This month’s warm weather, particularly our 65-degree Thanksgiving, brought back memories of Christmas Day last year, an oddly-warm 25th of December.

After opening numerous presents that morning, my then-5-year-old sat and played with her new treasures.  After about 20 minutes she asked, “mom, aren’t there any more presents?  I want some more.”  I thought back to 3 years before when she was two-and-a-half years old, and how, after only 3 presents, she said nonchalantly. “that’s enough.” and refused to open more.  She wanted to just play with the same 3 presents all day until finally being coaxed to open the rest later in the evening.

I couldn’t help but wonder when the shift from “plenty” to “empty” had occurred in my little girl.  I imagine that gap between satisfaction and always-wanting-more will only increase as she gets older, as it does with almost all of us.

Could it be this feeling of want that creates the chaos surrounding the holidays despite the  soft, underlying pleas for a peaceful, Silent Night?

I’m not lecturing here…. I clearly enjoy a good Black Friday sale and find myself craving the holiday craze at times.  And I have definitely gotten myself wound up about a house that doesn’t feel decorated enough.

But the memory of a simple, satisfying trip to the graveyard with my family on Christmas Day last year evoked a desire in me for a quieter December this year.

I decided to adopt the “wrapped and done by December 1” motto so that I really can sit back and celebrate a peaceful holiday season this year.  And it’s not just a lofty goal– I started shopping a bit this summer and finished today.

I’m ready for some Silent Nights.

I’m ready for more moments that match this one from Christmas last year:

It began after dinner at my grandma’s house.  We usually take long family walks to digest our afternoon feast, usually to the nearby Riverwalk, but this particular year we decided to visit my grandfather’s gravesite about a mile away.  Though buried 2 and a half years prior, his stone had just recently been engraved and we all wanted to see it and take a few moments to remember a man who was important to us

Weather-wise, this was a rare midwest day in December,  reminiscent of late October, the faint scent of burning leaves and a hint of distant cold air to come.  We walked without mittens, our feet free of heavy boots, the air far more refreshing than startling.

We arrived at the cemetery, our shoes crunching on leaves and our voices chattering away, signaling our arrival to the departed.  I can only imagine my grandpa chuckling to himself, “You really know how to make an entrance.” he’d say with a dimpled grin.

While standing in a sloppy semi-circle around my grandpa’s grave, singing some of his favorite tunes, such as “Singing in the Rain” and “You Are my Sunshine”, I felt it– that nearly-extinct sense that everything is right in the world despite so many wrongs.

I think the moments that I sit back and say “enough” and sigh with deep satisfaction are few and far between, but I think they’re worth noting when they do occur.

It will probably be more difficult for my family to have that rare feeling of satisfaction this Christmas, as my grandmother recently had a stroke, and the fatigue of figuring out her care has been weighing on many.  The future is uncertain, as it always is, I suppose, but a little less comfortably for the Kuhn family right now.

For me, this is all the more reason to keep things a little less chaotic this December.

This year, there is reason for the air to feel different during the holidays, and even if it is a little brisk at times, I hope to sit and breathe it in.

It’s Sunday night, and I”m tired.  But it’s a good tired.  Ben and I played a lot with the kids today.  And we put on rain boots and jackets and went splashing through puddles as we walked to Lou Malnati’s for pizza in the pouring rain.

And I was reminded today, as I was throughout this whole past week, how life reverses both ways.  From perfect, sunny days that turn rainy all the way back to rainy days that turn out to be fun despite the puddles.  Or perhaps, because of the puddles.

To give you the end of last Friday’s story, Lucy continued to cry all the way home.  When she continued to sob at home, I got desparate for something to calm her and went up to my closet where I store future Christmas gifts (yes, I know it’s only August, and I’m ridiculous for starting already, but I pretty much am a single-parent the month of December since my husband is in ministry, so I like to just get it done early).  Anyways, I went in the bin and grabbed the one thing she has been asking for the past year that I finally found on ebay– a retro Rainbow Brite doll (yup, that’s what I get for thinking I’m a sly, early shopper– the best gift is already ruined!)

