Ten Lessons I Learned When Life Tried to Drown Me – Part 1

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Without a doubt, 2016 tried to kill me.  On December 31, my match was lit and ready to set that calendar on fire.  I vaguely discussed some of the challenges of that year in this post last January, expecting (OOPS! – see #5 below) that 2017 would be the BEST. YEAR. EVER.  I thought everything would fall into place last year.  I thought things would change and the world would start to make sense again.  Plus, I totally deserved to win the lottery or something after keeping my head above water during the year that nearly drowned me.  And life usually gives us exactly what we deserve, right?  (Bwahahahaha!  I may have just laughed so hard that Diet Coke came out my nose . . . )

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In reality, what life often gives us feels a little more like this . . .

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Truth be told, the past year was better in a whole lot of ways, and I wrote about a few of the highlights on the blog throughout 2017.  But I’m still in the midst of a difficult divorce, and I just learned that the school where I’m working must close, so this post  would be a big fat lie if I did not say this: I didn’t win the lottery in 2017.  And my joy, as refreshing as it was to rediscover it, was often still entangled in a web of uncertainty, disappointment, and hurt.  It turns out that flipping a page on a calendar (or burning the whole thing to ashes . . . ) doesn’t really fix everything, at least not instantly.  But one thing is for sure: I’m supposed to learn something from these experiences.  The years that tried to kill me have taught me that there is beauty in the tremendous growth and wisdom we gain when wrestling with unexpected challenges.  Here are a few more lessons I’ve learned from my WWE match with life.  (By the way, I think I may be winning . . .)

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1. Stop apologizing already and use your village.

Humans were designed to live in communities, both physical communities and social ones.  Individually, we are unable to compensate for our own weaknesses, but together the gaps created by one person can be filled by another until there are no gaps left in the community at all.  That’s a beautiful thought, right?  And you aren’t weak because you have a need.  You’re just human.

But human nature also makes us act a bit like toddlers, little kids who want to do everything independently, even when they aren’t really capable.  They want to pour the gallon of milk that they can hardly lift off the table.  They want to tie their shoes before anyone has taught them how.  They want to swing the bat their way and dunk the ball in the hoop despite being only two feet tall.  For the grownups, it’s maddening.

We cringe at that behavior, but think about the crazy things we do just to prove that we can do them.  We consider it an accomplishment to handle everything on our own.  We drive ourselves to the emergency room when we are practically dying.  We try to manage impossible schedules without asking another parent who is going to the exact same place to give our kid a ride.  We agree to things that we don’t want to do so that we won’t look incapable of juggling one hundred and fifty seven responsibilities at once.  Seriously, it’s ridiculous.

If you are lucky enough to have handled everything on your own until now, you win a . . . well, nothing actually . . . but, really, that’s pretty amazing.  Still, I will advise from experience that you should start building your village today because everyone gets caught in a storm with no umbrella eventually.  (Or wakes up seriously sick with a kidney stone in the middle of the night . . . We all have our own issues . . .)

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2. Don’t just sit there and expect people to build a village around you.

I once read a string of comments on the Today Parenting Blog in which some moms lamented that neighbors aren’t thoughtful anymore and that people with a caring village are just lucky and that no one ever helps them when they need it.  Now, maybe these ladies live in towns where everyone looks a bit like the Grinch and no one shares a casserole anymore, but I find that a little hard to believe.

I find that a lot hard to believe, actually.

Remember the famous line from Field of Dreams?  The voice that Ray hears over and over as he envisions his own baseball diamond says, “If you build it, he will come . . .”   So he builds it, and people come.  Even ghosts come, for goodness sake.  Most of us aren’t interested in attracting dead baseball players, but the advice is solid: The magic is secondary.  First, you have to do the hard work.

