E.C. Stilson's Blog, page 41

Something Miraculous Happened

 Something miraculous happened. I received nearly 2000 comments on a social media post. In a short period, dozens of messages came in Messenger as well! But they weren’t what I expected. They were all from people who have cancer. I cried at the computer because I’ve been so scared to tell my story. It’s hard to let people know the ups and downs I’ve felt. How I’ve been vulnerable and weak, still needing my walker at times. Or how I sobbed because I lost my hair. 

But these messages were from people telling me they felt exactly the same. People saying THEY needed to hear this from someone else, but they had no one to talk with. And so I cried because I feel the same. I guess I started sharing on social media because I didn’t want to burden my family by calling and telling them the good and bad things. But if they read my posts, well, that’s their choice. Yet, I could still get the feedback from others—the love that’s thus far buoyed me through.

Life has a strange way of wrapping us up in crazy situation that can seem so terrible, but when you stand back they’re really not. 

When I was a little girl, I used to get scared of simple things—like not waking up in the morning. Then I would dream, and I wouldn’t be scared anymore. I’d dream that I fell into a lake and a terrible alligator would snatch me up. But he just wanted a friend. And he’d bring me to his underwater lair, where there was magically air—and tea—and all sorts of delicious things. He’d use his massive claws to hold a delicate teacup and I’d laugh. Because it wasn’t quite so terrible after all. And he was just lonely sometimes too.

I guess that’s how cancer feels today. It snatched me up and is trying to drown me, but if I can have the strength to find the good—even in sickness, even in possible death—it’s not quite so terrible after all.

Today I’m remembering that each situation might just be a chance for us to see the good. And that goodness can buoy us through.

The Hard Part

 The Hard Part

We’ve told the kids that I have cancer—when you’re in this situation you have to. But we haven’t told our two youngest that it might be terminal. After all medical research is progressing every day—and unless you’re in an Orson Scott Card novel, it’s hard to kill a Stilson (my maiden name).
But many kids are like miniature detectives, and they catch much more than we realize. I remembered this last night.
I’d gone to sleep around 6. One of the tumors is in my pelvis, and unfortunately it must be growing because when I lie on my right side a searing pain shoots up my body as if I’m getting tased where the tumor is. I’d been asleep for a few hours when a tiny knock resounded from my bedroom door.
“Yes?” I asked.
“Mama, it’s Indy. Can I come in?”
Indy is ten, quite small for her age, and awfully extraordinary. But as she walked in, she didn’t light up the room like she normally does and that worried me.
“I need to know,” she said emphatically. “Are you dying?”
I blinked. “I’m really sick right now, sweetheart. But I’m fighting! And some of those doctors have no idea how tough I am.”
“You missed story time tonight,” she said. “You never miss it—not really. You must be so sick!” Then she climbed into bed with me and cried so hard. “I’m just really scared, Mama. I can’t even go to sleep without you reading to me. How am I supposed to live without you?”
I tried to keep my voice from quivering, but hearing her words hurt more than when I had the back surgery, radiation, or all of it combined. “I’m stronger than this,” I told her. “I really am. But right now we need to trust that God has a plan. Everything will be all right.” 
I hugged her for the longest time. Being in pain—I can handle. Most of the emotional stuff can be theorized into submission. But that—seeing my 10-year-old cry—that was a pain so terrible.... I would do anything to protect her, and now my sickness is the source of her pain.
“Wait a minute. You’re not crying just because I’m sick. You’re crying about dinner.”
“Huh?” She turned to me.
“You’re bummed we didn’t put mushrooms in it.”
“Yuck!”
“And you wanted fish!”
She broke out laughing and wiped her tears away. “That sounds gross, Mama. I am not crying because I wanted mushrooms and fish!” She smiled, and I thought that she’s such a blessing.
“I always wanted you,” I said.
“And I always wanted you!” Before she left the room, she kissed my cheek with those lips that are still so tiny. “Fine,” she said. “If you can be strong, then so can I.”
But after she left the room I cried because I had missed story time and because I don’t want to miss any number of things now OR when the kids grow up.
I breathed slowly. “God has a plan,” I told myself. “There’s good buried in this, and God really does have a plan.” With that in mind, I drifted back to sleep where I dreamed that I could walk normally and even run—and that I didn’t have a care in the world.

