Mr. Clean

I have a dirty little secret to share.  A housekeeper cleans my home once or twice a month.  And….that’s it.  That’s the secret.  Pretty dirty, I know.

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I am not wealthy, but rather house cleaning is something I prioritize in my monthly budget.  It’s not as though my house needs to be perfect.  I have 2 small children (8 if you count my husband), and a dog, so a perfect house would be quite a stretch at this point in my life.

I do have high standards for cleanliness, however.  I thrive on order and neatness.  It is what I’ve always known after growing up with a live-in housekeeper.

At this point, you may be picturing a large home with a gregarious lady dressed in a freshly pressed blue and white apron; perhaps she is named “Alice”.  While my family’s home was a nice suburban house, it was far from a fancy mansion.  And our live-in housekeeper was far from a spunky lady named Alice.  In fact, our housekeeper was a man, and he was also our dad.

Housekeeper was my dad’s second job.  He had a regular office job downtown Chicago with regular business hours.  He wore a regular suit to work each day.  Yet when I picture him as a young father, he does not look like the typical dad.  He is in constant motion, assessing what needs to be done and doing it immediately, all while wearing a yellow apron with bold, black letters that read, “Between dishes and diapers, I’m always in hot water.” I think the apron was originally a gift for my mom, but he wore it most of the time.

My dad grew up living and working in the motel and restaurant his family owned, so sweeping floors, changing bed sheets, and laundering clothes were second nature to him. As a child, I assumed that everyone’s family was just like mine.  I thought every dad meticulously swept and mopped the floors at the end of each evening, announcing “Kitchen’s closed!” when finished.  I remember being shocked to learn that some of my friends did not have to neatly make their beds and clean up their bedrooms before leaving for school each morning

As children, my 3 sisters and I were expected to help around the house.  We had Saturday morning chores to do – easy jobs like watering the plants or dusting the living room, or wiping the bathroom counters.  Jobs that my sisters and I would spend countless hours arguing over and re-negotiating in order to do the least amount of work.  But when it came to real housework like scrubbing the tubs and toilets, endless loads of laundry, and picking up after 4 crazy little girls, our dad never missed a beat, or a crumb.

It’s not as though our mom didn’t lift a finger.  She cooked and cleaned just as much as the other moms in the neighborhood did.  She liked cleanliness and order as well, but she was laid-back in her efforts.  She grew up with 8 younger siblings, so she was used to the type of messes that kids create.  Sticky fingers and spilled juice did not alert her senses into robot-like clean-up action as it did our dad.

While both Saturday morning chores and daily bed-making taught me some basic responsibility, a lot of “details” were taken care of for me by my housekeeper dad.  Everything had its place, and was put back in its place whether I was the one who did it or not.  I remember my mom frequently telling my father, “The girls need to learn to do these things for themselves.”

I was in college by the time I realized how much I had relied on my housekeeper dad.  Suddenly, things around me were not magically getting cleaned and straightened.  If I forgot my towel on my dorm-room floor after showering in the morning, it would still be laying there when I returned later in the afternoon, crumpled and damp.  If I didn’t leave my shoes neatly next to the front door, they would not be there when I needed them to go outside.

Locating missing objects like shoes, wallets, and sunglasses became a new challenge for me as a young adult struggling with vision loss.  I could not just quickly glance around the room and locate these objects as someone with full peripheral vision could.  In fact, if someone moved my things even just a few feet away from where I was expecting them to be, they were “missing” to me.

I soon learned that Joy was having similar realizations.  My sisters and I were having a little “reunion” weekend together, and discussing all sorts of funny things from our childhood when Joy told us about her attempts to stay organized.

“It’s strange because I never thought of myself as a messy person, “ she remarked with a perplexed look on her face, “I always remember having really neat organized drawers in my bedroom as a kid, but as an adult my dresser is always a mess.”  I nodded my head in agreement.