If you don’t have a village, start by envisioning the community you want to create.  What kind of friend are you wishing to have in your life?  Then – and this is the secret that the ladies I mentioned above may have missed – YOU HAVE TO BE THAT FRIEND.  You have to make the first move.  You have to start the conversations.  You have to help the mom who looks frazzled.  You have to notice the stressed out woman and buy her a coffee.  You have to invite the neighbors over for dessert.  You have to show up when it is totally inconvenient.  You have to send a card to someone who needs a lift.  YOU have to lay the foundation for the village that you want to live in.

If you build a baseball diamond, baseball players will find it.  (Maybe not ghost ones, but ghosts are creepy anyway.)  And if you build a village that starts with you being the kind of friend that you want to have, then you will attract the kinds of friends you are looking for, too.

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3. You can survive more than you think you can.

You know all those people who have overcome huge challenges only to move forward and contribute to the world in positive ways?  You read about them or see them on television, and their optimism and fighting spirit seem superhuman.  Their stories are uplifting and really do motivate us to be better and stronger and more hopeful than we were before.

But at the end of the day, they’re people, not superheroes, people like you who are just trying to make something good out of an otherwise crappy situation.  Hopefully, you would do the same thing, too, if you were faced with a similar adversity.  And although your resilience would inspire others in really wonderful ways, you probably wouldn’t feel all that inspirational – because moving forward after a crisis really just feels like, well, survival.  You have the strength to survive hard things, too.  You are no different from those people.  You have the power to thrive and to inspire others and to make something good come from your own despair.

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4. It’s important to stay busy.  But not too busy.

Balance may be impossible to achieve, but it’s certainly something to aim for.  This is especially true when you are faced with hard times.  Unfortunately, many people who encounter scary hurdles resort to extremes – either staying so busy that they never face their problems and emotions, or isolating themselves so much that they are more apt to sink into a very dark place.

As Winston Churchill famously said, “If you are going through hell, keep going.”  The danger of standing still, of course, is that you will never come out on the other side.  Spending time with friends and family, contributing within the community, and finding your bigger purpose can help you to feel contentment and joy.  But quiet time for reflecting, reading, journaling, connecting with your faith, and talking privately with close friends is also really, really important in order to move forward.  It’s okay to give yourself time to process and time to be alone, just not too much.  I’m still seeking this balance.  So should you.

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5. Your expectations will shape your outlook.

One of the greatest barriers to finding happiness after a loss is accepting that your life no longer looks like the photo-shopped image of the future that you had already plastered in the album in your head.  It can be very, very difficult to let go of the expectations you had for today and for the future so that you can appreciate the beauty of what you actually have – which is still probably pretty awesome in a lot of ways.  And the longer we hang onto expectations that are no longer realistic, the more time bitterness and anger have to make themselves really cozy in our hearts.

During a run this week, I tripped on an uneven sidewalk and skinned myself up.  It was totally embarrassing, and, DANG, a skinned knee hurts more than I remember!  (So sorry, kids, for telling you to suck it up . . . )  While I was bandaging a few scrapes, I inadvertently knocked my phone in the water.  So my kids came home to a limping mom with a bag of ice in one hand and an iphone in a bag of rice in the other.  “You had a really bad day,” they said.  And I probably should have felt like I’d had a horrible day, but I didn’t.  (Disclaimer: I definitely can’t say that I always handle situations like this so calmly!  I nearly threw my computer out the window just a few minutes ago when the wifi stopped connecting. . .)  Here’s the thing.  When you stop expecting life to be perfect, some of the situations that might have seemed tragic in the past lose their power.  And sometimes overcoming some of the bigger problems in life brings a healthier perspective to the smaller issues and helps you to focus on the positive.

It’s important to have hopes and dreams, to work hard to achieve those, and to maintain high standards for your life, but make sure that your expectations aren’t setting you up to be an unhappy person.  Accept that life isn’t perfect.  That you can’t always have what you want. That people will make mistakes.  That things will happen that aren’t fair.  That you can’t predict the future.  All of that sounds pretty bleak, right?  It really isn’t.  Life is full of wonderful things, as well.  But these truths are, well, REAL, and we often prefer to live in the pretend rather than in the reality, which creates unnecessary disappointment.  Expect problems to happen, because that is just life, but also recognize that the overall quality of your life isn’t determined by a single problem, even if that problem is a big one.

