COME SO ALIVE

Finding breath and beauty amidst the storm

All the colors

November! Red, burgundy, and golden leaves, orange pumpkins, and, where I live, often gray skies and white snow.

I recently learned that November also sports a white ribbon – for Lung Cancer Awareness Month.

Unfortunately, I learned that because a friend was diagnosed with lung cancer earlier this year.

A NON-SMOKING friend.

Through the diagnosis and subsequent testing, she learned that there is a genetic mutation that results in many types of cancers but most frequently lung cancer…in non-smokers.

Cancer is hard enough. I imagine having to share a lung cancer diagnosis is doubly hard. Our first thought hearing someone has lung cancer is, “Well, you must have done this to yourself,” right? Because only smokers get lung cancer.

Except she didn’t. Because she isn’t.

This came out of nowhere, a random and very cruel mix up in a gene.

I know what that’s like because a gene not doing what it should have done is the reason my son has epilepsy. It’s the reason I wear purple multiple times a year (including November, which is also Epilepsy Awareness Month).

My friend has a great sense of humor and has used that as one of her tools in this new battle. She hates social media so sends emails to keep us all updated and peppers them with humor.

A recent one read, “As a show of my appreciation for your support of my lung cancer fight, for lung cancer awareness month coming up in November, I’d like to get you a Fu** Lung Cancer shirt so you can show your support of f****** cancer everywhere.”

A sentiment I totally understand because I’ve used that word in conjunction with epilepsy a time or two…but didn’t think I should wear it in front of my 13-year-old. She kindly understood and said she’d find something else.

Fast forward to a package in my mailbox (because we live in different states) and a shirt with a white flowered-lung design on it.

White. Purple. Pink. Red. So many colors for so many diagnoses.

But what do those colors really signify? Those colors are reminders we aren’t alone in the diagnosis. Those colors literally show us that someone else is walking this painful, scary, heartbreaking path right next to us.

Even when I can’t be right next to her.

Through (Together Remix)

In less than six months this year, three friends received very serious cancer diagnoses.

The first came in April when my friend’s husband was admitted to the hospital the same day as receiving the diagnosis. The family’s community immediately rallied. Over the next several months, our family helped with the kids, provided food, and gave hugs whenever needed.

I also gave my friend one of my “The only way out is through” temporary tattoos but she didn’t think her husband’s doctors would let him apply it. Another friend had given her a bracelet that absorbs essential oils so she added the tattoo to her own wrist next to the bracelet. She even shared a photo of the bracelet and tattoo on a Caring Bridge update as they were on the front end of going through her husband’s cancer treatment.

Her post reminded me of my post “Through” last spring which included a photo of that tattoo on my own arm, the arm going through shoulder surgery recovery and PT.  Two lone arms going through very difficult times in life.

Then two more friends received cancer diagnoses. Unfortunately, they live plane rides away from us so we can’t do much for them other than send texts, cards, and goofy little items to give them a laugh and help keep their spirits up.  It’s been frustrating not being there to help but we’ve walked with them through as much of the journey as we can from afar, even if it was only written encouragement to our friend during his wife’s long surgery last Thursday.

Last weekend a friend treated me to “Swan Lake” at a local historic theatre.  We found our seats and then asked a woman to take our photo with the beautiful theatre behind us.  My friend put her arm around my back but I struggled to put mine behind her.  I had to explain that I still can’t move my shoulder at that angle post-surgery.

“Ok,” she said.  “We’ll do this,” as she grabbed my arm & linked hers through it.

That simple act reminded me of a quote I saved from a devotional recently:

We were designed to lock arms & fight together…

“Living Changed: Spiritual Warfare” YouVersion Plan

Yes, that’s what I have experienced within our storms of epilepsy, open-heart surgeries, stroke, and even shoulder surgery – people locking arms with us to get us “through” the storm.

So, while it’s true that “the only way out is through,” it isn’t the whole story.

More accurately, the only way out is through – together.

Be prepared. You’re up against far more than you can handle on your own.

Ephesians 6:13 MSG

Afraid of storms

I am not afraid of storms,
for I am learning how to sail my ship.