And as I’m handing it to her, an even larger feeling of guilt sweeps over me as I realize that I’m instilling a materialistic comfort habit that will probably lead to her becoming an emotional shopaholic one day. (honestly when I told my husband about everything, he was completely understanding about the stroller accident, as something similar happened with him and Lucy and a bike a couple years ago, but he was really upset that I pulled the doll out!)

It did the temproary job of calming her down, however, and reassured me that the crying (which ceased immediately) was dragging on more out of fear than pain.

But as quickly as her tears vanished, mine appeared. An old friend had stopped by to see our new house, and as I was showing her the upstairs, I felt my voice break and I couldn’t compose myself. She, of course, told me that I was being too hard on myself and that she had done so many similar things when her boys were young.

And you know what?  Throughout the entire past week, I received comments and e-mails from people, sharing their “guilt stories” of ways their kids were injured on their account.  And while a couple of the stories honestly disturbed me, they really did help.  A couple of them even made me laugh and smile to myself.

And as my week progressed, I realized that there are a ton of reversals that occur in the span of a week, or even a day for that matter.  And sometimes life seems to reverse on its own when we give it a moment…..like when Lucy was pouting on Wednesday because there was a toy she wanted that I wouldn’t get her at the store. She ran into her room and shut the door, and I was too frustrated to try to reason with her, so I just sat on my bed and read with Elli, feeling like I had created this material=hungry little blonde monster.  But to my surprise, a few minutes later, she came hopping up on my lap and thrust a handmade card in my face that said, “I’m sorry mom.  I love you, daddy, and Elli more than things.” followed by a great, big bear hug.

And while I beamed and hugged her on Wednesday, I found myself feeling irritated on Thursday when both girls were whining and kept begging to watch tv all afternoon.  I kept waiting for the day to reverse on its own– for the girls to come prancing up to me with handmade cards again that said “We will never whine again and we don’t even care about tv!”  But the cards never came.  And I kept thinking, “Why does it take so much to make them happy?”

And it was then that I realized that it was my frame of mind that needed a reversal– not my day. I got out some play doh and sat on the porch with Lucy while Elli took a little snooze in her stroller near us.  We sat and chatted and played, and it seemed like just that hour of one-on-one attention turned the whole rest of the day around.  She frolicked around the house the rest of the night, singing little songs.

And I kept thinking, “wow, it takes so little to make kids happy.”

So I guess this is just how life is– one reversal after another.   And while it often takes so little to turn it around, it does take something.  

Whether a pause.  A prayer.  A deep breath.  An empathetic ear.  A shift in consciousness.  A brief moment of reflection is worth the likelihood that the day– or week or month or year– will turn around.



Have you ever had one of those days where you wake up feeling like you could conquer the world and go to bed feeling like the world conquered you? Friday was one of those days for me.

It was one of those rare, Midwest gift days in August where you wake up and open the windows because the humidity has finally dissipated long enough to turn the A/C off for a day or so.. On days like these, there’s no wrong thing to wear. Whether long sleeves or tank top, you are neither too cold nor too hot because the sun shines brightly, complimented by a crisp, clean breeze.

It was also my first free day with no plans in awhile and felt like the perfect day to get really serious about potty-training my 2-year-old, with my oldest daughter back in school As soon as I put minnie mouse underwear on her, she immediately ran to the potty and knew just what to do (though she forgot a minor detail that required some clean up– pulling her pants down– but close enough!) She then asked to go to Starbucks to get vanilla milk and I thought that would be a good reward (yes, my 2-year-old is a Starbucks fanatic, thanks to her dad!).

Before we left, I saw a facebook message pop up on my phone that said a good friend of mine had tagged doublevision blog and wrote how I inspire her. And then I saw an e-mail come in from another friend who clicked on her link and read our blog. She sent me an encouraging e-mail, saying how brave she thinks I am and how she related specifically to a certain post.