Window of Time

 It just hit me how much my life has changed since I got cancer. I have several good hours of every day when I can be around people and do things. But for the rest of the day I lie in bed and sleep. When you only have so many hours...well, it completely changes everything. 

I don’t have time to waste on menial things. I used to work, and then work some more. If I wasn’t working for an employer, I was working for myself.

Now, truly realizing that time is numbered for all of us, I find myself completely changed.

Yesterday, I spent the day doing unusual things (for me). My 10-year-old put fake nails on me—there was a lot of glue involved. My son taught me how to do a trick with his balisong trainer knife (try THAT with fake nails!). I also got to talk about art with my oldest daughter and watch her play video games. 

Yesterday afternoon, when I was resting for the millionth time, I told my husband how fortune I am to have him and our four kids. I have no idea what the point—or the meaning—of life is, but I do know that it’s strange what happens when we only have a small window of time each day. 

What would you find most important during a small window of time? What is your “reason,” and are you truly appreciating it, or are you letting those moments pass you by (like I used to)?

I hate what cancer has done to me—it’s still very hard to walk, and I’m in a lot of pain. BUT I’m so grateful for the other changes it’s caused in me. It’s not all bad, really. I’m grateful for time, even if it is only a window each day. I’ll appreciate every moment I can.

Ring the Bell

 I got to see someone ring the bell. That means their cancer treatments are over. Instead of watching the woman who celebrated this big win, I watched the three patients who sat near me. Two of them perched expectantly (as if they can’t wait for their turn). The third’s head fell as she clapped, making it obvious that she thinks she’ll never ring the bell. I studied her dimmed eyes and stretched skin. That’s when I cried right there in the treatment chair.

The nurse came back shortly after. I wiped my eyes and tried to smile brightly. The thing is that life might suck sometimes, but that’s no reason to stop trying to make it bright for other people—that’s what so many people have done for me. 

“Are you okay?” the nurse asked.

“Just a blip of sadness. But the real question is, how are you? You’re working on New Year’s Eve. And you look pretty busy.”

She smiled down at me. “It’s interesting, but not many people ask how I’m doing here. It’s not a bad thing, they’re just going through so much.”

We talked for a while and she seemed a bit lighter after we’d joked and smiled. She even brought some of the laughter to the woman who’d seemed so sad when the bell rang. I was most grateful for that. 

Anyway, I guess the point is that life can be terribly hard. The best I can do is fight with everything in me, trying to make life better for those around. Even if they aren’t physically sick, they’re going through their own struggles too.

I still wish I could wrap my arms around the woman who got chemo. I’d love to tell her how beautiful and strong she is. But I need to have faith that she’s on the road meant for her.

Terminal Cancer

 I heard from a friend today who has terminal cancer. He’s had it for a year though, and now it’s invaded his stomach, liver, and lungs. The tumor started in his spine which is all too real for me. My tumors stretch from my pelvis and spine, up into my brain. There are tiny growths in my lungs and on my gallbladder, too.

 

After I spoke with him, the pain in his voice stayed with me like a bad spirit. I just couldn’t shake how much he reflects death right now. He said people get awkward when they talk to him lately; I think it’s because people are so scared to die.

For some damn reason I ended up watching Animal Planet later. I saw a lion take down a gazelle—and it wasn’t a quick death either. The thing was still alive, and watching helplessly as the lion gnawed on it. 

The whole time I was thinking, “That lion is cancer and the gazelle is my friend.... The gazelle is me.... We just want to get away, but it’s this slow, painful sort of ordeal where you just hope that someone will save you from the jaws of the lion.”

I turned off the TV. Nobody has time for that. I’ve always wanted to be a lion. Always. But right now I’m praying for something to save me. 

Being at the mercy of something...at least it puts things in perspective. Some things have never looked so clear.

My Christmas Miracle

In 2019 the worries of life hit hard, and I needed a distraction. The dress shop felt like the perfect place because the clothes are secondhand vintage classics that hold so much magic it could whisk anyone away. 

