Jenelle

Happy Anniversary

Yesterday was Ben and Joy’s lucky 13th wedding anniversary, so I would be remiss if I failed to congratulate them on this accomplishment!

And today, July 18th, I want to say Happy Anniversary to doublevisionblog! It may be faux pas to wish ourselves a happy anniversary, but we’re doing it anyways. It’s all part of redefining normal as our so-called “blog tagline” goes. When we started this blog one year ago, we weren’t really sure what would become of it. We had a general idea of what we wanted to write about, but the blog has evolved from there. We have been encouraged by our readers to continue to share through our writing. I want to thank my sister, Joy, for continuing to post over the last six months. Frankly, I just haven’t been in the mood to share. But I am sitll glad that Joy has kept the blog going because her writing continues to inspire me and others.

The response we’ve received from our friends and family has been overwhelming to say the least. We are so grateful for your uplifting comments and interest in our posts.

On our anniversary, I wanted to take the time to collect a few of the comments from complete strangers that have been especially touching to us this past year. If it seems like we’re patting ourselves on the back here, that is exactly what we’re doing. We’re proud of what we’ve created and the small yet meaningful impact it has had on others.

“So well written….. My wife’s (Anne) RP was diagnosed the first year of our marriage. We have now been married for 22 years. She has about 13 degrees of visual field and had to stop driving about 13 years ago now. Reading your blog is real helpfiul to me. It is so much of what we experience and I felt such a sense of “yup we experience that too” ….just went walking tonight and noticed the sun had begun to set earlier…keep up your blog and thanks again.” – Steve 8/18/2011

“I just came across your blog…my wife has RP, so I am reading up on how others live with the disease. I saw that you live in Leavenworth…my wife is from Wenatchee and we currently live in Bellingham, WA. You and your sister are doing wonders through your writing by just sharing. Thank you.”
– Ryan 8/31/2011

“Dear Joy and Jenelle, I am SO glad I found your blog! I have Usher Syndrome, Type 2…which, as you know, is both hearing impairment and RP. My sister, three years older than me, also has this. Our stories, though, are very different from each other – in terms of when the RP was diagnosed, how slowly or quickly it progressed (over the past 22 years for me, but only three or so years for my sister), and how we cope with it. My sister created a Facebook page called Usher Me In – she is sharing her experiences. I have not decided to do anything yet, but after reading your blog, I am inspired to do a blog of my own – or perhaps ask my sister to do it with me, just as the two of you are doing! I cannot even tell you how many of your stories resonated with me! And I laughed at many of them, even though they caused such embarrassment and tears for you…and for me in my own life…but I laugh because I thought “yes, exactly!” and recalled my own experiences that were so similar – I sometimes thought you were writing MY story, even your word choices were perfectly applied to me at times! So I laugh because it’s more cathartic than crying, most of the time anyways. And I feel your pain, your shame, and your strength to write about it and hopefully laugh about it, at least after the fact. And also, you’ve given me the “lingo” and the joy of calling myself another VIP….we may be visually-impaired people, but I think we are also very important people, very inspiring people, very independent people…and I’m sure I’ll come up with more! Thank you and keep writing please!”
– Roberta 9/4/2011

“Firstly, “hello from Australia”, I am a new reader. Secondly, thank you. Thank you for taking this courageous step and sharing your letter. I’m sure that anyone with RP or similar conditions will find at least one thing in this letter that truly helps them by way of knowing that someone else gets “it”. The value in that is monumental and by you being generous with your emotional journey, you are giving a great gift. I took a step in sharing the details of my eye conditions on my blog some months ago and it felt great. While I had always said that I was legally blind, it felt freeing to share the specifics. I have more to share in time when I am comfortable with putting it out there. I am thrilled to bits to have found your blog.”
– Lucent 9/16/2011

“I juat got done reading this entry and I can tell you from probably line 2 of the letter you included I was crying. I feel all those things but rarely say them and surely do not write them down. Reading this has helped me understand that I need to face all those things I hate about RP and move on so I can be a better and productive mom, wife and just person in general. Thank you so much for sharing this!” – Becky 9/16/2011

“This has truly been the answer to a prayer…I continue to pray to find someone who experiences RP in the form that I have. I am “highly vision impaired” but I do teach every day. Unfortunately, many people want to use your vision loss against you…so tired of feeling stupid all of the time…I have goosebumps reading what you wrote. It is so on target with how I feel…” – Linda 9/22/2011

“I am late to this blog…..I am late to most things due to RP…..this is the greatest representation of what daily life is all about with RP that I have ever read. I will be reading this blog for as long as I still can see the screen. You two are the greatest. Thank you for providing information to the masses that us shy people just cannot bring ourselves to do. Greatness. Thank You.” – Scott, 6/28/2012