So I left on the 2-block walk to Starbucks in this perfect weather feeling on top of the world. Everyone I passed seemed to smile or greet us with happy conversation. Even the birds were attempting to join in the casual conversations. And a bagpiper played beautiful music in front of Starbucks to help raise money for firefighters’ families (seriously, what is it about bagpipes that always gives me goosebumps?!)

I sat on a nearby bench and listened while sipping passion tea and watching my toddler happily slurp down vanilla milk in her stroller. I watched as car after car stopped to hand firefighters dollar bills, showing no sign of a recession anywhere nearby..

As I walked home, I felt like everything was right in the world. I felt good that I had handed a donation to the firefighters. I was elated that little Elli was still dry. I felt inspiring and brave and proud.

And what’s that they say about pride always proceeding the fall?

The day turned on me like over-ripened fruit. Elli peed on our new rug 2 minutes after getting off her empty potty chair. I opened July’s electric bill. Two small foreshadowings of the havoc to come.

I picked my first-grader up from school and asked if she wanted to walk to the shoe store for new school shoes. She was excited and jumped in the wagon, but Elli cried for the stroller so I caved and decided to do the “faux double stroller” with Lucy on top of the stroller (as shown in “Mama on the Move“) As we approached the shoe store, I remembered that we hadn’t brought socks to try on the shoes, and not wanting to spend extra money on socks at the shoe store, I decided to walk the 2 blocks back to grab them from home. Since a friend called to say she was stopping by in a half hour, I began walking quickly, wanting to make sure that we had enough time at the store. I usually try to go slowly when I’m pushing the girls “double-decker” style and hold on to Lucy while pushing, but I was in one of those hurried semi-frenzies as we crossed the street to our block. I was trying to get across the street quickly since there was a car waiting (and I had recently been told by my sister that I’m kind of a slowpoke crossing the street when cars are waiting!) In my haste, I misjudged the distance between the curb and front wheel, and felt the stroller jerk back in protest. And as if in slow motion, my precious Lucy went flying off the stroller headfirst onto the cement sidewalk.

Immediately, people surrounded us and a man ran for ice. Lucy stood up right away but began running hysterically in circles, shrieking in pain. I caught her in my arms and just cradled her, repeating “baby, I’m so sorry” over and over, vaguely aware of Elli staring at us from her stroller, wide-eyed and onlookers shuffling around awkwardly, trying to figure out how to help. The people from the waiting car had kindly pulled over and were looking at her pupils and trying to reassure me with the fact that Lucy has rolled, shoulder first and hit her cheek, not landing head-on. A bruise had already started to form, and Lucy continued to bawl and shriek.

I think the woman from the car could tell that I was mortified and ashamed because she began telling me how her niece did the same thing a few days before. I nodded politely but I couldn’t let myself be comforted. What kind of mom was I?

I felt this ball of guilt and regret in the pit of my stomach. And I felt not one bit inspirational. And not brave in the least. And as I pushed the stroller home, Lucy walking close and whimpering at my side, I felt like nothing in the world was right.

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If you’re wondering what these two ultrasound-looking photos are, they are actually photos of my retinas taken at my most recent appointment. Like I said in Part 1, I learned a lot at this appointment, and the photos were just part of this wealth of information.

While I knew that I had a form of RP known as Lebers, I hadn’t realized that a 1995 blood test revealed the specific RP gene that Jenelle and I have; it is called the CRB1 Gene. This gene, unfortunately, is not the specific gene in clinical trials for gene therapy right now (the treatment that Dr. Fishman feels is the most promising within the near future).

