It might seem as though Joy and I are just going to ponder our upcoming treatment for the next couple weeks.  But fear not, loyal readers – I’ve decided to post about something other than pre-treatment jitters.  As part of my goal to focus on the present, I’ve been taking the time to do some of the things I really enjoy in life – baking, cooking, reading, yoga, and hiking.  This last one might be surprising given A. I am a girly-girl, and B. I have RP.  Despite these two facts, I still enjoy a good hike.

This weekend was full of sunny crisp fall weather – the kind that makes you want to put on a cozy scarf and head outdoors.  My husband and I decided to take our 2 year-old daughter and little black shi tsu hiking on some nearby trails.  We live up in the mountains where amazing hiking trails are literally in our backyard.  This weekend, we decided to drive up Icicle Road and look for some new trails that we’ve never explored.  Just the 5 minute drive up the Icicle made me feel relaxed yet energized by the array of colorful trees and clear blue sky.

We first stopped at an unmarked path, Torrey parked the car at the side of the road, and I quickly made note of the HUGE drop off just a few feet outside my passenger door.  As we climbed the dirt path, weaving in and out of shrubbery and over-growth, my heart soared with the feeling that only good old-fashioned exercise and fresh mountain air can bring.  I absolutely love hiking with Torrey (hubby) because he doesn’t hover over me and gives me the space I need to hike at the pace that is right for me.  He typically leads the way, holding Cora’s hand, turning every once in a while to call out, “There’s a lot of branches hanging down up here, so watch your head”, or “Careful of this large log coming up”.  He doesn’t hold my hand or watch skeptically to see if I’m going to miss a step.  He fully trusts in my ability to hike using the aid of a walking stick he found for me in the woods.  I refer to it as my “makeshift cane”.

Hiking up the trail is actually the easy part for me because there’s enough contrast for me to follow the trail.  The way down is the most challenging part of the hike because my depth perception is not good, and it’s harder for me to find where I need to step next.  This is the part of the hike that I use my walking stick as a cane – moving it quickly from side to side to “feel” my way down the trail.  Torrey and Cora typically hike at a faster pace than me on the way down, but that doesn’t bother me.  I actually kind of like it because once they get to the bottom, Torrey holds Cora up so that she can watch me hike down, encouraging me with lots of cuteness, “C’mon mama – good job, mama!”

After the first trail, we stopped to take a few roadside pics and then drove further up the road to a trail called “Fourth of July”, which seemed fitting for me because hiking gives me a nice sense of independence.  This trail was a bit steeper than the first one, but the view at the top made the climb well worth it.

So I went to the Opthamologist a couple days ago.  It was my first visit in about three years, and it was just with a local Opthamologist near my house as opposed to the specialist I have always gone to downtown Chicago.  I received a letter from my specialist about a year or so ago, saying that he was retiring, and since he was the main reason I went to that clinic, I opted to just get a referral from my FP.  For some reason, I thought that going to a new office would lessen my anxiety, since I have never liked going to the eye doctor, but I found myself a nervous wreck the morning of my appointment.Growing up, I always dreaded the day-long visit to our Opthamologist in Chicago.  His name was Dr. Fishman, a world-reknowned RP researcher and specialist, and he was the epitome of a stereotypical nerdy professor, complete with bow-tie and medical terminology that went way over my head in conversation.  Since his office at UIC was a teaching hospital, I could always count on a couple “trainees” standing over me in the dark as the brightest-possible light from his nifty head-lamp shone directly in my pried-wide-open eyes.  “Hold it there….steady…” I remember him saying, breath in my face (in hearing about the visits growing up, my husband affectionately nick-named him “Fishbreath”, as he could have used a good breath mint).

“See these islands and pairing here with the red pigments….” he’d begin, and for about 20 minutes in that dark room I was not Joy– a living, breathing being with hopes, dreams, fears, and feelings– I was a lab rat demonstrating the atrophy and rapid decline of millions of cells in the retina.  And since I knew, even on some odd level as a child, that this doctor was doing this to hopefully find a cure one day, I’d succumb for the most part, wincing here and there when it became too uncomfortable, but mostly I’d will myself to think about “happy” things– plans for later in the day (as a child, the trips always involved stopping at Ed Debevics for lunch afterwards, so that gave me something to look forward to!)

