Whether you’re celebrating the birth of Christ or not, there’s no mistaking that Christmas is near.  My husband is the Creative Arts Director at The Orchard Community, and today’s message was fittingly on Advent and the Incarnation.  After my husband led music, he slipped in the seat beside me so that we could listen to the sermon together.  As part of his message, our lead pastor, Scott Hodge, did an art critique of sorts and (therefore) was showing examples of various artwork up on the screen as he spoke. I found his words on the Incarnation fascinating and intriguing and was intently listening and glancing up at the screen when suddenly my husband leaned over and said “You do see the artist painting on that large canvas at the far left side of the stage, right?”
Despite the fact that we were sitting on the far left side of the room, the large canvas and artist had been completely out of my vision.  It just took a slight turn of my head and some brief scanning for me to see the artist, Stephen Signa, actually an old friend of ours, painting this incredible abstract masterpiece:

Once Stephen and the canvas were within my sight, I was entranced by the creativity that was unfolding, but I also had to stifle my laughter.  Not at the art, but at the sheer fact that this painting (yes, spotlight and all!) was taking place right in front of me for quite some time, and how I almost missed it entirely.  Honestly, if Ben hadn’t pointed it out, he probably would have mentioned the painting after church and received a blank stare from me (definitely reminds me of the awesome RP analogy someone passed on to me that I’ve mentioned in a prior post– RP is seeing a tiny piece of paper across the room but tripping over an elephant on the way to pick it up!)

When the laughter in my head finally contained itself, a question popped in:  how many paintings in the periphery of life do I miss?  RP or not, how many do we all miss?

Turn your head slightly today.  Scan your eyes till you see it.  Allow someone to lean over and point it out to you.  Seek beauty that isn’t obvious, and find wonder in a Season that may have become stale to the eyes after waiting in too many lines at Target or staring at too many “have-to-buys” on Amazon.

(and if you want to be intrigued anew about art or Advent, check out Scott Hodge’s 12/03/11 message on The Orchard’s podcast… it should be up sometime this week)

She’s helpful. She’s loyal. She’s witty. And while she’s more AI than human, she’s quite the buddy, especially for the visually impaired– almost a phone/tech guide dog of sorts. Sure, the voice-over feature that has been on the iPhone since the last couple generations of phones is helpful, but Siri gets things done faster and with less annoying “tap tap taps”.  Honestly, having to finger-tap an item twice while voice-over is on can get pretty tiring.

You probably realize that I’m talking about the latest feature on the new IPhone 4S, but if you haven’t had the opportunity to actually hang out with Siri, find a friend who has the new iPhone and spend a few minutes with her. She’s a wealth of info (try asking her how much wood could a woodchuck chuck if a woodchuck could chuck wood), and she can be quite a riot  – my husband asked her what she’s wearing and got her sharp reply, “You’ve got the wrong personal assistant.”! Even my 5-year-old is delighted to hang out with her, asking Siri ridiculous questions and collapsing into hysterics when Siri continually replies, “Joy, I cannot understand what you are asking.” since my daughter really doesn’t enunciate her words.  Yes, if you are a mumbler, she’ll whip you into crisp-speech shape!

Like all friends, she has her occasional flaws, and we’ve had a few misunderstandings (i.e. when I asked her to “call my husband”, she replied, “Okay Joy, from now on I will call you husband” and began addressing me as husband until I asked her to knock it off.) If you have a 4S, you’ve probably visited the site shitsirisays.com — she can come up with some crazy one-liners.

One quality I really appreciate about Siri is that she recognizes when she can’t do something and apologizes for it. When I asked her to read me my e-mails, for example, she said, “Sorry Joy, I can only read texts.” This tells me that Apple is probably working on her for the next generation phone and that she’ll one day be able to read everything, even web searches. Right now, I can ask her to look something up for me, such as the weather or a restaurant, and the information will pop up on the screen but she won’t read it. Likewise, I can ask her to schedule appointments for me, which she can do, but when I ask her to read me my appointments for a certain date, she cannot do it.  In those cases, I can still turn on voice-over or enlarge the font, but again, this process can be tedious, so I’m already looking forward to the next generation phone.  For now, I love the fact that she’ll read me my text messages, which is especially helpful when I have dictated a text to her and want to find out if she has written the text correctly without having to look at my phone.