I wandered through Annie Hall’s store and felt so much from the past that my own problems faded. You can practically touch the fabric and feel the souls who wore the sets decades before. “Seeing” the past like that...well, there’s nothing quite like it.

I continued on, imagining what type of person had worn which set, and then something strange happened. I discovered the most beautiful velvet dress—that almost called to me.

“Oh, that one,” Anne said, suddenly behind me from seemingly out of nowhere. “That is a very special dress.” She went on to explain that it came complete with the original silk handkerchief that was about 70 years old!

Even though the price tag had it listed as one of the most expensive items in the store—hundreds of dollars—I decided to try it on. The dress fit me like a second skin, zipping tightly in place, tailored to my exact shape.

“It’s beautiful isn’t it?!” Then Anne asked me to model it on the shop’s rustic staircase. 

Even though I loved it, I could never afford such a dress. And no matter how much it had called to me, I placed it back on the hanger and left it displayed for the lucky woman who would inevitably buy it.

Time passed. Anne and I became friends because I visited the shop many more times. I’d fallen for the ambiance and the sweet owner who makes everyone feel gorgeous.

Needless to say 2020 came with hardships for everyone, but my hardships included stage 4 cancer. I underwent treatments, had an 8-hour surgery that could have paralyzed me, and ended up shaving my head because of hair loss from radiation.

One day, I sat telling my husband how I felt “truly ugly” like a bald vulture. 

“You do not look like a bald vulture.”

But that day I felt less than normal, limping (even with my walker), and struggling so much with self esteem that it surprised me. 

It wasn’t long after that when he said someone was on the phone. Anne’s face beamed on the screen. 

“Anne?!” I didn’t know she even really knew Mike that well. 

“She has a surprise for you,” Mike said. Then he showed me the black velvet dress from 2019. He held it in his hand.

“It was meant for you,” Anne said...and then I cried.

Emotions overwhelmed me not just because of the gorgeous dress but because of Anne and her kindness. The thing is that we’ve hit some pretty hard times but so many people like Anne have saved us and made things unfathomably better. I never knew that in 2019, I’d end up trying on a dress that would completely bless my 2020 holiday—despite cancer.

I put it on this Christmas and as I looked in the mirror, I tried to stand as straight as I can. I smiled and for the first time in months I somehow felt beautiful. I cried again, then went to the Christmas tree and just sat in front of the lights. 

The thing is, we never know what the future will hold, but I’m awfully glad because it seems to be filled with such wonderful moments even in the darkest of times. Cancer and all...I am the luckiest.

Merry Christmas.

It is Well

 “Whatever my lot, Thou hast taught me to say, ‘It is well, it is well with my soul.’” These words were written by composer Horatio G. Spafford after he suffered some of life’s worst tragedies. His son died from pneumonia, then his business was destroyed in a fire. As if all of that wasn’t enough, a short time later all four of his daughters were killed in a terrible accident at sea. 

When traveling over the spot where his daughters died, Spafford wrote this song: “It Is Well With My Soul.” I can’t completely do it justice right now on the violin (below), but the sentiment is the same. I have no idea what the future days, months, or years will hold, but I have faith that there’s a reason for it. There’s a plan. 

I played this yesterday, sounds silly but it took almost all of my energy (I’m still so exhausted from cancer treatments). 

Merry Christmas, everyone! I know the holidays aren’t always easy. You’re not alone—and God loves you. Everything will be okay; somehow there’s a reason for what’s going on

Facing Death

 This whole “facing death” thing has me doubting everything. And right now, I’m wondering if I’ve been a good mother.

I keep thinking about something that happened this summer. I’d wanted to bring the kids to float the Portneuf River, but it was so hard coordinating it with everyone. In the end, everybody could go except our oldest daughter and her boyfriend at the time. 

Anyway, one of us had the great idea that instead of getting 6 tubes we should get one giant tube. That was a mistake!

So there we were, 6 of us floating the Portneuf all together, but it was extremely uncomfortable. And everyone (except Mike) kept complaining. Being a constant Pollyanna, I responded, “But it’s a beautiful day.”

