I felt like the whole thing was a very elaborate plan to see how long it would take until I cracked and pushed the panic button. (I kept it firmly in my grip, my thumb gently hovering above the button. Just in case. And to my credit, I’ve never used it.)”

On the surface you might not think my childhood dream of becoming an astronaut and my current identity as a chronic illness patient have anything in common.

But they do.

I’m proud to share my essay, “In Possession of the Enough Stuff,” has been published in SWFP Quarterly Special Issue 26. You can click here to read the essay in its entirety.

And, fun bonus! On Sunday, August 15th, Santa Fe Writers Project hosted an incredible reading on Zoom. I participated and read a portion of my essay. The whole reading was incredible, and I feel fortunate to have been a part of it. (If you’re pressed for time, I start reading at about 50 minutes in.)

Lost and Found

I lost my teaching career. Teaching was more than my job; it was my passion. My identity. However, the pain and fatigue from my autoimmune disease (Undifferentiated Connective Tissue Disease) made it necessary for me to ‘retire due to a disability.’

I found my second career, as a writer. Since I was no longer teaching full-time, I could write full-time. Personal essays I submit to literary journals and anthologies. Blog posts for my personal website. Assignments as a regularly contributing writer for a popular family-oriented website, MomsLA.com.”

My personal essay, “Lost and Found,” is a series of reflections — about what I have lost as a direct cause of my autoimmune disease and what I have found as a result. It’s a way of acknowledging the ways I have changed, the ways my life has changed. 

Lost and Found,” was recently published in the Summer 2021 issue of Breath and Shadow. You can click here to read the essay in its entirety.