A few months ago, I discovered Hadley, a non-profit organization established to help individuals with vision loss. I recently received an email with the following podcast and have found it very informative and helpful in understanding how to address the emotional side of my vision loss.
Dr. Ann Wagner, the guest speaker in this episode, addresses so many feelings I’ve had over the last year with my vision loss. Feelings of isolation, dependency, loneliness, hopelessness, helplessness, loss of self-identity, loss of self-worth, fear and anxiety. Dr. Wagner provides some helpful advice on how to work through some of these feelings. She also speaks about her own experience with vision loss.
I hope this is helpful for others who may be experiencing vision loss and the life changes that occur as a result. It may also be beneficial to share with family and friends so they can better understand and learn how they can help as well.
As it was getting near his birthday one particular year, I asked Luke what he wanted for his birthday. He said all he wanted was a Nintendo 3DS. I told him I wasn’t sure if I could make that happen or not, but I would see what I could do.
So, as a couple of months passed, I found a really good deal on a Nintendo 3DS. I don’t recall where I found it or even how much of a discount I was able to get on it, but I got it. All the while, I kept telling Luke I wasn’t sure or that I didn’t know or any number of other things to keep it secret from him.
I had decided I would give it to him a little bit early so if he received some money for his birthday, he could use it towards a case or another game for the system, if he that was what he wanted to do. So, a couple days before his birthday, I wrapped it and called for him to come to the living room.
He came to the living room and, in true Luke style, was still in his pajamas. I sat down and told him I hadn’t been able to find a “really good deal” on the Nintendo 3DS but I hoped he liked his gift anyway. He seemed disappointed and was almost in tears. He took the gift and started to walk away. I called him back to me and took the gift back from him.
We had a long talk about being appreciative of any gift he received, even if it wasn’t what he really wanted. We also talked about how expensive things can be sometimes and, when someone takes time to think about you and choose a gift for you, we really need to appreciate the thought and love behind the gift.
After talking a while, we sat and I’m sure we shared hugs and I encouraged him to go ahead an open his gift. So, he did.
Now, I’m just going to say that if you’ve ever seen one of those cartoons where the character gets what I call “slap happy” and is slapping their face trying to make sure that what they are seeing is real… Well, that was Luke! He opened the gift and found the Nintendo 3DS. He was so excited and surprised, he literally was “slap happy.” He was ecstatic!
This is a memory I hope I’ll never forget. I hope to be able to remember this someday when he and I can look back on it and remember a time of love and happiness.
I know this is a short story but hopefully one that will make you smile.
A long time ago, when John was little, we went to a church in the town where we lived. John went to children’s church and Sunday school class while I was in adult church and adult Sunday school. One day, we were on our way to daycare and work and we were talking about how foggy it was outside. There was fog everywhere but it wasn’t so dense you couldn’t see through it, so driving conditions were decent that morning.
We talked about how clouds were large collections of moisture high above the earth and fog was large collections of moisture on the ground… sort of like clouds. As we were talking, John mentioned that he had learned in Sunday school that Moses went up on the mountain to talk to God, and that God came to Moses in a cloud. Then John said, “Mama, do you think God is in the clouds around us?”
Oh, my heart melted because he was so thoughtful about what he asked. I thought for a moment or two and replied, “Yes, John, I believe that God is in those clouds and that He is all around us.” He seemed satisfied with that and was quiet for a while.
Sometimes, it’s the little things that make such sweet, sweet memories. It is memories like this I hope I’ll never forget and I hope to remind him of someday. Stories maybe he will share with his children.
I know this is a short story but hopefully one that will make you smile.
Recently, I was listening to a TV show and heard the speakers talking about how beautiful someone was. Around me in different places, I hear people talk about others and how they are pretty or attractive, or sometimes (sadly) how unattractive some people are. We see magazines and photos of actors/actresses/famous people who have been named the most attractive of the year, and so on. And, it isn’t that I think these people are unattractive, but I just started thinking about who or what determines a person’s beauty. Well, as you may or may not know (but you’ll soon find out), I tend to overthink things sometimes… and, well, I guess this is one case of overthinking… or is it? (Sometimes I think I think too much… lol!)
Now, I can’t say I don’t find some people more physically attractive than others because I do. Each of us has certain physical features which are more attractive to us personally than they are to others. Some people like noses, some like “toes-es,” and others like things in between. (Trying to keep it clean, folks… lol!)
So, I’m not here to debate what is beautiful because that is a very subjective topic, as well as a potentially slippery slope. But, when I started thinking about this topic more seriously, I began to wonder about some things. One of them being why did it matter that the speaker thought that person was beautiful… Then that thought turned into ‘who defines beauty?’ Then it led to ‘who defines MY beauty?’ And, maybe for this post you might ask yourself ‘who defines YOUR beauty?’
(As I have given this post much thought and consideration, writing and rewriting, deleting and editing, I have decided that I will try to keep this fairly simple. Sometimes the best things are said simply. And, FYI, this article is about myself and my journey but, if you feel it is helpful to you, please feel free to give it more thought and consideration.)
Now that I had “the ol’ bean rolling around in my noggin” (a country phrase if ever there was one), the thoughts just kept coming. Things like… Why do I let others’ opinions affect me so much? Does that person have my best interests in mind? Does that person really have a right to affect my life? my life choices? my future? my decisions? Do they encourage me? Do they lift me up? Are they my “cheerleader?” Do they support me? If not, then let… it… go!!! Let their opinion of you go. If that person falls outside of the questions above, their opinion of me should not matter. It should not carry any weight in my life. Now, I hope that doesn’t sound callous or heartless but, realistically, if they don’t care about me or my well-being, then should I allow them to impact my view of myself? Read on.