Louisa May Alcott

Nine years ago, just weeks before we heard, “Cody has epilepsy,” I started writing. I didn’t actually know WHY I was writing, wasn’t sure if it was a book or maybe just a new way of journaling, and didn’t intentionally sit down to write.

The words just came out of nowhere and I had to write or type them as quickly as I could.

Months turned into years…of seizures…and of writing.

At one point, I added a title page to the Word document that had grown quite large: “Beauty in the Storm.”

But it took many years to be able to see any beauty. Or rather, to be able to see the beauty that had existed throughout but was easily overshadowed by the storm.

Two months ago, we hosted a concert to mark the 10th anniversary of Cody’s first seizure. As I introduced the singer, I was brought to tears while sharing the beauty God has added to our journey. I listed several things with no difficulty but barely managed to speak when it came to sharing about the people we have met – people we have met only because we’re all in the epilepsy storm together.

“Amazing people who, if I had never met them, I think I would have felt an ache from their absence but never known why,” I struggled to say as the truth of that sentence overwhelmed me.

A storm so intense I wasn’t sure I would survive it overcome by beauty so unexpected I could never have envisioned it. I would never have chosen epilepsy but given the chance now, I don’t think I would wipe it from our lives. The beauty in the storm is too precious.

Last week, we spent 5 days in Tennessee for a family wedding and some sightseeing. We stayed in a cabin in the Great Smoky Mountains for one night…and were awoken by the fiercest downpour I’ve ever heard.

Not to be outdone by mere rain, a flash of light lit the bedroom and I thought, “Uh oh,” a second before a thunder crack seemed to BOOM from the backyard and reverberated back and forth against the mountains. It was just a little unnerving but I also almost laughed, it was so shocking…so unexpected. So beautiful.

The one day we planned to spend exploring the mountains began with a thunderstorm which turned into mist, gorgeous mist blowing and billowing and literally crawling up the sides of the mountains.

Later, our drive up to the tallest peak included rain, thunder, mist, and sleet. Our hike to the very top pelted us with hail in the 40-degree air and buffeted us with wind gusts so strong Cody had to grab a railing on the final ascent.

And we laughed. Cody walked in puddles and posed with virtually every tree we passed.

We asked, “How much farther?” of people walking down as we struggled to walk up the path to the 6643-foot peak – and then cheered on others as we hiked down: “You’re almost there. Keep going!”

I shared knowing smiles with several other equally exhilarated hikers. “Bring it on, storm! I can beat this.”

The storm obscured the view from the mountaintop but what we experienced within it was so unique. So unexpected. So beautiful.

Would the view have been stunning in sun and blue skies?  Of course.  But if that day had been clear, I think I may have felt an ache from the storm’s absence but never known why.

Note to self: you don’t need to be afraid of storms.

Clingmans Dome, Great Smoky Mountain National Park

Imperfect Perfection

Hurricane Cody.  Octopus on speed.  The Little Dictator.

To say Cody has been a handful is an extreme understatement, as those nicknames that we’ve given him (starting at about 5 months of age and into toddlerhood) testify.

My husband and I also frequently say that while we may only have one child, we are having the full experience. And I realized this morning: I really am.

I shared this photo early this morning with another social media mom who also has a son with epilepsy and ADHD (as well as autism).  She had posted a photo of herself standing behind her two sons with a hand on each of them.  The caption read,

How do you recognize the mama of a child that had autism, adhd, and is a constant flight risk?  Look at how they’re positioning their hands on their kids for pictures. 🤣”

Which made me laugh because I have been there so many times that, before I even read “constant flight risk,” I thought it.  Yes, those exact words. 

Constant. Flight. Risk.  Oh my.

(Note the FULL ARM wrap I’m utilizing to capture “The Hurricane” for the photo.)

I didn’t necessarily laugh in the moment but, reading that post and thinking back, I can definitely laugh at the struggle now.  Maybe being able to share it with someone else makes it easier to laugh.

And Chuck and I have laughed day after day for over a decade about something Cody has said or done. Years later, we still laugh about some of those things.

Yet, I’ve also cried more in those years than I ever thought I would, from fatigue, fear, and even anger at our life’s situation.

It seems impossible that something that cuts out a little part of me could also make my life so full.

I guess a life doesn’t have to be perfect to be perfect.

