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