Our sister, Janine, stared back at us incredulously. “Don’t you remember why your drawers were always so clean?” We stared blankly back at her.  “Because dad used to go in our rooms and straighten the insides of our drawers!” she exclaimed, giggling. “You don’t remember dad doing that???”

That memory had somehow gone missing in my cluttered closet of notable childhood memories.  But now that Janine said it out loud, the image of my dad neatly folding and arranging all the items in my dresser came vividly into focus.

Perhaps I would still need a housekeeper even if I had a full 180 degrees of vision.  It’s hard to say for sure.  But RP does provide me with a legitimate excuse to hire someone to clean my home.  Not only am I part of the majority of people who dislike doing housework, I am also really bad at it.

I imagine what my cleaning gadgets might say to me if they could communicate.  The window cloth would be like “Uh, you missed a spot….no, over to the left….right there….nope, almost got it!” My poor vacuum must be terrified of me.  I picture it yelling “Stop! Danger ahead!” as I roll over tiny toy cars, doll clothes, and hairbands.

I know that there are plenty of people with vision loss who keep a very neat clean home and who’ve managed to figure out fool-proof cleaning techniques.  I am not one of them.  I have learned to keep important items in specific places, though.  And while the insides of my dresser may not look as perfect as they did growing up, I do make a concerted effort to stay organized.

And fortunately, Grandpa Clean now lives 5 blocks away, so while most people’s kitchens look atrocious after hosting family gatherings, mine appears spic and span, thanks to my housekeeper dad!

Locket

IMG_2836A bronze locket is just a shimmering piece of metal in the same way that a white cane is just a long plastic stick.  Neither of them hold any meaning.  Unless you attach it.

The story of my locket begins in a silent monastery in Kentucky, amid rolling hills, Trappist monks, and the clinking of ice water carried steadily on a tray, almost a year ago.

For someone who relies heavily on hearing, a weekend in silence was slightly intimidating, but definitely doable.  While I am typically self-conscious about using my cane in public, fearing someone I know will see me or that I will look weak or, God forbid, blind, I knew it would be my trusted companion on the grounds of the Trappist monastery. And it was.

Besides helping me navigate around inanimate objects, it alerted fellow silent retreaters to steer clear.  And since there was no talking, I didn’t have to deal with any nosey strangers asking me the typical questions about how blind I am or what caused it or how long I’ve been this way,

I went about my business on the retreat silently, as everyone did.  Strolling through the gardens.  Journaling.  Attending “none” service at 2pm and “vigils” at 3am.

I had made the 6-hour drive to Gethsemani with a good friend, Emily, who was incredibly helpful wherever we walked, but I wanted her to have time to just be, and I also wanted my own time of solitude, so I tried to go out alone as much as possible.  The only non-negotiable place, where I definitely needed her, was in the cafeteria.

Buffet lines are always a bit tricky, but my dislike of silent buffets is akin to my distaste for running through muddy obstacle courses in the dark.  Fortunately, Emily is one of my “seamless” friends who is able to assist me via mind-reading, so we cruised through the line with minimal commotion and just a couple whispers

(elbowing her) “That?”

“split pea soup.”

“No thanks.”

There was something about silence that made my food look foreign.  I honestly thought my grilled cheese sandwich was lasagna until I cut into it with a fork and knife.  I guess in the talking world I rely on verbal cues like, “mmm, grilled cheese tonight.” more than I thought.

Maneuvering from the food line to our eating area was probably the trickiest part of the entire weekend.  Since my tray required two hands, I couldn’t hold on to Emily in the dim hallways. I had to hold my cane in the crook of my arm while balancing my tray.  Besides the hallway being very dark, it dipped down in certain places, allowing for a full disorienting experience.  Being a good friend, Emily walked with the intentional pace of a 90-year-old, and her ice water clinked softly, so I simply followed the sound of her cubes.

