If you asked me what it’s like to finally pursue my dream of writing, the honest answer is: Terrifying.
Yes, there is excitement and delight, and many other things weighing in on the positive side, but, the scale is often tipped by the heavy burden of fear.
I can’t remember a time when I didn’t dream of being a writer some day. “Some day.” A fellow writer recently told me that is a dangerous term. I agree. Part of what kept me in that Some Day mode was fear. A dream tucked away since kindergarten can be hard to finally pursue. As long as it’s just a dream, it’s still a possibility. It hasn’t been taken out in the world, soiled, rejected, or broken. If I never let it live, it can’t die.
As I reached my thirties, I finally came to the realization that I would have to take those risks. If I never let it live, it would not be alive. I decided to make the first steps down the writing path.
Step 1: Face It
We must stare straight into the mouth of this monster and see what lies there:
“Everyone will hate it. No one will ever publish my writing. I am not qualified to be a writer. No one will understand what I’m trying to say. My shining ideas will never be on paper what they were in my head. Everything I try to write will share the aroma of my cat’s litter box. I’m destined to fail.”
The old hag is right. These fears, laden with lies, blossom in our minds until we have an entire garden of ghoulish mental monsters that prevent us from pursuing our passion. We become paralyzed by fear. All the What Ifs keep us frozen in place, and we fail before we even start because we fail to start. After all, as long as it’s just an idea, it can’t fail. No one can reject it. It can’t flop. It can’t turn out poorly. It’s this intangible brilliance that lies untainted in my mind. Untainted, but also untapped. Safe, but of what use?
Perhaps we do get started. Then perfectionism pops into play. We write, and rewrite, and rewrite again. We reread for the 42nd time and it’s still not quite right. It’s just not perfect. We stall out. We never put our writing out there because it’s not quite ready for others to see. It’s not good enough to share with the world. Just a few more changes, then it will be ready. Our attempts to create perfection keep us in a dizzying loop of editing and nailbiting that results in frayed fingers but nothing shared. What If I could make it better still? What If I’ve missed something? In our efforts to make it worthy of the world’s eyes, no one ever sees it. (Don’t ask me how many times I reread and rewrote this paragraph.)
We keep telling ourselves these lies. They feed our fear and help it grow big, strong, and loud. The What If track blasts on repeat in our upstairs radio until we can hear nothing else. The dances with Perfectionism and People Pleasing keep us spinning in circles. I suppose these two things have their place somewhere in our lives, but more often than not they are unhealthy. They become stumbling blocks in our path to be productive writers. They lead us to a litany of What If questions, and that track never stops playing:
What if I write something that just plain stinks? What if I think it’s good but not everyone likes it? What if publisher after publisher rejects me? What if someone misinterprets my writing? There’s plenty more along the same line of thinking, but a blog post can only be so long. So, let’s just get right down to finally answering those basic What If questions instead of just fretting over them. This is step two.
Step 2: Embrace It
YES! The answer to most of those What Ifs is a resounding yes! Yes, those things are going to happen. At some point, each of these will come true to some degree. Guess what? That’s ok. We aren’t perfect. Our world it not perfect. As imperfect people, we are destined to imperfect writing. We have NO chance of pleasing everyone. If we write enough, and submit enough, we will surely be misunderstood, criticized, rejected, and more. Embrace the inevitable.
This doesn’t mean we believe the lies. A rejected manuscript does not mean we are a reject. Failure to publish an article doesn’t mean we are a failure. If not everyone likes our writing, it doesn’t mean everyone hates us. If our path doesn’t look like another writer’s, it doesn’t mean we aren’t a writer, or aren’t worthy of that title. Messing up doesn’t mean we are a mess. If we produce a flop, we don’t have to forever forfeit our writer’s card.
Creative souls can be a bit overdramatic. Let’s be realistic with ourselves. What really happens when these inevitabilities strike? Are we forced to wear an F on our shirts to let everyone know we have failed? Do we have to stop writing? Stop dreaming? Stop living? It’s highly unlikely that any of the What If’s we toy with are actually that serious. Ego-threatening, yes. Life-threatening, no.
What do we do?
Step 3: Chase It
Chase your dream. Chase your goals. Chase your passion. Chase away this monster. Chase away the sin of Fear. By running headlong into the fray, we sprint away from fear or mow it down in our path. Either way, this sin no longer blocks our way.
Once you’ve divulged your doubts and embraced the inevitables, Fear becomes fear and is easier to hurdle. You can acknowledge the risks, and run on this path anyway. Yes, you will get bruised, but at least you got off the park bench. Go ahead, stretch your muscles. Test your talents. Start feeding those instead of that What If monster. Who knows where it will take you? Maybe you won’t come in first, but it’s better than missing the race entirely.
Yes, you’ll most likely hear the recurring classics: Gonna Fail Now, Baby; Gotta Please the People; and Gettin’ Almost Perfect. They are catchy tunes that easily get stuck in our heads. But…it’s time. Time to face the music. Turn off the tune. Starve the monsters. Fill our heads with creative ideas, writing goals, feedback, research, contests, queries…even blog posts. The fear will not simply dissipate one day. We have to DO something. Get something else playing, going, churning, burning, chasing our thoughts and spurring us into action. No more Some Day. To-day.
