Joy & Jenelle
We are identical twin sisters who have grown up with retinitis pigmentosa RP. Although we look a lot alike on the outside and share the same challenges of vision loss, we often have different perspectives on the disease and each deal with it in our own way.
We created doublevisionblog to show that there is no right way to go blind. We hope that in sharing our perspectives and personal experiences, we can encourage our readers in their own journeys through life.
A little background on us individually:
Jenelle Landgraf, MSW
(The oldest by 4 minutes) My core values include connection, love, kindness, and compassion. I live and play in a small yet vibrant mountain town in the Northwest where I enjoy lots of time outdoors. I am an active member in my local community devoting energy to immigrant justice efforts, crisis advocacy for domestic violence and sexual assault survivors, and promoting wellness through teaching community yoga classes. I run a small private practice called “Peaks & Valleys Healing” where I focus on the mental health needs of adolescents, adults, and families as they embark on their healing journeys. I feel like this next sentence kind of sounds like it is meant for a dating profile, but I’m going to include it anyways. An ideal day for me involves lots of laughter, connection with loved ones, sweating as a result of physical movement, delicious nourishing food, and quiet time in nature.
Joy Thomas, M. Ed
My family of 4 and I moved from the Midwest to the West coast in 2016, where I served as dance mom, driver/rider for kid activities (courtesy of Uber and Lyft) and homeschool mama. I then transitioned from these roles into a full-time position at a school in SoCal about 4 years ago. Drawing on my background as a middle school English teacher and my love of social services, I currently provide academic intervention and social/emotional supports to students and families at an independent study school in Orange County.
An ideal day off work looks like this: After a restful night’s sleep, I awake to the sound of my husband strumming his guitar in the living room, with jasmine incense filling the air with a soft yet warming scent. He hands me a mug of warm lemon water and says “Morning babe! I’m writing a song for you,” and then proceeds to serenade me with a beautiful ballad that brings tears to my eyes. I walk to a nearby tea shop or juice bar with my guide dog, Roja, to meet a kindred friend who I have a riveting conversation with about a new book or podcast episode as we laugh and then cry and then laugh again. Then I go on a challenging-but-not-too challenging hike. I come home to write and snack for a few hours Then I meet a family member or friend for paddle boarding, and we provide each other the exact words we both need to hear regarding something challenging we’re going through in life, and then we find a way to help others who are experiencing something similar. I come home for a relaxing bath before cooking my favorite Thai chicken soup and sweet potato kale salad, which my kids love and thank me for profusely, saying they are thankful to feel so nourished by such an amazing mom (note: some aspects of this ideal day may be exaggerated or entirely fictional altogether). Then we play a new favorite board game, “Blank Slate” while laughing so hard that my stomach muscles feel like I’ve been doing an ab workout, and magically my abs follow suit to the point that I actually never need to do another crunchy again. Then my daughters make me lemon merengue pie and we watch the Christmas episode of Ted Lasso and finish the evening by reading “Anne of Green Gables” before falling into a blissful night’s sleep. (This has never all happened in one day, but it gives me something to aspire to)
About RP
Retinitis Pigmentosa (RP) is the name given to a group of hereditary diseases of the retina of the eye. The retina is located at the back of the eye and acts like film in a camera, receiving and processing all of the pictures that come into view. The retina is a delicate layer of cells that pick up the pictures and deliver them to the brain. In the human retina there are two types of light sensitive cells-rods and cones. Cone cells are located in the center of the retina, the Macula, and are used to see color and precise objects like small print. Rod cells are much more numerous and are necessary for peripheral and night vision. There are about 120 million rods in the human eye, mostly at the outer edge of the retina. In a person with RP, a breakdown has occurred in the function of the rods.
Since the retina is so complex, there are many forms of RP, and as a result, many different symptoms. But the basic deficiencies in all people with RP are a loss of peripheral vision, often called “tunnel vision”, and poor night vision, often referred to as “night blindness”. RP is a degenerative disease, which means that rod cells will continue to dysfunction over time, causing the further loss of peripheral vision but eventually entering the central vision, leading to total blindness. This happens at various times depending on the person, sometimes occurring in young children but many times not until middle-age or beyond. Some people may be diagnosed with RP as a child if their vision difficulties are apparent, and others may not be diagnosed until a much later age.
What We See
Since RP is a genetic disorder; our parents both unknowingly carried the gene, which left us with a 25% chance of having RP. As chances often have their way, we were diagnosed with RP when we were 5 years old, at which time we had already lost a significant portion of our peripheral vision. Since vision loss occurs at such a slow pace, people with RP often adjust to the vision loss in such a way that they do not notice the changes at first. So, while it’s hard to tell how much vision we’ve lost since we were first diagnosed, our opthamologist visits have confirmed that, while our fields have gotten slightly worse over time, our vision has been fairly stable.
