I was 33 when Dr. Heckenlively told me I was going blind. After dropping the bomb, he took a vial of my blood to, as he so eloquently put it, “rule out syphilis”, gave me a list of vitamins that might slow the progression of my disease, and sent me on my way. I felt like I had been punched, like I was lying prostrate on the floor and couldn’t breathe. I was overwhelmed, felt clueless and afraid. I had no idea what RP was going to do to my life.
When I first heard about RP, it was from a TV show, and a million miles away from my reality. The TV program talked about RP being genetic and introduced families with multiple people affected by the disease; the first time it was suggested that I might have it, I ignored it because no one in my family even wore glasses, except me. I soon learned that RP is most often genetic, but not always; there are a handful of us that are the sole proprietors of RP in our families, and in my case, I was completely unprepared for it.
I did my share of online research in the months before my diagnosis, but a lot of it was about the genetic aspects of RP; this gave me a false hope that I didn’t have it. I read countless simplified descriptions of RP symptoms: Night blindness, loss of peripheral vision and eventually central vision, resulting in total blindness. I am not a particularly sciencey (yes, I know that isn’t a word) person, but I will try to throw a little bit in here. Basically, the retinas are made up of 2 kinds of cells (photoreceptors), called rods and cones. The rods are responsible for low light and night vision, while the cones are responsible for color and detail. There are way more rods than cones, and the rods are the ones that begin to degenerate first in a disease like RP; that is why we experience night blindness and a loss of peripheral vision. I am sure this is a very rudimentary explanation, but hopefully you get the sciencey picture.
When most of us think about peripheral vision, we think about stuff that is seen way off to the side, or out of the proverbial corner of the eye. The truth is, because peripheral vision is dictated by the rods and the rods are pretty plentiful, peripheral vision is actually most of our vision. It is what you see all around you, not just way off to the side.
About six months after my diagnosis, I remember looking for a coin purse that I had dropped on the ground; I was looking all around, repositioning myself, but I couldn’t find it. The person I was with was perplexed and said, “it’s right in front of you.” The thing is, that phrase, “It’s right in front of you,” means nothing to someone with RP. When you have RP, right in front of you can shift and change and disappear completely. It can seem to an observer that I am looking right at something, but if my eyes are directed just slightly to the side of whatever it is I am looking for, it may as well be a grain of sand in the ocean. Peripheral vision is huge and complex.
I have searched for my husband in our apartment, walking past his desk 10 times, and it turns out he has been sitting there all along. When my dogs are standing at my feet waiting to have their harnesses put on for a walk, I have to scan the area several times to locate both of them. In a restaurant, I never see the waiter trying to hand me a menu, and glasses of water seem to materialize out of thin air. If I drop something on the ground, I often have to ask for help to find it. RP comes with so many challenges that I could never have imagined, but I am learning to be more patient; to take the time I need to find things and not allow my frustrations to take control.
I am sure that I leave stuff out that people might be curious about, and I welcome curiosity, so please don’t hesitate to ask questions.
You can also find me on Twitter and Facebook.
December 28, 2017 at 9:58 am
I don’t have any questions this time, but I do have a comment: you are truly an inspiring person, Susan. ❤️ Thank you again for sharing your journey with us.
And now I know all the sciencey stuff, too! 😊
December 28, 2017 at 11:20 am
Thanks Tom!!!!!! You are awesome!
December 28, 2017 at 11:31 am
That sounds like a very strange thing to go through. I so appreciate you sharing your experience with us! I have a question, did you find your other senses affected during this proccess? I know the brain sometimes tends to do funny things to fill in sensory “gaps”. Also Thanks for letting us ask questions!
December 28, 2017 at 11:42 am
Mandi, I love the questions. I will do my best to try and answer, but I think yours may require a blog post. My short answer is, kind of. I have learned how to rely more on my other senses and sometimes it feels like they have been kicked into high gear. Your question makes me want to pay more attention to it so I can better answer in a post. Thank you for inspiring me; with your curiosity and with your blog! You are really helping me feel positive about living a healthier life. And, your skin is fucking gorgeous, so bring on the veggies! Thank you!!!
December 28, 2017 at 2:16 pm
Id love to see a post on this! And thank you for your kind words!!
December 28, 2017 at 7:33 pm
This is a great question! I can’t wait to see what comes of it! 👏👏👏
December 28, 2017 at 8:32 pm
I know right! I got pretty excited that she’s gonna make a post about it!
December 28, 2017 at 8:25 pm
Do not give up hope. My wife was diagnosed with RP at the age of about 35. All doctors said she would be blind in a few years. Although she died from an unrelated disease in her 60s, she retained much of her sight throughout. We navigated through life by walking arm-in-arm or holding hands…which we would have done anyway.
December 29, 2017 at 7:23 am
Thank you for sharing this Bill. I am so sorry you lost your wife when she was so young, but it sounds like you had a beautiful marriage. I have also been pretty lucky in terms of the progression, and like your wife, I have an amazing and supportive husband. Happy New Year to you!
December 29, 2017 at 12:49 pm
It’s hard to like this. Can I ask you instead how you’re doing?
Thanks for sharing your story.
December 29, 2017 at 4:15 pm
Thank you so much for reading! I am actually pretty lucky in the RP world; my progression has been slow and I still have fairly good central vision (with glasses of course). I am so happy that you have become a part of my journey. I am looking forward to reading your blog. Happy New Year!
December 29, 2017 at 11:55 pm
My friend Tom recommended you and Tom knows good stuff. I’m happy too. Keep in touch and Happy New Year too.