The Fear chaser I keep in my mind is this truth:
For God has not given us a spirit of fear, but of power, of love, and of a sound mind.
2 Timothy 1:7
We are not alone as we stare down this sin. We do not have to let this Deadly Sin bind us. The Lord is with us as we pursue our dreams and feel pursued by fear. Chase? Yes. But also run – straight to a loving God who can chase away our fears and give us the desires of our heart.
My desire is to continue to write whatever God puts in my heart, that stirs my mind, that drives my hand to the page. He has instilled in me this passion that I no longer want to leave still. With God’s help, I will continue to be more than a conqueror in this battle with Fear.
In fact, it’s time to click the publish post button now.
Coming soon – Deadly Sin #2 – SLOTH – If I’m not too lazy to write it.
One Fish Two Fish Read Fish Blue Fish. It wasn’t long after this stage of reading that you began dreaming of writing your own clever yarn. You found the place Where the Sidewalk Ends and could not wait to compose your own prose. Since those Berenstain Bears days, you’ve had the itch to craft a story, tell a tale, smith some words.
You’ve scribbled notes, started journals, maybe even typed a few pages. Perhaps you’ve shared a poem or two with the fam, or told some stories to your kids. Or, quite possibly, the dream never even got that far. You’ve simply loved the idea of writing and spent years dreaming of writing ideas.
The problem is, the ideas never left the mental attic. The dust there is as thick as a Michener tale. You’ve tucked them away with the blanket statement “maybe someday.”
What is the roadblock on this journey to author status? What makes us stumble when we do venture onto the writer’s path? What is it we must battle?
Seven. Seven roadblocks. Seven stumbling blocks. Seven monsters out to gobble up our pens and pages and spit them in our faces.
As writers, we face Seven Deadly Sins.
Each offers unique temptations, traumas, and terrors. Some you may have already encountered. Some await on the trail ahead. Some will sneak up from behind, no breadcrumbs needed to find you. None get us where we need to go.
Over the next few weeks, I will define, dissect, and offer ways to destroy these Seven Deadlies.
We’ll first tackle the one that seems most rampant. It stops us dead in our tracks. We never even shake the dust off those ideas, much less pursue the life of writing we’ve long desired.
Why? We’re afraid.
Deadly Sins for Writers #1: FEAR
Watch for this post coming soon – if I’m not too scared to write it.
The definition of insanity is doing the same thing over and over again and expecting a different result.
The cause of insanity is doing the same thing over and over again.
This winter has put me in the shoes of Phil Connors. Bill Murray’s performance in this role makes Groundhog Day a classic in my book. I love the movie. I like living it less.
I feel like I’ve been stuck inside doing the same routine for about five months now, and that does not go well with my personality. Although I am very much a planner and like to be organized, I start to go a bit crazy if things don’t switch up every so often…in a controlled way.
From wearing practically the same seven outfits every week because nothing else is warm enough, to doing the same exercise routine too many mornings in a row because it gets me to work at the same time each day, to driving through yet another snow storm (even on the first day of spring!), to rehashing the same problems around me that have been going on for years…it’s gotten old.
As I mentioned in my previous post: If my joy is based in the weather, I’m looking to the wrong Son.
But, God has also revealed to me that part of the winter blues is simply boredom. So, in addition to prayer to stay focused on Christ and find joy there, I have made little changes, and plan to make more. I’m doing things to alter my surroundings, shake things up, and shift my focus from the winter routine. It’s surprising the difference small things can make.
- I did a different workout one morning – and a different one the next.
- I ate dinner at the dining table in my basement for a change of scenery.
- I checked my email while sitting in the basement, rather than my usual spot upstairs.
- I had pizza for dinner on a weeknight, even though that’s usually a weekend treat.
- I changed my commute by taking a different route to work. (and it turned out to be faster!)
- I started reading a new book.
- I made a list of Spring Spruce-Ups for my house I want to complete in the upcoming weeks.
- I wore a shirt that had been tucked away in my closet for a while.
- I am going on a two-night romantic get-away with my sweet husband.
- I switched my morning Bible reading from the middle of the Old Testament to Psalms.
- I wore a crazy green hat to work for St. Patrick’s Day.
- I went through my books and cleared off two entire shelves by selling and gifting books I no longer want or need.
- I went through my closet and donated any winter shirts I still hadn’t worn this season.
- I met a friend at Dunkin Donuts on a Thursday night – a time usually reserved for household chores.
- I plan to shift the focus of my prayers to include more thanksgiving.
- I blogged about feeling like Phil in Groundhog Day.
I also plan, with God’s help, to change my attitude. If you think about it, when did Phil’s fate change? When he accepted it and tried to make the best use of his situation. When he got the focus off himself and began loving and serving others. My hope is to do the same.
Now it’s your turn.
Better weather should be arriving soon. Maybe tomorrow even. But, maybe we can make today tomorrow.
My challenge to you is to share your seasonal secrets here.
Have you done anything to fight the Polar Vortex in its attempt to suck the joy out of life? Is there something you would recommend to shake off any melancholy mood that Jack Frost tries to bring with him?
What’s your Punxsutawney Prozac? Respond, repost, revive another reader’s spirit.
The low-tech status of my less-than-smart flip phone did not stop God from texting me this week.