Another gene, the RPE65 gene, is currently in human trials, and from what I gathered from Dr. Fishman, this is mostly due to the fact that it is one of the more common RP genes and that patients with RPE65 tend to have their central nuclear still intact, a necessary requirement for gene therapy

This is a new term I learned today, and they actually took pictures of my retinas to see if my central nuclears were still viable, meaning that the cells are alive and could therefore be receptive to gene therapy. This is, of course, all hypothetical considering the CRB1 gene is not currently in clinical trials. I naively asked whether it would be the next gene in trials, not realizing that there are many other RP genes that have also been identified that would be in the running. He said that research studies are more likely to take place with the genes that affect the most amount of people first. When asked how common the CRB1 gene is, he said it’s right in the middle. So there may be some waiting. He said that the results for the RPE65 gene are promising so far, however, and that once the initial FDA-approval process is over with, the following trials will be able to move at a much faster pace than the first one. Of course, even if the CRB1 gene begins human trials in the near future, Dr. Fishman pointed out that there are still many risks to weigh in whether Jenelle and I would want to volunteer to be among some of the first groups for treatment, especially considering they have to detach your retina during surgery, which could potentially decrease vision even further.

Dr. Fishman himself is involved more directly in some pharmacological studies that do similar work as gene therapy but are taken as medication rather than surgery. Some patients have had improved fields from this drug study, though the patient he was specifically testing did not have improved fields (but improved his acuity by 17 letters, which is substantial).

These are pictures of my retinas. The dark area in the periphery is scarring, or as Dr. Fishman put it, “charcoal ashes from the fire that is the disease”. The small white area in the center shows my central nuclear, which is still intact, though it is a very thin layer. The center of everyone’s retina is thin, but is extremely thin in patients with RP.

As far as other results from this visit, one major disappointment from Dr. Fishman moving offices is that a lot of records did not make it over yet, including my previous visual fields tests. I had been anxious to compare the results of today’s test to previous tests, but such is life Hopefully they will eventually find all of their files.

I did feel like my fields were pretty narrow during the test, but I think I am always surprised by how much I really can’t see when I take the fields test. Marty, my favorite technician who was doing my test, was particularly astonished that in my left eye– the one that can’t even see the giant E on the chart at 20/400, could still see a tiny pen-light in the center of the field test “All-be-darn” was his exact quote. Again, since they don’t have my previous records at the moment, I have no idea whether this is something I could see during my previous tests 3 years ago. While I did a fields test at my local eye doctor in Naperville this past fall, the test was not nearly as thorough, and the technician got really confused while doing the test because she had never done a test on someone with such low vision before, so I can’t use that one to compare to either.

Marty also said that he finds it fascinating how I am able to even walk from the waiting room to the exam room without any problem. He remarked on how the human brain compensates for the missing pieces of vision and fills vision in to make things look like a whole picture when there should really be no way to see the whole picture at all. He said with the vision I have, even walking around should be nearly impossible, but because my brain has filled in these pieces, I’m able to (even if it’s not always very well!) While I have had many of these same thoughts before, I was never sure if they had any actual scientific basis to them before hearing a professional say them.

As I said in Part 1, Dr. Fishman’s care for his patients was particularly evident to me during this visit I’m not sure whether it’s the new office environment or whether maybe I’m just better at asking specific questions now as an adult, but I feel like he took such care explaining extremely complicated scientific information in simple terms that I could understand.

I definitely plan on recording my next visit so that I can actually listen to it once I get home since there is way too much information to even begin to remember, much less reiterate to my family and friends later. Until then, I hope my modest attempt to convey pieces of info from the visit is helpful. Thanks for reading!

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So I visited my childhood opthamologist and world-reknown RP researcher, Dr. Gerald Fishman last week. I have to say it was one of the most eye-opening visits I’ve ever had with him (and this is both pun and literal– you can always coulnt on your eyelids being pried wide open during an exam).

Back in the fall when I wrote, “Trip to Opthamologist” I was pretty darn honest about my memories of my visits with Dr. Fishman growing up, and I have to say that as I sat in his office, I kept cringing imagining if he were to ever see what I wrote “Fishbreath” isn’t the most flattering descriptor for a respected doctor.  (not that a famous researcher would ever be browsing through doublevisionblog!)

Dr. Fishman is now at the Lighthouse for the Blind in Chicago (rumor has it that it was a political upset that led to the switch from UIC Eye and Ear Infirmirary to the Lighthouse). I found it interesting that it wasn’t just the doctor himself who moved practices– his sidekick technician, Marty, who has been with him since 1996, was there to razz me with his usual goofy comments, so it felt like a little reunion of sorts, as I had not been to an appointment for a few years.

