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”

Encouragement

I am hand-writing this post.  Joy gave me the idea as a way to rest my eyes from the computer before typing the final draft.  I feel so old-fashioned and can hardly believe I still know cursive.  It’s nice, and has really nothing to do with what I’m going to blog about, but just wanted to share my enjoyment in the dying art of penmanship.

As I sit here in my cozy backyard reflecting upon our first dozen posts and subsequent comments, I am surprised by some of the feedback.  The responses from fellow VIPs (thanks for the snazzy acronym, sis) has been what we had hoped it would be and more.  It’s the excitement and support from our friends and family that has surprised me a bit, which is not to say that I haven’t felt their support before.  I guess receiving it all at once feels different.  But what surprises me the most is how encouraged I feel just from knowing that my loved ones are taking time out of their busy lives to learn about RP.

Joy and I have spent so much time/energy talking to each other about RP over the years that we often haven’t realized how little our friends and family know about it.  Prior to this blog, I had been of the mindset that if someone has questions or wants to know how I’m feeling about RP, they would approach me.  And there are quite a few that have done so.  But I’ve recently learned that not everyone feels they can openly talk about it – perhaps due to something I’ve said verbally or non-verbally.  And that is disappointing to me.  I want to be approachable, I want to be an open book.  Sometimes that is easier said than done.  Sometimes I feel so “exposed” when I talk about my vision.  I feel as though I am revealing this broken piece of myself,  But just because something is painful or uncomfortable to talk about doesn’t mean that it should be avoided altogether.

My hand is starting to cramp up, so I better wrap this up.  If you have RP, you may be surprised to find that the more you share with friends and family, the more encouraged you feel.  If you have a loved one with RP, find an appropriate time and place to approach them with your questions, concerns, words of encouragement, etc.

Taking an interest in what others are thinking and doing is often a much more powerful form of encouragement than praise – Robert Martin

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.

The Secret Ingredient

The FFB featured an article and video on safety in the kitchen last week that I found interesting, helpful, and somewhat funny.  I hadn’t really given a lot of thought to safety in the kitchen from an RP standpoint, but it’s something that I’d like to be more conscious of going forward.  I am pretty comfortable in the kitchen, but I have learned that getting too comfortable in any area of life is often the time that RP sneaks up and yells “surprise!” in the form of something like a bruised leg (coffee table – 2 days ago). Continue reading “The Secret Ingredient”

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?”

Flying Balls & Other Memories

I am afraid of flying balls.  (please take a moment to snicker to yourself if necessary).  Ahem, for a person with limited peripheral vision flying objects of any sort can be dangerous.  But it seems flying balls have been the ones I’ve had to deal with most in my life.  I can recall being smacked in the face by one on several occassions.  And what better time is there to be smacked in the face with a flying ball than elementary school?! Continue reading “Flying Balls & Other Memories”

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.

Finding Inspiration

My sister sent me this video clip recently, and I found this story very inspiring.  Rare disorders such as RP and Ushers don’t get a lot of media coverage, so it was really great to see this story on the Today show thanks to reporter Peter Alexander and his sister Rebecca, who has Ushers syndrom.  Ushers is similar to RP in that it is a degenerative disease affecting peripheral and night vision, but it also affects hearing.

When I watched the video, I instantly wanted to be friends with Rebecca – her energy and passion for life made me smile.  I particularly liked the emphasis she placed on not letting Ushers define her, which is probably one of my biggest fears about RP.  I am afraid that when people find out that I have RP, that is all they are going to think of when they are with me.  I don’t want to be put in a box or labeled.  That is why I often wait to share that I have RP until I know and trust the person I am telling.  As Rebecca points out in this story, we’re often so quick to judge and yet never really know what people are walking around with.

I also appreciate her “seize the day” attitude in which she focuses on the present and doesn’t fear the future.  She’s not letting Ushers stop her from anything she wants to accomplish, noting that it might just take her longer or she may need more support along the way.  Sometimes I catch myself thinking of all that I want to do in life before I lose more vision when I should be focusing on what I want to do in life regardless of my vision.

 

Night Blindness

I love summertime for a variety of reasons, but the main reason I love summer is that it stays light outside until almost 10pm here in WA.  For a person with night blindness, this makes a big difference.  It means I can stay outside playing with my daughter, riding bikes, and walking to/from town for yoga, gelatto, shopping – just to name a few of my favorite activities – well into the evening hours.  But I often feel like Cinderella, losing track of time as the clock ticks closer to nightfall.  Most of the time I’m very good at planning ahead to make sure that I am in a safe, well-lit place when the sun sets.  But at a recent family reunion, the planning wasn’t exactly up to me. Continue reading “Night Blindness”

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!)