me speaking at The Orchard last weekend– an opportunity I never would have had if I hadn’t started writing regularly

It seems like I’ve been talking to a lot of people who feel down lately.  Some of the down feelings are

circumstantial, but for most of the people, it’s more of a disillusionment with the way their everyday lives are going.

And because I’ve definitely been there, it is causing me to analyze some of my “joy” data– and I’m not talking about my name here….. what brings joy into my life on an everyday basis?  (and this is beyond all those easy answers like God and children….)

For me, it’s words.  I remember loving the feeling of stringing them together as a kid…. that pure delight even in kindergarten when I wrote, “The Rose Girl” and had some vague sense that I had created something.

And maybe my first love of words had something to do with the fact that pictures were sometimes hard to see, and how the words describing them made them visible to me.  My toddler has a lot of first words books where I point to the  picture and she tells me what it is, and honestly thank goodness for the large, bolded words below each picture because I have trouble deciphering what most of them are even though she recognizes most of them right away.

I think it’s human tendency to withdraw from some of the things we really enjoy doing in life when we’re down.  I know I withdraw from writing when I’m feeling depressed (hence the lack of entries over the winter!)

Yet as I write daily– whether I intend to ever share it with anyone or not– it makes me wish that I had forced myself to do it over the winter because I feel like the days build on each other and increases my daily joy exponentially.

it sometimes takes effort, contemplation and soul-searching to sit down and do the thing that feeds us– or even figure out what it is.  But when it is found– whether it be yoga, art, long walks– whatever– give it a prominent place in your life.  Challenge yourself in whatever it is, and ignore messages clouding your brain that tell you it’s a waste of time.

For years I didn’t really write much because I didn’t think it would ever lead to a “career” or financial gain.  And honestly it may never end up putting a dime in my pocket, but I’d pay a whole lot of money to feel as alive as I do when I create with words.  I am so grateful for my amazing twin sister who had the idea to start this blog.  It has been my free therapy, my place to be honest, my place to grow and the place where my soul figures out it is satisfied.

I know I’m hovering on the cheesy side again, but I’m writing this for the people in my life who are down right now.  Because they have soul food in their lives that they aren’t eating.

Usually these soul food type of activities don’t come skipping along at just the most opportune times.  They usually arrive in the middle of the inconvenient times.  Like right now when I’m supposed to be scoring essays, for example.  I score state tests for Pearson from home to help pay bills (and with how slow I am at scoring, I barely make minimum wage, but my philosophy is that something is better than nothing!)

Many of my writing ideas enter my mind while I am scoring exams, which is completely frustrating because I have a quota to meet, and when I stop to write, I really lose time and money.  But when I don’t grab those moments of inspiration, they tend to disappear.  So lately, when I feel the inspiration to write, I stop whatever I am doing and just roll with it because I know it’s something that will keep building….. the more I am in the habit of dropping everything to do it, the easier it will be and the more joy I’ll get out of it, and the fuller my soul will feel.

And anyone I know who actually continuously practices the things that feed their soul end up heading in a life direction that they feel alive in.

My husband, for example, is a singer/songwriter, and for years he struggled to find his “niche” of listeners.  I worked as his booking agent, we hired a publicist and were determined for him to someday make a living as a full-time singer/songwriter.  After several years of late-night shows that didn’t really pay, I got really frustrated.  Why wasn’t this career happening?  But my husband kept plugging away writing and  performing, and at times I couldn’t understand why.

Then in 2010 he was asked to do a Christmas show in Aurora, and we argued about whether he should do it because we would be sacrificing a lot of fun plans and even a weekend trip with family, for him to do this show that involved late-night rehearsals, performances spanning over two weekends and little pay.

At some point I remember my husband making the point that ended the argument: “Joy, with my busy job and our family commitments, this is my one opportunity each year to connect with other local musicians and to put music first”

And it was at that performance that he met his current boss, who hired him one month later to do his dream job.  He now writes and plays music full time, like we had always hoped he would be able to do, and simply from continuing to do the thing that makes him feel alive even when it wasn’t convenient and didn’t pay.

I’m not suggesting that we will all end up with careers doing these soul food activities, but if we open up spaces in our days to do them and place them above all those nagging things like money and organizing the closets, we just might start to breathe easy again.

Friends and I have often joked about what current parental mishap will surely send our kids to therapy someday.  I usually laugh and then cringe inside because there are just so many, many moments of parenting– and they all add up to just one childhood.  Which moments will my girls remember as adults?  The ones where I am frustrated and nagging or the ones where we are snuggling up reading a good book together?  As a parent, I of course want my kids to have the best possible memories of their childhood,  and I feel angst when my 5-year-old says things like “No one ever plays with me” after my husband and I have spent the whole day hanging out with her but have taken a 20-minute break to do housework.
It’s interesting what our minds choose to hold on to– out of the 1,440 minutes in a day, sometimes only two  of those minutes will filter down and make it into the “keep this” category.  While I sometimes wish I could program my kids’ filter system to hang on to all the good memories and throw out the bad, I of course know that I can only help them learn how to process the harder memories and perhaps help them remember aspects of the not-so-fun memories that are redeeming.  My mom, while not on active parental duty anymore, still helps me do that on occasion.
A couple months ago I received a nice comment on our blog from a mother, Amy, whose 10-year-old son has RP and responded very positively after being told his prognosis. Amy writes:
“When we explained everything to him that the retina specialist told us, his response was, ‘Well, Mommy, I guess you’ll have to be my personal chauffeur for life.’ He has such a positive, optimistic attitude and view on life in general, so he is a great example for my husband and I when we start to feel sorry for him.”
I lamented to my mom that I wish I’d had that kind of personality as a child.  My mom replied that she remembers me as that kind of child and went on to say that after realizing I couldn’t get my license at 16, I said, “That’s okay, mom.  I have a great family, a nice boyfriend and get good grades in school.  I couldn’t ask for much more–I have it pretty good.”  Now, whether that was a cover to mask my true feelings at the time or whether I really meant it, I’m not exactly sure.  But it’s strange how when I think of that day– the one where the driver’s ed instructor spoke in low tones to my parents in our front entryway- I remember it differently.  I remember fleeing to the neighbor’s house where I was housesitting.  I remember changing their cat’s litter box with tears streaming down my face and sinking onto their red velvet sofa in sobs of disappointment and self-pity.  But my mom’s recollection of this event puts a slightly new spin on that difficult day in my mind and makes me feel kind of….. strong.

