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Growing up, we were the best of friends.

Joy: Except for that time, in utero, when she sat on my head for nine months, and then made me wait four laborious minutes while she made her grand entrance into the world.

Jenelle: Or that time when we were 18 months old and she sunk her teeth into my arm after I stole her stuffed bunny.

Joy: Or that time when we were eight, and she poured a glass of milk over my head at the dinner table.

Jenelle: Or that time when we were nine, and she signed my dad’s Father’s Day card, “Love, Joy. p.s. not stinky Jenelle.”

Joy: Or all those times as teenagers when she chased me around the house trying to whip me with a wet bath towel, while I ran away, chanting “Violent lady! Violent lady!” Continue reading

 According to many surveys, going blind is something people fear most, right behind cancer.  I’ve written plenty of posts related to fear and grief and challenges.  But I’ve seldom touched on all the fringe benefits of blindness.
Some readers may think I’m joking, but honestly there are parts of my life that have turned out to be pretty great because of low vision.  So I put together these top 10 reasons blind people lead the best lives: Continue reading

I once tried to use the word “coldth” in a Creative Writing class in high school. My teacher crossed it out in large, red letters and wrote “Not a word!”, which annoyed me because, duh, I know it’s not a real word, but I was trying to be “creative” and make up a new word that would describe a cold feeling that is actually comforting. Obviously, I failed. So here’s another attempt:

Living just outside Chicago, everyone dreads our icy winters. Being that I walk everywhere, I don’t exactly look forward to spending 20 minutes bundling up the kids and myself and then maneuvering the stroller around snowbanks, slush puddles and irresponsible neighbors’ un-shoveled driveways (okay, fine, it’s usually our snowy driveway!)

But even with the dread of a cold, long winter ahead, I must admit that I felt a little giddy the first time the temperatures dipped down in the 30s in November. While I loved our frequent trips to the park this warm December and first week of January, I feel a nervous excitement over the recent falling temps. Some of you will stop reading now because you are so irritated that I would even hint at appreciating freezing weather. But I just have to say it.

Sometimes cold temperatures bring warmth to a home in the same way that hard times bring families together.

It’s an excuse to crank up the heat, light a fire, drink hot tea, snuggle closer…

It takes a good freeze to kill the pests, such as ants, and for some reason my house always seems cleaner in the winter when there’s no moisture or humidity in the air. And even thought I know people tend to get sicker in the winter, a good freeze seems to kill some of the germs floating around, which could be the reason influenza and stomach bugs have been rampant this winter in the Midwest, according to many healthcare professionals. And I truly have enjoyed bopping around town without a coat nor icy sidewalks these past couple months. But it’s time to freeze off a few germs.

It’s also time for some brisk walks– the kind that wake us out of our sluggish, January slumber. “Blue Monday” is coming up on the 21st. Apparently, psychologists have come up with a formula based on the amount of days after Christmas, the weather, the amount of sun, etc. that designates the 21st as the most depressing day of 2013 for people. So, knowing that I have the potential to be at my lowest on this day, I know that fresh air and exercise are remedies for me.

And there’s really nothing like frosty air to cool me off when I am heated up over something. Like yesterday, when everything seemed to be going wring, leading to a frustrating climax in which I encountered a difficult phone representative while trying to file an insurance claim. The conversation left me with hot, angry tears by the end of it, and since it was time to pick my youngest up from preschool a few blocks away, I had to wipe my tears away and pull myself together. It had been such a draining day in general that I really worried I wouldn’t be able to get out of my angry, sad funk. But as soon as my feet met cold pavement and my lungs inhaled arctic air, I felt my insides relax. The air cooled the heat of my anger, and I felt refreshed, heavy coat, mittens and all. A spring, summer or autumn day could not have revived me the way this winter one did. While I’m glad it’s not winter all the time, I welcome it for now.

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

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

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

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

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

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

I 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

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

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

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!)