Author: joy

Trip to the Opthamologist

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…..

Take Inspiration Part 2

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!)

First to the Bus Stop

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.

Good Grief / Dear RP

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.

Good Catch

I recently saw a completely true and hilarious phrase about RP on facebook (Thanks to Roberta on the “Usher Me In” FB page, who saw it on another RP page!)  It said that RP is “being able to see a pencil on the floor across the room but tripping over an elephant on the way to pick it up.” (honestly, if whoever originally said that is reading this, give yourself credit here because you nailed it!)

People are sometimes bewildered by the things I can– and can’t– see.  I remember a friend once looking for her car keys for an hour, and I ended up finding them within 5 minutes of looking!  On the other hand, I once thought a picture hook on the wall was a giant spider, and my dad looked completely frightened when I mentioned it– not for fear from the “bug” but because he realized how bad my vision must be.  I know we’ve written several posts about embarrassing incidents, which are easy to recall because they’re so numerous, but I was reminded today that there are those times I see things– and that’s something worth celebrating once in awhile.  While walking my toddler back from the park today, I happened to glance up and see a woman walking by with her golden retriever.  I kept walking, but then on a whim glanced back across the street behind me and realized that she was also pulling a wagon and possibly waving at me.  I then realized that it was someone I had met in our neighborhood a couple times.  I immediately remembered her and her little boy’s name and yelled “Oh hi, sorry– I didn’t recognize you at first!  Hi Anna!  Hi Devan!”She called back across the street, “That’s okay, I look different with my sunglasses on!” which was a very generous comment considering she really looked pretty much the same, and considering most people would have recognized her immediately if they had met her son and dog before, as I had.  She then went on her way and I went on mine, feeling very proud that I was able to both spot her across the street and call out her name and everything.  That probably seems like a silly thing to be proud of, but I know that there have been dozens of times I have walked past people I know, completely oblivious that they are even there since they’re outside of my line of vision, only to be told later that I “blew them off” or “seemed really out of it”.  I once shook a friend’s hand at church during the “greeting time” (which I always dread because I never know where people’s hands are to shake!) and apparently completely ignored the person’s wife who was sitting directly next to him, only to be told about it 2 weeks later by yet another friend!

And I’m sure there have been many other times I have unknowingly ignored someone without even being told about it afterwards.  (That actually used to happen a lot in college, but fortunately since my sister and I attended the same university, people just thought that it was the twin they didn’t really know who didn’t wave to them!)  So the fact that today I happened to look straight in her direction at just the right moment and call across the street made me smile to myself.  I felt like that friendly, PTA-type mom who knows everyone’s name in the neighborhood.

This “successful greeting” reminded me of a time in 6th grade PE when I somehow managed to catch a football (yes, you may have read my sister and I’s blogs about flying objects and how we NEVER catch or hit anything)   My hands must have just been at the exact right place at the right time because the football literally landed right in them, and i actually held on to the ball.  I was so ecstatic that I quickly began running to make a touchdown…. and DID…. for the other team.  I hadn’t really ever paid attention to the rules or touchdown line before because I figured I would never have possession of the ball, so all I knew was that I was supposed to run.  But it actually didn’t matter to me that I ran the wrong way; I remember feeling proud the entire day, as if I had scored the winning touchdown at the Super Bowl or something, because for once the ball did not fly past me or hit me.

So today I just want to celebrate the small things.  I forget about the word gratitude in my daily life.  I grumble in my head about my husband working weekends and feeling stuck at home.  I completely forget to be thankful that he is home many mornings, gets to eat breakfast with us and help get the kids ready.  I forget to be thankful for amazing friends and family who offer to drive my kids and me places.  I forget to be thankful for the things that I can see– those vibrant and beautiful colors that I get frustrated about when I confuse them and am corrected by my 5-year-old “No, mommy, that’s brown, not purple!” Who cares if I mix them up?! At least I can see them!

Regardless of where your vision is at today, find a good catch in your life – something small that makes you feel proud and thankful.  And smile about it.