Beauty in the not-normal

In search of a photo of the stunning fog rising off the small lake I had just driven past, I walked down this path.

The path led to the lake but once there I realized that the rising sun was now behind me – I stood on the opposite side of the lake I had driven past and could no longer see the beautiful mist backlit by sunrise.

The path didn’t lead to the view I had hoped for but a different beauty greeted me.

When we are open to beauty, it is more likely to appear to us. When we share that gift by pointing it out to others, we find we have even more of it to celebrate.

Trebbe Johnson

Last week someone told me my life wasn’t normal. Which, while validating to hear, is not what I want to spend my brief days focused on. Hence stopping for fog, something most people on that road probably didn’t even notice.

Looking for beauty in the not-normal doesn’t negate the pain. Our hardships hurt and do damage. At the same time, pain doesn’t mean beauty no longer exists.

Looking for beauty in the not-normal changes my focus from being only on the pain to also being on gratitude. And gratitude reaches out and keeps my head above the waves.

My husband likes the term “spiritual jiu jitsu” to describe times when I figuratively end up on my back on the mat after encountering a major insight from God. For me, gratitude is like that. It provides a way for me to perform a throw down on the pain trying to beat me.

Well, maybe more like “Karate Kid” and “wax on, wax off.”

Focusing on gratitude, I find a way to deflect even more damage that the pain from my not-normal wants to deliver. Pain wants me on my back and down for the count.

Gratitude deflects and even heals the wounds that pain inflicts.

Perhaps the more pain I experience, the more crucial it is that I look for beauty.

Gratitude as a discipline involves a conscious choice. I can choose to be grateful even when my emotions and feelings are still steeped in hurt and resentment.

Henri Nouwen

Not normal

“Your life’s not normal.”

My physical therapist said that yesterday as he explained he thought much of my continued pain and inflammation in my shoulder is from stress.

I started to cry.

“I’m not trying to bring out emotions here.  You’ve had to deal with so much and you’ve weathered all of it.”

“I know,” as I cried and laughed.

But my life’s not normal.

Seizures, ADHD, allergies and autoimmune issues, and more for my son.

Open-heart surgeries (yes, plural), a job loss, and a stroke for my husband.

Nurse Ratchet administering a vaccine by SLAMMING the needle so hard into my shoulder that she tore a tendon…so badly that I needed surgery…after which I couldn’t take pain medications because they horribly triggered my vestibular migraines (which had developed from said vaccine) to the point that I couldn’t sleep at night, that sleep itself and the position of my head during sleep caused massive waves of vertigo ripping me from the sleep needed to heal from the shoulder surgery…

“I think this shoulder pain and restriction is from your body trying to protect itself.”

Because my life’s not normal.

I had to have imaging this morning on a lump in my neck.  It appears to be a bone spur on my spine, and I’m thinking that could well be what’s causing the pain and range of motion restriction in my shoulder.

I just want a normal life.

I want the 2-3 kids I expected, including a set of twins.  I want the big Victorian house with gorgeous woodwork that I envisioned living in as a teenager.  I want a part-time job with benefits and actual vacation time.

I want normal.

On my drive to the clinic this morning, I drove past a little backwater lake and noticed the most beautiful fog rising up from it.  Fall had very rapidly descended and the 43-degree air was colder than the water.  A natural phenomenon, but not an every-day occurrence.

Certainly not normal.

Photo by Evi T. on Unsplash

All the -ists

The journey started with a sheriff’s deputy and paramedics crowding my tiny bathroom.

The deputy arrived first so had already put an oxygen mask on my even tinier toddler by the time the paramedics entered.

Almost ten years of seizures later, the journey has led me to a quiet cabin on a lake by myself while Cody attends camp on the same lake. I dropped him off Monday morning once the rest of our church group arrived and picked him up at 5 pm that night.

It’s not a day camp but for Cody it is. Cody, whose seizures are triggered by poor sleep, can’t stay up until midnight like the other campers. Each day this week, I have dropped him off in the morning and picked him up at supper time so we can eat, do epilepsy meds, and sleep in our own cabin…the cabin I have to myself during the day while Chuck works & Cody plays, swims, and experiences his first week-long camp.

After getting all of his meds checked in at camp on Monday, Cody ran off to take his swim test. I drove back to the cabin, plopped in front of a wall of windows overlooking the lake, and exhaled.