He also still had a Fellow working under him, Dr. Collingsby, and I kind of wonder if some of these younger doctors have been the ones teaching their mentor how to improve his patient-communication skills just as he has been teaching them about retinas, as I notice Dr. Fishman has become more personable over the years.  Or maybe it’s me getting older.  Or the new building he is in.

Dr. Collingsly examined me first, and though there were the usual bright lights shone stingingly in my retinas, he had clearly brushed his teeth and carried the aroma of soap, which beats many other potential smells.  He did still emulate Dr. Fishman’s audible, scientific terminology during the exam….. “asteroids in the center vitreous…..look up please……scarring in the outer……all the way to your right please….white lipids…..” which always cracks me up because I have no idea what any of it means, and most of it sounds like they’re looking through a telescope at the solar system, not my retina.

While I think part of the audible descriptors are for the sake of educating the doctors-in-training, the fact that Fishman mutters these terms to himself even when there are no other doctors present tells me that he is simply engrossed in what he does (or he says thing aloud to help remember them in order to write them on my chart maybe?)

True side story today: As Dr. Fishman has my left eye pried completely open with a bright light shining directly on my retina, he says something about looking at a beautiful universe of greens and blues and pigment mumbo jumbo and then mumbles “nothing to do with the RP but I can’t stop looking at these” and then chastises himself, saying “come on Fishman, back to work!” And I don’t think this was crazy-talk or senility or anything. I think he is so enamored with the human retina and all its details that he really, really loves what he does.

At one point I asked him the round-about question I always end up asking. And even though I know he can’t give me a clear answer, I can never stop myself from asking it in some form. So today I worded it, “So I think I remember you telling me that most patients you’ve seen who maintain usable central vision like I do are able to hang onto that bit of central vision for quite awhile”. And he said that’s true of people with 20/40 or better, and since I’m at 20/50, it’s really hard to tell. But what really got me today was that he kind of touched my upper arm and said genuinely, “Because each RP case is so different and there’s not a typical path for anyone, I cannot predict the outcome that you deserve to know.” He said I deserved to know what will happen with my vision. It isn’t possible, of course, but he said I deserved to know. And since I didn’t tape record him, I don’t even remember the exact quote– I think he said it better than what I quoted, but for the first time I felt his sadness in not being able to really help his patients– or even give them an accurate prognosis. How frustrating as a doctor.  Not to mention as a researcher who has devoted their career to finding a cure.

So I’m looking at this doctor– this researcher with the bow tie who speaks in scientific terms with fiery breath way too close to my face.  I stare at this small man who is frail and balding– the same one I dreaded seeing annually as a child– and he no longer appears as the villain. As a kid, your mind interprets events in crazy ways, and these difficult visits filled with bad news, poking and prodding definitely painted the doctor as the antagonist.

And I guess at this visit I grew up and saw how this “antagonist” has devoted his life to RP research well beyond the age most doctors retire (Marty-the-sidekick said he doesn’t know the definition of retirement!  Marty also would not tell me Dr. Fishman’s age, and I thought it would be weird to ask the doctor himself!).

Before leaving, Dr. Fishman asked, “have I answered all your questions?” and after saying yes and walking out of the office, I noticed he had been answering my questions for over an hour (on top of the 2 previous hours of tests)– an insane amount of time to spend with a patient these days.

And that’s the main reason I will make the trip to the city to see him each year instead of simply going to my local eye doctor.  I think any retina specialist can check for cataracts or fluid leaking in my retinas (two risks with RP), but I go to this particular specialist for the education. Yes, I could look online, but when you’re looking online, you really have to piece together a lot of information that may or may not be accurate.

For an update on what the appointment actually found vision-wise, please read part 2!

For as lovely as words can look on a screen, life can really blur them all together when you’re trying to live them out.