Continue reading “Good Catch” →

Flying Balls Part 2: Totally Pucked

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.

To Tell or Not To Tell: That is the Question

Since my visual impairment is not completely obvious upon meeting me, it is usually up to me whether I tell someone I am first meeting about it.  As I mentioned in a previous post, I see a counselor in order to discuss some of my struggles with RP.  She told me that one of the ways I will know that I have really accepted my vision loss is when I can freely tell people about it, whether the cashier at the grocery store or someone I’m hanging out with for the first time, and not feel completely emotional about it.  I understand her point to a certain extent, but as my sister has mentioned before, I don’t want RP to be the first thing someone thinks of when they see me.  It’s nice to get to know someone before saying anything, so that they know there’s more to me than RP.I realize this dounds a little crazy and some people (especially w/o RP) may be thinking that it’s not a big deal or that anyone who can’t look past a visual impairment isn’t worth getting to know anyhow.  But I don’t think it’s anything people would do consciously or maliciously– I think we just sometimes have a one-track mind when it comes to first impressions.  Let’s admit it; you see someone who is tatooed from head to toe with missing teeth– you’re going to form an opinion.  And I can’t say that I haven’t made judgments in my head when first meeting people (“Oh, they seem a little full of themselves.” etc)

In the past, when I have waited a bit to tell a new friend, I always feel so relieved if they say something like, “Wow, I never would have known.”, as if I’ve somehow gotten away with something.  Yet I cringe when I hear, “Yeah, I kind of wondered why you didn’t wave at me when I waved to you in the hallway or seemed kind of lost going into that restaurant,” or worse yet, “Oh, so-and-so already told me how you can’t drive and all about your vision.” as if they’re talking about something as insignificant as not having enough change at the pop machine.  This may sound contradictory– wanting RP to be a non-issue while also not wanting it to be brought up so casually.  I think it’s more that I feel it is my place to first bring it up to someone– not other people’s business to share when I’m not around.

I’m not sure why I think it should only be my place to tell people.  It could be that I’m afraid incorrect information will be passed on (i.e. when a person I was talking to just thought it was something viral that would go away with antibiotics!)

I’m also not sure why I feel such a sense of shame and embarrassment about it– as if it’s anything I can even control.  I remember walking into a restaurant about 10 years ago to use the bathroom, and since it was very dim, I circled the room several times before tripping over a stool and finally stumbling into the bathroom.  A woman working at the restaurant came up to me and asked, “Young lady, have you been drinking?”  I was mortified.  One would think at that point I would simply explain that I’m visually impaired, right?  But I was so taken aback and embarrassed that I simply found my way out of the restaurant as quickly as possible, got into the car where my husband, Ben, was waiting and began to sob.  After I told Ben the story, we actually began to laugh, and I could definitely picture how a person stumbling around would appear wasted!
I do think that I have come a long way since that incident.  When I went on a mission trip to Paraguay 4 years ago, for example, I told our team of people– most of them strangers– immediately.  And I find myself speaking up even in stores now. Yet it still doesn’t feel natural to say.

Sometimes it feels more natural to just stretch the truth.  When checking out at Trader Joe’s a few months ago, I couldn’t see the credit card screen to click “accept” or where to sign my name because the screen was really faded and dark.  Thinking quickly, I said, “Oh gosh I’m not wearing my contacts today and can’t even see this screen!”  The cashier was like, “Oh, that has totally happened to me– here, I’ll just put your pen on it for you.” Even the man in line behind me started talking about how blind he is without his contacts.  I felt right at home and didn’t feel an ounce of embarrassment.  But it wasn’t the truth!

Should I settle for telling white lies or hope that telling the complete truth will get eaier? Just the other day I was checking my 5-year-old into the doctor’s office and was asked to sign some papers.  The receptionist saw me looking around for a pen and replied, “Oh, the pens are right there,” making a large sweeping motion with her hand, and walked away to make photocopies.  I turned my head from side to side, scanning the counter, looking for this obviously-placed pen, but still did not see it.  I looked down to ask my daughter to help me, but she was at the drinking fountain.  I felt my face getting hot and my anxiety level rising before realizing that I was making myself frantic over a pen and needed to just ask for more help.

