bedtime stories

Jenelle and I telling our kids bedtime stories on a recent shared vacation

My twin sister and I have always had a strong connection despite years of people comparing us to those Sweet Valley High books we grew up reading (yes, I’m clearly the nerdy journalist, Elizabeth, and she is the popular cheerleader, Jessica).

People have always asked us whether we have ESP or any shared twin language. While for the most part, the answer is no, I did awake with strong stomach pains in the middle of the night without knowing that she was going into labor 2,000 miles away and sat straight up in bed the moment she had her second child, on the shared birthday of my older child. Beyond that, we have no known twin quirks. Continue reading

In honor of blindness awareness month this October, I decided to finish this post!  I drafted it this summer and then abandoned it because I found it difficult to write.  For me, it’s like trying to describe my favorite type of movie– I can’t put the exact description into words but I know it when I see it.  And if I think about it enough, I can find words, but it does take some thought.  I don’t like to be cynical, but it would have been easier to come up with a list of 15 ways NOT to help people with RP!  I decided to take the more positive approach, although I couldn’t resist throwing in some of my personal pet peeves. Continue reading

One of the things I love about writing is that it helps me organize and connect the many thoughts, facts, emotions and analysis scurrying around in my head.  Basically, it helps me make sense of the world as I’m experiencing it.

Sometimes these connections happen while I’m working on an essay, but other times they solidify after I’ve already posted, often through follow-up conversations and comments people post.

There were definitely some reactions from friends and readers regardling my last post on my recent travels.   Through these conversations, I came to some realizations.    Continue reading

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So the doublevision family has grown, as Jenelle welcomed Baby Ben into the family on Easter Day!
 
I just had the privilege of heading out to the northwest to spend a week with my favorite twin and her new, little (well big– now almost 10 lbs!) bundle, along with her adorable, active preschooler and amazing husband.
 
Obviously, traveling from the Midwest up to the Cascade mountains took some traveling. And if there’s anything that stresses me out about traveling, it’s airports. While I’m still stubborn about not using my cane, airports are one place that I really won’t enter without my trusty colored stick. Continue reading

Unlike my sister, I do not have a cane and have not received any mobility training.  Similar to most people, I had considered canes to be something you start using once you are completely blind.  It had never been introduced to me as a tool “to help you not run into anything” as the mom simply explained to her child in Joy’s last post.

As Joy also mentioned in her post, I contacted my state’s department of rehabilitation regarding cane training on the exact same day as she did.  Although it would be fun to pretend that this “coincidence” has something to do with twin telepathy, I think it is actually the result of Joy meeting with the young lady with RP who began using her cane as a junior in high school.  For some reason hearing that was the final straw for me.  It seems strange to me that this was the final straw that motivated me to look into cane training considering I have had so many experiences or rather literal “run-ins” that truly should have been the last straw. (which for our International readers is a phrase often used meaning The final additional small burden that makes the entirety of one’s difficulties unbearable.) Why didn’t I get a cane after I punctured a hole in my shin during a cross country meet because I didn’t see the bleacher? Why didn’t I get a cane when I was feeling anxious about navigating my way around campus my freshman year in college? I could spend days coming up with similar questions, but instead I will choose to focus on the present fact that I am getting a cane.

I am sure there are readers wondering why my sister and I are making such a big deal about something as simple as using a cane.  Why is this so challenging and why are we analyzing it so much? I know there are plenty of visually-impaired people that seamlessly use their canes and do not feel it defines them in any way.  I have read some inspiring blogs written by people who explain that they don’t even consider vision loss to be an issue or struggle in their lives.  While I have every intention of getting to that place, it is just not where I am right now.  It means a lot to me when people accept me exactly where I am, even if it is not where they think I should be or where they are.  I hope that doublevisionblog is a place where people can feel okay to be exactly where they are in their journey with vision loss or anything they might be struggling with in life.  I will be adding updates regarding cane use to the blog as I receive training this fall.

Several weeks ago I met with this remarkably confident, intelligent teenager who has RP. Her and her mom read our blog and live in the same area as I do, so her mom thought it would be helpful for her to talk with someone who has “been there”.

While I had hoped to provide all kinds of helpful mentoring during our meeting, I walked away feeling like I had been given some wisdom in regard to a fear I have: cane use.

Even though I received mobility instruction (aka: cane training) during grad school 10 years ago, I have felt too self-concious to use my cane in public despite the fact that it could really help prevent my many run-ins with objects and people.

This young lady shared with me about how she began using a cane mid-semester in her junior year of high school this past year after she ran into a garbage can and another student. Though my vision was less than hers when I was in high school, I tried to imagine myself using a cane in the hallways of Naperville North and felt my face flush red just thinking about it.