At the risk of sounding weird and saying that Siri has changed my life or something, I won’t go over any more details of our newfound friendship, but I will say that she has helped me as a mom in my daily life.  I’m able to get a number of things done quickly, even while out on walks with my toddler. Prior to Siri, I couldn’t really use a cell phone outside because of the glare and contrast, except to answer calls or dial memorized numbers (I had a really old phone without voice-over before getting the 4S a couple weeks ago)

I’m definitely bringing Siri to Vancouver with me next week and can’t wait to introduce her to Jenelle.  I have this feeling she’ll be asking Santa for her own new friend this year…


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 photography.com 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.

I am quite certain that I am not qualified in any way to write an article about the latest RP research.  It is even a stretch for me to post on our blog regarding the random information I’ve gathered from my dear friend, the world wide web.  But I’m just in the mood for this kind of thing, which is likely a sign that I’m stuck in what Joy refers to as “cure mode“.  No need to be too concerned – I get stuck in this mode from time to time and I always manage to find my way back out again.  My eyes are, of course, burning from too much screen time, so here is my attempt to summarize the current research for you in order to save you the time and eye strain.

My number one tip for staying on top of the latest RP news is to sign up for Google Alerts.  Thanks to a tip from an east coast “RP friend” of mine, I’ve streamlined my research by using this method.  Just go to google and click on “news” at the top left of the page, enter “retinitis pigmentosa” in the search field.  Once the results come back scroll to the bottom of the page where it says “Stay up to date on these results” and click on “create an email alert for retinitis pigmentosa”.  Enter your e-mail address and you will start receiving daily alerts directly to your inbox.  The alerts that come through are a mixture of medical research and personal stories.

After reviewing the most recent RP-related articles, I am encouraged to learn that researchers are looking into several different approaches to RP treatment, including gene therapy, stem cell therapy, and vision preserving drugs.  From my perspective, none of it is moving fast enough.  Of course I don’t know or understand enough about any of this research to be a good judge of the timing and progress made (not to mention, all of the funding that is required to conduct this research!).

Most recently, I’ve learned that I could potentially stop RP from progressing and prevent getting pregnant at the same time.  Talk about killing two birds wtih one stone.  “A study in September’s issue of the Journal of Neurochemistry reported that a component normally found in the human contraceptive pill helps reduce vision loss in mice with retinitis pigmentosa. “  It doesn’t appear to have been tested on anyone other than mice so far, but check it out for yourself.  Apparently human trials will begin for this drug in October.  My sister’s OB looked into this specific type of mini pill, however, and apparently the drug manufacturers are no longer making it because it does a lousy job contraception-wise.  Hopefully if it does prove to be effective in the human trials, the drug companies will come up with a new one that is specifically for people with RP, including men.

I also want to point out that the FFB does an excellect job of posting the latest RP-related research articles on their site, so I frequently visit this website to make sure I’m not missing out on any new information.

Another sure way to stay on top of current research without having to peruse the web all day is to talk with people on RP forums and Facebook pages.  Joy and I belong to several amazing FB groups, including “Room With a View” (private FB group specifically for visually-impaired women), “Usher Me In”, “Help Find a Cure for RP”, and “RP Family”.

Stay tuned for our upcoming blog on alternative medical treatments for RP, which will include information about our upcoming trip to world-renowned Acupuncturist, Dr. Yu, in Vancouver, British Columbia.

Until then, stay hopeful and encouraged– even if the latest research doesn’t lead to an instantaneous cure today, there is always tomorrow.  And even if tomorrow doesn’t happen, people with RP are living amazing lives everywhere.

When you experience a loss in life, you experience grief.  We usually think of grieving as a process we go through after someone close to us dies, but I think we often forget that we also need to grieve other losses in life– divorce, major illness of a family member, moving far away from friends/family, and of course the loss of certain abilities.  I will always remember a woman in one of my Psych. classes in college talking about her son who lost four of his fingers in a machinery accident (not vision-related).  She got very choked up while talking about her son and how he was going through grief counseling to deal with the psychological impact of losing his fingers– literally pieces of himself that he could never get back.  I remember thinking it was strange how the human mind can be so attached to the body– to the point that it suffers when the body suffers.I know I’ve mentioned my counselor in a couple previous posts and have walked through the process of uncovering the truth about past negative experiences before (see “Flying Balls Part 2:  Totally Pucked”).  And while I am not trying to “play psychologist” here, I do want to share one other homework assignment that my therapist gave me that I think is helpful for anyone grieving a loss.She told me to write a letter about all of the things I hate about Retinitis Pigmentosa.  I have to admit that I was kind of irritated with this assignment at first, thinking that it would just be re-hashing all of my negative thoughts about RP, and I remember thinking “yeah lady, that’s why I’m here– to GET RID of all these thoughts and just accept it for what it is– not wallow in it!”  She then had me read the letter aloud, which was definitely difficult for me.