Then I remembered that I had only told the pastor that Cody should always have a swim buddy – I had forgotten to tell the lifeguards he has epilepsy so they could also keep an eye on him (seizures in lakes are bad).

And THEN I thought, “I’ve done what I can.”

A long list of “-ists” came to mind as I thought about having done what I could for Cody on this journey:

Neurologist
Epileptologist
Neuropsychologist
Otolaryngologist
Sleep specialist
Occupational therapist
Physical therapist
Audiologist(s)
Endocrinologist
Psychologist
Psychiatrist
Cardiologist
Functional medicine specialist
Allergist

It has taken a lot of work to get to this point. To give Cody what he has needed to be able to spend his days at camp.

This week, Cody gets to just be a camper. Not exactly like the other campers but, at least during the day, he looks like one.

And, at least during the day, I get to enjoy one more -ist:

According to Virtuoso, The Travel Magazine, “If your idea of a vacation is to sit by the beach all day long, you’re a Relaxationist.”

Amen.

Summer reading

“…having a positive attitude isn’t always painless – it’s a process, much like keeping a journal.”

It’s Gonna Be Okay journal

While shopping yesterday for items for Cody’s camp next week, I remembered I had wanted to buy a gratitude journal for a friend. I sent her a text asking if she or her whole family would use one. I hadn’t heard back from her by the time I finished my shopping list so headed to the journal aisle.

The reason I wanted to buy a gratitude journal for her is that her family is facing a summer of some very intense health issues. A gratitude journal wouldn’t magically make things better but it could give them a way to watch for good things this summer during the hard.

I was looking for one with a nice cover, something they could keep as a remembrance of getting through this stressful time. Instead, the first one I saw said, “IT’S GONNA BE OKAY” which caught my attention because I have a few friends who say that or something similar frequently. Then I read the rest of the cover and actually laughed out loud:

“A journal to reassure myself when I’m overwhelmed by the creeping sense of impending disaster and the all-encompassing fears both specified and vague that colonize my mind, body, and soul…”

Ha! I realized I was buying a journal for myself too.

Then I saw the journals “OKAY FINE, I’M GRATEFUL!” and “I’M SO FREAKING FREAKED OUT” – and grabbed one of each of those as well. I thought they were a nice complement to each other for my friend: some days we can be more grateful than others…some days we just freak out.

It turns out my friend already had a gratitude journal, but she readily accepted the freak out journal.

I paged through the other two last night and, while I have no shortage of unread books that I could read this summer, I appear to have two new ones to add to the summer reading list. There really isn’t much to read each day, just a quote about gratitude or optimism and a blank page for me to record “What I’m hanging hope on today” or “Why I’m grateful today, more or less.”

“While it’s true many of life’s ups and downs are out of our control, it’s also true that we can choose to enjoy the ride.” (introduction to It’s Gonna Be Okay journal)

There will be ups and downs this summer, not just for my friend but I’m sure in my own life as well. Because that’s life. We have good days and bad days. Or, as the Lawrence Welk quote for today’s summer reading states,

There are good days and there are bad days, and this is one of them.

Lawrence Welk

The current’s pull

Photo courtesy of Edward Goode, imagoscriptura.com

World spinning.  Loss of control.  Head going under…  I asked a social media friend recently for a suggestion on an image to pair with my post on anxiety.  He not only gave me a suggestion; he gave me his photo!  Actually, he offered me several but when I saw this one, I saw in that current what I felt in my post.

“We are no longer going to be doing what you do and are terminating your employment.  Your last day will be…”  After that I didn’t really pay attention.  It wasn’t surprising news but it was still shocking to receive.  I was part of a 40% reduction in the HR department so knew not to take it personally. But I still took it personally.

I loved what I did. I was good at what I did. I hired people – of course they were going to keep doing what I did. How could I not take that personally?

My job was my source of income and benefits. I was single, had house and car payments, and had recently started grad school (this job being how I planned to pay for it).

My job was also my source of identity, many friendships, and self-confidence.

All of which instantly evaporated and blew away on the breath that had uttered, “We’re no longer doing what you do…” 

I knew the HR game as I was HR. I had just spent 6-8 weeks of 13-hour days helping my R&D managers decide who they had to terminate.  A RIF, it’s called.  A reduction in force.  Permanent job loss.