I hosted a Mother’s Day brunch at my house today for some of my extended family, which was filled with sunshine, great food and beautiful people.  It was also filled with crap.  Literally.

I won’t get graphic or anything, but I do want to share a little piece of this scenario to give you an idea of how very challenging it can be to place relationships and people first.  I have a family member who is developmentally disabled and sometimes has bathroom issues.  Well, let’s just say that today he had major bathroom issues.  In both our bathrooms.  And on the new bathroom rug.  And even on the freshly-painted walls, discovered by my poor husband hours later.

When I first walked from the outside fresh air into our house and caught a whiff of this accident, my gag reflex went off, and I stepped right back out.  Another family member graciously helped him clean everything up, though further setbacks and clean-ups seemed to continue for quite awhile.  I found myself feeling disgusted and frustrated that this was all happening on Mother’s Day.  And I found that I acted less than gracious and spoke in irritated tones.

As my family members were leaving, I told a couple of them about my blogpost on placing people first and how I couldn’t even post it because I felt like such a hypocrite acting like I care way more about people than my house but then feeling like I wanted everyone to just go away when it got messy.  They smiled with understanding and joked that they wouldn’t tell anyone.  I thanked my helpful uncle for all his clean-up work dealing with the other family member’s mess, to which he replied, “all small stuff”.  And really, in the grand scheme of things, it is, and I know that as a whole.

And I tried to remind myself of that as my husband and I continued to do some aftermath clean-up later.

But the house still smelled like you-know-what, and I just wanted the nice scent of my Mother’s Day bouquet to fill the house as it had before the brunch.

Since we had to be at another gathering, we decided to just open up all the windows, and even left our front doors leading to the screened-in porch open in hopes that it would air out while we were gone.

And it did.

When we walked through the door this evening, the faint smell of cleaning supplies drifted,but mostly just the aroma of evening spring air filled the house.  And it reminded me that sometimes all it takes is a few open windows.  And there are windows I forget to open all the time.  Not just in my house, but in my life.

I know I’m hovering on cheesy here, but it’s true.  I remember to open the windows of all my thoughts, ideals, and insights to the world as I write this blog, but sometimes I forget to open the windows of acceptance to my own family members.  Yes, I don’t have to love some of the things they do, and there are definitely boundaries I need to set with certain people who choose not to work on their issues, but there’s usually room for more kindness and acceptance even when setting boundaries.

For example, this particular family members was mentally capable of taking some medication that could have prevented these accidents today but chose not to, and he also chose to eat food that he knows upset his stomach, and because of that, he will not be asked to the next gathering at my house.  But at the same time, I didn’t even take the time to say goodbye to him today.  I could have still hugged him good-bye and shown love despite my frustration.

I think in order to place people first in our lives, we need to challenge ourselves in the ways that we think about others and act toward them, especially with the difficult people.

There are always more windows that can be opened.  And always more fresh air we can let in.

 

I want to freeze time.  To capture the light blonde and brown tendrils that fly all wispy as my daughters dance around the kitchen putting on “dinner entertainment” for daddy . He eats and laughs, more amused by these two under 4 ft. tall than he probably ever imagined he’d be.  I want to put their little sing-song voices in my leftover packing boxes with heavy packing tape so that they will never escape me.  I want these little years– the ones when they want to play all day – and beg me to stop doing laundry so they can just be with me for 5 minutes — to last.

As I was trudging up the stairs exhausted the other night, I tried to recap in my mind all the things I had accomplished during the day.  I became a little agitated because I couldn’t think of many things I had crossed off my growing to-do list.  But then I remembered the important 2 hours I’d spent crawling on colored carpet squares.

The girls and I had gone with Ben to the church where he works because I was meeting some friends there, and since we needed to wait for his meetings to end before leaving, we spent the whole day there.

We went into the K-5 room which has these fun, colorful carpet circles and began inventing all different kinds of games.  I was a chomping alligator in hot lava while they were toads hopping from circle to circle.  I was the leader of a secret “flower” club up on the little play balcony.  We were robots that could only jump to certain colored islands.