Amy just shared another snippet about her son’s day-to-day dealings with RP that said:
 “I thought about your blog the other day when Nathan came home from school and said he got hit in the face in gym class three times with basketballs. His glasses were broken and he had a substitute teacher that day, so he walked around with no glasses on with his friends sticking close by him. His one friend even had Nathan dictate his answers to him and wrote it out for him as the boxes were to small for Nathan to see and the teacher wasn’t there. Nathan, Mr. Positivity, came home and had his first meltdown over his vision, saying it was the worst day ever. Poor guy! He was so proud of himself, though, that he held it all together until he got home that day!”
I really loved how she ended the story with him being proud of himself for holding it together until he got home because that’s the piece her son may not remember when thinking back on his difficult day– that he was strong.  And she can remind him of that.  And I think that will make a difference in how he views himself.  

And that’s something we can all do as parents – whether our kids have RP or not- help them see that little piece of their story that seems hidden to them.  And hopefully someday they’ll help us do the same if we’re beating ourselves up about what we could have done differently as parents (after they’re done complaining about us in therapy, that is!).  

Hopefully our readers won’t find this post too petty or boring.  Not a good start, I know.  But sometimes it’s more than just the not driving that really gets to me.  RP also interferes with my love of fashion – shoes in particular.  While other fashionistas my age are strutting around in sexy high heels, I choose to wear flats or kitten heels most of the time.  It’s not that I can’t walk in heels – trust me – I have excellent balance and a pretty high threshold for foot pain.  The risks are just too great considering I often miss a curb or trip on a rock in my path, and catching myself from falling is rather challenging in high heels.

This summer I didn’t exactly have a choice, though.  I was a bridesmaid in a dear friends wedding, and the gorgeous shoes she chose for us just happened to be 4 inches tall.  Nervous doesn’t begin to describe how I felt about sauntering down an aisle in front of 200+ people in these tricky gold heels.  Luckily, each bridesmaid had an escort, so I managed the ceremony just fine.  But then more nervous butterflies entered my stomach when I learned that we would need to walk through a dimly lit reception as our names were announced in front of the seated dinner guests.  I convinced my escort that we should enter the reception skipping instead of walking as our names were announced.  I figured it would look less ridiculous if I fell down while skipping vs. walking.  Plus, skipping is a lot of fun.

Not only did I successfully skip to my dinner seat, but I also managed to dance the night away in these same heels (with a lot of help from my fantastic husband).  I realize the ending to this story might be somewhat disappointing for those of you looking for a good laugh.  But don’t worry – I have RP, so there are plenty of funny embarrassing stories to come! Especially if I decide to wear these heels to a dark restaurant….  

The shame and embarrassment of not being able to see like everybody else started at an early age.  I can remember going up to the chalkboard in first grade and not being able to find where the teacher had set the chalk.  The whole class was watching and waiting for me to write on the board, but I could not find the chalk.  My face burned with redness as I started moving my hand along the bottom of the chalkboard in hopes of being able to feel where the chalk was.  “Use your eyes, ” I heard my teacher saying in a stern voice, which only made me more apprehensive.  After fumbling around a bit, I located the chalk and began to write on the board as tears welled up in my eyes. I remember wishing that I could “use my eyes” like all the other kids, but I couldn’t.

I was diagnosed with RP at age 5, so my teacher was well aware of my vision challenges, but yet she still was not comfortable with me using my hands to find a small object (side note – she also mimicked kids who read slow by mockingly telling them “you are reading like a robot”, so perhaps teaching wasn’t her calling in life).  But as I’ve grown older, I still find that people are uneasy with me doing things a different way than they do.  It makes them uncomfortable to see me feel around for an object that they can spot within seconds, or to see me walking slow in unfamiliar terrain so that I don’t trip on something.  The funny thing is that I can do many of the same things that people with normal vision can, but I have to take a slower and often times more awkward-looking approach.

I wish that I could say that I am beyond the point of getting embarrased by my vision, but I still find my face turning red when I drop a coin at the store and can’t see where to pick it up, or when I walk into a dark restaurant and begin slowly shuffling like a turtle.  One of the biggest challenges about being partially-sighted is that it is not a term that most people understand.  They think you’re either blind or your not – there’s no in-between.  And because RP is so rare, it’s often difficult to explain why you don’t see like everyone else.  My friends and family are pretty used to the way I “use my eyes” differently than they do, but to the complete stranger standing behind me in the grocery line, I am the freak that can’t find a quarter right in front of her face.  Maybe that’s not what they’re thinking, but it sure feels like it from my perspective.  I know that I need to not care what strangers think, but this is my journey, and this is where I’m at right now.