According to one site, “The reduction in force leads to cost savings, eliminates redundant positions, and streamlines business operations.”* They caution it may negatively impact the company’s reputation.

Hello, it also causes anxiety and panic attacks for its employees!

Such as the day I was driving from my grad school internship to campus for class.  I can still remember exactly where I was when suddenly I couldn’t breathe. My lungs just froze. Or maybe my brain froze and no longer knew to tell my lungs to breathe. I couldn’t even force it – and trust me, I tried.

The grief of job and relationship losses, the financial stresses – they certainly were difficult.  But I think the biggest blow was to my self-confidence.  I couldn’t keep the job I knew how to do.  How did I think I could do this internship, succeed in this program which was a completely new field?  I had wanted to become a therapist so enrolled in a local clinical social work program.  I wanted to share with others those tools that I had learned just a few years earlier in my own therapy work to pull out of the pit of depression.

Amid learning how to help others, anxiety suddenly swirled into my head.

Anxiety is more than worry. It takes over not just the mind but the body too, like the ability to breathe.  That swirling current stole my breath.

A few weeks ago, my husband recalled being sucked into a rip current off the shore of the Outer Banks in North Carolina.  He was 7.  He was on vacation with his best friend’s family and, thankfully, the father had just instructed the boys what to do in a riptide.

Don’t fight it.  Relax and go with it until you get to the end of the current.

Fighting the current is why people drown.

He survived.

And I realized that’s how I’ve learned to survive anxiety as well – recognizing I’m in the current’s pull.

That’s always the first step.

Panicking more only worsens the inability to breathe.  I lose when I fight it.  I need to relax.  I need to remember I am actually getting oxygen even when it feels like I’m not.

Thankfully, I had practiced yoga, breathing exercises, and meditation for many years by the time I lost my job.  So, like my husband, I knew what to do in the event of being sucked into the current.  Unlike his experience, anxiety isn’t a one and done event.  I knew what to do the first time it hit…but I’ve had to do it over and over.  And over.  Every time that anxiety current rolls back over me.

Even with knowing what to do, the current’s pull can still be terrifying.  It took my husband quite far out from shore.  But he relaxed and was able to make his way back.  I can make my way back from anxiety, from panic attacks as long as I’m paying attention to the current around me.

It doesn’t mean I never end up in the current anymore but it does mean I know that I can survive it.

I can breathe even in the current’s pull.

Always talk to your primary care provider about anxiety symptoms.  Moderate and severe anxiety benefit from a combination of talk therapy like Cognitive Behavioral Therapy and medication.  These links offer excellent self-care practices to help you manage your anxiety as well.



*https://www.randstadrisesmart.com/

When life hands you lemons,

…use a lemon filter!

Ok, that may not be what you were expecting me to say. I’m referencing the goofy filters (overlays to videos) on Instagram, in case you’re totally baffled.

A friend asked me today what I do to add laughter to my life. I pulled out my phone, opened Instagram, and showed her a video of me as a lemon. Just a lemon with my eyes and mouth, no body. And she threw her head back and laughed.

Now the reason I’m a lemon is not funny. I recently created a private Instagram account…named after the name another friend had given her newly discovered cancerous lung tumor.

My friend lives in a different state so I can’t even help her. The tumor had grown so large by the time the doctors realized she had cancer that she can’t get enough breath to talk anymore…so I decided to talk to her.

We log into the account, I post videos, and she writes comments on them. They are all meant to make her laugh – because she had asked for funny cards or notes to keep her spirits up…and thankfully we have the same sense of humor.

On my second video, I discovered a filter that made my face a lemon…and since I was still recovering from shoulder surgery, it had been many days since a shampoo – so a lemon filter was perfect!

She loved it so much that I played around with other filters and have even created Season 1, Episode 2 of “The Lemon.”

Life throws so many lemons at us, so many circumstances we just can’t control. But we get to choose how we are going to face those circumstances.

Like by turning my face into a lemon to add laughter to someone’s day.

We shouldn’t deny the pain of what happens in our lives. We should just refuse to focus only on the valleys.

Charles Swindoll

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