When I was growing up, I remember being teased by some of my school mates about my red hair and glasses. I heard all the Woody Woodpecker and four-eyes jokes and comments. I was told by one teacher that he’d “rather be dead than red on the head.” I was told by one boy that I was in his dreams… and then he said, “it was a real nightmare.” As I got older, I really wanted (and needed) to figure out why those things bothered me so much. For me, I believe it was because I wanted and needed to be accepted. But, more than being accepted by others… maybe I needed to… ummm…. accept myself. Ouch! Did I really just say that? Yep! That was a difficult time in my life. (If you haven’t read my post about loving yourself, that post is good background info for this post. Click here to go to that post.)
Once I reached the point of loving and accepting myself, even with all my flaws, mistakes, bad choices, and everything else in my past, I realized that what I thought about myself was MOST important. And, yes, I still have to remind myself of this sometimes. Self-esteem and self-confidence need to be refueled regularly.
Now that I’m older, I understand that, while I may still want to be accepted by others, I need to determine if that person is someone who DESERVES a place in my life. Does that person DESERVE my time, energy and emotion? Are they someone who’s opinion of me matters? Following is a summation of something that helped me tremendously!
Through the years, I have listened to a variety of self-help audiobooks. One book that I listened to, many years ago, talked about circles. (I can not recall the title but the author was Bryan Flanagan.) Flanagan described three circles in our lives: an inner circle, middle circle and the outer circle. (I believe there are similar stories about circles available on the web by other speakers/authors as well.)
The first, and most important, is the inner circle. These are the people who lift you up, encourage you, remind you that you can do great things, etc. This circle will be about 4-6 people who are closest to you. They care deeply about you and your well-being. They are the ones who are your cheerleaders. They are the ones you tell your deepest, darkest secrets and your most outrageous dreams. They are the ones you should listen to when you need advice because they will tell you the truth, even if it’s a little painful and difficult. But, they’ll also help you pick up the pieces if/when everything falls apart. They are the ones who have “got your back” and who will answer your 2 a.m. call for help.
The second circle is the people who are in your life, but not an important part of your life. These could be coworkers, neighbors, extended family, etc. This group is made up of people you interact with routinely but you don’t share with them your personal issues, darkest secrets or biggest dreams, etc. The people in this circle may or may not support you or encourage you. You don’t spend a lot of intimate time with them but they are in your life regularly.
Finally, the outside circle. These are all other people you may or may not know. This may be the customer in your check-out line at work. Or, the person you talk to about the weather while you’re in line at the post office. It could be the person on the treadmill next to you at the gym. These people do not influence or impact your life.
So, to bring this back around to the topic at hand, who defines MY beauty? Or, more appropriately, who should I LET define MY beauty? If I am letting people outside of my inner circle influence and impact my view of myself, it may be time for me to refocus. If the people I have allowed into my inner circle are not supporting me or building me up, it may be time to reevaluate their place/priority in my life. It may be difficult but here’s the reality of the matter… I DESERVE to have people around me that have earned the PRIVILEGE of helping me define MY beauty!
I have never considered myself to be a “beautiful” person. I have struggled for many, many years with insecurities about how I look, act, talk, and other things. And, quite honestly, I still do some days. But, through the friends and family in my “inner circle,” I have learned that I am a kind, caring and giving person. I am compassionate, empathetic, loyal and trustworthy. For me, these are the qualities that are important and they make me beautiful. Maybe that thought is what sparked my thoughts on this and why I feel compelled to share it here.
And, as I mentioned in my “About Me” info, I write a lot of these posts to encourage myself as much as I do to encourage others. I wish you the best in your journey. I hope that something I share may help you see yourself more positively.
Thanks for stopping by.
Take care!
Rebecca ~~<3~~
DISCLAIMER: I am not a therapist. I am not giving advice. I am only sharing my personal experiences, thoughts and my journey to self-love. Maybe the information shared will encourage others to seek help to learn to love themselves more and to define their own beauty.
Summary of the Ninth Annual Retinal Cell & Gene Therapy Innovation Summit 2024
This article from Foundation Fighting Blindness, dated September 4, 2024, has some very interesting updates on retinal cell and gene therapy for a number of retinal vision issues. For the full summary of the Ninth Annual Retinal Cell & Gene Therapy Innovation Summit 2024, visit this link.
In particular, Session 3: Clinical Gene Therapy; PRODYGY: A First-in-Human Trial… Dr. Daniel Chung, Sparing Vision, is very interesting as it may address treatment or therapy for CORD-5. Very encouraging!!!
Without giving away all the details of my visit to Wills Eye Institute in Philadelphia, PA, in August 2024, I will say that some of what I learned in Philadelphia correlates with the information in this article.
More to come in a later post about the visit to Philadelphia.
I – Independent, Intelligent, Inspirational, Insightful
J – Joyful, Just, Jovial, Jubilant
K – Kind, Keen, Knightly
L – Loving, Legendary, Loyal, Lovely
M – Meticulous, Merry, Majestic, Marvelous
N – Nice, Noble, Novel, Notable
O – Organized, Optimistic, Original, Outstanding
P – Pleasant, Pretty, Patient, Positive
Q – Quick, Quotable, Queenly, Quality
R – Regal, Resolute, Righteous, Responsible
S – Sensitive, Smart, Stunning, Self-Confident
T – Trustworthy, Thoughtful, Talented, Thorough
U – Unique, Uplifting, Unmistakable, Unwavering
V – Vivacious, Valiant, Vibrant, Valuable
W – Wise, Wonderful, Worthy, Warm
X – eXcellent, eXciting, eXemplary, eXuberant
Y – Youthful, Yielding, Yesable
Z – Zany, Zippy, Zesty, Zealous
Just some positive words when you can’t think of any. Everyone needs to hear good things about themselves. Even if it’s really hard, you can always (yes, always) find something nice to say about others.
And if you need to hear good things about yourself… well, say these things to yourself… out loud. Verbalizing good things about yourself makes them easier to believe. (Experience speaking here, folks.)