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You can read Part 2 of this post here!

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*Pictures created using Bitmoji.

 

What It Feels Like to be the Son of a Father With Dementia

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Grab a tissue, my friends.  I swear that my goal at Still Chasing Fireflies is not to toy with your emotions, but this What It Feels Like series is definitely going to bring out ALL the feels.  Last week, my husband and I were hundreds of miles apart while he was in Chicago for work and I was visiting family.  When we finally reunited, he dropped a bomb on me; he had been secretly writing this beautiful post about how it feels for him to watch his own father battle dementia.  Oh. My. Goodness.  I could hardly edit and post this on the blog through my tears. 

Love on your dads, people.  Please.  Now.  Do not wait.

Like many other young children growing up, I believed my father was one of the strongest, smartest, goofiest, hardest working men I knew. He could do, and fix, anything. But those qualities weren’t always the ones that meant something to me as a child.  I valued when he would get on the ground and wrestle with me.  I still remember the feeling of his scruffy face once in a while and how he would use that as a laughter-drawing weapon on me during the match.  

I remember how he would sit and work out floor plans for houses and buildings using my architectural building blocks on our end table in the family room.  He taught me what lintels, copings, rough openings, and many other construction terms meant, simply by playing with me and those blocks.

I recall him being excited to show me his design for our club house, walking me through the drawings and dimensions. I should note that my passion for construction and design began at a very early age, and my father played a critical part in that. Not sure he meant for that to happen, but he seemed to enjoy that I liked it.

As time moved on, he and I worked on my first car together, having the carburetor rebuilt so we could replace it, hoping it would help me get something more than 10 miles per gallon.  (It’s a good thing gas was .95 cents per gallon then; I didn’t want to spend all my paper route money on gas because I needed some for actual dates!)  I probably wasn’t the best mechanic, and I am sure I complained about holding the light for him more than doing any actual work myself.  But we got the job done.

That was also about the time my father invested in the family boat, well, Jon Boat that is, for fishing.  I had the pleasure of being one of the first passengers during the initial shove off from shore, and, well, it floated.  And that…was…about…it. Many minutes later, we finally got the motor fired and we were off.  Off to find the catch of the day. Or, in my case, to put my favorite mix tape in my Walkman and catch some rays.  You see, fishing was something my father and I didn’t have in common.  He enjoyed the outdoors, and, well, I enjoyed the cities.  

And so the distance between us grew.

It was close to the end of my senior year, just a few more weeks remaining in my basketball season, when I came home from practice to find my father in the driveway washing the family car.  For anyone else, this may have seemed perfectly normal.  But not for my father.  You see, my father worked the 4 to midnight shift most of my life.  He was either sleeping or working when I was home.  On this day, for him to be home at this time didn’t add up.  And it wasn’t good.  He had lost his job at the age of 54, just shy of age 55 – the age when he would have been able to collect his full pension.  This was the mid 90’s, before age discrimination was something to litigate. This event was crushing for the family.  With a wedding for my sister that summer and my desire to go to college, and without another full-time income in our home, life was about to get difficult.

However, that moment in time changed everything for me.  Watching my dad handle the issue with integrity and seeing him take on anything and everything to keep food on the table taught me to do the same.  But it also drove me to focus. I knew I was going to spend the rest of my life working hard and chasing my dreams, following my passions, and living the life I want.  

So after graduating from high school, I worked two jobs while attending a local community college to earn a degree and the credits necessary to transfer to a larger school.  After my first year at Kent State, I was accepted into their school of Architecture.  There was one caveat; I had to go back to Kent for Summer Studio immediately. The day I left for college was Father’s Day, 1997.  My father, who in my first 20 years rarely shed a tear in front of me, cried that day after commenting about me heading off to start the program and knowing I wasn’t going to be coming home for the summer.  I’m not completely sure if the tears were sadness or if they were happy tears because I was fulfilling my dreams, but it was a rare occasion either way.