The remaining parts of those visits usually entailed a standard eye exam, such as reading charts, dilating eyes, glaucoma test, etc.  And, of course, the dreaded visual fields test, which didn’t hurt at all, but always caused anxiety since I knew that its results would tell me how much periphereal vision I had lost since the previous visit.  I remember trying to fake the technician out as a pre-teen.  I was only supposed to “beep” the little buzzer when I saw the light, but I’d beep it randomly, hoping that it would “up” my scores and that they’d tell me I had more vision than I did.  Looking back, I wonder why I would want them to report a higher number since it obviously wouldn’t change the fact that my narrowing fields still affected my daily life.  Plus, if I couldn’t fake them out as well the following visit, it would make my decline look even worse (yeah– I was not the most logical thinker as a 12-year-old).  After awhile, the technician was on to my games, however, and asked me to state where the light was each time I hit the buzzer. Busted.

It was not the visual fields test that worried me a few mornings ago, however.  Going to a new office, I suddenly began to think about some of the “once-in-awhile” tests that I’d have to undergo as a child– the ERGs, the photos of my eyes, and the placement of hard contacts in my eyes (can’t remember why they did that, but it hurt!)  These more invasive procedures did not occur at every visit, but they were definitely tests that went on during those preliminary visits when they were first trying to diagnose my sister and I when we were kids.  And since this was a first visit at a new office, I wondered whether they’d need to do similar tests.

I really didn’t need to worry.  In fact, by the end of this visit, I was the one practically begging for more tests.  Even though this was an appt in a major metropolitan area with a retina specialist from a major medical group, it was probably the most unthorough, basic exam I’ve ever had.  While I’m not sure that’s necessarily a good thing, it definitely put me at ease.  I was mostly just confused about the technology while I was there.  That, and the knowledge of the technician.  He seemed to know nothing about RP, and when I asked whether I was going to have a visual fields test, he looked confused and went to ask another technician.  I overheard him talking to two technicians in the hallway, asking whether he should put orders in for a visual fields test.  I heard one of the technicians ask, “Retinitis Pigmentosa?  Isn’t that night blindness?” and another technician chime in, “Just do a family history on her.  I’ve only seen the doctor order one of those fields test one time.”  And this technician wasn’t joking; there wasn’t even a technician who knew how to do the field test on staff that day, so I had to schedule it for a future date.  And the funniest part was that the technician decided to do his own “makeshift” fields test on me when he returned, having me just stare at his nose and tell him when I saw his finger.  I had trouble concentrating on the “test” because I kept analyzing his oddly-shaped nose in my head, trying to figure out why it was so much shinier than the rest of his face.

So when another technician came to take me to get photos of my eyes, I was expecting the same rudimentary-type scenario, especialy since I remembered having my eyes held open with Q-tips as a child while photographs were taken.  To my relief, there was an amazing machine that took pictures easily without any need for pried-open eyes or Q-tips.  She kept apologizing while taking the pictures, saying “I’m sorry this is so uncomfortable” because she spent a lot of time readjusting my head to get just the right angle.  I tried to explain to her that this was pretty much a spa treatment compared to my UIC appointments.