She went on to say that it was difficult at first, answering questions from students wondering why she was using a cane when it looked like she could see or why she started using it all of a sudden. But she persevered and continued to navigate the hallways of her high school confidently. I think about all the people she has been able to educate about low vision just by using her cane in school.

And I think about all my missed opportunities to educate people about low vision and RP– people I’ve allowed to believe I am inebriated or rude or ditzy instead of simply showing them that I can’t see well.

So the day after I met with this courageous young woman, I decided to at least just start carrying my collapsible cane in my bag so that I could pull it out when needed. I’ve used it now 4 times in public in the past few weeks– more times than I’ve used it in the past 10 years.

I used it at the DMV when going to renew my state id, which ended up paying off because apparently they waive the $20 fee if you are visually impaired.  One odd thing I noticed was that everyone I came in contact with, whether DMV worker or patron, called me “honey”, “hon”, or “sweetie”.  Since I don’t live in Texas, I got a little paranoid that it was because of the cane.  But maybe it was just some weird DMV lingo or something.  Or the DMV’s recent attempt to make their facilities more pleasant.  Anyways…

The second place I used it was in the library with my girls (a place where I’ve had the most “run ins” because it’s going from light to dark in a crowded, smaller space).  My paranoia at the library is that people will see me reading a book aloud to my kids after setting down my cane and think that I’m faking blindness, but a good friend pointed out that there are far better ways to get attention than blindness, so it’s not a very likely assumption.  Plus, it provides a great opportunity to educate people if they ask about it, which actually brings me to the third place I used it– the train station.

My girls and I rode the train to Aurora– a nice, short ride– a few weeks ago and absolutely loved it.  As we were waiting for the train, my 2-year-old was having the time of her life playing with my cane– swinging it around like a baton and whacking her teddy bear in the face with it.  A man asked me whether I could see anything because he was nervous that she was going to hit me with it.  I explained to him that I could, much to his relief.  And considering that only 10 percent of legally blind people are actually totally blind, I do think it’s important to educate the public about the other 90 percent of people who they may see using canes.  (http://en.wikipedia.org/wiki/Blindness)

The final cane use was the most difficult for me because it was while we were out with friends. The DMV and library were relatively easy because everyone around me were strangers. But there’s something about pulling out my cane in front of family and friends that is the most difficult for me even though I know they would be supportive (and probably relieved they don’t have to drag me around in crowded places!). Typically when I’m with people I know, I link arms with them when it gets dark or crowded so that I can find my way around, but when we were walking downtown a couple weeks ago, it was literally 102 degrees of pure steam outside, and I really didn’t want to make one of our friends even hotter by linking sticky arms. Plus, these particular friends are two of the most non-judgmental, laid-back people I know, so they made it easy to be matter-of-fact when pulling out my cane. In fact, I loved how my friend simply explained to her son, who was curious about the cane, that it was helping me not run into anything– no long, drawn-out explanation or stumbling over words– just a simple, true statement.

I’ve been trying to figure out why simple, true statements don’t come to my mind when it’s time to pull out my cane. Instead of thinking “this will help me not run into anything”, I start writing a novel in my head about all the many things using a cane says about me and all of the crazy assumptions people will make. If I use it walking Lucy to school so that I’m not constantly running into a crowd of kids and parents, for example, what will the other parents think of me, and will they still trust me to supervise their kids for playdates at my house?  I can admit that about half of the thoughts that run through my mind are ridiculous, but there are also some real fears here.

And after joining a Facebook conversation about cane use (Room With a View ladies’ rock!), I know I am not the only one. One of the women in the group actually coined the term “cane-o-phobia”, and it’s interesting to read comments all over the spectrum– from people who are terrified of the idea to people who are comfortable with it but whose families are not, and people who are so adamant about cane use that I’m slightly afraid they’d use it as a weapon (kidding, of course, but they do scare me a little).  One simple comment that helped put things in perspective for me said, “None of us want to be labeled as disabled, yet we want to be accommodated. Having some sort of visible signal empowers others to be helpful. Not everyone’s great at it [being helpful], but I think the benefits far outweigh the stares and rude people.”

So here’s where I’m at with it at this very moment: I want to start using it regularly but don’t even know if I’m really holding it correctly. I put a call into the department of rehabiiliation, have faxed them my medical documents, and am now awaiting a mobility instructor. Ironically, my sister and I, living 2000 miles apart and having very little discussion about this, actually each indiividually called our state’s rehab offices on the same day. Jenelle has her own thoughts on the subject, so I will let her share from her perspective, though we have joked about having a “coming out” week (similar to the undocumented immigrants who have come out recently!) in which we both start using our canes regularly. Until then, I will be okay with pulling it out randomly and somewhat awkwardly, knowing that it’s a start.

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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.

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?”