“It’s too hot.”

“I’m uncomfortable.”

“I want to go home.”

“When will we be done? I have plans with my boyfriend later.”

“Two to three hours,” I said. “We get that much time to just enjoy each other. Won’t that be amazing?” But none of the kids thought so. 

“Oh my gosh! Look!” I scooped something out of the water—the world’s tiniest fish skeleton. “It’s so small!” I showed the kids. This impressed my son, but I thought my youngest might jump ship—or throw up.

When we hit some rapids and the tube popped, that’s when things started to get really bad. Mike tried to hold the hole in the tube, but it was pretty big.

“I’m getting out. I want you guys to enjoy this!” So, I got out of the tube (which is what Mike had wanted to do). I folded the tube so it wouldn’t leak any more, and I started dragging them down the shallow river. As I walked, I hoped the day would get better. 

I started singing, hoping that would help. And just into the fifth word, I slipped and fell into a massive hole in the yucky river!!!

Kids probably still talk about the legend of the Portneuf River monster. Well, my kids saw it that day. After I’d resurfaced from the world’s deepest river hole, a string of profanities left my mouth that would make a prison warden cringe. Mud and gunk clung to my face. Mascara dripped from my eyes....

“What in the *bleep*? I’ve been looking forward to this *bleeping* day for months. Yet does anyone else want to enjoy it? No!!! What in the *bleep* is going on with everyone. This bleepedity, bleepin’ bleep!!!”

We all ended up getting out of the tube at some point after that and climbing out of the river. (I was the only one who got stung by a strange plant on the way out.) 

It was hard dragging the huge, popped tube behind us. The kids stayed close to Mike, and I walked alone—the river monster who tried not to cry. 

My hair was still covered in muck, and I momentarily wondered if I had a baby fish skeleton somewhere in my hair. I overheard my second oldest daughter tell Mike, “We were having a great time until Mom flipped out.”

And I felt terrible. Sometimes in life I guess we can try so hard that it becomes more stressful than it should be. But as I’m looking back at my life, I worry that my kids will remember more of these moments than not. I guess the scary thing is that it doesn’t really matter anymore, the jobs I’ve had, the number of books I’ve written, the cool places I’ve played my violin. THOSE things don’t matter. Was I a good mom and wife? Was I a good friend? 

Honestly, I’ve succeeded, and I’ve also really failed. 

But the best thing about death is that it has a way of showing what’s important. And like that failed trip down the Portneuf River, I don’t want people to remember me like that river monster—especially my children.

The Publisher I Looked For

I’ve written eight novels now and tried exceedingly hard to get all of them published. It’s been a journey so perilous that I could probably wallpaper my house with all of the rejection letters I’ve received. The book closest to my heart is about my son who died. I told someone that reading his story is like prying open my rib cage to see what makes me tick. I couldn’t find the right publisher though. A company offered to publish it, but wanted to change the “story”—which is odd since it’s a memoir.

So, in 2011 I started my own press, publishing “The Golden Sky” (about my son) along with over 100 other authors in the process. After my marriage (and thus my business partnership) soured in 2013, the company folded. I felt like a failure on numerous levels...and gave up on a ton of goals and dreams.

Fast forward to 2020....
I couldn’t help it anymore, and I wrote another book during quarantine. This is the first novel I’ve completed in years. I just let the story come; the characters did whatever came to me at the time. I’m fact, I’ll never forget when I reached the end of the novel—and three of the characters died. It sounds ridiculous, but I started crying on my balcony.

So yes, I’d been drinking a [big] glass of wine and eating some fancy cheese as I typed the chapter. My husband came outside and asked what was wrong.

He looked so concerned as I said—quite loudly, “I killed them! I killed all three of them, and I didn’t even see it coming. Actually, now that I look back, there has been a ton of foreshadowing that they were ‘done for.’ But I didn’t see it until the end!”

As I bawled, still describing their terrible demises, my husband whispered, “Ummm, sweetheart. You might want to lower your voice.” His eyes darted around the backyard.