When the woman returned to the desk, I simply said, “I’m sorry I still don’t see the pens– I’m visually impaired.”  She immediately handed me a pen and said, “wow, you’re doing pretty good then!”  I know she meant it as a compliment, but for some reason i felt really emotional, as if I would start crying if she said another word to me.  So I quickly sat down with Lucy and began reading a book to her, but then felt paranoid that the receptionist was watching us, wondering how I could read fine but couldn’t see a large container of pens.  I, of course, started thinking about how I should have been more specific and just told her I didn’t have peripheral vision.   Another tip that my counselor brought up is to have a specific, rehearsed phrase to say, pointing out that the more I say it, the more natural it will feel.  I am willing to give it a try but am also curious how other people with RP handle this.

So all you RP’ers out there…. I know most of the comments thus far have been from our family and friends (thanks guys!) but if there’s anyone reading this who can relate, can you please comment on how you feel about telling people, particularly strangers, about your vision.  Do you have a certain “line” or phrase that you tend to say?  And does it get easier the more you do it?

I guess the question is not really “to tell or not to tell?” but “how to tell?” and “how much to tell?”

Sucked in by the Search for a Cure

So one of the first questions most people ask once they find out about RP is:  What is the cure?  And, of course, if anyone is reading this who has been diagnosed with RP, you probably remember the grim advice from your Opthamologist:  prepare to go blind.   Living in today’s day and age, however, we are not satisfied with the information given to us by our doctors because we have a keen understanding that their knowledge goes only as far as the information they themselves have researched.  And with the ridiculous amount of information available on the web these days, the potential to find some piece of information– some study in a random, far-off place that our doctors may not know about yet– is just enough to make us feel empowered to find our own answers.And so begins the ominous, tiresome search for treatment– some magical herb, vitamin, or implant that will bring an end to all the stress, pain, and fear of the future.

When conducting an online search on treatments, there is quite an array of information about trials, treatments and current research studies– from preliminary studies to human trials.  Yet there are also quite a lot of opinions, warnings, and debates.  I went online the other night simply to research one particular treatment– Dr. Yu’s Acupuncture treatment in Vancouver, BC — and before I even realized it, I had been on the computer for 3 hours– till 1am.  And it was with sore, screen-tired eyes that I trudged up to bed, my shoulders tight from hunching over my computer and my mind filled with far more questions than answers.

This was not a first for me.  I have been sucked in by this nebulous search before– it always starts off with a glimmer of hope and ends with a sense of confusion– is there anything out there worth trying?  Which research funds are worthy of my donation?  Which alternative medicine is worth my time and $?  Which treatments have side effects and which are worth the risk?  These questions can be exhausting.

That tiresome evening of research sucked me right into “cure mode”, which most people would think would put them in a state of hope.  But for some reason cure mode usually does the exact opposite to me– I find myself more depressed, more anxious and more distraught over the disease.

So does this mean I should never do research and simply focus on the Psychotherapy i started recently, which is helping me work on accepting my vision loss, or should I fight it?  Does it have to be one or the other?  And does hoping for something different necessarily mean I can’t accept what is?

I have “met” a number of people online who focus all of their attention, 24/7, on finding a cure.  I go on certain forums and see the same people on them all the time– people who must spend every minute of their free time talking about a cure.  I am not judging people who do this or saying it is wrong.  Maybe they’ll find something I won’t– or they’ll find it first.  Maybe being in constant cure mode is completely healthy for them.  It’s just interesting how people deal with RP so differently; I’ve also met several people who are nearly blind from RP who spend absolutely none of their time searching for a cure.

