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

We are excited to share our contest winner, Tracey Westphal’s, poignant and inspiring piece with you.  Tracey has a very interesting perspective, as both her father and twin sons are affected by RP.  As visually-impaired parents, it’s often difficult to think about how our kids view us, but reading Tracey’s memories of her father is definitely uplifting.  And reading her insights on raising children with RP is encouraging for any parents struggling to find the balance between pain/worry and knowing your kids will be okay despite their RP.  Thank you, Tracey, for your honest and hopeful account.

 

 

 

 

Learning Lessons

Growing up with a “legally blind” father may seem like a unique experience but for me and my sister, it was our normal.  Dad took the bus to work every day.  As little girls, we would run to the bus stop to greet him at day’s end.  Our life wasn’t like everyone else’s.  Life was a little different.  My mom was the only driver.  Plus, we weren’t allowed on the grass at all once Dad started the mower.  Still, we stood on the wooden deck and directed him with our shouts when he didn’t mow in straight lines and left “Mohawks” in the grass.  I never really viewed my dad as a “blind guy”.  He was just my dad.  Oh, and by the way, he was blind.

I loved the stories he would tell.  At 15 years old, he had decided not to take driver’s training because he knew he would never pass the vision test.  Apparently, his friends talked him into taking the class anyway and he just turned the wheel and braked when they told him.  “Dad, I can’t believe they let you do that!”

“Well,” he would answer with a smile, “I did pass the class.  They didn’t give you the vision test until after the training. ”  I never thought how sad his teenage heart must have been that he could never drive.  He never mentioned it.

Dad and I would walk to the nearby mall for a “date with dad” and buy dessert.  While shopping, he would sit patiently outside the dressing room for hours while his daughters paraded around in whatever we wanted to try on, usually the fancy gowns people bought for cruises.  “How do I look, Dad? This one is blue.”  “You look beautiful,” he would say.  And even though we both knew he couldn’t really see me, my heart would still fill with happiness and I would feel beautiful and very loved by my Daddy.

But now, I am the grown up.  I am the mom, and my little boys were diagnosed with that same disease last year.  We all talked about it at the kitchen table so my twins are aware of their condition.  Their older siblings often help them find things that fall on the floor or call to them when we are in a new environment.

But I have those mommy moments.  Last September, Marcus ran right into a picnic table bench full speed.  I knew he had seen the table but the bench was outside of his field of vision.  He looked down in surprise after the collision.  I headed over to comfort him but a bruised knee didn’t matter to this active boy.  He just brushed himself off and kept following his older brother’s call.  Yet, my mommy eyes welled up with tears.  I don’t want this for my boys!  My heart seemed to scream.  It doesn’t matter now, my mind reasoned back, and you’ve got to make the best of it.

This pattern still continues as I listen to bedtime prayers, “and dear God, pretty please have a doctor learn how to fix my refinit retinit pigmona!  Please, please”.  My eyes blink back the tears as my heart grieves and my brain says, “Never let them see you cry; be brave and strong for your boys, tell them what they can do, and let them try anything.  Remind them God has a plan.”

Not every day is like that.  My Lucas and I had an early morning cuddle, “Mama, will I grow up to be like blind like ‘Papa’?”

“Maybe,” I answer truthfully, “maybe not.”

“Well, that wouldn’t be so bad,” he answers, “Papa is very strong, and he can even listen to the Bible on tape!”

I am so grateful for an active Dad whom I have never seen wallow about his blindness, but simply accept it and move on.  I don’t think the words, “I can’t” are even in his vocabulary.  As a young man, he exercised as an avid runner, eventually using a sighted guide to finish his races.  Now, in his older years, he loves to snowshoe and sled with my kids, spending hours outside with them until they are all redfaced and chilled.  He has an exercise room in his basement and the kids love to listen to his radio and exercise with their Papa.  It’s even entertaining to me to hear my daughter say, “Oh, my Papa taught me how to hula-hoop, but his record is 392 times!  I haven’t beat it yet, but I will.”