Typed by the faithful fingers of a friend, it was sent directly from God’s hand. That is the only way to explain its impact. It was a direct and precise answer to prayer, with absolute perfect timing, and satisfied my thirsty soul. That is God at work.
Let me give you the details.
That morning was rough. I had been struggling with discouragement for a couple weeks. (More on that in another post to come. Just know for now that I had been down, realized that it was partly due to the eternal arctic winter we’re having in Chicagoland, and had reached out to some friends to ask for prayer about it.) As I went to bed the night before, my own prayer was: “God, I just need some encouragement, please. Send some encouragement my way.”
Already running a few minutes behind schedule, I felt anything but encouraged as I realized while heading out the door it was snowing – again. That meant yet another long scary stressful drive to my office 17 miles away. Maybe this does not sound far to you. Trust me, it is. It involves crossing a river over which there aren’t nearly enough bridges, a plethora of traffic lights, and multiple train tracks. In perfect conditions, it’s 35 minutes. I don’t like to be in the car even that long just to get to work. On a normal day, it’s usually 45 minutes. Although becoming all too common, that day was not normal. I knew I’d be in the car for a while. I knew I’d once again be nervous (let’s be honest) terrified about driving on snow and ice, scared to be moving, then frustrated when I hit traffic and stopped moving.
Combined with my already bleak state of mind, this 142nd storm of the never-ending winter was stealing any remaining joy from my day.
Grudgingly, I began my commute. A couple blocks into my drive, the radio DJ told me there was an asteroid headed toward earth. It would be passing nearby, she stated. Before she added reassurance that it wouldn’t be hitting earth, I had time to think, “Fine, maybe it will hit and put us all out of our misery.”
You could say my heart was not the healthiest it has ever been.
Forty-five minutes later, I had covered roughly eight miles, and was sitting still.
Filled with frustration and discouragement, I reached for my phone to text someone at work to let them know I would get there eventually. I planned to begin the text with “Have I mentioned I hate snow?”
But, when I opened my phone, I saw there were new texts. I had not heard my phone chime. Curious, I read them.
As gratitude and an amazing sense of God’s love for me filled my heart, tears filled my eyes.
I realize you will read the next few sentences and not be impacted as I was. They will seem like fairly simple words. But, they were the exact words I needed in that moment.
“Good morning, Kerry! Praying for u. Don’t let the devil steal ur joy bc it’s snowing out.”
“Praying God gives u the needed grace to keep ur eyes on Jesus today-not the snow or clouds or cold.”
It truly was like God sent me the text himself. It reached my soul.
Have you ever received a soul gift? This is my personal term for perfect presents. You receive a gift, and it’s like the giver saw right into your very soul, reached deep into your heart, plucked something out, and handed it to you. You wonder how they chose something so meaningful, something you may not have even thought to ask for yourself if making a wish list. I usually only think of the term in relation to gifts that come in boxes and bags. Now I know even a text can be a soul gift.
I was touched in so many ways. A friend cared enough to think of me, knew me well enough to realize what effect the morning conditions would have on me and know I would need some encouragement, said just the right thing to encourage me in Christ, and was praying for me. It also drove home the fact that God loves me so much, down to the details of putting that friend in my life and working through her to encourage me, just as I had prayed for!
The next 45 min were better than the first. (Yes, the total commute time was 1.5 hours.) I put on my Vertical Church worship CD and listened, sang, praised, and focused on God the rest of the way to work. I thanked God for reaching out to me through a friend. I thanked him for an answer to prayer. I praised the Lord for loving me.
I arrived at work with a better attitude than I had when I left home. I enjoyed the work I was doing that day. I was renewed with hope, encouragement, and joy in God’s love.
Why did I share this with you?
1. To give God glory by sharing what He’s done for me.
2. To remind you that God loves us so much.
3. To communicate the truth God continues to teach me this winter:
If my joy is based on the weather, I’m looking to the wrong Son.
4. To encourage you not to minimize the small things God prompts us to do. What may seem insignificant to you at the time may have an immense impact you never even realize. Let God use you to share His love with others in whatever way is needed in that moment. Your next effort could be someone’s soul gift. It might just be a text.
‘Twas the night before Christmas
and all through the house,
not a creature was stirring,
except for one mouse.
We children weren’t nestled,
all snug in our beds,
we were downstairs awaiting,
for that big man in red.
And I in my p.j.’s,
and Steph in Mom’s lap,
had just settled down
for a long winter’s nap.
When out on the lawn,
there arose such a clatter,
I sprang from the couch,
to see what was the matter.
Away to the window,
I flew like a flash,
tore open the curtains,
and threw up the sash.
When what to my wondering eyes should appear,
but some family and friends,
come to visit this year.
With a clunk and a honk,
they pulled up the drive,
and I knew our company
With packages and gifts,
and goodies they came,
and I waved to them,
not remembering all names.
Hello uncle, hi aunt,
hey cousin, and friend,
hi neighbor, hello,
hey Grammie, come in!
To the top of the porch,
and into the hall,
nice to see you all!”
As eskimos out in the
cold and white snow,
they gathered ’round the fireplace,
to warm up their toe.
We sat there and talked,
as their bodies warmed,
and around that hot fire,
those people did swarm.
And through all the laughing,
I still could hear,
the crackling of the fire,
that I was sitting near.