One of these persons is a mentor of mine and someone I really admire.  He has very little vision left, is a successful attorney, and has never once mentioned RP research in the many conversations I’ve had with him.  He chooses to focus more on making adaptations that allow him to live his life well.  He knows braille, has mobility training, and has adaptations that allow him to use the latest techology– computers, cell phones, etc.  He is very involved in the National Federation of the Blind and also serves on a special board appointed by the President that examines disability law as it pertains to blind people.  For him, he would obviously love it if a cure were to come along, but he doesn’t spend his life waiting for it.

For me, I think there does need to be some sort of combination of the two in order to be okay mentally– to have hope but not to constantly live in an obsessive cure mode.  That fine line into obsessiveness is probably different for everyone.  I think for people like me it might mean limiting our online research time to one hour a week– the same amount of time I’m spending at counseling.  For others it may mean going full force into cure mode for a week or so and then taking a few weeks off (who knows the too-good-to-be-true cure that might surface on the web after a few weeks vaca!)

Note:  My sister’s and my research on Dr. Yu’s RP treatment is actually looking promising for us.  Please stay tuned for more information about our upcoming plans, which will be shared in future posts.

Laughing at Ourselves

When we take ourselves too seriously, we can get into some serious mental drama.  I think pride is something that we all struggle with to a certain degree, but for anyone with any kind of impairment, pride can take over our daily lives pretty quickly.One way I like to guard against this is to laugh at myself.  Of course, there are times when certain incidents are so embarrassing that I can’t see the humor in them for quite awhile (i.e. that garage sale, speaker-selling incident from my last post!)  But there are other mishaps that I immediately find funny.  For instance….

I was at a neighborhood pool with some friends a few days ago, and I took my friend’s son, Luke, to go down the water slide.  As Luke climbed the ladder to the slide, I positioned myself at the bottom of the slide. I was a little nervous because the force of the water was pretty strong at the bottom– definitely strong enough to pull a little kid under.  Plus, the roaring sound of the water was deafening, and since I rely on my sense of hearing so much, I felt even more impaired.  Thinking that Luke’s turn to come down the slide was next, I placed myself directly at the bottom of the slide, ready to catch him.

What I failed to see 10 feet above me was that there was another, much larger boy in front of Luke.  So as my arms reached out to catch my friend’s little 5-year-old boy, I was shocked to find myself catching a teenage boy (although I doubt I was as shocked as he was by the look on his face.)

To make myself feel better, I thought about how I would rather be embarrassed nearly wrapping my arms around a 15-year-old than failing to catch my friend’s little boy!  (And for the record, the next time he went down, I had him yell down as loud as he could right before his turn!)

VIP Garage Sale

So if you’re honored enough to be a VIP (visually-impaired person), you may have noticed that there are certain tasks and situations that you don’t anticipate being difficult visually but end up being ridiculously challenging.  Many times I’ve had friends or family members tell me that they’re not sure when to step in and help me when we’re walking places together and that they hope I’ll speak up if I need help.  And truthfully, I don’t always know when to ask for help.  There are times when I seem to be walking along just fine, when all of a sudden– SMACK– some tree branch or step pops out of literally nowhere (yes I know; “literally nowhere” lurks somewhere in my missing peripheral fields!)   But then there are also those definite moments where I know beyond the shadow of a doubt that I need help.  One of those occurred recently while having a garage sale.This garage sale definitely started out as one of those “normal” things I thought I’d be okay doing visually.  I was able to set items on a table and price them just fine.  But when customers began showing up, things got a little nutty.  Having not really hosted my own garage sale before, I had no idea that there are “professional garage salers” out on Thursday mornings.  Early.  Very early.

We put our sign and flag banner out at 8am (our neighbors were all doing sales, so we had nifty signs and excellent web advertising!), and as soon as the signs were up, rattley pick-up trucks started showing up by the dozens.  I didn’t even have time to put all of our stuff out on the driveway before there were literally 20 people inside my garage, rummaging through all of my family’s crap– er, I mean treasures.

