Category: His Vast Strength (stroke) Page 1 of 3
I recently discovered that I don’t like safety nets. Here’s why: if I need one, it means I’ve fallen.
We learned in February that my husband’s employer decided to terminate him while on medical leave, when they gave him a 2-week notice (yes, it was technically legal). The earth dropped out from beneath me in an instant, and I lost my breath as I fell… hard.
How would we pay for our son’s very expensive epilepsy meds without health insurance?! Without the special exception I had worked for over a month to get on one of them in particular?
I cried for days trying to grasp what had just happened.
Two years ago, we had to mourn the new reality of my husband’s massive stroke. This year, we had to accept he just can’t work because of the stroke impairments. At least, we thought, we had the safety net of continued employer health insurance while on disability, for all of our health needs. For our son’s epilepsy meds.
But to have that pulled out from under us too?
For a week, I couldn’t sleep, with a continuous loop in my brain all night long of the things I needed to do but no idea where to start when daylight came. No ability to jumpstart a brain frozen with terror.
Several friends and resources kindly held me up and counseled, “Just take a step. Just do one thing to move forward.”
So I applied online to our state’s health insurance exchange site, just to start looking for options. My husband and I qualified for a plan but my son was denied – because he was automatically enrolled in Medicaid instead.
We also heard from several people, “You’ve paid taxes for decades – use every resource you can that is available to you now.”
I discovered one other thing recently: it’s easy to say that when you aren’t the one presenting the Medicaid card at the pharmacy or clinic. It’s harder – much harder, it turns out – to be the one holding that card and giving it to the pharmacist.
I was shocked at the shame, guilt, and embarrassment I felt the first time I used it. The sense of wanting to explain our situation and justify why I needed to use Medicaid.
After another multi-week battle, Medicaid approved covering the epilepsy meds. (Yes, he has in fact failed multiple other meds. Yes, the dual-fellowship-trained epileptologist does actually know what she’s doing…sorry, little snark oozing out there…).
We found a safety net again, one I’m still embarrassed to use. But one which I’m very grateful to have.
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
“…there is something sacred in the fall of snow… Blessings from the heavens, they sustain life. And if sometimes they create difficulties for humans, that’s not the fault of nature. The fault is in the nature of man. Humans…are far too focused on doing and not enough on being.”
William Kent Krueger, Fox Creek
I realize that the calendar says spring and most of the country is seeing spring but, until two days ago, I was still seeing winter. Big snow piles everywhere after a very long, very snowy winter.
To be honest, I’m still feeling a little winter too.
While Minnesota’s ridiculously long season of snow started with a bang (well, a blizzard) in December, my winter actually blew in the previous March. It began the morning I walked into my husband’s ICU room and learned he’d suffered a severe stroke after open-heart surgery.
Months later, on a glorious summer day, I ran into friends…and found myself barely able to tolerate talking with them. Anger at our situation overwhelmed me, frustration at them discussing things that seemed so unimportant in comparison. That was the day I realized I needed to pull away from others for a while.
My sister-in-law warned me not to isolate. But I had to isolate. I certainly was in no condition to be a good friend to someone else, and I had no energy at the end of the day to share what I lived through that day.
So, by time covid hit our house in November, I was used to isolating. It felt comfortable. And by the time I emerged from covid in December, true winter had fully covered our house.
Recently, as the calendar began to close in on spring, I found I needed just a little more time to feel winter. Just a little more focusing on “being.”
Wish you could see
Matt Hammitt, “Even Though”
Wish you could know
Can you hear My voice
Through the winter cold?
Almost ten Decembers ago, through the winter cold, I heard a verse I’d never heard before from a book in the Bible I don’t think I’d ever heard of either. Our pastor asked our family to read this verse and light the candle on the Advent wreath at the start of the service one week. My husband read Habakkuk 3:17-19:
17 Though the fig tree does not bud
and there are no grapes on the vines,
though the olive crop fails
and the fields produce no food,
though there are no sheep in the pen
and no cattle in the stalls,
18 yet I will rejoice in the Lord,
I will be joyful in God my Savior.
19 The Sovereign Lord is my strength;
he makes my feet like the feet of a deer,
he enables me to tread on the heights.