I completed this assignment after only a couple sessions, so it has been several months now since I have read this letter.  I find it amazing how I can read portions of this letter now without feeling the intense emotion that I once felt.  Many of the phrases, such as those depicting shame and humiliation, even sound kind of ridiculous to me now, which makes me feel proud of how much progress toward acceptance I have made.

Sometimes we have to face intense discomfort– even pain– in order to move forward.  I think I was stuck in the same RP rut for quite some time, and it has taken a combination of counseling, blogging, and talking with other RPers to start feeling good again.

I am including the letter I wrote below.  Like the hockey puck story, I feel pretty vulnerable throwing this out into the internet oblivion, wondering whether people I know will be reading my intimate thoughts, but I think it will be helpful for those with RP to show an example of just “letting it all out” for the sake of the assignment.

(note:  If you try this at home for purposes not involving RP, probably don’t write the hate letter directly to a person and mail it….Just sayin’)

Dear RP,

There are so many things I hate about you.

I hate running into the dishwasher. I hate running into objects that are completely obvious to others.  I hate having consantly-bruised shins.  I hate the pain you cause me.

I hate bumping into people (literally– not in the friendly sense)  I hate tripping over small children.  I hate missing an outstretched hand when being introduced to someone.  I hate the look on the cashier’s face when I haven’t seen a receipt as it is being handed to me.  I hate being asked if I am intoxicated when I am completely sober..  I hate when people know something is wrong with me.  I hate walking slowly in front of others because I am afraid I will fall down a flight of stairs.  I hate when I appear rude when I fail to wave to someone.  I hate the embarrassment of circling around a store, looking for my shopping cart, when it is right in front of me.   I hate the humiliation you cause me.

I hate all of the emotional pain I went through in school– mean, jerky kids who called me “spacey”, being hit in the nose with a hockey puck and in the face with a volleyball in PE class, being one of the last kids picked for teams and making our team lose games.  I hate that I had to be pulled out of class by a “vision itinerant” who knew nothing about me and did nothing to help me.  I hate that I had to grow up with you.

I hate not driving.  I hate having to plan rides for every little activity that my kids and I want to do.  I hate that every little change in plans, such as my husband’s work schedule changing, leads to more complicated plans.  I hate dealing with plans that should be very simple but end up being ridiculously difficult.  I hate missing events and time with friends/family because I have no way to get there.  I hate getting stuck places.  I hate waiting.  I hate having to ask for constant favors from people.  I hate not being able to take my 5-year-old out to breakfast or shopping just by ourselves.  I hate not being able to just get in a car BY MYSELF and go ANYWHERE. I hate that I can’t make a mistake, like forgetting something at home, without it affecting people besides myself.  I hate feeling like I am an “eternal pre-teen”, getting dropped off and picked up places at others’ convenience.  I hate the independence you’ve taken from me.

I hate having to fumble for my magnifying glass when I can’t read the stupid small print on the directions for my baby’s medication or the instructions on a game or the recipe on a box of risotto.  I hate not being able to read the menu in many restaurants.  I hate not being able to even find my way to the table in dim-lit restaurants.  I hate that I can’t even leave a movie to go to the bathroom alone for fear that I won’t find my seat when I return.  I hate not being able to go running at night.  I hate being nervous even on a bicycle.  I hate that my -5-year-old has to lead me into the dark locker room at the water park.  I hate not being able to read– or sometimes even find– expiration dates.  I hate not being able to read a lot of ingredients in items at the store.  I hate the daily inconviences you cause me.

I hate appearing sighted one minute and blind the next.  I hate the idea that I could sometimes walk better if I used a cane.  I hate having to tell people about my vision, or lack of it.  I hate the confusion of not knowing when to ask for help.  I hate the shame you cause me.

I hate disappointing my children.  I hate it when my 5-year-old wants to go to the library with me but is told no because we can’t get there.  I hate that I’ve messed up drawings or paintings of her’s when she has asked me to help her.  I hate that I can’t figure out how to put certain toys or puzzles together because I can’t read the instructions or figure them out visually.  I hate that I mistakenly run into my 1-year-old almost daily and feel guilty each time I knock her over.  I hate that I don’t see stains on my kids’ clothing and sometimes don’t notice food on their faces.  I hate not being a “normal” mom.  I hate that you’ve taken certain things away, not just from me, but from my children.