As I twisted my head,
and was turning around,
I saw my dad standing there,
not making a sound.
He was dressed in his robe,
from his neck to his knees,
and below his old robe,
you could see his footsies.
A bundle of presents
he had in a sack.
He gave one to all of us,
and received some back.
He eyes – how they twinkled!
His dimples – how merry!
His cheeks were like roses,
his nose like a cherry!
His mouth was spread out,
in a great big smile,
and he laughed, and laughed,
all the while.
A partial cigarette,
he held tight in his hand,
and the smoke, it encircled
his head like a band.
He had a broad face,
and a small round belly,
that shook when he laughed,
like a bowl fully of jelly.
He was funny and tall,
a right jolly old elf,
and I laughed when I saw him,
in spite of myself.
A stretch of his arms,
and a yawn from his head,
soon gave me to know
he was ready for bed.
He sat down on the couch, though,
and joined in on the talk,
and we sat there until
one or two o’clock.
And then it was time
for folks to go home,
so out the door,
they all did roam.
Into their cars,
they all took a seat,
and pulled out of the drive,
and into the street.
But I heard them exclaim,
as they drove out of sight,
“Merry Christmas, y’all,
and to you a good night!”
Kerry Nenn (Jones)
I am typing this on a laptop, to post to a blog, on what I like to call the interweb, so I am not completely behind the times. I do still have a dumb phone. It’s a simple flip phone, no data plan, no keyboard even, just calling (and texting, as of last year!)
I am repeatedly turned off by all the hype of the latest gadgets. I couldn’t care less if I have the latest and greatest in tech. Some would say I’m missing out. But then I see a video posted on facebook. It’s about the depressing fact that people are constantly on their phones and missing out on truly living in the moments going on around them. So, wherein lies the truth? Am I actually better off being low-tech?
A pet peeve that can really get my blood boiling quickly is for a person with whom I am attempting to spend time to ignore me or what we are doing to instead focus on a gadget. Turning their gaze to their phone, their laptop, their tablet, or whatever screen catches their attention, they are telling me that whatever we are doing together is not enough. Something on that screen is a more appealing use of their energy. They would rather be doing that than interacting with me. My urge at that point is to do one of three things:
1. Grab their gizmo and throw it outside.
2. Grab them and throw them outside.
3. Attempt to win their attention back by:
a. letting them know they are being rude or hurting my feelings
b. threatening to throw their gadget or them outside
I usually end up falling back on plan 3a. However, there are many times when I resort to #4. Feel a little sad, rejected, and lonely that the person whose company I desire must be shared with a screen, but say and do nothing.
I do realize that it’s often not simply a screen that is stealing that person’s time, it is another person. They aren’t simply playing a game, making yet another facebook post, or surfing the web. They are texting, emailing, or otherwise communicating with another human being. That does not make me feel any better. If you’d rather be interacting with that person, go be with them. Don’t stay here with me but ignore me. If that’s how it’s going to be, I’d rather be interacting with someone else too.
Yes, yes. There are exceptions. And, yes, I have been on my phone while I’m with others. There are hundreds of scenarios we could discuss here. But I am sure you realize I am not referring to checking the movie times in order to go to a show together later that day, or answering a text from a spouse asking when you will be home, or dozens of other legitimate or necessary distractions.
Yet, these can be done fairly quickly, and with explanation. Otherwise, the person you are with is left wondering what’s going on that’s more important than your time with them. It’s like you’re leading a double life – only half there with them. You are busy doing secret things on your device that they are not involved with for some reason. It’s like whispering in one person’s ear in a group of eight people. It’s just rude.
Would I be tempted more to do this myself if I were higher tech oriented? Possibly. Maybe it’s good for me to stay low-tech then. I doubt that will be possible for long in our society. When our iPhones are surgically implanted devices that communicate directly with our eyes, speech, and thoughts, it will be hard to escape.
Maybe I should just accept this new mode of interaction as norm, and not feel rejected and annoyed. Maybe I should try to be interesting or loving enough to keep that other person from turning to the screen. Maybe I should try to be more excited about the technology available to us. Or, maybe I should go all Sarah Connor and be prepared for Skynet.
Missing my dad today, on what would have been his 70th birthday.
I wrote the following not long after he went to heaven in 2010. I later included it in my book, Random Thoughts.
If I had known it was our last meal together
I would have let you pick what we ate
If I had known it was our last weekend together
I would have made it more memorable
If I had known it was our last conversation
I would have said something more meaningful
If I had known you only had time for one more song
I would have made sure to play your favorite
If I had known this was the last room you would see
I would have made it look nicer
If I had known it was the last chance I had to tell you what you meant
I would have made sure to tell you all the great things you did
If I had known it was my last chance to learn from you
I would have asked you to teach me more
If I had known it was the last time I would hear your voice
I would have asked you to tell me more
If I had known it was our last holiday
I would have made it more special
If I had known it was the last time I could pray for you
I would have prayed longer
If I had known I would not get to see you smile again
I would have tried harder to make you happy
If I had known I wouldn’t get to hear you laugh again
I would have asked you to tell just one more joke
If I had known it was your last birthday
I would have gotten you a better gift
If I had known how much you were suffering
I would have been more sympathetic
If I had known it was our last hug
I would have held on longer
If I had known it was the last chance to get to know you
I would have asked more questions
If I had known how much I would miss you
I would have treasured each moment more
In memory of Edward Lee Jones 11/14/43-5/19/10
Having been married to a teacher for 14 years, I have seen my share of less-than-useful teacher gifts. They are sweet, well-meant, and sometimes very useful (like restaurant gift cards.) But…really, how many coffee mugs do two people need? (Especially when neither is a coffee drinker!)