Rare Disease Day

In case you haven’t heard, today is not just Leap Day – it’s also Rare Disease Day. “Alone We Are Rare, Together We Are Strong” is the tagline for this campaign, and I think it’s a brilliant idea. Public awareness can help living with diseases like RP a lot easier. For example, I recently heard about a woman with RP and her guide dog being asked to leave a restaurant because the owner saw her reading the menu. He didn’t believe that the guide dog was necessary since this woman could see enough to read. He had obviously never heard of RP or being partially-sighted. Many of these diseases, including RP, are rarely included in mainstream media, so it’s no wonder that the public remains ignorant of these diseases. “Most of the conditions the Foundation targets are considered “rare” because they affect less than 200,000 Americans and stem from defects in nearly 200 different genes. According to the National Institutes of Health (NIH), there are nearly 7,000 rare diseases affecting approximately 30 million (or 1 in 10) Americans” www.blindness.org

I wish that I could say that having RP has helped me not to be as ignorant as the previously mentioned restaurant owner. However, a few years ago I had an experience that showed me how insensitive I can be. When I worked for a consulting firm in Seattle, one of my main responsibilities was planning social events for the consultants. I remember feeling slighted because one of my colleagues always left the events early and never brought her husband to any of the activities I planned – she always had a different lame-sounding excuse as to why he couldn’t join us. But after I got to know her better, I learned that her husband has early on-set Parkinson’s disease, and was too embarrassed about it to come to the events, and that she frequently had to leave events early because she needed to get home to help care for him. I remember feeling so ashamed of myself for assuming that she was just a flake and not giving her the benefit of the doubt. I know this is something that we’re all guilty of to some degree.

My husband and I were just chatting with some friends over brunch on Sunday about how RP has affected our lives and my husband shared some really good insight. He said that my RP has caused him to give others the benefit of the doubt more. If someone bumps into him on the street, he doesn’t automatically think, “What an inconsiderate jerk!” or “Watch it buddy!”. Instead, he thinks to himself, “Maybe there is a reason that person accidentally bumped into me that I don’t know about”. You really never know what someone else is going through, so why not have a little extra grace for that stranger, neighbor, co-worker, family member, friend, etc. that does something that you find a little bit odd or even rude. A little compassion goes a long way.

In addition to public awareness, Rare Disease Day aims to encourage politicians to increase funding to the National Institutes of Health and the medical research it conducts. Join me in participating in Rare Disease Day by signing this petition now.

Advice: From Parent to Parent

Yes, I am still alive and well in case you’re wondering why I haven’t posted in quite awhile. I am going to blame it on this busy season of parties, baking, shopping, sledding, and sneezing. As if it’s not bad enough that I’ve taken so long to post, I am not even writing this post by myself. This one has been in the making for quite some time, and it is a collaborative effort between Joy, myself, and our mom.

After receiving a lot of great comments and emails from parents of children with RP, Joy and I decided to create some blog posts that offer advice and encouragement to these parents and their children. We started by asking our parents for their perspective, which sparked a number of interesting discussions and emails. This process was really eye-opening for all of us, but more challenging than we expected. I think any time a family takes a trip down memory lane, it is normal to have different memories of the same events. Not to mention the fact that children process life events very differently from adults.

Now that Joy and I have children of our own, we are well aware of the fact that kids do not come with guidebooks. And while this post is intended to offer advice for parents who have children affected by RP, we recognize that each child is unique. There may be suggestions that are effective for one child, and yet not useful to another child. Especially given the spectrum of RP.

With that said, the biggest piece of advice we can offer you is to have on-going open communication wtih your child regarding their vision. While that might seem simple and easy to some, it can actually be a challenging process. Based on information we’ve read and experienced, children who grow up with disabilities or anything that makes them feel different than other kids, often feel a natural sense of shame and want to hide it.

As Joy and I have expressed in this blog, we often felt secretive about RP. Looking back, we appreciate the fact that our extended family didn’t make a big deal about our vision and just helped us (which we know now was what our parents sincerely requested of them), But it was talked about so little, that when it did come up, we felt awkward because we didn’t know how to respond. Even the sweet innocent comment of a younger cousin, “I’m sorry about your eyes” felt devastating to hear as children.

Our mother, Judy Derpack, has some more advice, relating specifically to education. In addition to being a parent of two children with RP, Judy has a degree in Early Childhood Education and many years of experience as both a classroom teacher and parent-educator:

“Here’s what I have gleaned and learned (but didn’t always do well): In all situations, look for adaptations. Your child does not want to be left out of anything (probably with the exception of PE class!) Be creative. Find a way to include them. Make your family, friends, and educational community aware of how they can help your child. Follow through to make sure adaptations are actually being followed. Lastly, and most important, YOU are your child’s best advocate! Don’t let pride, ignorance, or ineptness keep you from advocating for your child. Use your emotions and education to guide you as you advocate for your child. I am so darn proud of my daughters that I can’t even find the words to describe the feeling.”