When looking at the Opthamologist’s name before he entered the office, I was expecting a man with a thick accent to walk in the room, and i imagined that he would throw around medical jargon like Dr. Fishman did.  But within 1 minute of meeting him, I could tell that he was completely different from my lifelong specialist.  He had a full set of hair, wore snazzy clothes and cologne, and was about as personable as they come.  I have to admit that I was very skeptical of this younger hot shot, especially after having to explain RP to his technician, but I soon realized that he’s a retina specialist for a reason. He spoke very highly of Dr. Fishman (who, by the way, is now volunteering at the Lighthouse for the Blind and cares very much for his patients despite my lab-rat comment).  He was up-to-date on all the latest research, and he was definitely the most hopeful-sounding eye doctor I’ve ever spoken to.  At one point, he looked right at me and said, “With all the break-throughs in stem cell therapy, there will very likely be a cure in your lifetime that will not only stop degeneration but will most likely reverse it as well.”  Wow, I think my parents, sister and I would have flipped over if we had ever heard Dr. Fishman say that 20 years ago.  I remember my dad trying to press Dr. Fishman for some hope, asking very specific questions about when and if a cure would be found, and Dr. Fishman was always careful with his wording and would say “It’s possible”, but usually with nervous hesitation.  I think he tried hard not to be misleading, but he definitely didn’t leave us with a feeling of hope.  I usually had to get that from my parents after eye appts.  I remember my dad always saying, “Science is moving ahead every day, and I truly believe that there will be a cure in you girls’ lifetime”, and I remember I loved hearing him say those words, and growing up I believed them.  But there defintiely was something different about hearing a doctor say it that gives me hope as an adult.

While it gives me hope for the future, my sister and I are getting a little tired of waiting for western medicine to come up with a cure.  We’ve begun to look at other routes, specifically eastern medicine, and we are equally intrigued by what we have found.  In fact, my sister’s next post will talk about our upcoming treatment that we will be undergoing in just 3 weeks!  Stay tuned…..

As the days get shorter and Halloween creeps up, I’m reminded of how much I despise night blindness.  I shared some stories about night blindness in an earlier post, When Darkness Comes.  But today I’m not in the mood for an in-depth emotional analysis of how night blindness affects my life.  Today I want to amuse myself (and hopefully others) with a strange result of a faulty retina – spooky red eyes in photographs.  I’m easy to spot in the below picture – just look for the wild red eyes!

I’ve often wondered why my eyes are almost always red in pictures using a flash.  Even when other people in the picture have normal-colored eyes, mine are red.  When others’ eyes look red, mine look crazy red.  I’ve always thought that it must have something to do with my night blindness, but wasn’t entirely sure how it’s all connected.  Curiosity led me online to learn what the experts are saying about this red-eye effect and sums it up nicely, “Red eye will appear in pictures if the camera’s flash hits eye’s retina or if the subject’s iris doesn’t have enough time to sufficiently contract. While this phenomenon can be irritating to photographers, ophthalmologists use it regularly to conduct eye exams, specifically centered on the retina.”  Wikipedia gives a more thorough explanation of the red-eye effect in case you’re interested.

Thanks to photo editing software, the red-eye effect doesn’t actually ruin my favorite pictures.  But it’s not like people take the time to edit the red-eye out of pics before posting on Facebook or printing off copies for friends, so I do feel a little self-conscious when I see my spooky red eyes in photos.  As you can see in the below pictures, my two sisters on the right that don’t have RP do not have red eyes, but on the left, Joy and I look a bit demon-possessed.  Rest assured, we are not possessed.

If technology doesn’t bring us a cure for RP, I hope it can at least develop better amateur flash photography methods.

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!

(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!)

So last week my daughter was the first one to the bus stop. I knew we were running ahead of schedule (a rare novelty), but I still wondered if maybe school had been cancelled (or was it Saturday?) as my kindergarterner, toddler and I stood by ourselves at the bus stop.  No seriously– where was everyone?