Now, I’m not going to be “preachy,” but I do want to share a favorite Bible verse and a very valuable lesson I learned about love many years ago… Mark 12:31 – The second is this. ‘Love your neighbor as you love yourself.’ There is no commandment greater than these. (NIV) (For full context, read Mark 12:28-34.)
In a preacher’s lesson I heard many years ago about this verse (summarized here), he stated that this verse says to love your neighbor. Ok… yes… that seems easy enough. Then he went on to explain that you should love them… as you love yourself. Then he asked questions like… “Do you love yourself?” and “How much do you love yourself?” I also remember, very clearly, the preacher saying, “How can you love your neighbor if you do not first love yourself?” Wait… what?! Read that again. Hmmm…. This seemed somewhat counterintuitive to what I had always been taught, which was to think of others first. I had to roll this around in my noggin a while but realized I couldn’t argue with that logic. As a matter of fact, it is a commandment/directive straight from Jesus. To do one and not the other was to be only partially obedient; or, alternately, partially disobedient.
Why was this so hard for me to process and accept? Maybe because I was taught to think of others first, practice self-sacrifice, not to be self-centered, etc., and those are not bad things when done in proper fashion. Maybe because I didn’t understand or learn how to love myself. And then there’s also the fact that I am a “giver.” I often place more value on others, rather than myself.
I struggled with those questions for a long time. Longer than I care to admit. I didn’t feel worthy. I didn’t feel good enough. I didn’t feel smart enough. I didn’t feel pretty enough. I didn’t feel accepted… respected… lovable. I didn’t feel I deserved good things. I didn’t feel that loving myself was right because it could be seen as being self-centered. And, whatever other reasons I could find for whatever particular day it was.
This sermon topic was pivotal for me. I had to love myself first. Well… I didn’t think I had ever really thought about that. I didn’t know if I had ever really loved myself. I wasn’t even sure I knew how or what that meant. But, I finally had permission (actually, a command) to love myself. So, I had some new areas to explore and learn about.
Now, this may sound strange but I kind of had to learn this lesson backwards… As much as I loved my neighbor, I had to learn to love myself just as much. As much as I thought of others, I had to learn to think of myself just as much. As kind as I was to my neighbor, I had to learn to be that kind to myself. I had to learn to respect myself as much as I respected my neighbor. I had to learn to accept myself just as I am, just like I accepted my neighbor for who they were. Two hard ones here… I had to learn to forgive myself like I forgave my neighbor. And, I had to learn not to judge myself, just like I did not judge my neighbor.
Through the years, I had to unlearn many things and learn a lot of new things. Things like: I am worthy. I am valued. I am more than what others think of me. I am smart. I am a good person. I make mistakes. I am not perfect.
Today, I still struggle with this at times because those old thoughts still try to rear their ugly head. I still have days when I don’t feel that I am worthy, lovable, or enough. I still tend to value others more than myself. When those days come, I have to remind myself of the lessons I learned. Lessons like, it is not wrong to love myself, be kind to myself, forgive myself or accept myself just as I am. Some days I need to be gentle with myself. It is ok to say “no” when someone wants to take more than they should. Boundaries are good. It’s ok to not accept what others think of me. I am learning that I am valuable and I am enough. Period.
I can still follow some of what I was taught (think of others, don’t be self-centered, be kind, etc.) but I also know now that I am commanded by God to love myself. And this needs to be a healthy, balanced love; not a love of self above all others or above God. A love that is caring, nurturing, forgiving, accepting and understanding. A LOVE JUST LIKE I SHOW MY NEIGHBOR!
Please understand that I am not a counselor, therapist or preacher. I am just someone sharing a positive message and some things that helped me begin to learn to love myself. Hopefully it will help someone else too. I realize this is not going to be meaningful to everyone but, for the few who need to hear this, I hope you learn to love yourself.
PLEASE NOTE: If you are having thoughts of hurting yourself or someone else, please call 911 or go to you nearest emergency room. You can also call 988 to talk to a professional who can help you. There ARE people who care about you and want to help you!
Be kind to others. Be kind to yourself. A simple act of kindness may not make a difference in your world, but it may make a world of difference for someone else.
This year, I wanted to preserve some of the veggies we’ve grown in our little veggie patches. We don’t have a lot of room to have a large garden so we have a few little spaces around our home where we are growing tomatoes, cucumbers, a little bit of okra, yellow/summer squash, zucchini and some jalapeños. (I am also growing birdhouse gourds, but those will not be for food. I will post about those later when I paint them and turn them into pretty birdhouses.) Even with the few plants we grew, we’ve had quite an abundance of some of these veggies. Also, since we have such a small home right now, we don’t have a lot of room in the kitchen to do a lot of traditional canning, nor do we have much room to store a large number of jars. And, after some disastrous experiences in the past with losing LOTS of food (and time and money) in a couple of freezers that decided to go “kaput,” I wanted a more stable way to preserve our harvest since I really hate to waste good food. So, I decided to try dehydrating our harvested veggies, as well as a few that we’ve bought at the local farmer’s market. Finally, I have also read a number of articles online that report the nutrient retention value of dehydrated food is much higher than that of traditional (or commercial) canned veggies. This was another factor in my decision to try dehydrating this season.
This article will discuss how we initially became interested in dehydrating, the books I’m using as a guide, a little about our growing process for our veggies, the dehydrators and equipment I’m using and how I’m storing my dried foods. Along the way, I will share what I’ve learned and how this process has gone for us so far and what I may try next year.
Dehydrating, You Say?
Our interest in dehydrating food began about 2-3 years ago when we started making beef and chicken jerky for our own use. This partly stemmed from the fact that we liked jerky a lot but we couldn’t find any commercially made jerky that we liked very well or that I could eat with my digestive issues. At the time, I had a small home dehydrator I bought at the local super center, but it wasn’t really intended (or safe) for making meat jerky. I did use it to dry apples, some berries and to make some fruit leathers but nothing serious. We tried a little jerky with it but I was concerned about food safety and also really wanted to “up my game” with a better dehydrator that would safely make meat jerky and make it in greater quantity. I did some research online and found a Tribest Sedona Express dehydrator that had good reviews and ratings so I bought it.