There were many times during my college years that my father would talk to me about how he never really got to do what he wanted because he wasn’t that great in school.  He would end up working odd jobs during the semesters just to survive rather than studying.  I believe that he told me these stories to encourage me to never give up, to trek on and fight for everything I wanted to achieve.

So why am I telling you about these memories of my father and me?  Because he can’t, not anymore.  You see my father was diagnosed with dementia, and he sometimes forgets how many sons I have, or our names, or what I do for a living. He forgets where he is and why he is there, or if he has even eaten.

Watching this awful disease progress is like watching the sand on a beach fight the ocean tide. As the day passes, the memories of those footprints, sandcastles, motes, and all the fun experiences that occurred on the beach are erased.  With each new day, the experiences in the sand begin over.  There is no remembrance of what happened the day before.

My dad has memories, but they tend to be from further back in his life, not many from us as a young family. Mostly he reminisces about his days in Vietnam. And as the tide of his mind rises, and then regresses, the same stories begin again.  This happens many times during an hour.  So you sit, and listen to the same stories again, just so you can spend time with him.  Or you find yourself fielding the same questions, over and over again, trying with all your energy to stay relaxed and not show frustration at this horrible disease that is not his fault.  Often you find yourself fighting internally with the pure instinct to avoid the visits rather than see a man struggle with this relentless disease.

There are times when I am working on something at home and I am struggling or need help, and I think I should call my dad, like I use to, because I know he will know what to do.  But then I instantly realize that this isn’t a possibility anymore.  It hits you like a champion boxer just set you up for his patented left jab and right hook combo.  The man who could have done anything, who could have taught you anything, who was there to show you how, is no longer available for you in this capacity.

Sure, he is here, but not all of him.  You wish that you could call him and work on some projects in the yard or in the house together.  You wish that he enjoyed sports like you do, or that you liked fishing so that you could spend some time together doing things you both enjoy.  But most of all, you wish he could remember that he gave you some of your best qualities and made you who you are.   

This is what it is like being the son of father who has dementia.  You are not completely sure WHAT he remembers.  You are not sure IF he remembers.  You are not sure HOW MUCH he even knows about what is really happening to himself.

So I will add some gravel and Portland cement to the sand on my beach and set my memories in concrete for both of us, until one day those memories may very well erode away for me, too.  But until then, my father will always be the goofy, scruffy-faced wrestling superhero he has always been to me, preserved in my memory until the waves finally win the war.

Thanks again to my husband, Ryan Ware, for sharing this post with all of us.  It wasn’t easy to write, I am sure, but sharing our hard things can help others and maybe even heal whatever is hurting us, too.

Do you have a story to share in this series?  I think you do.  You don’t even have to write it yourself.  I can help!  Just let me know what’s on your mind.

Finally, it’s Father’s Day!  We love you, dads!  Happy Father’s Day to my own dad, Kenny, and to all the other dads out there, including my husband, my father-in-law, and my grandpa, too.   

Be sure to show your dad some love this week, and watch for the next post from Still Chasing Fireflies!

 

What It Feels Like To Have a Stroke at 41

EVERYONE has a story, and I am SO excited to share this story with you today.  Let me introduce you to my friend Kate. She is an amazing mother (our sons are close friends), a talented photographer, and a very creative spirit.   She was also shocked several years ago when she learned that she had suffered a stroke at only 41 years old.  Today, Kate is thriving despite the ongoing challenges of stroke recovery.  She is doing so well that she even wrote the first GUEST POST in Still Chasing Fireflies‘ “What It Feels Like” series where she recounts the days immediately following her stroke.  I am SO GRATEFUL that Kate is kicking off this series on the last day of Stroke Awareness Month with a very important message, a message that just might save your life.  Please share Kate’s post with everyone you love!