When my husband came home this week with his end-of-year gifts, I was pleasantly surprised to see a flower in the mix. It came in a small gift-wrapped container, and fit perfectly on our kitchen pub table. Nice, until…the next morning there was petal-filled cat vomit in the foyer. What IS the attraction for felines to eat things that simply make them sick? Ok, this thing is going outside! But…how and where? Planting a single flower in the landscaping seemed odd, and we had no pots small enough to work either.
Aha! Time to repurpose one of those old gifts collecting dust in the cabinet. I sifted through the shelves of coffee mugs, passing over the cute snowflakes, the oversized one that I love using for hot chocolate, and several others. On the top shelf was just what I needed! An extra-tall Christmas mug decorated with snowmen that I found more gaudy than endearing. Perfect.
With my sister’s help, and a few crafty supplies I had on hand, we made the transformation.
First, two coats of pretty blue paint. Bye-bye Frosty!
Once dry, I sprayed it with sealant. Then, we added a touch of flair from the mish-mash of floral pieces I have left over from previous projects. This included a flower that I painted yellow, to help it really ‘pop’ on the blue.
I dropped a few rocks in the bottom, to add some heft against the winds on our patio. Then, the final touch – insert flower!
My new coffee pot!
Slip into the mind of a sixth grader and travel back with me to 1989. The world watched as the Berlin wall fell, while my health crumbled more privately, life-threat unseen…
All I knew was I was in pain. A lot of it. It was a huge pain in my small chest. At age 11, I had felt nothing like it before. From the front of my chest through my back, it hurt. The other problem was my upset stomach. I’ve never been a fan of throwing up, but I sure wanted to then. It would have been a relief that morning, better than the ongoing queasiness and dry heaves.
I went to Mom.
She let me lay down in their bed. She tried to help my stomach by giving me some coke mixture stuff that I’ve since decided no kid should ever be subjected to. Nasty. Then, in response to my begging, Mom rubbed my back to try to relieve the pain. She says she knew something was wrong when I not only wanted to stay home from school, which was almost unheard of, but I asked her to stay home with me, which was unheard of. She called my pediatrician to get me in that day.
The next memory I have is at the doctor’s office. The challenge: We had to go from the waiting area down a hall to an exam or x-ray room. It was most likely a 20 to 30 foot journey. Whatever it actually was, what the eyes providing sight to my failing body saw was a 26.2 mile-long hallway they expected me to walk down. Are they kidding? I’m never gonna make that. But, with my mom at my arm, we somehow made it.
An exam and chest x-rays later, the doctor said we needed to get to the hospital. Everyone seemed very concerned. I just knew I still felt horrible. I was not very alarmed until I was asked the next question. Apparently, the doctor had said to go straight to the hospital, and had even said I could go by ambulance. So, one of my parents asked me if I wanted to go the hospital in the ambulance, or, they said, they could take me in the car.
My internal response: Ambulance? I need an ambulance? What? Those are for people about to die. Why do I need an ambulance? What’s going on? Ambulance?
My external response: No, I want to ride in the car with you.
Next: Laying in the back seat of our family car, safe from the ambulance ride.
Then: At the hospital. I’m told I have to have surgery the next day. I have a tumor in my chest. That’s why it hurts. They need to remove it.
That night: The nurse watching over me noticed I was having trouble breathing. I was rushed to the ICU where they had to quickly drain the fluid out of my chest. Due to the stress the tumor was putting on my system, fluid was building around my heart. Much later, I was told that if the nurse had not noticed when she did, the fluid would have stopped my heart shortly after.
At the time, what I knew was there were lots of people zooming around my bed, lots of bright lights, and lots of needles. They just kept poking me and saying they could not get a vein for an IV. In my mind I’m screaming at them to stop – can’t you just do it once? Stop poking me!
Then, morning: Rolling down a hall in my hospital bed, the foot turning toward some big double doors through which they wheeled me. I was headed into surgery. The bed was stopped. Lots of people around me.
My thoughts: Would someone please just hold my hand? I think it will all be ok if someone will just hold my hand.
Someone did. How did they know?
Then: A mask over my face that put a terrible taste in my mouth. Did I have bad breath? I tried to say something. I motioned for someone to remove it so I could talk. I told them I think I could taste my bad breath inside the mask. They just smiled and put it back on. What, no one else in the mood to joke around?
Then: A whirlwind. ICU. Tubes, tubes, and more tubes. Couldn’t talk, tube in my mouth. Couldn’t move, tubes in my side. IV in my arm – right only since my left one was all swelled up. I sure didn’t feel any better than I had the night before.
My mom, telling someone the tumor was “buh-nine.” What’s buhnine? Is that bad? She seemed ok with the news, but teary-eyed, so it was hard to tell. I couldn’t ask.
Lots of poking and prodding.
Motioning for a pen to communicate.
People in and out.
I felt gross.