When I recently told my mobility instructor about this, she said I should have placed my tray against Emily’s back as she walked so that I could feel where she was going.  That would have been helpful to know beforehand, although several potential food catastrophes reel through my mind when I picture walking with my tray jammed against her back, particularly on the downward slanting part of the hallway.

Placing my tray, dishes and utensils in the proper cleaning areas after our meals was a dreaded chore for more than visual reasons.  I could usually tell where she was placing her utensils, but then there was a  “slop” bucket to pour leftover liquid and food into, which was triggering my gag reflexes quite ferociously.  I had to turn away from the smelly bucket, making it even harder to tell where to put my plate, glass and bowl.  After a couple meals, Emily politely volunteered to just clear my tray for me.  I took her up on this generous offer, knowing she would rather scrape my slop than watch me vomit.

I wondered, at times, if any of the other 20-or-so participants observed any of our cafeteria wanderings and whether any of it struck them as funny, but I mostly tuned everyone out, which was incredibly easy to do since they were silent and usually out of my 4 degrees of vision.  They honestly could have been walking around with giant blocks of cheese instead of heads, and I wouldn’t have seen enough to notify one single mouse.

I did more writing during those two days than I had the previous 2 months, fully intending to go “post-all” upon returning home.  But in the end, much of what I wrote ended up being just for me.  One story, however, started out for me, and a few close friends, but is now begging to be told.

On the last day there, immediately following a short seminar given by one of the monks, a fellow participant nervously approached Emily and I.  He handed Emily a small piece of paper and said, “Can you read this to her?” pointing to me.  Emily, who knows how sensitive I am about people treating me differently, was defensive of me and annoyed by the fact that he addressed her, not me, when I was standing right next to her.

“She can see.” Emily stated.

The man squirmed, and I could feel his panic.

“Well, sort of.” Emily added, panic seeming to rise in her too.  .

I jumped into the extremely awkward exchange.

“Yeah, you can just tell me what you want to say.” I offered, hoping my voice sounded kind.

He shifted, clearing his throat, looking like he wanted to crawl in a hole.

“I just want to say that I noticed you walking around with your stick, and you look completely normal, and I wouldn’t have been able to tell that you can’t see– er– kind of can’t….And you taught me so much.  People could be walking around spiritually blind, and you can’t tell just from looking at them.”  He cleared his throat again. “And in conclusion you have this beautiful aura of compassion.”

I didn’t know how to respond.  I think I said thank you.

We were supposed to meet another participant to go on a hike to see the monastic statues and were running late, so Emily stuffed the paper the man had handed her into her bag, and we left on our hike.

The stranger’s words were all I could think of as we walked through the woods, looking at statues.  I had spent a good part of the past decade worrying about what people would think of me with my cane, using it as seldom as possible, for fear of judgment.  I had never stopped to consider that my cane might be a gift.  That it could teach a stranger something.  It suddenly dawned on me that without opening my mouth or typing a word, I could affect someone’s day simply by being seen.  Not in one specific way, and not all the time, but in certain scenarios with certain people. Maybe someone is idling at a stoplight, complaining about having to cart their kids all over town, and a glimpse of someone with a cane walking in the rain, causes them to pause. And be grateful for the privilege of driving.

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As we continued on our hike, we passed a statue of Mary, looking decidedly strong and compassionate, and I felt a kinship in her stance, that of a peaceful warrior.

I couldn’t wait to return to our dormitory-style room and read the note the man had written.  I wanted to write out the entire story before we left, despite the fact that we had less than an hour to pack up our stuff and drive home.

When we returned to the room, Emily began searching her bag for the note.

Only it wasn’t there.

She searched and searched, apolgoizing profusely.  I had the story engraved in my mind, so I told her I could simply type it out while it was fresh in my memory, and the note wasn’t important. I meant what I said, but I did still secretly wish I could read his exact wording since he had paraphrased the note instead of reading it to me..