People started holding things up, “How much is this?”, “What do you use this for?”, “Would you accept $2 for this?”, and, “What IS this?”  This would probably be slightly stressful for a person who could actually SEE what items they were holding up, but because they were holding them up at varying spots in the garage and at a rapid pace, my eyes just couldn’t track what items people were asking about, so I began to panic inside (okay, fine, it was pretty obvious I was panicking on the outside too– I think the sweat and swear words I mumbled under my breath might have possibly given it away).

My husband, Ben, was supposed to be helping but had to run in to work for something last-minute, so my father, who was visiting, was trying to help me.  “Joy, this man over here wants to know how much you want for your speakers.”  Since the speakers were in a dimly-lit part of the garage, I couldn’t see them but I remembered that Ben had said he wanted to sell our stereo speakers for $30.  So just to make sure, I called my husband to verify the price.  The man seemed very eager to buy the speakers after I told him the price and then started hunting around the garage for other things to buy, though he ventured into the “not-for-sale” side of the garage (not clearly marked, of course, we’re total garage-sale amateurs!) and held something else up.  “What about this amp?”  I knew immediately that wasn’t for sale and told him so, and as I was saying it, I got this nervous feeling about the speakers he was buying.  But I brushed aside the feeling, remembering that he had found them on the “sell” side of the garage and that I had verified the purchase with my husband.  I then continued to somehow manage the tirade of people with my dad’s help until Ben returned.

Upon his return, he noticed that the stereo speakers he thought I had sold were still in the family room, hooked up to the stereo.  He then realized that the speakers I had sold must have been his professional stage speakers that he uses when he plays concerts, worth about $200 apiece.  I’m not exactly sure what specific words we exchanged at that point, but I must have let out a scream or something because our neighbor hurried over in his “wife beater” tank top, ready to go after whatever “punk” stole something.

After assuring the neighbor that we were not robbed, we got over the initial horror and continued our garage sale.  With both Ben and my dad helping now, it actually began to run smoothly.   And Ben then ended up finding his professional speakers in the basement and realized I had just sold 2 of his speaker monitors- only an $160 mistake!

But then people began to buy larger items, including some furniture in the basement, so both my dad and Ben needed to help lift items.  I found myself alone with a bunch of eager shoppers again, waving more items at me and handing me money that I sometimes didn’t see.

How should a VIP handle this?  I found myself completely perplexed– should I just say “sorry, please just hand me the item to look at because I’m visually impaired.”?  Or would that just be inviting some dishonest person to pull a fast one on me, thinking I wouldn’t notice a missing item or fake money?  To make maters worse, a lady in the neighborhood e-mailed everyone, saying that some people were reporting receiving counterfeit $20 bills.  She recommended that we not accept any bills $20 or higher.  I had already (naively) accepted an $100 bill and had barely looked at it when the customer handed it to me, much less inspected it!  (Fortunately, they accepted it at the store, so hopefully it was real!  If not, at least it was at the evil Walmart).

I remember my specific breaking point during the shopping frenzy– the point where I knew I really couldn’t stay out there, running it by myself even for 5 minutes.  This woman said, “How much for this?”  I asked, “for what?”, hoping she’d just say what it was to give me a clue since she was across the driveway and I was collecting money from another customer at the time.  “For this doll.”  I had absolutely no clue what she was talking about and didn’t remember putting out any dolls to sell.  Thinking of the speaker, I started to worry that maybe one of my daughters’ favorite toys ended up int the garage or something.  I had no idea what to do.

I wish that I was comfortable enough with my vision loss to be upfront with strangers about it, and maybe someday soon I will be, but at this point I’m still working at it.  And yes, my discomfort with RP quite possibly cost me $160 in mistakenly-sold speakers.  And while that mistake didn’t give me the courage to tell the woman pointing to the doll that I had no clue what doll she was referring to, it did scare me enough to tell her, “Hold on one minute– that’s my husband’s– I’ll have him come outside to handle that to make sure he gets the price he wants for it.” (considering it ended up being this funny, decorative 4th-of-July doll, the woman was probably completely weirded out that it belonged to him, and in hindsight, it would have been less embarrassing to just tell her I couldn’t see what she was pointing to!)