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Kate’s self-portrait today

I hope Kate also inspires you to think about your own story.  What is YOUR story?  What moment in time will live with you forever?  What experience have you had that others may not understand?  Please consider sharing it with us!

Here is Kate’s story.

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One of Kate’s brain scans

It was mid-morning, Friday, November 9, 2012. I was still wallowing under the sheets when the heavens slapped me with a streak of sunbeam on my face beckoning me to get up. I knew it was about time for me to get out of bed, but the sheets were warm and the sickness had been going on for 2 weeks then, transforming my once sanctuary of a bedroom into an infirmary. But soon the situation would change. I would no longer be living in ignorance because the mysterious affliction would be given a name. And the name would change me forever, kidnapping me from that bliss of an unconscious life to an overdue time of reckoning. 

 I had yet to feel the temperature outside that morning, but peeking through the window I saw the trees sway as the technicolor leaves danced in the wind, so I imagined it was crisp and cold. The sky was sunny and bright and inviting, so for all intents and purposes, the day should have been a fine day to be productive. But I was unable to rid the pounding in my head. No reason to get out of bed that morning, I argued, figuratively and literally. I had several real and invented problems at the time but the throbbing, stabbing, heavy head was not an invention.

The problem with my heavy head was that I had fallen down the stairs thirteen days prior and the accident left me with an extremely painful and lingering headache. I was told by an emergency doctor that I had sustained a concussion and the hospital sent me on my way with prescriptions for both a painkiller and a muscle relaxant. And so I waited for days for the headache to get better. 

Left to face yet another day of pain, I had little options other than perusing the television channels for entertainment. My husband, Eric, had been in his basement office for most of the morning, and the kids had been in school since 8 o’clock. Aside from the snoring cat on my bed and the low volume of an old movie, the house was pleasingly still when it finally happened.  
 
With no thematic movie music to signal that the moments ahead would be more exceptional than the moments before, my right arm inexplicably went limp and fell on the mattress. I looked at the right hand on my lap, so completely conspicuous from the left, and it had been rendered lifeless, spiritless, without sensation and feeling like nothing but a cold piece of meat. I picked up my wrist with my left hand and the fingers hung like dead, dangling tentacles. 

In a desperate attempt, I violently shook my right arm with my left hand, trying to bring my right side back to life. How many minutes I violently shook it, I do not know. Five minutes? Ten minutes? 30? My memory is blotchy. Whatever the amount of time it was, the sensation finally came back, but it was not the same. My body was no longer one. I envisioned that it was cut right down the middle, connected only by faulty wiring. Even though my anxiety lessened, the moment was almost too much to bear.

The moment was scary and surreal. I put it back into my mind like it had been a dream, and with good defense mechanisms for denial it seemed inconsequential to tell anyone what I had just seen or to ask someone to bring me to the hospital. I didn’t want to scrutinize the reasons or sound an alarm but I knew something was probably wrong. Really wrong. Did I want to know that something wrong happened there, or should I keep it to myself and move on? Accepting it or doing something about it needed courage but I could not muster it. I rearranged the pillows that rested on the headboard and continued to watch the rest of the movie. 
   
Denial is a powerful thing.
   

And so later in the afternoon when my speech slurred, Eric read that a possible side effect from the muscle relaxant was slurred speech. It made total sense to us. So I continued to stay in bed, hardly interacting with anyone into the early evening until my stepson, Henry, came into my room to say goodbye. He was leaving for his mother’s house for the weekend and as he left he said, “You sound kind of strange.” He was annunciating something that I was already saying to myself.

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Kate’s self-portrait a few months after the stroke

The evening came in quickly and all I wanted to do was sleep, so with no announcement to anyone, I slept. That night was the first night that I did not tuck my six-year-old son to bed. There were no kisses, no hugs, no I love yous, no alarm clocks, no clean teeth. 

I have no idea what time I fell asleep that night. 