Once the dehydrator arrived, we started making homemade jerky. It was SO much better than any store-bought jerky we had tried. From making small batches of jerky for personal use, we started sharing with friends and family who started requesting it and, of course, we were happy to oblige and our batches quickly started getting bigger. We stopped making chicken jerky because of the higher risk of contamination, but the beef jerky just kept getting better and better as we tweaked our recipes. Our friends and family started asking us to do large batches for them and they would pay us for the ingredients and making it for them. Within about 3-4 months, we were making jerky 4 days a week in 5 pound batches and averaging about 40-50 pounds of raw meat a week. We continued that process for a few more months and the demand kept growing. A few months later, we invested in two large commercial dehydrators (Commercial Dehydrators America) and 8-9 months in, we reached a point where we were processing about 80-100 pounds of beef a week for jerky. We were even approached by a few people asking us to make and sell it at markets and events. For better or for worse, it was turning into a full-time second job!
During that time, my husband retired from his “real” job and became a part-time jerky salesman. lol! I was still working full-time in a “real” job and making jerky in the evenings. It became quite an endeavor and adventure. After doing this about 12-14 months, we realized that it had grown into such a large process that we had some big decisions to make. We either needed to consider a separate place just for making jerky and making it a full-time venture and possibly hiring part-time help; or, we would need to scale back or stop all together. In considering all the factors at the time (our health, my vision, being unable to find reliable/willing help), we sadly decided to stop making jerky all together. So, with heavy hearts, we “liquidated” by selling our two large commercial dehydrators, some of our remaining ingredients and a few other items we had purchased along the way.
Initially, I was sad to see it go, but now I can say now that it has been kind of a relief to stop since my vision declined so rapidly over the last 2 years. I am also very happy to share that with the exception of a 16-foot enclosed trailer (which we were going to turn into a commercial kitchen) and a little bit we owed (to ourselves) on the large commercial dehydrators, the jerky pretty much paid for everything. We weren’t making a lot of clear profit, but we were returning all profit back to the business to grow it and everything was paid for as we went along. The only other exception was my initial investment in the first two Tribest Sedona Express dehydrators and our first little vacuum sealer which I had owned for a few years. So, all in all, I think we did pretty good… especially given that most new businesses do not make a significant profit within the first five years of existence. (At least that’s what I learned in some of my business classes in college.) We were not making a killing, but we were able to make it “float.”
After letting the jerky making go, I still wanted to dehydrate other foods. Because I had bought the first two dehydrators myself, I decided to keep them to possibly make jerky for ourselves again. Plus, I thought maybe I’d use them to dry some herbs, fruits and veggies. I wasn’t exactly sure how much I’d use them, but I knew I didn’t want to get rid of them just yet. (And, for those who are curious, we are now turning the 16-foot enclosed trailer into a camper! We’re going to haul that crate to different places and have a nice little place to lay our heads. lol!)
Some of you may be wondering just how much space dehydrating saves. Well, I can tell you that on one shelf (approx. 15″deep x 36″ wide x 18″ tall), I have stored: about 10 dozen ears of corn, about 2 1/2 bushels of green beans, about 1 bushel of squash, close to 2 bushels of cucumbers, and about a half bushel of tomatoes. There are a few random jars of jalapeños, zucchini and bell peppers. If I had traditionally canned all of these foods, I would have needed at least 3-4 times that space, not to mention most likely some freezer space as well.
This is everything I have dehydrated this summer, except maybe 3-4 jars we have eaten and given to family. Now, when you figure that 1 bushel of beans yields approximately 19-21 quart jars when canned traditionally, you can see how much space we have saved by dehydrating. *Please keep in mind, this shelf is in our storage room. Please excuse the binocular bag and dim lighting. Thank you!*
Disclosure… I do still freeze fresh meat. Dehydrating meat usually requires marinating and then drying. Even with the use of commercial curing salts and processes, it typically still doesn’t have as long of a shelf life as the veggies and fruit. Thus, I do not feel it is beneficial for us at this time to dehydrate our meat. I do hope to be able to start canning meat at home as it can be stored longer than dehydrated meat (depending on the process used). But, for now, I try to keep a decent supply of store bought canned meat (chicken, tuna, ham). This is something I need to look at a little more at some point in the future. It is my understanding that freeze-dried meats and food are about the most shelf-stable food available. In looking at some systems on the market, they are very expensive. Maybe at some point in the future, we might consider one of those systems but, for now, we’ll use what we have on hand. For those who may be wondering, “shelf stable” meats from the grocery store is packed with preservatives. Even though we have some put back and stored, I try to rotate my “inventory” to ensure we don’t let something go out of date. I don’t want to use a lot of preservatives personally so that is why I still buy canned meat at the store. Likely, the freeze-drying system would be beneficial here.
Confession… I did not dehydrate any okra this year. We only had 5 plants and they only produced a little okra at a time. I should have dehydrated what we harvested and kept them in small batches, but the book I’m using as a guide (listed below) only mentions using okra in soups or stews. I like okra in soups and stews, but my husband is not too fond of many different soups. So, until I figure out a way to use dehydrated okra for frying, I probably won’t dehydrate it much, if at all.
Books, Guides and Safe Food Preservation Information
When I bought my first two dehydrators, I found a book on Amazon that really looked interesting. It is “The Ultimate Dehydrator Cookbook: The Complete Guide to Drying Food, Plus 398 Recipes, Including Making Jerky, Fruit Leather & Just Add Water Meals.” While we did not use the recipes in this book for our jerky making adventure, I have used many of the instructions for drying veggies and fruits and found them to be excellent. I am not to the point of being able to make any of the meal recipes yet, but hopefully in a couple of years I’ll be able to get to that point. I hope to make some fruit leathers soon for some kiddos that I know and love. This book really does provide some great information on drying almost everything! And it has recipes to use the dried food for meals and snacks. It says there are only 2-3 foods that are not able to be dehydrated at home, one being avocados. I can’t remember the other ones, but with being able to dry everything else… I don’t think I’ll miss the 2-3 I can’t do at home. lol! Additionally, the authors of this book (Tammy Gangloff, Steven Gangloff and September Ferguson) also have a website Dehydrate2Store where they share more information and recipes about dehydrating foods for storage. Great resource! This has been my primary source for drying veggies and fruits.