We ran and laughed and played till we were slap-happy with fatigue.  And while those 2 hours of fun were clearly not on my list of things that really needed to get done, I went to bed feeling satisfied that night.

I’ve noticed that since living in a walkable area and having the ability to run a lot more of the errands during the day, my days are sometimes packed.  I also took on a part-time job scoring essays from home this month, so the to-do lists seem to be multiplying.

I ended up needing to create a separate list of things entitled “important things”, and I try to make sure that even if some of the things on my regular to-do lists don’t get accomplished, I at least do the important things each week.

Most of the important things involve people, and one of those is my 82-year-old grandmother who lives  3 blocks away and recently was told to stop driving.  This a little more difficult for her because she doesn’t have the strength of a 33-year-old to walk all over town like I do.  So one of the new “important things” on my list each week is to take the girls to visit her– not out of obligation or anything, but because I value time with her and know it helps lighten her day at a difficult time in her life.

Sometimes this means grabbing a 45-minute window of time, leaving the kitchen a mess or a chore undone, to go spend time with her. And while I wasn’t raised to be okay leaving a mess, I think sometimes in order to put people first in our lives– not our houses or material things– it’s necessary.  Obviously, there comes a time when things really do need to get cleaned up, and I don’t want us living in a disgusting mess or anything, but loosening our reigns on how perfect the house should look at all times can open up space for our relationships to grow.

When I’m 82-years old like my grandma, I hope that my phrase of satisfaction reads something like this:  “My life is full because I put first things first in my life.  I put relationships and people in front of my stuff.” as opposed to, “Wow, I have had a perfectly clean house for the past 82 years– how full and satisfying life is.”

So this post used to end right here, and there was no “part 1” in the title.  That was a week ago when I thought that this was the easiest, simplest concept in the world…… when  sunny strolls to grandma’s house trumped dirty dishes in the sink (okay, they still totally do, only I’ve realized that sometimes extra complications arise that challenge our ideals…. and that’s why there’s a part 2, so stay tuned if you can relate!)

 

In conjunction with my last post, I wanted to share a brief snippet from one of my new favorite books, “One Thousand Gifts”.  While this author is not visually impaired and the content of the book has nothing to do with RP, I think you will find it inspirational nonetheless.  Using some of the best writing I’ve read in a long time, Ann Voskamp speaks truth about noticing and giving thanks for ordinary aspects of life– even the aspects that are difficult and painful.  This book has challenged and deepened my faith as a Christian.  I found myself smiling to myself at many parts, laughing and even flat-out weeping in the middle of one chapter.

It’s one of those books that really stays with you and helps you glimpse life anew. Interestingly enough, I noticed that she uses quite a bit of vision metaphors and in ways I hadn’t seen used before.

Even if you don’t have time to read the book (or listen to it– it has won awards for the audiobook version!), I think the clip alone will inspire you to slow down and be thankful today!

http://www.youtube.com/watch?v=GhOUaszMGvQ&feature=youtube_gdata_player

(note: During the month of October, you may notice me posting more often than Jenelle.  This is because she lives in this amazing tourist town with one of the best Oktoberfests outside of Germany (hence, she hosts friends and family in her home most of the month!)  She’ll be picking up my slack, however, in December when my pastor/musician husband will probably be working crazy hours!)

Please excuse the pun-intended, inappropriate title, and I apologize that the corresponding story is not as funny as the title!

I must admit that my sister’s post, Flying Balls and Other Memories, while completely funny and moving, brought up some baggage for me…. those nervous stomach-aches I would get as my 3rd grade class marched down to the gym for PE class.  I never knew what lay ahead for me and the anxiety this produced is probably similar to kids with dyslexia right before they are asked to read aloud– the impending doom of knowing without a doubt that you are about to be humiliated in front of other kids.  And so begins my 3rd grade hockey unit in PE.