As we pulled our heavy luggage out of our room (yes, 2 suburban gals on a 2-day retreat with Trappist monks must pack for a multitude of scenarios), we ran into Phillip, the gentleman who had taken us on our hike, an army chaplain who we nicknamed Guardian Angel after he rescued us from a crazy-long walk in search of the statues the day before.

As he helped load our bags into Emily’s car, I couldn’t help but ask how much longer he was staying, and if, by chance, he would be trapsing past the statues again.  He said he would be there 2 more days and that he might take another hike, so I told him about the lost note and asked if he could e-mail me if he found it.  Basically, I was asking him to look for a piece of paper folded to the size of a penny on a 2-mile trail in the woods on a windy day.  The paper could be anywhere, and I fully knew there was little chance of him finding it, but I didn’t think it hurt to ask.

I finished typing the story on my lap top on the way home, Emily continuing to apologize, and me feeling bad that she felt bad.

I told my husband all about the trip when we got back, including the story of the note and my revelation about using my cane.  And then I put the whole thing in the back of my mind.

 

Until 2 weeks later when our Guardian Angel sent me the following e-mail:

Joy,

The small piece of paper says:

“Please excuse my intrusion into your experience
-You have taught me something spiritual
-even the “blind” look completely normal
-and I sense a warm gentle spirit, and beautiful soul, in you
God bless you on your journey.”

God kept it safe in a plant right about where I was standing when your picture was taken with Emily.

You see.  He careth for you.  

Phil

Several days later, Emily received the tiny slip of paper in the mail, as Phillip found her address in the guest book and mailed it to her, knowing she had been beating herself up over it.  We were both giddy about the whole story, barely believing it all came together as it did.  A million miraculous moments from 2 days at a monastery.  No wonder Thomas Merton had so much to write about.

I tucked the note in my jewelry box and forgot about it.

Until 2 months later, when Emily presented me with an early birthday present.

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A locket, sized just right for the tiny slip of folded paper.

A reminder that our weaknesses can be gifts that shed light.

A locket is just a piece of jewelry in the same way that a cane is just a mobility aide.  Both mine happen to hold stories.  And in those stories, meaning.

Life Without a Dishwasher

Spring has sprung, and that means lots of park dates with the kids. Playground conversations amongst the parents can be riveting. Yesterday’s topic of discussion was dishwashers. Some people have them. Some do not. Two of the non-dishwasher moms were lamenting this missing appliance

“Yes,” I chimed in, “That would be so hard not to have a dishwasher.”

“Well, I mean, it’s not that bad,” one of them responded in defense, “You just get used to it after awhile.”

“Yep,” piped in the other mom, “People lived for many many years without the luxury of dishwashers. It’s really not a big deal.”

“True,” I agreed, changing my stance like a crafty politician, “It would probably force me to stay on top of my dishes if I did not have one.”

“As if!” the other woman retorted “My sink is constantly piled high with dirty dishes!”

“Totally!” agreed the other mom, “It’s nearly impossible to stay on top of! It’s so annoying.”

It was at this point that I decided to keep my dishwasher-owning mouth shut. Nothing short of throwing my dishwasher out the kitchen window was going to make my perspective on this subject valid. Perhaps toaster ovens would be the next topic of conversation. Mine had caught on fire years ago, and never been replaced. I could legitimately participate in a conversation about that missing kitchen appliance.

On the walk home from the park, I chuckled to myself about this silly discussion. Yet there was something about it that felt familiar to me. It reminded me of so many discussions I’ve had with others about my eyesight.

“it must be so hard not being able to drive your kids places on your own,” one friend admonished when the topic came up.

“Oh, it’s really not a huge deal to me,” I retorted, “Between my husband and my parents, all the driving is taken care of. Plus, I would hate the hassle of a second car payment, insurance, and all ot the headaches of driving.”

The words I told her were true to some degree, but I was using them to downplay a major struggle in my life. Attempting to discuss this struggle with someone who has no idea what it feels like to have that major loss of independence felt irritating. I did not want to agree with her statement about how difficult it must be not to drive.