The order things happened, I couldn’t tell you. I know they took the tube out of my throat at some point. Then I had to use “the black thing” which I dreaded at first then ended up asking for later. It was a big black plastic balloonish bag. The end went in my mouth and helped suck the stuff out of me when I felt like I was drowning. It hurt at first, then provided relief. I also became very acquainted with breathing exercises. I had to suck on a plastic tube that was connected to these cylinders with balls in them. If I sucked hard enough, I’d pull the balls to the top of the cylinders. I could barely make the first one move. My left lung had collapsed in surgery. This exercise was supposed to build it back up.
I also learned a new word. Teratoma. It was the type of tumor, made up of many different types of tissues, they had removed from my chest, around my heart and left lung. They suspected it may have been present my entire life, and just kept growing, undetected, until it was so big it finally affected my body functions. I also heard the theory “absorbed twin.” Much later, I even got to see a slide of the lumpy masses that had been removed from me. I could’ve lived without that.
I remember the ever-changing IV. They seemed to have to switch the location every day. But, they could only put it in my right side because something had happened in surgery to swell up my left side, and they couldn’t risk it. I still don’t understand all that. As a lefty, I was just glad to have that arm free of tubes.
My pastor came to see me a few times. Poor guy – every time he’d come they had moved my IV. He’d go to put his hand on my arm or hand for comfort or prayer, and I’d wince in pain because he’d hit the needle. He’d remember and stay clear of that spot next time, but it would be moved again. He finally decided during one visit to stay at the foot of my bed, away from all the machines and tubes, and patted my foot. Of course, they had used up all the spots on my arm by then and had put an IV in my foot! Ouch! I still appreciated the visits and prayer.
Another “visitor” I enjoyed was my favorite ICU nurse, Donna. She was so nice. She brought me jolly ranchers. I hadn’t eaten a real meal for days, much less good junk food. Man, candy never tasted so good. My dad said I smiled so big with that candy swishing around my mouth. They couldn’t believe how happy I was.
Donna also helped me get through my cat scan ordeal. She showed me a BIG white cup, filled with yellowish fluid. I think I had to drink it all to make my insides glow so they could see if everything was ok in there and if they’d gotten all of the tumor. I drank. She encouraged. It was so nasty. That coke mixture from my mom seemed like nothing now. I choked it all down. Then, she told me the bad news. There was another cup of the same XL size that I had to drink. What? Really? You can do it, she told me. I got ¾ of it down and felt terrible. She said that was enough.
I was wheeled to the tube machine. It was big. I had to pee. I was told the test would take a while. I told one of the nurses I had to go. She said I should just go and they’d clean it up later. What could I do? I was too sick and weak to hold it for who knows how long. Embarrassed to be wetting the bed, not believing I was actually doing such a humiliating thing, I went – part of me disgusted with myself, part too sick to care.
It turns out, they got all but about 2% of the tumor. I think they told us that right after surgery, and this scan was just a follow-up. My surgery had lasted six hours. I found out later they almost lost me twice. I guess the part that remained would have been lethal to remove. 2% – is that good? Should I worry?
I remember getting my hair washed. I had been lying in my ICU bed for days and felt nasty. I had long hair, and it felt so greasy. My mom, with help from someone else, maybe my second favorite nurse, Susan, washed my hair while I lay in bed. It felt so good. I was ever so grateful and felt much better afterwards.
I remember finally venturing out of bed. The goal was to make it to a chair next to my bed and sit up for a while. They called this progress. Making it more complicated were the two drain tubes still stuck in my side, attached to a VCR-sized box that had to be moved with me. I did it. During one of these successful ventures, I got to stay up “late” in my chair (late for a hospital – I think that’s 8 or 9pm – wow!) watching Goonies from a TV/VCR cart they had rolled in for me. That and the jolly ranchers were the highlights of my ICU stay.
After 11 days in ICU, I was finally promoted to regular room status. I was in a bed closer to the door at first. I remember being closer to the window later, so I may have switched rooms at one point, or just sides. That part is a little muddled.
I had at least one roommate during my stay. I only remember one anyway. Although, it’s not the kid I remember, but her grandma. She said she made stuffed animals out of kids’ blankets once they outgrow them or become too tattered to be used. My own yellow blanket (renamed “wooby” from “lallow blanket” after I saw Mr. Mom) was tucked safely by my side in the bed. I wouldn’t be surprised if it even rode to surgery with me, but I’m not sure if it did. I couldn’t imagine ever giving it up to make an animal out of it. What was this lady saying? I told her I couldn’t do that. She said someday I’d change my mind. (And yes, I do realize I was in 6th grade and still had a security blanket. So sue me.) The worn and tattered remains of wooby (and there’s not much left, even to make a very small animal) are still in my spare room closet.
I had quite a few other visitors. My teacher came to see me, bringing along her son, who was in my class. She was a great teacher. I felt kind of bad her son had to come. I knew she had probably made him come and could tell he didn’t want to be there. Neither did I. My little sister also tried to visit me. The tender eight-year-old got sick to her stomach seeing me like that though – all the tubes and everything. She couldn’t stay. I don’t think she ever came back after that experience. That was ok though.