Worry turned to amusement as a 3rd-grade-boy approached the bus stop and said “Good job being first, Lucy!”  My 5-and-a-half-year-old could barely contain her excitement at being first as she pranced around the bus stop.  And honestly, for a little girl who must be coaxed out of bed every morning and dresses herself in slow motion, I myself felt like prancing around in celebration of her feat.
Soon, the rest of the herd arrived and the 3rd-grade-boy began telling each kid where to stand in line (just because Lucy was first to the bus stop did not mean she’d be first on the bus– the 3rd-grader had organized a system to allow each kid a turn to get on the bus first…he’s quite the organizer).
As we heard the squeaky groaning of our giant yellow friend rounding the corner, 3rd-grade-bus-stop-organizer asks, “Lucy, where is your backpack?”  Oh gosh.  Panic  “Mom– it’s by the back door!” Lucy yells.  Without missing a beat, I turn to the other moms and say, “I’m running for it!”
I begin sprinting toward the house (take note, VIPs reading this are WINCING because they just KNOW that an injury is about to be had, for rushing + low vision almost always equals an accident). Lucy’s princess bike lay in front of the door inside the garage leading to the house, and even as I trip over it, the pain in my ankle does not fully register because the backpack mission is still underway.
I then hear shouting from the bus stop as I open the door to the house.  I hear Lucy yell something that sounds like “I found it!” I feel quickly around the front door, try to scan around the room to see if the backpack is there, and then decide that she must have, indeed, found it since I don’t see it anywhere.
I race back to the corner. All the kids are on the bus waiting, and Lucy is standing there staring at me, asking for the backpack.  Apparently she had yelled “hurry”, not “I found it” (yes, I know– those two phrases sound nothing alike….)
Lucy starts to walk back toward the house, unaware that she is about to make 30-40 children late for school, so I turn her back around and tell her it’s too late and that she needs to get on the bus without the backpack.  She hangs her head and looks like she is going to cry.  I try to think of something–anything–to say that will make her get on the bus.  “I’ll drop your backpack off at school!” I blurt out, despite the fact that I had no idea how I would actually get to her school. She slumps onto the bus, and I slump home with Elli, limping on my swollen ankle (this was a week ago, and I STILL have a giant bruise from it!)
Of course, when I walked back into the house, the backpack was sitting right by the garage door, in plain view, taunting me “I-was-right-here-all-along!”
Fortunately, I ended up getting a ride to deliver the backpack from my good friend who took pity on my description of poor Lucy slinking onto the bus.  But the stress of the morning– silly as it sounds now– stuck with me throughout the day.  Why didn’t I notice that she wasn’t carrying her backpack?  I was tempted to get all upset about how RP loves to wreak havoc on my day but then remembered a conversation I had recently with a friend and loyal blog reader.
After reading my last post “Good Grief/Dear RP“, she told me how there were a number of things in my “hate letter” to RP that she finds herself doing, unrelated to vision, and pointed out that some of the incidents I end up feeling embarrassed about are things fully-sighted people do too.
As Jenelle and I talked about this conversation later, she said “Yeah, I have had friends not see props at yoga class or need me to point things out to them that I would have been too self-conscious to ask about, thinking it was because of my vision.  I think sometimes we give RP too much….something”.  Yes, too much credit or blame.  Sure, it does result in a number of accidents that are clearly vision-related.  But some mistakes, mishaps and embarrassing incidents are just from being human, and if we are constantly embarrassed, thinking that every little thing that goes wrong is due to RP, I imagine that we could become pretty darn paranoid, not to mention a complete drag to be around.
There are, of course, certain precautions that we VIPs should take.  Like using mobility training or asking for assistance.  And, clearly, slowing down (but again, this is a lesson that non-VIPs sometimes need to learn as well).
A VIP-friend of mine just told me about how she was rushing the other day and knocked a glass off the counter, cutting her hand in the process.  She said that she cried because she was mad at RP and really hates the idea of it slowing her down.  I remember telling her that I sometimes feel thankful when it slows me down– when I’m stuck without a ride and have to miss something and stay home instead– it sometimes keeps me sane…. the slowing…..  It also allows me to be more aware of my surroundings and to fall in love with the small joys in my day.  It reminds me of a line that keeps repeating in a new favorite book I’m reading:  “Life is not an emergency.”  Truly, it is not, but I often act like it is when I panic over forgotten backpacks.
VIPs and non-VIPs alike– be gentle on yourself today– you’re allowed to make mistakes once in awhile, and to slow down your pace and pay attention to the subtle joys.