On a different day, “positive polly” tried to make light of my situation, saying “You are SO LUCKY that your husband does all of the driving. You really don’t know how much of a hassle you are missing.” I wanted to tell polly, “I’d like to see how lucky you would feel if you had to rely on other people to drive you and your children around. You really don’t know how much of a hassle YOU are missing.” But instead, I casually nodded my head and promptly changed the subject.

If someone hasn’t walked in my shoes, it can be frustrating to hear their opinion about how difficult or easy my situation appears from their perspective. Just as a parent whose child is throwing a wild tantrum does not want to hear, “Oh that must be so hard. I wouldn’t know because my child does not do that sort of thing. But it must be very challenging.” That same exasperated parent does not want to hear, “I don’t let kicking and screaming bother me. Tantrums are a breeze!”

No, a parent who is in the midst of their child’s meltdown wants to hear, “I’ve been where you are.” or a simple, “I know”.

This is not to say that we cannot confide in anyone that does not share our exact struggle. Sometimes simply listening can be a stronger form of support than attempting to commiserate.

When I listen to my friends who struggle with yo-yo dieting, or a spouse who travels constantly for work, or a strained relationship with their parents, I try my best to understand how this struggle affects them even though these are not struggles that I share.

I can imagine how I might feel if these were my struggles, but I don’t really have a clue what it feels like to not eat carbs for 3 months in order to lose 30 pounds only to gain 45 pounds in the following months.

Most people don’t want to hear that others view their problems as far worse or much easier than they think they are. They just want to be heard and feel a connection. I don’t have to personally have a husband who travels 6 days a week in order to empathize with someone who does. I understand the human emotion of feeling alone and overwhelmed, especially as a mom.

My friends and family may not have RP, but they can relate to feeling stuck and helpless at times. For every challenge in life, there is an underlying human emotion, and that’s what we’re empathizing with when we nod our heads and listen to each other’s various experiences.

So I guess I don’t have to wait for the toaster conversation to come up at the next park play date. I can, with great certainty, nod my head and tell my non-dishwasher friends that I can relate to feeling behind on housework. They haven’t seen my laundry room.

The #1 Way to Assist a Person With RP in Public

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Friends and family have often expressed to me and my sister their concern over whether they are being helpful when we’re out and about.
We have told people there is no right or wrong way, and no specific expectation, This is half-true.  I posted a list of tips and pet peeves a couple years ago, though looking over it now, it may be too detailed to remember.
Some friends have observed our husbands’ interactions with us and followed their lead.  This is an overall wise idea, as our men have been with us long enough to help us seamlessly.  My husband, however, has been known to be so laid-back and hands-off that I have walked into signs and fallen down a flight of stairs walking right next to him!  This may be why he recently told me that he feels excited when I pull out my cane.
I still struggle with regular cane use, except when we’re on vacation.  When we’re traveling, I feel free from worries over who’s watching me, since we’re surrounded by strangers.  Plus, vacation spots are always unfamiliar territories, so my cane literally becomes my tour guide….. not to mention my entrance into the fast-lane through airport security, ticket to boarding the plane early, and most recently, my magic wand whisking our family through the handicapped entrances to the front of the lines at Disneyland.  I would feel guilty about taking advantage of these benefits, but let’s face it, there really does have to be some perks when going blind from a degenerative retinal disease  Why else would anyone sign up for RP?  .
So if I’m not carrying my cane, and my husband is not nearby to observe, there’s one, all-encompassing phrase  that I’ve found to be most comfortable if you’re concerned whether I’m struggling.
“Need An Arm?”
This puts the pressure back on me (or whoever you’re helping), where it belongs.  I’m then able to either say “no thank you, I’ve got this” or “Yes, please!”
If the response is the latter, simply stick your elbow out.  If you’re standing to my right, stick out your left elbow, and vice versa.  This is considered “best practice” for guiding a blind person, and for a good reason.  If you were to grab, push or pull a person with low or no vision, it can be disorienting, especially if someone is trying to “steer” you.  When you offer your arm, I’m able to feel your movements and follow along.  My personal favorite thing to do with close friends and family is link arms.  I’m not sure if this is recommended practice, but it feels most natural (and fun!)  to me, like we’re best buds going for a stroll as opposed to “being led forth by my sighted guide”!  Of course, if you’re a stranger on the street, let’s stick to the elbow.
Of course, if someone is about to literally fall down steps or get hit by a car, do all the shoving and pulling you need to prevent a fatality.  Also, sometimes even with a cane, guiding is helpful, so it never hurts to offer, unless you’re constantly hovering.
There you have it, a fool-proof way to be helpful without being overbearing.