December 29, 2017 at 4:27 pm
One more thing I’d like to add…many a time I would have to say to my wife, “[so-and-so] is reaching a hand out to you” as she couldn’t see that person offering to shake hands. The first time she didn’t see the hand the person felt snubbed. When I told her to reach out everyone seemed to understand.
While I couldn’t be there for my wife 24×7, I made sure she felt safe. RP is scary and isolating. No doctor we ever encountered offered programs for coping. No cure plus no professional support means heavy reliance on family.
Stay vocal. Ask for what you need. Not everyone who loves you gets it but they do want to get it.
December 30, 2017 at 5:59 am
This makes me very emotional Bill – Thank you for reaching out to me; you obviously do get it, as does my husband. I have had a tendency, with my family especially, to keep a lot to myself regarding my RP, but I need to become more vocal. I would also love to hear more from you about what it is like to be on the other side of RP; I think it would help me understand more of what my husband is going through as well. Thank you again and Happy New Year!
December 30, 2017 at 9:18 am
I have no idea what your husband feels about all this, but I do know what I felt as my wife’s RP progressed. We made adjustments along the way. Each one helped us both. I got to understand more of what she couldn’t see and we melded closer together as it was really our battle, not just hers.
I remember the day I spent plugging in nightlights in every area she needed to walk. Lighted wall switches replaced regular ones. It was no longer a bad thing to leave lights on when I left a room. Movie theaters became a memory because the darkness frightened her so. But that just meant we watched movies at home and chatted over the dialog and had to back it up to hear what the actors said.
All in all, our life changed. It didn’t get worse. It just changed. The life you and your husband have will change, too. But it doesn’t have to be a bad thing.
December 30, 2017 at 9:24 am
I know how lucky I am to have my husband, to have someone who is in this with me. I worry sometimes about him worrying about me, but I think that is just part of loving someone. RP is such a crazy disease; he and I often laugh about it, because sometimes, there is nothing else you can do. Thank you again for reaching out to me.
December 30, 2017 at 9:58 pm
We did the laughing and the tough love. Crying went along the by-way once we got the secret decoder ring.
December 29, 2017 at 7:09 pm
❤️❤️❤️
December 30, 2017 at 9:03 am
I have been so afraid to ask anything because I felt you would be uncomfortable. Thanks for opening your platform for questions. Ok! Do you have a special program to help with your post? Your post are well written & you respond back to your readers very consistently.
December 30, 2017 at 9:15 am
I am so glad to hear that you feel free to ask now; I am totally open to questions!!! As far as writing my posts, I have been very lucky in that I still have enough usable central vision and can read and type with a few minor adjustments. I am severely light sensitive, so I usually invert the colors on my screen; the glare from the back light on screens can be very painful if I am exposed to it for too long. I also increase the font sizes on all of my screens. I can no longer read real books comfortably, but I am in love with my (non back lit) kindle. I am so glad you asked about this; You have given me an idea for another post! Thank you!!!
December 30, 2017 at 9:30 am
Omg! Thanks so much. I really did not feel free to ask, but I am more comfortable now because the doctor that did my eye exam said I need trifocals do to my age & its only been a week & I still have not adjusted. I have to look straight ahead & move my eyes. I started wearing glasses in the 8th grade & I always felt wearing glasses would help my eyes, but age has taken control. I am looking forward to your post.
December 31, 2017 at 12:35 pm
I use a computer all day long. Ask your optometrist for a pair of computer glasses. They should be bifocals: top for18-to-24 inches away. Bottom for reading. You will no longer strain your neck trying to align the lenses.
December 31, 2017 at 1:15 pm
Thanks for the advice Bill! Happy New Year.
December 31, 2017 at 5:20 pm
You’re welcome! I can’t believe your optometrist didn’t suggest that. Maybe time to find another?
January 1, 2018 at 10:18 am
My husband wears triocals and he got used to them after not too long. I can wear bifocals or trifocals because I have trouble foucsing, so I have distance, computer and sunglasses. Hope you had a love New Year celebration!
January 1, 2018 at 11:01 am
Thanks! It was only a week Saturday. He said it would take two, so I just have to be patient. I slept the New Year in. Have a wonderful day
January 1, 2018 at 11:01 am
Thanks! It was only a week Saturday. He said it would take two, so I just have to be patient. I slept the New Year in. Have a wonderful day
January 4, 2018 at 3:01 pm
I’ve come here via Tom’s blog and just wanted to say how inspiring I find you. Thanks so much for sharing your journey with us. Clearly you have many gifts and strength and patience are merely two of them. I wish you all the best in the future. Warmest wishes from down under.
January 8, 2018 at 6:14 pm
HI Miriam – Your note went to my spam and I am just now reading it. Thank you so much for your lovely words and for reading!
January 8, 2018 at 6:23 pm
No worries. That seems to be happening a fair bit lately with my comments. But glad you found it. Thanks for fishing me out!! 🙂
January 14, 2018 at 8:37 am
Hello and thank you for blogging about your journey. It is not only inspiring but sobering (wait…I’m welling up 😦 ) for those of us who PAM (piss and moan) about our trivial ‘problems’.
This is your “about” page and you have quite the archive, is your entire blog about RP?
BTW; I’m here via Tom’s post too.
January 14, 2018 at 9:09 am
Hi! Thank you so much for checking out my blog and for your generous words. My blog is primarily about RP, but it reaches it’s tentacles into other parts of my life as well; I do my fair share of PAMing. Hahaha. I am looking forward to reading your blog! That Tom is pretty awesome!
January 14, 2018 at 11:24 am
Hey, nothing wrong with some good’ole PAMing as long is it is so chronic it becomes toxic. See you soon!