The service was about six weeks after Cody’s epilepsy diagnosis, six weeks of walking in a fog from the diagnosis itself as well as lack of sleep from listening for nighttime seizures. (And it just dawned on me that the pastor maybe chose us to read this verse because of our new reality…I’m a little slow sometimes…)
Regardless of the intention behind it, I heard this verse and it grabbed me:
“yet I will rejoice in the Lord…”
When my website crashed a few weeks ago, I began to wonder if it was time to let it go. Not stop writing, because I can do that directly to Facebook and Instagram, but let the website itself go…because, really, I’m the only one who looks at it. It’s a creative outlet for me to design the font and photo layout for each post, but maybe that was time I needed to start focusing elsewhere.
So, I started evaluating my personal and blog social media accounts, which have evolved over the last two years. This was an unexpected pause, but it gave me a chance to stop and plan how each account should look. I lost count of the number of edits I made to my personal Instagram profile because to say my writing is eclectic is a bit of an understatement.
I fixed ComeSoAlive.com but I still wondered if I should keep it. I wondered how to “market” Come So Alive, especially in a world of social media-worthy pictures and the right hashtags, neither of which I excel at.
Then I reread one of my very first posts, “My Armor for fiercely facing the storms of life.” Someone I had just met asked for a sample of my blog posts, and I knew I wanted to include that one because it explains why it’s called Come So Alive. I opened it to send her the link…and read my own words for why I write.
“I woke up and had the thought,
’I should start a blog.’
‘I hate blogs. Why would I write one?’
‘To share hope and light the path for others,’ came the reply.”
Huh. I had forgotten that in the last two years.
Then the pieces fell into place. I don’t write to cover a certain topic. I write about where I find hope and beauty so I can remember them, so I can hold on to them. Because I forget. Regularly.
So, my topic list is extensive.
The last five years have taught me to be mentally prepared for bad things to happen.
Oops, sorry, we misread Cody’s MRIs for the last three years. He has a different kind of epilepsy, one which not only will he not outgrow it but he will need brain surgery for it.
Oops, I was wrong four years ago when I first met with you, Chuck. You do actually have a genetic issue and it’s likely what’s killing your family members. You need to have it monitored and will need open-heart surgery at some point.
And yes, those are mostly direct quotes – no candy coating going on with either doctor.
We heard both of those about two months apart. One year later we heard it was time to start brain surgery assessments and then time to have open-heart surgery.
A few months later, we had a flooded and destroyed formerly fully-finished basement. Then a job loss a week before open-heart surgery.
Another open-heart surgery less than three years later. A stroke.
So when something went wrong last week with the website I have spent over two years creating…well, of course it did.
Except I’ve taken it relatively calmly, after the initial panic.
I mean if someone hacked and destroyed my site, they are way more technically savvy than I am and there’s really not much I can do about it.
I still haven’t figured it out. So, Come So Alive might look a little different this year. Or maybe not.
I guess we won’t know until we get there.
Which is how life is anyway so perhaps that’s fitting. Maybe even that’s the lesson God wants me to learn this new year.
You’d think I’d have learned that lesson after the year of stroke we’ve had, but, no, I went to bed last night wondering about the future…
“You won’t know till you get there, Carrie, so stop trying to figure it out. To guess. To prepare. You can’t prepare. No matter how much you go over projections and possibilities in your head, you’ll never be fully prepared for all life brings.
“But you can let Me walk next to you, you can slow down and walk next to Me, so that when you get there, you get there with Me. And I AM all the preparation you’ll need.”
So instead of thinking ahead, I decided to look back. I scrolled through my photos on my phone from the last year and rediscovered these beautiful sunsets.
Do you know that Jewish days begin at sunset?
“While a day in the secular calendar begins and ends at midnight, a Jewish day goes from nightfall to nightfall.”*
As I post this, the sun is setting. Another new day is starting. And I can try to prepare for the bad I’ve come to anticipate.
Or I can simply enjoy the sunset closing out today, knowing no dark night lasts forever. Tonight’s sunset will usher in a new morning – and He will be there.
He already is.
