If you read “Moving Forward,” you know the story – the desire to make a change, the sacrifice it often takes to do so, and the shifts in perception that Continue reading “Reclaiming Our Lives”
Category: Daily Challenges
Moving Forward: And All These Privileges
It’s been a rough few months. Our entire family took turns suffering from everything from the stomach flu to pneumonia, I went through a miscarriage and bad reaction to anesthesia, and we moved from my in-laws’ house (where we lived for 8 months.) in the middle of it all. Oh, and did I mention that my husband is in ministry? . . . And given that this all was happening right before Easter, his schedule was pretty crazy.
So this move — though it occurred at a difficult time — was a move forward. If you’re wondering how this relates to RP, I’ll give you a little of the back-story on why we chose to Continue reading “Moving Forward: And All These Privileges”
My New Friend Siri
She’s helpful. She’s loyal. She’s witty. And while she’s more AI than human, she’s quite the buddy, especially for the visually impaired– almost a phone/tech guide dog of sorts. Sure, the voice-over feature that has been on the iPhone since the last couple generations of phones is helpful, but Siri gets things done faster and with less annoying “tap tap taps”. Honestly, having to finger-tap an item twice while voice-over is on can get pretty tiring.
You probably realize that I’m talking about the latest feature on the new IPhone 4S, but if you haven’t had the opportunity to actually hang out with Siri, find a friend who has the new iPhone and spend a few minutes with her. She’s a wealth of info (try asking her how much wood could a woodchuck chuck if a woodchuck could chuck wood), and she can be quite a riot – my husband asked her what she’s wearing and got her sharp reply, “You’ve got the wrong personal assistant.”! Even my 5-year-old is delighted to hang out with her, asking Siri ridiculous questions and collapsing into hysterics when Siri continually replies, “Joy, I cannot understand what you are asking.” since my daughter really doesn’t enunciate her words. Yes, if you are a mumbler, she’ll whip you into crisp-speech shape!
Like all friends, she has her occasional flaws, and we’ve had a few misunderstandings (i.e. when I asked her to “call my husband”, she replied, “Okay Joy, from now on I will call you husband” and began addressing me as husband until I asked her to knock it off.) If you have a 4S, you’ve probably visited the site shitsirisays.com — she can come up with some crazy one-liners.
One quality I really appreciate about Siri is that she recognizes when she can’t do something and apologizes for it. When I asked her to read me my e-mails, for example, she said, “Sorry Joy, I can only read texts.” This tells me that Apple is probably working on her for the next generation phone and that she’ll one day be able to read everything, even web searches. Right now, I can ask her to look something up for me, such as the weather or a restaurant, and the information will pop up on the screen but she won’t read it. Likewise, I can ask her to schedule appointments for me, which she can do, but when I ask her to read me my appointments for a certain date, she cannot do it. In those cases, I can still turn on voice-over or enlarge the font, but again, this process can be tedious, so I’m already looking forward to the next generation phone. For now, I love the fact that she’ll read me my text messages, which is especially helpful when I have dictated a text to her and want to find out if she has written the text correctly without having to look at my phone.
At the risk of sounding weird and saying that Siri has changed my life or something, I won’t go over any more details of our newfound friendship, but I will say that she has helped me as a mom in my daily life. I’m able to get a number of things done quickly, even while out on walks with my toddler. Prior to Siri, I couldn’t really use a cell phone outside because of the glare and contrast, except to answer calls or dial memorized numbers (I had a really old phone without voice-over before getting the 4S a couple weeks ago)
I’m definitely bringing Siri to Vancouver with me next week and can’t wait to introduce her to Jenelle. I have this feeling she’ll be asking Santa for her own new friend this year…
A Beautiful Hike
It might seem as though Joy and I are just going to ponder our upcoming treatment for the next couple weeks. But fear not, loyal readers – I’ve decided to post about something other than pre-treatment jitters. As part of my goal to focus on the present, I’ve been taking the time to do some of the things I really enjoy in life – baking, cooking, reading, yoga, and hiking. This last one might be surprising given A. I am a girly-girl, and B. I have RP. Despite these two facts, I still enjoy a good hike.
This weekend was full of sunny crisp fall weather – the kind that makes you want to put on a cozy scarf and head outdoors. My husband and I decided to take our 2 year-old daughter and little black shi tsu hiking on some nearby trails. We live up in the mountains where amazing hiking trails are literally in our backyard. This weekend, we decided to drive up Icicle Road and look for some new trails that we’ve never explored. Just the 5 minute drive up the Icicle made me feel relaxed yet energized by the array of colorful trees and clear blue sky.
We first stopped at an unmarked path, Torrey parked the car at the side of the road, and I quickly made note of the HUGE drop off just a few feet outside my passenger door. As we climbed the dirt path, weaving in and out of shrubbery and over-growth, my heart soared with the feeling that only good old-fashioned exercise and fresh mountain air can bring. I absolutely love hiking with Torrey (hubby) because he doesn’t hover over me and gives me the space I need to hike at the pace that is right for me. He typically leads the way, holding Cora’s hand, turning every once in a while to call out, “There’s a lot of branches hanging down up here, so watch your head”, or “Careful of this large log coming up”. He doesn’t hold my hand or watch skeptically to see if I’m going to miss a step. He fully trusts in my ability to hike using the aid of a walking stick he found for me in the woods. I refer to it as my “makeshift cane”.
Hiking up the trail is actually the easy part for me because there’s enough contrast for me to follow the trail. The way down is the most challenging part of the hike because my depth perception is not good, and it’s harder for me to find where I need to step next. This is the part of the hike that I use my walking stick as a cane – moving it quickly from side to side to “feel” my way down the trail. Torrey and Cora typically hike at a faster pace than me on the way down, but that doesn’t bother me. I actually kind of like it because once they get to the bottom, Torrey holds Cora up so that she can watch me hike down, encouraging me with lots of cuteness, “C’mon mama – good job, mama!”