However, it was very nice to have visitors. The days (and nights) are so LONG in a hospital. Which brings me to one of my biggest frustrations of the experience. After hours of laying in bed, unable to sleep due to discomfort, you finally drift off, only to have the evil doctors on their rounds at the crack of dawn wake you up to see how you’re doing! What?! I’d be doing a lot better if you let the sick patient get her rest! It was a conspiracy – keep them sick from lack of sleep, more money for us. I remember simply pulling the covers over my head one morning when they woke me up. Who wants to wake up to a group of white coats staring at you, ready to poke and prod you? They laughed at my reaction, but I didn’t think it was funny. I’m sure they thought “Oh, a little kid being cute.” Boy, was I mad. I could have shown them a new technique with that stethoscope of theirs.
I did like my surgeon, Dr. Tracy, but the others I grew to dislike. They seemed to be determined to keep me there forever. The days passed like an eternity.
There was one doctor I really came to dislike. His name is gone from my mind, but I can still picture his face. Thin, with glasses and short dark hair, and, of course, the white coat. I’ll call him the Bad Doctor. He was the one who had to put a more semi-permanent IV line in my shoulder – right side of course. I guess they really had run out of options in my arm. He had to stitch it in. I remember something happened and he had to redo it later. I think the stitches pulled out? It never was comfortable – always hurt a little. I was sure the guy didn’t know what he was doing. Meanwhile, the tips of my fingers were sore from the seemingly endless nurse visits to prick me for blood. My poor fingers were black and blue. Leave me alone!
Later, the Bad Doctor was also the one put in charge of removing those drain tubes from my left side. That sure wasn’t a fun time either. He told me to lay on my right side. He would be pulling them out. He said it was important to lay still and hold my breath while he did it. I’m not sure of his exact wording, but something he said had me convinced that if I breathed or moved wrong my lungs would deflate and whoosh out those holes and I would die. Fortunately, it didn’t take too long. Whew. I made it. And now I was free of that box and tubes. One more step toward freedom.
They also checked on my incision regularly. Since the tumor was more on the left side of my chest, they went in from the side for surgery. The scar runs from partially under my left breast, around the side, and under my left shoulder blade. Because it was right under such a mobile part of my back, the shoulder blade movement caused the end of the incision to be much wider than the rest. It ain’t pretty, but I’m alive. Seems like I heard the word staples once. Did they say I was stapled shut and they’d dissolve inside me? What? Am I going to burst open? Do I have stitches to take out? All I knew was they checked it and took care of it.
Valentine’s Day arrived. I didn’t get to go to my class party. All the kids sent me Valentines though. They also made a huge card from everyone. I still have it. I remember my friends Kerri and Angel being there to deliver the cards. They were all grins and giggles that I got one from my crush that included the words “I like you.” They were all aflutter that he cried or at least teared up at the news about my serious condition. According to them, he started getting teary eyed and said it was hard not to cry when everyone else was. They were sure love was in the air. I thought he was simply a nice guy and friend who cared.
I enjoyed all the cards. Between regular get-well stuff and Valentine’s Day on top of that, I had lots of cards and presents. My class also got me a huge stuffed dog, dressed with ribbons and a pretty straw hat. The dog currently rests on the spare room bed, and her hat hangs on the front door during spring and summer. Some of my dad’s side of the family got me a basket of silk flowers. When my dad told me they were getting them, for some reason, when he said silk flowers, I pictured a huge bouquet of shining sliver flowers, with long silver stems. They would be grand and glistening. I think it had to do with the way he told me, sounding very excited and somewhat awed at what they were getting. When I finally saw what arrived, a cute white wicker basket filled with pretty pinks, whites, blues, and greens, I was very surprised and a little disappointed. The nursing staff gave me a baseball stuffed animal with all their signatures on it. Someone (possibly my Uncle Jack?) brought me a stuffed gorilla wearing a home-made nurse’s hat. Those are both on my stuffed animal shelf today. One of the second grade classes at my school got me a stuffed cat wearing a cute lacey vest and hat. I was so touched. They had collected the kids’ nickels and dimes each day and gotten me the gift. That one is on the shelf in the spare bedroom too. Someone else got me a short robe to wear over those less-than-private hospital gowns. Still have that too.
Once, I had a strong craving for chicken McNuggets. My aunt Skeeter was coming to visit, so my dad asked if she could stop and get me some. When she arrived, I think it was nearly two hours later. She said she had trouble finding a McDonald’s. Then, after all the hassle on her part and waiting on mine, I couldn’t even eat all six. It was either a problem with a loose tooth, or an upset stomach, or not being allowed food after a certain time due to a test the next day. Whatever it was, I was pretty disappointed not to get to eat them, and felt bad for the trouble.
I do seem to remember losing a tooth during my stay. Are kids still losing teeth at age 11? Seems old. I can’t remember if the tooth fairy found me in the hospital. Probably did though. I think one of my parents stayed in the room with me most, if not all, nights. Anyway, I was eating fried chicken at the time. So, that fried chicken meal was disappointing too. It was one of the few meals that actually tasted decent, and I was having a hard time enjoying it because of my tooth. Hospital food – quite an experience in itself. I did get some enjoyment out of circling my meal choices on the menu each day. It’s the little things in life.
I remember walking up and down the hall with my dad and my IV pole. It seemed to be taking forever to get my strength back. And to think I had just participated in a fundraising jump-rope-a-thon, Jump Rope For Heart, not too long before all this started!