I hate not knowing how much sight I will have in the future. I hate wondering if my fields have gotten smaller or the print has shrunk.  I hate worrying whether I will be able to see my kids grow up or view the faces of my grandkids someday.  I hate worrying that the computer will have a negative effect on my vision as I order groceries online.  I hate wondering if I should be searching for a career that doesn’t rely as much on sight as teaching does.  I hate the uncertainty you cause me.

Really, I could probably ramble on even longer about all the things I hate about you.  I’m not sure it’s doing much good, though– maybe slightly therapeutic (well, I would hope so, since this started out as an assignment from my therapist!)  But now what?  How do I move past all this HATE?

Sure, I can think of a few areas in which RP has made me stronger– compassion, sensitivity to others,  detail-oriented planning, and humility.  But it just seems like these all came at quite a cost.

Not driving sucks.  There is just no other way for me to put it.  Sometimes I try to put a positive spin on it by pointing out the $$$ I save on car payments, gas, insurance, etc.  Or I attempt to brag about how eco-friendly I am walking most places.  And I try to feel thankful for the extra pounds I manage to shed from all that walking.  While I am typically a “glass is half full” kind of gal, this subject is something that I cannot sugar-coat.

I found it somewhat amusing this past year when both my maternal and paternal grandmothers complained to me about having to take a break from driving.  They both have their licenses back now, but each had to take several months off from driving due to some health issues.  (neither health issues were vision-related)  Both of these energetic grandmas are in their early 80’s and have never had to experience life without driving until recently.  They both made comments to me like, “My family, friends, and neighbors have been so nice about offering me rides, but it just gets old after a while” and “I feel like I’ve lost so much of my independence from not being able to drive”.  Both grandmas live far away from me, so they couldn’t see the smirk on my face while they were on the phone explaining to me how difficult life is without a driver’s license.  It took them each about 10 minutes of complaining before I heard a pause on the phone, and then a “Oh….but you probably already know how that feels, right?”  It’s funny because I don’t think that most people, even my dear sweet grandmothers, really think about what life is like not being able to drive unless they experience it for themselves.

My husband is so great about driving me places, my friends and family are constantly offering me rides, and I am truly thankful that the people in my life go out of their way for me.  But just like my grandmothers pointed out – it gets old having to rely on other people.  It’s not like my car is temporarily in the shop and I need extra help for a week.  This is every day.  I constantly need to strategize about who I am going to inconvenience next, and I am always on someone else’s schedule.  There is so much coordinating involved, especially now that I am a mom.  I shouldn’t complain too much considering I just have one child.  Sometimes I feel dizzy just from listening to Joy describe all the coordinating she has to do just to get everyone in her household to where they need to be. “Ben has to be at work early, so friend A is going to pick Lucy up in the morning and take her to the playdate, and family B is going to pick Elliana and I up for the party mid-morning, and then Ben will meet us at the party at x time, and friend C will get Lucy and bring her to x spot so we can all head home”.  Not to mention transferring car seats, baby gear, etc.

I often wish I could just hop in the car and go somewhere – anywhere – by myself.  I want to get in the car with Joy, and just have it be the two of us.  I want to make an uncomplicated trip to the store with my daughter.  But instead I feel like this “eternal pre-teen” having to ask my mom to pick me up from the mall.

Despite all my complaints about not driving, I am often relieved not to have this added stress in my life.  The driving issue is a major topic of discussion amongst the RP community.  There are a lot of people with visual impairments still driving, and many struggling with whether or not they should still be driving.  From my understanding, the type of visual tests that most states require at the DMV typically only test central vision and side vision.  So, a person with low visual fields could still pass a driver’s test in many states.  This often leaves the decision of whether to continue driving up to the individual.  And of course, most people do not want to give up this independence.  Unfortunately, I have come across several devastating stories of people with RP causing fatal car accidents.  I think about how awful I feel when my vision causes me to accidentally stumble into someone, and so I can only imagine the horror that would encompass my entire being if it was me causing the fatality.  I recently heard about a woman with RP who thought she was still okay to drive, but did not see her neighbor’s daughter sitting on the curb one day.  This woman took away that child’s life, and ended up taking her own life as well.  I considered not including this story as it is very disturbing and probably a terrible way to conclude a post.  But I think it serves as an important reminder that although driving comes with lots of benefits, it is a huge responsibility.