A second book I’ve used a little bit is Country Canning Cookbook, by James R. Coffey, Carlisle Publishing, copyright 2009, third printing 2020. I found and purchased this book a couple years ago at Yoder’s Country Market, Bulls Gap TN, a local Amish store. (This little store is great for buying bulk items, fresh baked goods, fresh made deli sandwiches, various home goods, and so much more. Everything we’ve had from this store is delicious! If you live in or near East Tennessee, it is worth the trip!) This book has a lot of great recipes for canning foods with a little information about drying foods too. I really like the variety of recipes in this book, as well as the “old fashioned” feel of the recipes. A lot of these recipes put me in mind of how my grandparents might have preserved foods. It does have conventional measurements and instructions, but just has an “old timey” feel to it. (This book may prove beneficial for meat processing and canning.)
I’ve also looked through the Ball Blue Book of Preserving. This book has a great assortment of recipes for canning, freezing and a few for dehydrating. I haven’t used this book as much for dehydrating, but I have compared a few of the recipes in it to others. I have used it in the past for canning pickled jalapeños and dill pickles, as well as many other foods when I used to can foods traditionally. Ball Corp. is often considered a “gold standard” in canning and preserving, so it is a very reliable source for food preservation information. (Check out their website for some great information on preserving food and some really cute and easy crafts with jars. Christmas will be here before you know it!)
Another resource I’ve used quite often is the USDA Food Safety and Inspection Service website. This website is great for finding current food safety standards and guidelines, including dehydrating meat and other foods. I have not found a lot of “recipes” per se on this site, but it is good to compare the information I have found on other sites and know it is safe. The parent site for this website is also great to keep up to date on recent food recalls as well.
A word of caution: There are MANY sites on the internet that share recipes for making jerky, drying foods, preserving foods, etc. PLEASE use good judgment when visiting those sites to ensure you are not risking your health or the health of others through unsafe food handling and processing. If you are unsure about a recipe, process or procedure, you can always visit the USDA site, call your local/regional USDA office or contact your local Extension Office for guidance.
Finally, another of my favorite resources is UT Extension (a branch of the University of Tennessee). You can search the Publications page and find lots of great resources for a number of different topics. Some of these topics include nutrition, food safety, growing fruits and veggies, food preservation, and much, much more. While it doesn’t address dehydration directly, there are still some great resources for almost anyone. UT Extension also offers a variety of classes and programs for farmers, producers and home economists. One office in my area frequently offers bread making, jam making, canning, fermenting and cheese making classes and many others, as well as testing pressure canners for safety and accuracy. And, if you can’t find what you’re looking for on the Publications page, you can always reach out to your local county office. As a former employee of UT Extension, I can assure you that the information they provide is research and science based. (If you live outside of TN, you should be able to find an Extension office in your state that can provide you with relevant information there.)
While I do prefer to dehydrate to save space and to reduce food loss (the freezer dying trauma lives on), I do still can some foods. My husband really likes pickled jalapeños, some jellies and a few other "old time" favorites he grew up eating. I haven't made jellies/jams in a number of years, but hope to do so since I have a little more time on my hands nowadays. I hope to learn from his sister how to can green tomatoes. She made some delicious fried green tomatoes for us last winter and you would never have known they had been canned if she hadn't told us. They were amazing! Yes, I will share the recipe once I get my grubby little hands on it. lol!
How Does Our Garden Grow?
As I mentioned before, we have limited space where we currently live. For growing things, we have been using one space approximately 20-feet by 6-feet and another space that is approximately 20-feet by 3-feet (odd shaped). There is additional space outside but some of it is shaded and filled with pine tree roots, so it is not suitable for growing much except the birdhouse gourds. We also have a decent sized yard, but we can’t plow it for growing veggies. (Our landlord/landlady are great folks but we really don’t want to push the limits of their graciousness and kindness.) In the first space, we have been very successful this year with growing tomatoes, cucumbers, bell peppers and okra. In the second space, we have grown squash, zucchini and jalapeños. Mixed in with the veggies in the second space, we also have grown some wildflowers to attract pollinators and hummingbirds.
We have tried other ways of growing veggies in the past few years. The first year here, I tried straw bale gardening. I personally used large plastic storage bins with holes drilled in the bottom and sides, and put the straw bales inside them. The idea was to be able to move the plants in the bins as soon as we were able to find a home to purchase. (All I’m going to say about trying to buy a home is… gee thanks, COVID! ugh!) Aside from the storage bins, I followed the instructions from UT Extension. I planted tomatoes, bell peppers, jalapeños and cucumbers in the straw bales. They did magnificently!
The second year I reused the containers and the first years’ straw bales had broken down into a super rich compost! From a gardening standpoint, it was a beautiful sight to behold! lol! I added a few new straw bales on top of the previous years decomposed straw bales and planted green beans, squash, zucchini, tomatoes, bell peppers and jalapeños. They also did really well. I really liked the straw bale gardening and can see a ton of value in it but the plastic bin idea was not usable by the third year. So, we cleaned out the plastic bins and spread the compost out in the areas we are currently using.
I would like to note at this point that we are very fortunate to have a creek running behind our little home. The first two years we grew veggies, we carried buckets of water from the creek to keep our veggies from dying during the hot, dry summer months. The third year, my husband bought a small electric water pump to which we connected some water hoses and this made watering our plants so much easier. Without this water source, our veggie harvests would not have been as plentiful. Using the "paid for" water was not optimal (due to chlorine, etc.) or affordable.