Our visual fields are both at around 4-5 degrees (out of 180), so it’s kind of like looking through a tiny straw, making things such as driving and playing sports nearly impossible. Our night blindness and poor depth perception make it pretty difficult to walk in dim-lit restaurants, outside at night, etc. We have been able to “hang on” to our central vision in the middle of that “straw”, however, so we are able to read large print when the contrast is high enough. We also have held onto our side vision, so it’s like looking at a puzzle where the frame of the puzzle is put together, along with a tiny piece at the center of the puzzle, but there are various pieces missing in between. These “missing pieces” don’t look black or like anything really – they just aren’t there. Some people also call this “donut” vision.
Our favorite anonymous quote describes our vision in a nutshell: “RP is seeing a piece of paper on the floor across the room and then tripping over an elephant on the way to pick it up!”
Way to go, girls! We’re your biggest cheerleaders!! Love, Mom and Dad
awwww……..love you mom and dad!
Hi Joy and Jenelle, I followed a link from the RP Facebook Group and have been reading your blog. I’ve really enjoyed the subjects and reading about your struggles with RP. I am insanely jealous that you have each other to compare stories/laugh/cry and commiserate together. LOL. I have very similar vision as both of you but wasn’t diagnosed until 5 years ago. I thought that little window is what everyone saw….I’ve always compensated by scanning. I am looking forward to your stories of parenting with RP and maybe one day sharing my stories of parenting 3 teenagers…it would be easier if I could see all of their face at once to tell if they are lying to me…but their hesitant speech usually gives them away! Thanks for sharing your lives…your girls are beautiful!
Sandy Sommers (Ohio)
Hi Sandy – thanks so much for you kind words! So glad you enjoy reading our blog. We will certainly need your parenting advice on the teenagers down the road, so please take notes! I am curious to know your perspective on telling people about RP since you were diagnosed much more recently than us? Also, were you somewhat relieved to finally have an explanation to why you didn’t see certain things that other people could see?
Jenelle
Joy–
Dan Deneen (aka uncle Bro), here is Richmond Hill, GA. Sister Pat sent the link to the blog which I just read and enjoyed very much.
I clearly recall a moment similar to your Kleenex ordeal when I was in first grade and bullied repeatedly— that memory, although fading somewhat, is still there, Billy K. waiting for me and punching me in the guy– happened daily— ….. although I do not have visual impairment, I do have sad memories of such past experiences. Those I looked up to let me down,
As a teacher here at the local high school, I deal with several kids that have problems related to diabetes, physical limitations, etc—- I really try to be as sensitive as I can as their advocate. It seems that in this evil world a greater number of people (sadly, teachers and administrators included) are so self absorbed that they blow off the significance of those with special needs.
It seems the bullying is diminishing a bit at our school (great legislative move for the feds and state folks….where were they when skinny old Bro was teased daily at St Stephens school in the late 50s LOL )…..anyhow, my task is to be the guy that the kids at school use as the go-to man when the dull and thoughtless teachers have hearts of stone. My faith prohibits no less……please keep me posted on the Canada plan, our family will be praying that it is successful….please know that an open invitation is in place for your family to visit us in GA, it would be great! Tell Ben I enjoyed the video Pat sent me of his church introduction a while back.
He is a great speaker and his faith is clear— those folks are fortunate to have him!
Sincerely In Christ– Dan Deneen
Thanks Dan/UB! I wish there were more teachers out there with your same mindset and values, and I am so thankful that your students have such a wonderful role model and someone to turn to. I am sure your experiences as a child are what fueled, at least in part, the compassion that you have for your students today.
We will definitely keep you posted on our treatment in Canada– we plan to blog on it daily while there! We really would love to come visit GA sometime, so thanks for the standing invitation (maybe once our youngest is a little easier to travel with!)
Thanks so much for reading our blog– glad you enjoyed it. Take care, and God bless! Joy 🙂
I have RP, a two year old beautiful, vivacious blonde boy and a 3 month old delightful baby girl. My wife is the love of my life, a woman I chased around the world before she would finally acquiesce. In spite of this, I feel the weight of the world crashing down on me because I suddenly feel totally inadequate and fear I will not be able to provide for my wife and kids. I am a 32 yr old man and because of this enormous new challenge, feel like a 90 yr old man. I was diagnosed two years ago, and just last month sold my house and left my job to enter a 16 month accelerated bachelors of nursing program, all this in order to hopefully find some career that will accommodate my diagnoses and support my family. I stumbled across your blog and I appreciate seeing that I am not alone. Thanks
Chad
Thanks so much Chad. I am so glad that you found our blog and have found it encouraging. I definitely know the feeling of the world crashing down. It sounds like you’re a very motivated, caring father and husband who is not allowing RP to stand in the way of your goals. Wow– nursing– I’m impressed you can do that with low vision, so kudos to you. What was your career before?