So while my mommy grief threatens, my mommy hope is proving stronger.  These happy boys who I love so much will someday grow into men.  What their sight will be then we do not know, but I hope and pray their vision for life will be strong, just like my Dad’s.

 

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Honorable Mention:  Jean Porter (note:  With the driving issue being such a difficult one, this story definitely resonates with any person dealing with the hard, disappointing facts of vision loss.  Thank you, Jean, for sharing your son’s realization and acceptance.)

From a very young age my son, David would comment when we were out in the car, that when he was old enough he would help me out with the driving.

At the time I was divorced with 4 small children and each time he mentioned it I would wonder how on earth I was going to tell him that his eyesight was not good enough to drive.

When he was about 9/10 years old we were heading home one evening, there was just the two of us in the car and he suddenly asked where we were. I told him where we were and he just said “Mum, they won’t let me drive, will they?” I said “No David, I’m sorry they won’t.”

He never mentioned helping me out with the driving again and I breathed a sigh of relief knowing that he realised himself that his sight was too poor to drive and I didn’t have to tell him.

He’s 21 now and recently we talked about his vision and finding a cure for Retinitis Pigmentosa. He told me that he would be happy if someone could stop the deterioration so that his vision wouldn’t get any worse, but he biggest regret is that he would never be able to drive!

 

 

 

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.

In conjunction with my last post, I wanted to share a brief snippet from one of my new favorite books, “One Thousand Gifts”.  While this author is not visually impaired and the content of the book has nothing to do with RP, I think you will find it inspirational nonetheless.  Using some of the best writing I’ve read in a long time, Ann Voskamp speaks truth about noticing and giving thanks for ordinary aspects of life– even the aspects that are difficult and painful.  This book has challenged and deepened my faith as a Christian.  I found myself smiling to myself at many parts, laughing and even flat-out weeping in the middle of one chapter.

It’s one of those books that really stays with you and helps you glimpse life anew. Interestingly enough, I noticed that she uses quite a bit of vision metaphors and in ways I hadn’t seen used before.

Even if you don’t have time to read the book (or listen to it– it has won awards for the audiobook version!), I think the clip alone will inspire you to slow down and be thankful today!

http://www.youtube.com/watch?v=GhOUaszMGvQ&feature=youtube_gdata_player

(note: During the month of October, you may notice me posting more often than Jenelle.  This is because she lives in this amazing tourist town with one of the best Oktoberfests outside of Germany (hence, she hosts friends and family in her home most of the month!)  She’ll be picking up my slack, however, in December when my pastor/musician husband will probably be working crazy hours!)

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

My sister sent me this video clip recently, and I found this story very inspiring.  Rare disorders such as RP and Ushers don’t get a lot of media coverage, so it was really great to see this story on the Today show thanks to reporter Peter Alexander and his sister Rebecca, who has Ushers syndrom.  Ushers is similar to RP in that it is a degenerative disease affecting peripheral and night vision, but it also affects hearing.

When I watched the video, I instantly wanted to be friends with Rebecca – her energy and passion for life made me smile.  I particularly liked the emphasis she placed on not letting Ushers define her, which is probably one of my biggest fears about RP.  I am afraid that when people find out that I have RP, that is all they are going to think of when they are with me.  I don’t want to be put in a box or labeled.  That is why I often wait to share that I have RP until I know and trust the person I am telling.  As Rebecca points out in this story, we’re often so quick to judge and yet never really know what people are walking around with.

I also appreciate her “seize the day” attitude in which she focuses on the present and doesn’t fear the future.  She’s not letting Ushers stop her from anything she wants to accomplish, noting that it might just take her longer or she may need more support along the way.  Sometimes I catch myself thinking of all that I want to do in life before I lose more vision when I should be focusing on what I want to do in life regardless of my vision.