You’re welcome!

 

Book Review: “Now I See You”

“You’ve got to read the book I just finished,” I heard Joy telling my voicemail.  This was not an uncommon message for her to leave.  Recommending the latest and greatest books to each other has been happening since our “Sweet Valley Twins” days.

But what she said next sparked my interest a little more than usual.

“The author is a mom about our age who wrote a memoir about her life and she has RP just like us.  She actually sounds like someone we would be friends with.”

I instantly knew she meant that we would be friends with her because of her personality, not her RP.  I uploaded the book from Audible a few minutes later, and began the journey into Nicole C. Kear’s memoir “Now I See You”.

When Joy assigned this book report (yes, my English teacher twin demands that I contribute to this blog at least once a year), I wasn’t quite sure where to start.  I had not written a book review since maybe the 8th grade, so I decided to read a few reviews prior to writing this review.  Also, I was really curious to see what people were saying about this book.

I started with the professionals, The New York Times, and then moved along to blogs and finally ordinary people reviewing books on Audiible and Amazon.

Reading book reviews on these larger sites is a lot like reading hotel reviews.  There are your typical informative reviews that help you choose whether or not this hotel will be a good fit for your needs.  And then there are the disgruntled crazy guests whose reviews just make you laugh because it is obvious that no amount of amenities or customer service could ever satisfy this unhappy individual.

Which brings me to one review I came across in which the woman was, first of all, quite bothered by the amount of profanities in the book.  On the one hand, I could see her point.  I was raised in a house where “shut up” fell under the naughty category.  But I also watch R rated movies quite frequently, and if there’s anything that makes me want to drop the F bomb on a regular basis, it’s my vision loss.  Plus, the cussing in this case is a consistent part of the author’s witty, raw, and at times painfully honest voice.

Miss “No Potty Talk” continued, “Also, I was really hoping to read a book more about someone going blind.” This brief review made me laugh.  I knew instantly it was written by someone who had not had the enlightening experience of slowly going blind.  This person had an idea of what a book about someone going blind should be, and this memoir apparently did not sound like what she envisioned.  And for me, that is what I enjoyed most about “Now I See You” – one woman’s authentic experience of going blind.

As I listened to her stories, I often felt as though she were telling my story.  Only with a lot more profanities and Italian accents.  But still, so much of what she wrote resonated with me and reminded me of my own story.  Of course there is the obvious connection of having the same rare degenerative eye disease as the author.  But there are also universal themes in the book – shame, pride, guilt – that allow readers of all backgrounds to connect with her stories.

The humor and sassiness in which she conveys her memoir sent me into hysterical, audible laughter at times.  Her talent for writing comedy is right up there with Tina Faye’s “Bossy Pants” and Amy Poehler’s “Yes Please”.  While Ms. Kear is not a professional comedian, she does have a background in theater, which is why I highly recommend listening to this book for a full entertainment experience.

At parts of her memoir, Ms. Kear was literally living out my nightmares. Driving a motor vehicle with low vision for one, and navigating nightlife  in LA and New York City for another.  At other parts, she was living out my reality.  Bumping into fire hydrants and plowing over unsuspecting toddlers.  It was somehow comforting to hear about another young woman trying to hide her inabilities just as my sister and I have done.  And fascinating to learn that her outspoken, East Coast Italian family had chosen not to discuss her vision loss just as my mild-mannered, Midwest family had done.   These similarities were not just an odd coincidence, but a reminder of the human condition we all share.  