I will walk among you and be your God…
Leviticus 26:12
*https://www.chabad.org/library/article_cdo/aid/526873/jewish/The-Jewish-Day.htm
“Those who keep speaking about the sun while walking under a cloud are messengers of hope…”
Henri Nouwen
I left the hospital that night not knowing how the next day would look. Twenty-four hours after a massive stroke, Chuck was still intubated and sedated. Earlier that day, the ICU doctor had talked to me about a tracheostomy.
Two and a half months later, Chuck had outpatient follow-up appointments to try to figure out why he was the only person in 200 surgeries to have had a stroke after that specific surgery. Prepared for the 90-mile drive and an overnight stay, we all piled in the car again and headed out.
Cody doesn’t sleep well….well, anywhere, even at home…but he sleeps even worse in hotels. Poor sleep means increased seizures. So, having found a quiet room during out first stay in March, we requested that one again in May and thankfully checked into the same room.
The problem was that it was the exact same room. After unloading the suitcases, I walked to the elevator to take the luggage cart back down to the parking level. As the elevator doors closed in front of me, I had a momentary panicky thought, “Have we not left?!”
My brain knew, of course, that we’d been home for almost two months, but my body, in that moment, didn’t quite believe it. The trauma in my body overrode the two months of memories at home that my brain knew existed. It was like reality was the dream, and I was right back where I had been in March. (Yes, I know that’s PTSD.)
During the whole elevator ride down, I actually had to talk myself out of that thought, out of the panic attack.
Back in the room, I did some deep breathing and decided to enjoy the view from the sixth floor. Looking out the window, I saw cute 100-year-old homes with fully-leafed out trees. A beautiful, spring day in Minnesota.
Remembering the pictures that I had taken through that window in March, I opened my phone to review them, including one of a magnificent sunset I could only have seen from six stories in the air.
I woke up Sunday morning reciting a verse in my head: “He has sent me to bind up the brokenhearted.”
I have a reminder on my phone so that verse, Isaiah 61:1, pops up every Sunday morning, but this week I thought about it before I even reached for my phone. Actually, I know that verse so well that I don’t really need the reminder to know those words. I have lived those words.
Last week, I wrote about anticipating my peonies popping open every spring. Lately though, I’ve been anticipating another yearly event, although I guess dreading it is the more accurate way to describe it.
You see, Sunday was the 8th anniversary of Cody’s epilepsy diagnosis.
My greatest joy was born in October.
Four years later, October ushered in my greatest heartbreak.
Obviously, I knew it had been coming for…well, since the 7th anniversary. But this year, we had scheduled our fourth fundraising concert on the same day so at least something good would come from something bad.
But once the planning and preparing were finished, I spent a day depressed. Because no matter how much we were eagerly anticipating the concert, the dread of facing one more anniversary and starting one more year of epilepsy also loomed ahead of us.
Still in bed and propped up against pillows one Saturday morning, I read my daily devotional a few weeks after Chuck was discharged from the hospital and inpatient stroke rehab. The plan was a study on the book of Ruth, and that day’s reading began with this:
“Naomi has experienced a great deal of sorrow and loss in her life, and she is in a very dark place. She doesn’t understand why God would allow all this tragedy to happen.” Love God Greatly: Ruth, YouVersion plan, Day 5.
And I thought, “Amen, sister!”
(In case you aren’t familiar with that book, Ruth had lost her husband and her adult sons, which, in that time and culture, meant she had no one to take care of her anymore.)
I next opened Instagram to see if something could lift my spirits – and encountered this post from the previous day:
“When the world as you understood it falls apart, God’s invitation to you is to lament. Lament consists of two things: allowing yourself to feel your sorrow, and then expressing that sorrow.” Adam Young, quote from the “Why Lament (Surprisingly) Leads to Life and Freedom” podcast.
Lament. Yes, I can relate to that.
Then Cody walked in with a big smile and a plate full of pancakes to treat me to breakfast in bed. And, of course, my dark mood lightened.
But, after breakfast, I started asking God how to keep writing for Come So Alive when I wasn’t feeling that way now, feeling “so alive.” How did I give people hope when I barely had enough for myself?