Take a moment to imagine the risks involved for a child without peripheral vision playing hockey.  Getting hit with the puck, maybe?  Or with a hockey stick?  I had the privilege of being smacked with both, one after another, right in the nose.  (Parents of children with RP– take note– get your child excused from PE during hockey, or at least a face mask!)

Fortunately, since it was elementary school, the sticks and pucks must have been made of plastic, although they still hurt.  The impact was enough to pop a blood vessel in my nose that caused quite a gusher.  I remember Mr. Houk, our PE teacher, taking me straight to the nurse’s office.  But when we arrived, the nurse was not there, so he left to look for her, leaving me sitting in a chair pinching my hose to stop the bleeding.  It was bleeding so much, however, that pinching it with the one kleenex he had handed me in the gym just wasn’t enough.  The kleenex was soon soaked, so I just cupped my hands under my chin as blood pooled in my palms (apologies for the disgusting visual– kind of a necessary part of the story though).

Mr. Houk returned after several minutes, and I remember feeling relieved to see him, thinking that he would surely feel bad for me and help me.  But my relief soon turned to confusion as he yelled, “What are you doing?!”  He quickly grabbed a box of kleenex that was near me, though out of my line of vision, and shoved it on my lap.  “Why are you just sitting there? Use these!” he barked, clearly angry that I was making such a mess and that I hadn’t seen the kleenex.  Hot tears streamed down my small face as I realized what I should have seen.  I felt embarrassed and ashamed and remember thinking to myself, “Why am I so stupid?”

Like Jenelle said in her post on PE class, I can’t believe that something that happened 24 years ago still causes me to tear up as I write about it.  I guess it’s one of those memories that I just pushed to the back of my mind, hoping it would disappear (what are those called, Psych. majors, repressed memories?)

As soon as I thought about this incident after reading Jenelle’s post, I decided to bring it up in counseling to figure out how the heck I can forget about it for good.  My counselor, of course, pointed out that I can never “erase” my memory, but she advised me to sit down and write about the incident, recount the emotions, but then to think about the truth regarding the incident.

All these years I have been thinking, “I should have grabbed the kleenex.  I am so stupid!”  And those are probably reasonable thoughts for a 9-year-old to have.  But I’ve grown up, and I need to put a “grown up” filter on the situation in order to see the simple truth.  The truth, of course, is that the box of kleenex was not visible to me.  An adult teacher should not have expected me to see it on my own and should not have shown anger or irritation.  I was not inadequate or stupid.

The funny thing about counseling is that some of the things you end up realizing are completely simple and obvious to others but remain a blind spot to the one person who could benefit from the truth.  So visually impaired persons are definitely not the only ones with blind spots.

Unfortunately, when you start believing lies about yourself at a young age, they tend to start building on one another– and eventually they catch up to you.  If you consistently perceive that you are inadequate and stupid, for example, you begin to believe that’s who you are and sometimes even act that way.  So as adults, we need to do some major deconstruction to maintain a healthy view of ourselves.  It’s hard work, and I must admit that I still have a lot of work to do.

Even walking into my daughter’s elementary school brings up a fair amount of anxiety for me but has also motivated me to deconstruct more stories from my childhood to find the truth.  My goal is to unravel the lies I believed about myself– all the messages that said, “You’re stupid and inadequate” so that I can both be and feel like an adequate, intelligent adult who does not allow vision or perception to define who I am.

I have read several comments on our blog that say “RP doesn’t have to define you”, and it’s an expression I am familiar with– I even wrote it confidently in a college essay about RP.  While I think this statement is true, I also think it can be misconstrued.  For example, at times I have worked so hard to NOT let it define me that, in so doing, I accomplished the opposite. If you’re constantly trying to hide something, you oftentimes end up revealing it even more.

Perhaps you have something in your life that you try to keep hidden.  Perhaps something from your past that you constantly try to forget?  Consider trying the process I went through above with your own past.  Recall the incident and fully go there– emotions and all.  Then deconstruct it as an adult.  What really happened?  What is the truth?  I hope you will find, as I did, that the incident says a lot less about who you are than you thought it did.