Once I was more mobile, though, the itch to get out of there hit even stronger. I wanted to go home so bad. I wanted to go to school too! But, sigh, they wouldn’t let me out. Once I had reached the point of recovery, they kept coming up with excuses (so I thought) to keep me prisoner there. I had to finish some antibiotics. I had to have a normal temperature for three days straight. They told me three times I could go home the next day (or so I understood anyway) and then, when tomorrow came, I was told no, you have to stay another day after all. Of course, it was the Bad Doctor telling me this. Meanie! I was so devastated each time. Let me go! Look, I can make those balls go all the way to the top of the cylinders now! See? I feel fine. Let me out!
Finally, the parole board granted my release. It had been 11 more days since my move from ICU. I was free! We gathered up the balloons, flowers, cards, and stuffed animals and headed home.
I went and visited my class at school. I’m not sure if it was that day or maybe the next. My classroom was all the way on the third floor, and I remember I was panting as I entered the class. It was great to see everyone though!
I had to bring a pillow with me to school for a while, however, to sit on those hard chairs. I have not mentioned this part of the experience thus far, for it is the most embarrassing portion. Yes, worse than wetting the bed. In addition to the multitude of other discomforts I had to endure, I had a sore on my tailbone. It developed right away, so it’s hard to call it a bed sore. They suspected it was partly because of the swelling and trauma from surgery. So, laying in bed was even more uncomfortable for me. And, on top of regular dressing changes on my incision, I had to have my hiney cared for as well. It was so frustrating. The added discomfort and the fact that, after I was fully recovered from the surgery, this one thing hung on for a few weeks longer. I had to sit on a pillow. I had to have my bandage changed. My mom and grandma took turns for this duty. It’s not an area that’s easy to reach on your own. Let me tell you, that’s a pretty low-down experience, laying on your stomach in bed, having someone else put cream on your bum and bandage it for you. Yuck. That, too, eventually healed up though.
My follow-up visit with the surgeon went ok. More chest x-rays. He couldn’t believe I still had a small adhesive pad stuck to my side. It was for applying the bandage tape to, so it wouldn’t be harsh on my skin every time the bandage had to be changed. But, it was also adhesive, and would hurt to remove it. I had refused to let my mom rip it off. He noted I didn’t need it any more. I no longer had a bandage on my incision. He had to hold my left arm up out of the way with his head, since I kept trying to pull it back down, dreading the sting of removing the pad. He quickly took care of it – like a bandaid – one quick rip. Ouch!
I remember we had brought him his favorite candy bar. I don’t recall which one it was now, (Butterfinger maybe?) but he had mentioned it during my hospital stay. My mom bought him two, I believe, for I remember her letting me give them to him during that follow-up visit. I was very excited, and had them hidden in each hand behind my back. I brought them out with a flourish – “Here you go!” Some other staff saw and laughed. I was embarrassed, not sure if it was dumb or fun. Hopefully he thought it was nice though. I couldn’t tell at the time.
We were told I needed to come in every six months for x-rays, to ensure that remaining 2% wasn’t a problem. They were also concerned about my diaphragm, which had been partially paralyzed in surgery, possibly posing a problem. I remember the word “floating” was used. I got the image of a rubber-band-looking diaphragm floating up into my lungs and ribs and getting tangled up. I’m not sure how accurate that picture was.
Future x-rays revealed no problems, and even showed good diaphragm activity. I continued with follow-up for two years and was then released with a clean bill of health. They had no concerns of future problems from this ordeal.
I just turned 35, so I guess they were right. I still have the memories, and the scars. There are times when I’m self-conscious about the latter. They’re usually not visible though, and they are better than the alternative. There are other times when “2%” comes to mind, like the time my esophagus spasmed and the chest-to-back pain was all-too familiar. It was not Return of the Tumor, however, just bad eating habits. Note to reader – don’t throw down several glasses of acidic lemonade on top of a very full greasy meal. The result could be an esophageal spasm, which feels like death in your chest.
I am currently healthy. And grateful. I’ve had no further problems from the tumor or surgery. There were lots of people praying for me back then. Thank you, Lord, for pulling me through. Thank you to everyone whom He used to support me and my family during that time, to the skilled doctors (even Bad Doctor,) the nurses, the pastors, the family, the friends. Thank you, Lord, for my life. Thank you for 22 days I will never forget.
This sketch, based on a photo of me at age 2, was drawn by my dad, Edward Lee Jones, 11/14/43-5/19/10. Remembering him today, and his many talents.
In addition to displaying artistic ability, he could:
- keep a household appliance or family car running long after its natural life.
- be a real-life MacGyver and create whatever was needed for a situation out of whatever he found in the basement. This includes the best mouse-trap vehicle my seventh grade science teacher had ever seen (until he saw it again three years later when my sister had him too.)
- fill a room with laughter with his constant joking or the retelling of a crazy childhood story.
- entertain us with his guitar picking. His acoustic guitar was always propped in a corner of the dining room. While he didn’t have any formal lessons, he had picked up enough to strum a few cords and play a handful of songs. Jimi Hendrix or Elvis, no, but it’s still a fond memory.
- act as chauffeur, ATM, handyman, pool boy, baker, comedian, nurse, musician, and father all in one day.
- make his daughter feel very loved.