Joy and I would like to tag on to our mom’s words of wisdom. Please also make sure to actually sit down and ask your child what they need. Some of the adaptations we received in school were really not helpful to us at all. RP is very different from many other visual impairments, so doing things like blowing up worksheets can actually make it worse for students with RP. Especially at the beginning stages of RP, there may be very few adaptations that your child really needs, besides the awareness of the teachers. Forcing adaptations that aren’t helpful to your child can make it even harder on your child (i.e. pushing books on tape when they really are fine reading on their own.)

Also, along with being included in the classroom, your child doesn’t want to stand out or be singled out, so find ways for the adaptations to be seamless and natural– not obvious and forced. This just adds stress to what is probably already a challenging school environment. Always check in with your child to see what is actually going on in the classroom and beyond. Teach them to be their own confident advocate so that you don’t have to do the talking for them. One of my biggest pet peaves to this day is when someone asks another person to assist me when I am standing right there.

As previously mentioned, this is the first post in what will be a series of blog entries about raising children with RP. We hope that it is helpful for families affected by RP, and we welcome your questions and comments. We also want to acknowledge our parents for their role in creating this series of posts. We know that sharing these feelings and revisiting these memories that have been tucked away was not easy, so Joy and I really appreciate their willingness to share with such humility and retrospect.

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.

The Latest Research

I am quite certain that I am not qualified in any way to write an article about the latest RP research. It is even a stretch for me to post on our blog regarding the random information I’ve gathered from my dear friend, the world wide web. But I’m just in the mood for this kind of thing, which is likely a sign that I’m stuck in what Joy refers to as “cure mode“. No need to be too concerned – I get stuck in this mode from time to time and I always manage to find my way back out again. My eyes are, of course, burning from too much screen time, so here is my attempt to summarize the current research for you in order to save you the time and eye strain.

My number one tip for staying on top of the latest RP news is to sign up for Google Alerts. Thanks to a tip from an east coast “RP friend” of mine, I’ve streamlined my research by using this method. Just go to google and click on “news” at the top left of the page, enter “retinitis pigmentosa” in the search field. Once the results come back scroll to the bottom of the page where it says “Stay up to date on these results” and click on “create an email alert for retinitis pigmentosa”. Enter your e-mail address and you will start receiving daily alerts directly to your inbox. The alerts that come through are a mixture of medical research and personal stories.

After reviewing the most recent RP-related articles, I am encouraged to learn that researchers are looking into several different approaches to RP treatment, including gene therapy, stem cell therapy, and vision preserving drugs. From my perspective, none of it is moving fast enough. Of course I don’t know or understand enough about any of this research to be a good judge of the timing and progress made (not to mention, all of the funding that is required to conduct this research!).

Most recently, I’ve learned that I could potentially stop RP from progressing and prevent getting pregnant at the same time. Talk about killing two birds wtih one stone. “A study in September’s issue of the Journal of Neurochemistry reported that a component normally found in the human contraceptive pill helps reduce vision loss in mice with retinitis pigmentosa. “ It doesn’t appear to have been tested on anyone other than mice so far, but check it out for yourself. Apparently human trials will begin for this drug in October. My sister’s OB looked into this specific type of mini pill, however, and apparently the drug manufacturers are no longer making it because it does a lousy job contraception-wise. Hopefully if it does prove to be effective in the human trials, the drug companies will come up with a new one that is specifically for people with RP, including men.

I also want to point out that the FFB does an excellect job of posting the latest RP-related research articles on their site, so I frequently visit this website to make sure I’m not missing out on any new information.

Another sure way to stay on top of current research without having to peruse the web all day is to talk with people on RP forums and Facebook pages. Joy and I belong to several amazing FB groups, including “Room With a View” (private FB group specifically for visually-impaired women), “Usher Me In”, “Help Find a Cure for RP”, and “RP Family”.

Stay tuned for our upcoming blog on alternative medical treatments for RP, which will include information about our upcoming trip to world-renowned Acupuncturist, Dr. Yu, in Vancouver, British Columbia.

Until then, stay hopeful and encouraged– even if the latest research doesn’t lead to an instantaneous cure today, there is always tomorrow. And even if tomorrow doesn’t happen, people with RP are living amazing lives everywhere.

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.

Encouragement

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

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

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

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

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

The Secret Ingredient

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

Flying Balls & Other Memories

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