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

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?”

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

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.

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.

 

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

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!)

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!)

Hopefully our readers won’t find this post too petty or boring.  Not a good start, I know.  But sometimes it’s more than just the not driving that really gets to me.  RP also interferes with my love of fashion – shoes in particular.  While other fashionistas my age are strutting around in sexy high heels, I choose to wear flats or kitten heels most of the time.  It’s not that I can’t walk in heels – trust me – I have excellent balance and a pretty high threshold for foot pain.  The risks are just too great considering I often miss a curb or trip on a rock in my path, and catching myself from falling is rather challenging in high heels.

This summer I didn’t exactly have a choice, though.  I was a bridesmaid in a dear friends wedding, and the gorgeous shoes she chose for us just happened to be 4 inches tall.  Nervous doesn’t begin to describe how I felt about sauntering down an aisle in front of 200+ people in these tricky gold heels.  Luckily, each bridesmaid had an escort, so I managed the ceremony just fine.  But then more nervous butterflies entered my stomach when I learned that we would need to walk through a dimly lit reception as our names were announced in front of the seated dinner guests.  I convinced my escort that we should enter the reception skipping instead of walking as our names were announced.  I figured it would look less ridiculous if I fell down while skipping vs. walking.  Plus, skipping is a lot of fun.

Not only did I successfully skip to my dinner seat, but I also managed to dance the night away in these same heels (with a lot of help from my fantastic husband).  I realize the ending to this story might be somewhat disappointing for those of you looking for a good laugh.  But don’t worry – I have RP, so there are plenty of funny embarrassing stories to come! Especially if I decide to wear these heels to a dark restaurant….  

The shame and embarrassment of not being able to see like everybody else started at an early age.  I can remember going up to the chalkboard in first grade and not being able to find where the teacher had set the chalk.  The whole class was watching and waiting for me to write on the board, but I could not find the chalk.  My face burned with redness as I started moving my hand along the bottom of the chalkboard in hopes of being able to feel where the chalk was.  “Use your eyes, ” I heard my teacher saying in a stern voice, which only made me more apprehensive.  After fumbling around a bit, I located the chalk and began to write on the board as tears welled up in my eyes. I remember wishing that I could “use my eyes” like all the other kids, but I couldn’t.

I was diagnosed with RP at age 5, so my teacher was well aware of my vision challenges, but yet she still was not comfortable with me using my hands to find a small object (side note – she also mimicked kids who read slow by mockingly telling them “you are reading like a robot”, so perhaps teaching wasn’t her calling in life).  But as I’ve grown older, I still find that people are uneasy with me doing things a different way than they do.  It makes them uncomfortable to see me feel around for an object that they can spot within seconds, or to see me walking slow in unfamiliar terrain so that I don’t trip on something.  The funny thing is that I can do many of the same things that people with normal vision can, but I have to take a slower and often times more awkward-looking approach.

I wish that I could say that I am beyond the point of getting embarrased by my vision, but I still find my face turning red when I drop a coin at the store and can’t see where to pick it up, or when I walk into a dark restaurant and begin slowly shuffling like a turtle.  One of the biggest challenges about being partially-sighted is that it is not a term that most people understand.  They think you’re either blind or your not – there’s no in-between.  And because RP is so rare, it’s often difficult to explain why you don’t see like everyone else.  My friends and family are pretty used to the way I “use my eyes” differently than they do, but to the complete stranger standing behind me in the grocery line, I am the freak that can’t find a quarter right in front of her face.  Maybe that’s not what they’re thinking, but it sure feels like it from my perspective.  I know that I need to not care what strangers think, but this is my journey, and this is where I’m at right now.