I should mention that we have also grown our own plants from seed the last two years. We started with a little AeroGarden Harvest Elite I found on Amazon Outlet. I had seen these little countertop gardens and knew that hydroponic gardening can be an eco-friendly way to garden. So, I “indulged” and bought the returned garden system to play around with. Well, we had seeds start growing in less than 10 days! I started with the herb seed kit included with the garden, but my husband quickly decided we should grow some jalapeños and habaneros for our jerky recipes at the time. (We used a lot of peppers for two different flavors of jerky we made.). The pepper plants quickly outgrew the AeroGarden and we transplanted them to soil in some small containers until the threat of frost was passed. Then we started a few more seeds in the AeroGarden just to make sure we would have enough peppers to supply our need. By the time we got them outdoors, we had pepper plants over 2 feet tall! I kid you not! The next year we started with the AeroGarden and purchased two more grow lights and starter kits. We were amazed at how well everything did with the grow lights. We learned very quickly that grow lights were a huge factor in starting our own seeds and having a successful little garden.
Additionally, over the last few years, I have been trying to move towards a more “organic” style of gardening. While I am not completely organic gardening, I am trying to use less commercially produced fertilizers and more natural soil enrichers. I dry and break up egg shells, use coffee grounds, banana peels, vegetable and fruit peels and anything vegetable based to put in the growing areas to help enrich the soil with nutrients the plants will use. I also added “black cow” (processed manure) to the soil when rototilling at the first of the season. Similarly, during the season, I use additional organic based fertilizer to feed the plants. I typically add epsom salt in the soil to help prevent some forms of blight (especially around the tomatoes and cucumbers). I have used a little Miracle-Gro this year, but nothing compared to what we used in years past. I tried to find an organic Miracle-Gro, but wasn’t able to find it at our local farm store. I may look online next year for organic Miracle-Gro… if there is such a thing.
As far as pest control, in the past I used Sevin dust/spray, but wasn’t a big fan because of the potential for residual in the plants and produce. I usually plant marigolds near the house and around my veggies to help keep insects at bay, but that was only minimally successful. This year, I have tried neem oil. I read some articles about it and it seems to work well to eliminate fungus and most pests. A word of caution about neem oil… read the directions carefully. Using too much, a mixture that is too strong or on fragile plants can damage your plants. Follow the directions on the packaging. Neem oil is supposed to be safe even to the day of harvest and I’ve had good experiences with it. Next year, I may consider trying some of the dish soap, vinegar and water based recipes I’ve seen online and see how that works. I am also researching other methods of natural pest control so I may add other methods or recipes to my “arsenal” of pest control next year. lol!
At the end of each season, I typically like to let the plants die, cut them down and lay them back on the soil. This serves at least two purposes. First, it helps protect the soil somewhat from potential erosion during the winter. Second, the old plants break down and also return nutrients back into the soil. The winter season’s snow and freezing temperatures help break down the plants and makes them easy to turn into the soil in the spring. Some folks feel there will be a lot of volunteer plants come up in the spring from “leftover” seeds that land in the soil, but my experience has been that these seedlings can be turned under a few times and causes little or no trouble afterwards. Other folks prefer to have a winter cover crop of some sort. Their reasoning is that it prevents erosion and adds nutrients to the soil, similar to what I do. Some larger farmers also use cover crops to help with moisture control in the soil. But, for my small garden, this is not a huge issue.
Confession: I have never had a winter cover crop but would not be averse to doing this. I have given thought to trying it in the upcoming fall/winter season but will need to do more research on what types of grasses or plants to use for my region and purposes. I think I've read where some folks have used winter wheat and other winter hardy greens/beans but..... I will do more research on this in the upcoming weeks before winter. UT Extension publications, here I come!
Alternately, instead of cover crops, I am considering simply adding some straw and leaves (from the trees in our yard) to the areas at the end of the season to let them break down and enrich the soil. Interestingly enough, a person I used to know would collect grass clippings from a neighbor who had their lawn treated by a commercial company. This person would add the grass clippings to their garden and seemed to feel it made a huge difference in the produce results. I know the commercial companies use chemical fertilizer sprays for yards they treat, but it did increase the persons garden yield. A different person I once knew would collect chicken coop “clean out” from friends and spread that through their garden. The chicken coop “clean out” is very high in nitrogen and will definitely make your grass or garden verys green, but too much of a good thing can be harmful if not utilized properly.
Ultimately, increasing nitrogen, potassium, and other nutrients in your soil can help increase your yield but I highly recommend soil sample testing to determine your soil’s needs for optimal production. Sometimes some soils need lime to balance pH. Other times, soil needs more nitrogen. In my area, the UT Extension offices offer soil sample testing for a small fee. This is especially helpful if you are a larger farm producing cash crops. If you are a “home gardener,” you can do this occasionally, or as often as you like, to see the values of your soil. The report you receive generally tells you how much of what nutrients to add to your soil for specified crops, better fruit/nut production, greener lawns, etc., based on what garden/plant options you select on your submission sheet. Your Extension Agent/Office personnel can help you complete the form.
As you can see from my trials and experiences, as well as from many other websites online, there are numerous ways to garden. But, I can tell you this… there is not much that feels better than picking and eating a fresh cucumber or tomato from the vine of something you intentionally put in the dirt with the hope and anticipation of what was to come. Gardening is good in so many ways. You control what you grow. You literally “reap what you sow.” The feeling of soft, rich, fresh turned soil in your hands and under your feet is something I learned to appreciate as a child from my grandparents and parents, and I will always treasure those memories. I guess you can call it “dirt therapy,” “grounding,” “connecting with Mother Earth,” or whatever your thing is. Moreover, it is an incredible family activity that teaches children and youth about patience, commitment, the value of investing time and effort into a future return, and, last but certainly not least, how to provide for themselves. And, much like myself, the time you invest with your children and family is something they will remember and treasure as they get older. Whether it be a small indoor tomato or pepper plant, or a half-acre garden… give it a shot. You might find you have a green thumb you never knew you had.