 
Double vision consensus:  Joy and Jenelle give it 4 thumbs up
 
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Bloom

Last summer I had the idea to start a legacy story-telling business that would help capture people’s life stories through video, audio and print. I bought 3 different domain names because I couldn’t come to a final decision, and the name I really wanted (Legacy Storytellers) was already taken. I worked on my web content, read and researched everything related to personal storytelling, met with experts in the industry, interviewed possible videographers, and began making plans to attend “The Association of Personal Historians” annual conference. I talked incessantly about my budding career plans, announcing to family and friends my goals for the year.

And then I took a little sip of air, often referred to as a breath.

And I exhaled for the next several months, wondering if this is the right time to start such an endeavor and feeling kind of embarrassed that I opened my mouth to so many people about it

Most unsettling to me was how quickly the passion that bubbled up over the summer fizzled, an opened 2-liter of soda stuck in the fridge for weeks, cap screwed on loosely.

Was I turning into one of those entrepreneurs with a million golden ticket ideas but never any follow-thru? The next eager inventor of everything bun in the end, nothing?

When I really think about it, it seems I have spent much of my life dreaming. Often escaping. Sometimes Utopian-izing, Thinking that my real life will soon begin. My Better Life. This new, posh life will start when….I find the right career, buy a nicer house, land a book deal, set my finances in better order, learn to make perfect risoto……and the list goes on.

I’m not from a small town, but living in the same mid-size city where I was born and raised sometimes makes me feel like I haven’t branched out or grown up. So sometimes, in the back of my mind, I think my new, posh life will begin once I leave my little nest.

Then this one annoying quote finds its way into my consciousness:
“Wherever you go, there you are.”

Simple and obvious, right? Yet something I miss constantly. Whatever I want to escape is usually inescapable because it’s within me. Whenever I feel down, like I want to run away, it’s not the external place— it’s the landscape inside me that needs my attention first. I know this is true, yet when I’m in the midst of it, I don’t see it. Most of us don’t.

I think about our family’s move to our current, downtown location and how much living in a walkable place has improved our quality of life. But honestly, I can find myself in the same, trapped mental state as when I lived in the middle of nowhere when I’m not tending to my internal landscape.

As I’ve sat wrestling with what to be when I grow up, I’ve continued to write content for small businesses and have continued to get new leads, moving forward but without barreling ahead recklessly. I’ve continued to open up our house to after-school kids, and our home is always full.

I started the summer trying to choose a new career, but now sitting in winter, waiting for spring, I’m finding that sometimes careers choose you. Sometimes you just wait and allow the water and sunlight to do their magic.

Sometimes, like a bud, rising up out of snow, you open your eyes to see that you are blooming now. Maybe slower than you would like. Maybe not in the specific areas anticipated, but rising up just the same.

And you find that your new, Better Life is not hinging on an event or a skill or the approval of others. It is happening right now.

“For all of a sudden, when I saw those lights, I said to myself, Ivy, this is your life, this is your real life, and you are living it. Your life is not going to start later. This is it; it is now. it’s funny how a person can be so busy that they forget this is it. This is my life.” – Lee Smith, Fair and Tender Ladies

Flower

Choosing Our Struggles

I love to read about other people’s struggles, especially if they are very different from my own and if they have overcome something unimaginable to me.  Whether it’s the personal memoir of an oppressed woman in the Middle East or wise sentiments from a man born with no limbs or a documentary about a wealthy hoarder in New York.

It doesn’t matter whether it’s dramatic, life-altering challenges, though those tend to be the ones that grab my attention, I glean just as much wisdom from writers like Brené Brown and Ann Lamott in their depictions of more common human ailments, such as shame and chemical addiction.