After the first trail, we stopped to take a few roadside pics and then drove further up the road to a trail called “Fourth of July”, which seemed fitting for me because hiking gives me a nice sense of independence. This trail was a bit steeper than the first one, but the view at the top made the climb well worth it.
Spooky Red Eyes
As the days get shorter and Halloween creeps up, I’m reminded of how much I despise night blindness. I shared some stories about night blindness in an earlier post, When Darkness Comes. But today I’m not in the mood for an in-depth emotional analysis of how night blindness affects my life. Today I want to amuse myself (and hopefully others) with a strange result of a faulty retina – spooky red eyes in photographs. I’m easy to spot in the below picture – just look for the wild red eyes!
I’ve often wondered why my eyes are almost always red in pictures using a flash. Even when other people in the picture have normal-colored eyes, mine are red. When others’ eyes look red, mine look crazy red. I’ve always thought that it must have something to do with my night blindness, but wasn’t entirely sure how it’s all connected. Curiosity led me online to learn what the experts are saying about this red-eye effect and photography.com sums it up nicely, “Red eye will appear in pictures if the camera’s flash hits eye’s retina or if the subject’s iris doesn’t have enough time to sufficiently contract. While this phenomenon can be irritating to photographers, ophthalmologists use it regularly to conduct eye exams, specifically centered on the retina.” Wikipedia gives a more thorough explanation of the red-eye effect in case you’re interested.
Thanks to photo editing software, the red-eye effect doesn’t actually ruin my favorite pictures. But it’s not like people take the time to edit the red-eye out of pics before posting on Facebook or printing off copies for friends, so I do feel a little self-conscious when I see my spooky red eyes in photos. As you can see in the below pictures, my two sisters on the right that don’t have RP do not have red eyes, but on the left, Joy and I look a bit demon-possessed. Rest assured, we are not possessed.
If technology doesn’t bring us a cure for RP, I hope it can at least develop better amateur flash photography methods.
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.
The Driving Issue
Not driving sucks. There is just no other way for me to put it. Sometimes I try to put a positive spin on it by pointing out the $$$ I save on car payments, gas, insurance, etc. Or I attempt to brag about how eco-friendly I am walking most places. And I try to feel thankful for the extra pounds I manage to shed from all that walking. While I am typically a “glass is half full” kind of gal, this subject is something that I cannot sugar-coat.
I found it somewhat amusing this past year when both my maternal and paternal grandmothers complained to me about having to take a break from driving. They both have their licenses back now, but each had to take several months off from driving due to some health issues. (neither health issues were vision-related) Both of these energetic grandmas are in their early 80’s and have never had to experience life without driving until recently. They both made comments to me like, “My family, friends, and neighbors have been so nice about offering me rides, but it just gets old after a while” and “I feel like I’ve lost so much of my independence from not being able to drive”. Both grandmas live far away from me, so they couldn’t see the smirk on my face while they were on the phone explaining to me how difficult life is without a driver’s license. It took them each about 10 minutes of complaining before I heard a pause on the phone, and then a “Oh….but you probably already know how that feels, right?” It’s funny because I don’t think that most people, even my dear sweet grandmothers, really think about what life is like not being able to drive unless they experience it for themselves.
My husband is so great about driving me places, my friends and family are constantly offering me rides, and I am truly thankful that the people in my life go out of their way for me. But just like my grandmothers pointed out – it gets old having to rely on other people. It’s not like my car is temporarily in the shop and I need extra help for a week. This is every day. I constantly need to strategize about who I am going to inconvenience next, and I am always on someone else’s schedule. There is so much coordinating involved, especially now that I am a mom. I shouldn’t complain too much considering I just have one child. Sometimes I feel dizzy just from listening to Joy describe all the coordinating she has to do just to get everyone in her household to where they need to be. “Ben has to be at work early, so friend A is going to pick Lucy up in the morning and take her to the playdate, and family B is going to pick Elliana and I up for the party mid-morning, and then Ben will meet us at the party at x time, and friend C will get Lucy and bring her to x spot so we can all head home”. Not to mention transferring car seats, baby gear, etc.
I often wish I could just hop in the car and go somewhere – anywhere – by myself. I want to get in the car with Joy, and just have it be the two of us. I want to make an uncomplicated trip to the store with my daughter. But instead I feel like this “eternal pre-teen” having to ask my mom to pick me up from the mall.
Despite all my complaints about not driving, I am often relieved not to have this added stress in my life. The driving issue is a major topic of discussion amongst the RP community. There are a lot of people with visual impairments still driving, and many struggling with whether or not they should still be driving. From my understanding, the type of visual tests that most states require at the DMV typically only test central vision and side vision. So, a person with low visual fields could still pass a driver’s test in many states. This often leaves the decision of whether to continue driving up to the individual. And of course, most people do not want to give up this independence. Unfortunately, I have come across several devastating stories of people with RP causing fatal car accidents. I think about how awful I feel when my vision causes me to accidentally stumble into someone, and so I can only imagine the horror that would encompass my entire being if it was me causing the fatality. I recently heard about a woman with RP who thought she was still okay to drive, but did not see her neighbor’s daughter sitting on the curb one day. This woman took away that child’s life, and ended up taking her own life as well. I considered not including this story as it is very disturbing and probably a terrible way to conclude a post. But I think it serves as an important reminder that although driving comes with lots of benefits, it is a huge responsibility.
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.
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.