Disclaimer: I know it seems like I may be shamelessly plugging UT Extension but, after having worked in a local office for a few years, I learned so much about the services and how they help the community in so many ways. I also learned that their services and information is research based and not just "hokey" made up ideas. As 'they' say... sorry, not sorry. Alternately, I do listen to the advice of some of the "old timers" as they have tons more experience than I do and they can tell you what has or has not worked for them. If you're looking for experience based advice, you should be able to find some "old timers" at the feed & garden stores in the early spring.
First small garden spot at the end of our house. Approximately 16-18 ft x 6 ft. In this garden, we have planted cucumbers, tomatoes, okra, and a bell pepper plant. In the upper right corner of the photo, you can see where the creek runs behind our home. This has been a God-send to help us keep our veggies watered during the dry, hot summer months.
This small area is home to the birdhouse gourds. It is part of the other area we used for planting. Unfortunately, I did not get a beginning photo of the squash and zucchini plants, nor the jalapeños, but they are at the other end of this small area where there is more sunlight.
Tomatoes, squash and cucumbers from our little areas. The tomatoes were a beefsteak variety and should have been much larger, but all that we harvested were about the size of a golf ball to about the size of a lemon. This harvest was typical of what we would harvest about 2-3 times a week.
A bushel of half runner green beans from the farmers market. While the corn and most of the beans came from the local farmer’s market, we did make sure they were grown locally. We learned that the beans and corn were grown within ten miles of our home.
Five dozen ears of corn in this bag. We processed just short of ten dozen ears of corn–two bags of corn. The variety of corn we bought was Peaches ‘n’ Cream. It has a very sweet and creamy taste and texture.
Equipment and Tools
As far as equipment, I now only use the two Tribest Sedona Express dehydrators, a manual mandolin/slicer, a couple of kitchen knives, cutting boards, baking sheets/parchment paper, a vacuum sealer, O2 packs, food grade silica “dry” packs and either mason jars or vacuum seal bags. Depending on the process, I may also use a speckled water-bath canner, a large stock pot and some random plastic bowls/tubs. In my kitchen, I have two stainless steel tables (leftover from the jerky venture) and an otherwise typical household kitchen. We had two 20-amp outlets installed to run the large commercial dehydrators (which we no longer have) and I use these to plug the dehydrators into since they can handle the electrical load.
As mentioned above, I use two Tribest Sedona Express 10-tray stainless steel tray dehydrators. Outside of the superstore shelf model plastic tray dehydrator and the large commercial dehydrators, this is the only other ones I’ve used. I really like it because of the triple mode settings, the option to use ambient air and the ability to adjust the timers to a specific number of hours or continuous run. The stainless steel trays are dishwasher safe and generally easy to clean. For wet items like tomatoes and fruit leathers, I place parchment paper, silicone or copper baking sheets on the trays. The dehydrators have plenty of room to do quite a bit of food. In both of my dehydrators, I was able to dehydrate just under 1 bushel of green beans and about 5 dozen ears of corn cut off the cob. So, that should give you a good idea of the capacity of these machines. The only down side to these dehydrators is that if you start pressing the Set/Light button, it may mess up your timers. I recommend either making a mental note, a note on a notepad or a sticky note on the machine recording the start time. This will help you remember when you actually started the drying process just in case you happen to be like me and start impatiently pushing buttons thinking that you might should have set the timer longer or you set it for too long or just because you like pushing buttons… lol! Some people like having a dehydrator that will do minutes or half hours. The large commercial dehydrators we had would allow you to set the time to the minute but I found this was not really a huge factor for what we have done.
This is one of the Tribest Sedona Express dehydrators with cut corn on copper baking sheets.
We bought the speckled water bath canner at Tractor Supply a month or so ago so I could blanch the corn. My regular stock pot wasn’t large enough to do the amount of corn I was processing. It is nice to have for those larger items like corn and pumpkins, among other things. (Alternately, they are also great for soaking tired, sore feet in a warm epsom salt soak. Of course, cleaning and sterilizing the pan afterwards is required.) You can find these or other large stock pots at various retailers or markets.
The manual mandolin/slicer is from The Pampered Chef. I used to sell Pampered Chef and have had it a long time. I use it quite often for slicing about everything since I can NOT slice anything evenly. I end up with a thick side and thin side. But, of course, if you put two together on opposite sides, they do make a fairly even slice. lol! I have used this to slice plenty of cucumbers, peppers, and squash. Alternatively, you may be able to use a food processor as well; I just haven’t found one that has all the features I need or want.
This is the Tribest Sedona Express with half runner green beans in it. This batch of beans was fairly tough and we had to shell a lot of the beans, but they’ll still eat in the cold winter months. You’ll also notice there are two trays with parchment paper on them to keep the shelled beans from falling through. I think I prefer the parchment paper to the copper baking sheets as far as how much quicker the food dried; but, using that much parchment paper could be a little costly. I also tried putting some of the shelled beans on the bottom tray and, although they dried just fine, I won’t do it that way again since the beans left spots on the tray that were slightly difficult to remove.
The other item I use a lot is a vacuum sealer. We have a FoodSaver Food Preservation system. Ours is an older model than what is linked, but essentially the same machine. I can advise that if you watch their site and sign up for their emails, you can usually find a really good deal. I know some folks like to use a chamber sealer system, but I am not familiar with these and the FoodSaver is just what we had and started with, so we will use it until it dies and then look for another sealer. With the FoodSaver, we received the jar sealer for regular mouth jars. I ordered the wide mouth jar sealer to have on had for some of the wide mouth jars I have, but we primarily use regular mouth jars since they take up less space. The other thing we have learned is to use the heavier bags. When the food is dehydrated, it can cause little pointy edges or tips. These are notorious for poking holes in the bags which can break the vacuum, allow air/moisture into the bag which will promote food spoilage.