Back when I taught 7th grade, I was the only weirdo English teacher who chose “Life’s Biggest Challenge” as  my students’ major narrative essay topic.  While other teachers were assigning jovial topics like “What I Did Over Summer Break” in which kids could write about al the fun they had riding Big Thunder Mountain at Disney, I was “that” teacher asking 12-year-olds to think about their deepest struggles in life. And how they overcame them or how they continued to face them.  Granted, preteens these days do face incredible challenges, and there were maybe 2 or 3 kids each year who were able to articulate them and put them into any kind of big-picture perspective in a concise essay.  But for the most part, I read handfuls of narratives about overcoming skateboarding or gymnastics stunts that the students had attempted to master all of their lives.

As a teacher, I knew certain inconspicuous facts about specific kids, like who’s parents were recently divorced, who struggled with hidden disabilities such as dyslexia or who’s mom had just died of cancer.  I always assumed students would choose these glaringly-obvious challenges for their essays, but most of these kids were the ones who came to me saying they had no idea what to write about. Even when I told them their papers would be completely confidential, the majority still chose to write about sports and hobbies.

And I can understand why.  Until starting our blog, about a decade after graduating from college my twin sister and I did not choose to write or even talk about the major life challenge of having a degenerative eye condition.  I remember my sister even telling me once how she was assigned a similar challenge essay in high school and how she wrote a fictitious essay about how she used to be fat as a child and how she overcame her weight problem.  Now to understand the extremely comical part about her choosing this topic, you have to envision my sister at age 15 when she wrote this…..all 93 pounds of her at the time.  Skinny as a rail, and all genetics, no eating disorders involved.  She said that her teacher commented “Wow, Jenelle….I would never have guessed you used to struggle with your weight!”  Apparently, she got all her material for the essay from a chubby little girl she babysat.

I have no room to criticize, however, as I remember an 8th grade essay I wrote about being in the hospital at the age of 5 and how I received a special stuffed clown named Chuckles. This was, in fact, a true story, but it did not actually happen to me; my sister was the rightful owner of the green and white checkered Chuckles

So what keeps us from sharing our real stories?

I think most of the time it’s shame.

Shame-researcher, author and speaker, Brené Brown, who’s TED talk on the topic of shame went viral, describes it this way: “Shame is the intensely painful feeling or experience of believing that we are flawed and therefore unworthy of love and belonging. It’s the fear that something we’ve done or failed to do, an ideal that we’ve not lived up to, or a goal that we’ve not accomplished makes us unworthy of connection.”

One would think that after writing extensively about vision loss on my sister and I’s blog, that I’m over any shame related to vision.  But shame sneaks up like influenza, barely a sniffle and then writhing with body aches.

Just the other day I was reading, “Bread and Wine”, by one of my favorite writers, Shauna Niequist, and I found myself having shame envy.  That’s not even a real term, but that’s the closest I can come to naming it. She was talking about the shame she has felt over food and her body and feeling hungry.  And I found myself wishing that I could write about food-related shame instead of vision challenges despite the fact that I have never once felt shame over a partaking in a decadent brownie nor over a BLT dripping with bacon grease.  But I found myself thinking irrational thoughts about how more people could relate to her shame than mine and how her struggle sounded a lot cooler than mine.

Cooler?  Really?

But that’s what deep shame continues to do, even after you’ve spent a lot of time and hard work scraping off its layers.  It makes you think that no one can relate with you.  It makes you feel shameful even about your shame.

At some point, it is necessary to choose our challenges, to really claim them as our own.  Shame tells us that giving them attention makes them grow bigger and gives them more power, but I have realized that it is in the naming that they shrink.  Like a physical wound, it is only when you give a laceration the attention it needs, leaning close enough to clean it with peroxide and wrap it in poultice, that it finally loses its sting and can heal.

“Owning our story can be hard but not nearly as difficult as spending our lives running from it.” – Brené Brown
So today I choose my struggle because it is mine.