The next morning, I got up very early and immediately showered. At that point, I still hadn’t mentioned the paralysis to anyone, including Eric. As I showered, the warm water stung my skin on my right side like prickles from a cactus. Suddenly, I felt a new sense of urgency. Suddenly, something was undoubtedly wrong. 

Suddenly, fear gripped me. 

Eric had woken and gone downstairs. After a quick shower, I grabbed my robe, went downstairs and met him at the kitchen table. I stood against it, grabbed a pen and tried to write something. The result was pure gibberish. I wasn’t able to put down anything logical, or even illogical, on the paper. Since last night I had already been suspicious about my ability to write because someone had texted me and I wasn’t able to text them back.

“I can’t write,” I slurred.  “Something is wrong. I can’t write.”
   

It was at that time that we both agreed it was time to go to the hospital again. 
   
If incoherent speech, brief paralysis and broken cognitive skills don’t give you a hint to go to the hospital, then what does? I thought, how stupid of me that I hadn’t gone to the hospital sooner! 

Denial is a powerful thing.

   
With a methodical scurry, we all got dressed, got in the car and drove to the nearest hospital. For me it was a confusing trip, fraught with extreme trepidation. And the longer Eric drove, the more I convinced myself that I was surely dying. I thought of my guileless young sons in the backseat, and my soul melted with guilt, positively certain that whatever I was dying of, I did this to myself.
   
I needed to be a better mom.
   
I needed to be healthier.
   
I needed to be a better person.
   
I bargained with God by saying my Act of Contrition. 
   
After the longest 15 minute car ride in my life, we arrived at the emergency room. At the reception desk, I couldn’t provide my full name, so Eric took over the conversation for me and gave them some particulars about how I had been feeling and for how long and so on and so on. Hearing my symptoms, the hospital whisked us into the emergency room immediately. At that point, I definitely was scared. But scared of what?
   
After a few minutes in an examination room to get personal information, health insurance cards, and vital signs, I was rolled into a CT scan room. I had just been at the emergency room for a scan one week earlier because of my fall, so the scene felt like deja vu. When the whooshing noise of the scan became louder and the red lasers rotated around my head, I looked upward, sighed, closed my eyes and prayed. 
   
Back in the examination room after they completed the scan, we all waited for news. I don’t remember how long we were waiting; in fact, I really don’t remember what we were even doing or talking about. I don’t remember wanting to talk about anything at all. I was in my thoughts, in my mistakes, and in my regrets, thinking about the year that had transpired and how life can turn on a dime. Eric and I were just married in January of that year, full of passion and good intentions with a new blended family of seven, and then found ourselves in the middle of our fair share of bad decisions and happenstance – unemployment, financial distress, and the perplexing affliction. The once lush lawn of our new home was spiraling into mud, and I spent days and weeks in despair. But the desperation didn’t seem to matter anymore. In that room my eyes were fixed on the bright, fluorescent overhead light. I tried not to blink so that I could take the moment in as much as possible. In the light I saw a collage of good things – laughter, kisses, places, dreams, plans, everything that was going to happen, everything that I had forgotten.
   
I was already mourning them all.

When I was brought back to reality by the sound of a doorknob, my destiny finally revealed its bad hand. A doctor opened the examination room with determination, and with a somewhat anticlimactic tone he said, “Well… you’ve had a stroke.”

At least I know what I’m scared of now. At least it has a name. 

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Kate (and Kate), using her story to help others

Kate would like to thank Eric Sorenson and Dawn Hosmer for their editorial assistance with this post.  I would like to give Kate a HUGE thank you for sharing her story and for helping me to get this very exciting new adventure on the blog off to a powerful start!  If you have a story (and you do) and you are interested in sharing, please reach out to me!  You don’t have to be a writer to guest post.  I can help you!  Think about it!

You can read more about Kate and her journey on her personal blog, The House of Revelry, at http://thehouseofrevelry.blogspot.com.