“Why!” I squeaked. “Why? This is devastating!”

He hugged me really close and whispered in my ear, “Because one of our neighbors is in their backyard and they can hear you. They’re looking over here quite concerned. Because… You keep saying that you killed some people.”

Being a writer is a strange phenomenon. Sometimes you can get so attached to the characters, it’s almost like you’re living in the story as you write it. And stream of consciousness writing is the best! The human brain generally knows where to take a story, especially if the writer reads a lot of novels.

Well, after I explained to the neighbor that I am a writer, they actually might buy some of my books!

Anyway, I ended up submitting this quarantine novel to over 30 publishers. Every single one of them was housed in the United States except for one—in Berlin. All of the U.S. publishers got back to me, saying that the book’s ending was too “troubling” or “shocking.” BUT the Publisher in Berlin sent me *drumroll please* an actual...real...authentic...contract! I have been on Zoom meetings with these people, hearing their powerful German accents. I speak a little bit of Italian, and it was fun to discover that the owner of the publishing company is from Italy just like my grandma!

Long story short, I have been trying to get published by an actual publisher since I was 26 years old—that’s 11 years. I’ve been writing seriously since I was 19 (and even wrote my first novel—which was 90 pages—when I was nine years old). They say writing runs in your blood; I guess it’s always rushed through my veins. It doesn’t mean that I am successful or talented, it’s just my way of sharing—connecting with other people.

After working so hard to publish my own books and other people’s novels, to help breathe life into their dreams.... Now someone is doing this for me—and working with this editor from Berlin feels like some sort of miracle.  

It just goes to show that you never know what adventure is waiting just around the corner!

So from a 37-year-old woman who has tried to get published for over a decade and is now having a novel published in Berlin, I’m telling you, “Don’t give up on your dreams.”

Sometimes life doesn’t turn out the way you expect; sometimes it turns out even better.

Signing off,
A Very Happy EC Stilson

Kissed on the Shoulder

He stared at me from across the way. I sat peddling newspapers, excited for people to read about the news we’d recently unearthed. He paced back and forth, just watching. 

I guess I must have looked thoughtfully at him at one point because he returned the action. Sometimes I wonder if people with down syndrome can be like that, simply honest and unassuming. 
As the day continued, I decided the man must have been in his early twenties and obviously seemed to be pondering something.
My thoughts suddenly turned to my son who died.  He’d had birth defects and the doctors thought he was mentally handicapped. They kept saying that if he ended up growing to be an adult, he wouldn’t have a good quality of life. 
There was a part of me that wondered if they’d been right. He died from health complications, but I’ve always wondered what he really would have been like, as an adult.
At first they thought he’d have down syndrome, then trisomy.  They performed  all sorts of tests before he was born and afterward, when nurses cared from him in the NICU; experts studied all sorts of tests there too.
Anyway, I thought of all of this as the man with down syndrome watched me at the fair last year. If my boy would have been mentally slow, what would that have been like?
I’m normally so happy, and I’m not totally sure why but I suddenly descended into such a sadness as I sat there that I almost started crying. 
I just wished for a second that I could feel the arms of God wrap around me and just take the pain surrounding sickness and death.  It seems like when my son died he left a hole that will never be filled – not unless I can somehow be surrounded by God’s love, just to know that He has a plan.
Suddenly, when I’d gotten to the very worst of this feeling, the man with down syndrome gracefully zig-zagged toward me.
“I like you,” he said. “I just do.”
“Well, thank you.”  I blinked, and then brightened, for his sake. “And, I like you!”
“Hug?” he looked down and kicked a rock by his shoe.
“Ummm. Sure.”  So I held out my arms extremely wide and he placed his head softly on my shoulder as I hugged him. I swear that somehow it felt like the presence of God surrounded both of us, wrapping us in this crazy-strong warmth. 
He kissed my shoulder lightly before walking away. As he was about to round the corner, he yelled back, “I love you, k!”
Tears filled my eyes, not because I was sad, but because I’d witnessed something amazing. 
“Thank you for that,” his caregiver quickly said.
“He’s pretty special isn’t he?”
“Yeah, he really is.”