Definitely feel free to e-mail us personally if you have any specific questions or anything! Joy 🙂
So happy to find your blog. My twin boys, age 7, have XLinked RP, my dad is blind, and I am affected as well. I have given up night driving and have trouble recognizing people from a distance. I also have an affected daughter and a ten year old unaffected son. I hope to gain encouragement here. Thanks for sharing your stories.
Tracey
Thank you for reading our blog and sharing about your family, Tracey. I met a woman from Canada last week at treatment that has x-linked RP and 2 of her 5 children are affected by it and her dad went blind from it. She is really an amazing person to talk to and knows so much about the history of x-linked RP, so please let me know if you’d like me to pass your email address on to her.
I hope you find hope and encouragement and some good laughs from our blog.
Best,
Jenelle
Hi girls,
I’m 30 and I’m from the suburbs of Chicago and I was just officially diagnosed with RP today by my optometrist (the possible diagnosis was brought up a week ago). I’m still waiting to see a specialist but it pretty much looks like I have Ushers II (I was born hard of hearing but didn’t notice my vision going until I struggled with night vision in my 20’s). All I’ve been doing is crying all week but I came across your blog tonight and I have to say it was the first time I found something on RP that was reassuring, inspiring, and hopeful. The fact that you guys have had rp your whole lives and you still live a fulfilled life with kids gives me hope. I’d like to email you with personal questions but I can’t find the contact info. Could you give this to me? Thanks girls and keep up with the amazing work!
I became visually impaired at about 18-months-old as a consequence of a blood clot on the brain and have a friend who’s mother has RP. I was interested to come across your blog. All the best, Kevin
Thanks Kevin. I hope you’ll come back again.
Joy and Jennele,
You are two very special people. I can’t imagine the ‘Double Vision’ blog by a person of limited vision. Your writing is clear testimony to the double vision.
Keep it up
Paul (Author, Into the City Church)
Thanks Paul! Your words mean a lot to us! Thanks for reading!
Hi Jenelle, what a pleasant surprise learning that you are one of a set of identical twins. Before I looked at your About I thought the picture of you two was one done with a mirror app but I was wondering “nah, that can’t be right” because you two were holding hands.
You have a lovely blog and I’m so glad that we connected so that I can follow your posts. ~Steph
Hello Joy & Janelle,
I’m so happy we came across your blog! We have identical twin girls diagnosed with Retinitis Pigmentosa from Barde Beidl Syndrome. They have no other problems that usually accompany BBS like cognitive delay and kidney problems, we’re truly blessed.
Our girls are just about to turn eleven and aren’t able to articulate the differences in their vision. I’m sure this is in part because it’s all they’ve ever known. We’re all learning together but reading your blog helps us to understand what they’re seeing and possibly feeling. You’re helping us understand things from their point of view in a way we may not have done on our own, thank you for that!
My goal is to make sure my girls never feel there’s something they can’t do they just may have to do it differently. I want them to go thru this life with confidence and to stay the happy go lucky people they are. I look forward to reading your blog and sharing your insight with my family and friends.
Dear Joy and Janelle,
I am a new follower and have read several posts of your blog with great interest. I am entering the field of rehabilitation counseling working with clients with visual impairment and your energy and insights resonated with me.
Kindly,
Daniel
Thanks Daniel! Looking forward to connecting more! Feel free to pass our blog on to any clients who you feel it would help!
I would like to ask Joy some questions but not have anything posted on the blog. Is it possible to have her direct email?
Hi Patti,
Sorry I just saw this comment! My e-mail address is joyellenthomas@gmail.com. I look forward to hearing from you!
Many thanks for the great posting. I am glad I have taken the time to see this.
Thank you for sharing your story! I’m excited to catch up and follow along on your journey. Someone very close to me has a vision issue, and I want to do everything possible to help him and encourage him to grow and not let his vision stop him from doing what he wants.
With the vision that you can see, what is your visual acuity?
Best,
Sam
I really like this.
Thanks for sharing with everyone. I also have an inherited eye disease, Macular Degeneration. I also am feeding the eye with the plants that build healthy eyes and am rebuilding to 20 20 vision every time they start to degrade. Have you tried feeding the your eyes with the plants that build eyes? I use the herbal formulas made by Dr Christopher called Bilberry Eye and also the Dr Christopher formula called Herbal Eye. Both are the combinations of plants that rebuild the eye. My wife is also using Dr Christopher’s eyewash called Herbal Eye to help the ey rebuild and to dissolve cataract. She puts 2 or 3 drops of the liquid in an eyecup filled with distilled water and then puts it up to the eye and washes the eye for 2 minutes. It works to rebuild the eye.