The knives, cutting boards and plastic wrap/parchment paper/baking sheets are just general items I’ve purchased at the superstore or other markets. I have a variety of knives which includes a filet knife, a chef’s knife and a paring knife. (I typically sharpen our knives myself since I became pretty good at it when we were processing so much jerky. You can have your knives sharpened professionally, if you choose.) I do not reuse plastic wrap or parchment paper. They are not usually something that can be used repeatedly. The cutting boards I use are food grade polyethylene and bacteria resistant. The silicone and copper baking sheets are reusable and, after each use, I wash them in bleach dish water, rinse thoroughly and dry before storing them. A few things to mention here… First, keeping your knives sharp is imperative! Dull knives are more likely to cut you than a sharp knife. Second, dirty equipment and surfaces are likely to promote bacteria growth that can cause food-borne illnesses. Third, if in doubt, clean it. Fourth, wash, wash, wash your hands throughout the entire process. Fifth, gloves are also a good idea to prevent normal skin oils from contaminating foods and for cutting/processing hot peppers.
Important!!! Keep the tools, equipment and surfaces you are using clean and sanitized! There is nothing worse than to enjoy a seemingly healthy and delicious meal with food you've worked hard to preserve, only to be sick for a few days (or weeks) from salmonella, botulism, listeria, etc. I always use a little bit of bleach in my dish water to wipe my counters and surfaces, as well as to wash my hands and rinse with clear, clean water. Frequent cleaning and hand washing is a great way to stay healthy. This concludes our unsponsored public service announcement. Now back to your regularly scheduled show... lol!
Finally, food grade oxygen (O2) packs and silica “dry” packs are smart to add to your jars or bags to help extend the life of your preserved foods. We have found that these are readily available on Amazon at very reasonable prices. In regards to bags, it is recommended to use mylar bags to store your packaged food in to keep them from light exposure. Threats to the life of your preserved foods include light, air, moisture and heat. If you have not stored your food properly, it will not last the estimated 10 years. The book I mentioned above (The Ultimate Dehydrator Cookbook: The Complete Guide to Drying Food, Plus 398 Recipes, Including Making Jerky, Fruit Leather & Just Add Water Meals) provides great information about storing your preserved food in length and correlates or exceeds the USDA standards.
Corn before dehydrating. This pan only has about 8-9 EARS of cut corn.
The corn after dehydrating. This small tub contains about 4-5 DOZEN ears of corn.
Storing and Using Our Food
For us, I have decided to use mostly pint mason jars but occasionally a few half-pints and an occasional vacuum bag. I find they take up much less space than the quart jars we would normally use if we canned food traditionally. (See photos above.) They are also easy to stack if placed back in the cardboard trays in which they were originally purchased. Currently, we have a small room in our home that is now used for storage. We keep the blinds closed which eliminates most of the light in the room and the shelves are against an inside wall. (The inside walls stay at a more consistent temperature than outside walls. Outside walls are more susceptible to changes from heat, sunlight, cool/cold air and humidity.) As mentioned earlier, we have tried using standard vacuum bags but they often get holes in them from the pointy edges of the food. The heavier bags do better but jars just seem to be the most convenient for us. In the future, I may try to find a chamber sealer and use the mylar bags but we will use what we have for now. (You may think me cheap, but I call it frugal. lol!). Also, we are not at the point of processing food for “long term storage.” The small amount of food we have processed will only last us the next year or so. With that said, I am not too concerned about the life of our food stores spanning the estimated 10 years.
I do hope to continue dehydrating food in the future. It is with noting that the first book I mention above (Ultimate Dehydrating…) discusses buying frozen food and fresh produce from the grocery store when they go on sale. I have started watching some of our local store sales papers and may consider this option as well.
You may be wondering how we will use our food. Since most of our food is what I call “staples” (corn, beans, tomatoes, etc.), I will typically rehydrate the food with water and season to taste. I have already tried a jar of the green beans. I place them in a crock pot with a small piece of ham bone and they turned out delicious! I will not always use ham/pork bones, but will likely continue to cook them in the crock pot. If I am in a hurry, I will probably put them on the stove or rehydrate them in water and cook them in my pressure cooker. For the corn, I rehydrated it on the stove with a little water, then added some butter and salt. You could also add some cream, cream cheese or other items to it to your liking. As far as the tomatoes, I can see those being cooked into a sauce or soup… maybe some tomato basil soup… yummm!!!! With the squash, there is a recipe for squash casserole in the book that sounds delicious. I will be giving that a try at some point.
Conclusions
Overall, I am very pleased with the dehydrating process this year. It was a good year to try the process and get a feel for how it works. I did appreciate the fact that I feel like I spent less time dehydrating the veggies versus canning them. I have two pressure canners and one water bath canner. If I had canned the food traditionally, I feel like I would have spent more time with that process. My reasoning is because you typically have to stay at the stove watching the canners so they don’t go above or below the correct pressure. With the dehydrators, I feel like it was a “set it and forget it” process. I did go back about halfway through the dehydrating process to rotate my trays, but this only took a few minutes. I did not make note of the time I spent preparing the food because that would have been the same either way. I also did not note how much time it took to put the veggies on the trays but still feel it was minimal compared to the time it would have taken to put the food in jars for traditional canning.
So, that being said, this was not a “scientific” process this year. I am only stating my thoughts and feelings on this topic. In the future, I may start keeping notes on the time factor for prepping the food on the trays, etc., just to see if it is as time saving as I think. Once I start that, I will add another post with that information.
As far as any things I would do differently… I would for sure utilize the farmers market more! I will also take the advice of the author of the ultimate dehydrator book and buy frozen fruits and veggies when they are on sale to dehydrate. I will also do more research on the freeze drying processes and equipment, as well as chamber vacuum sealers and mylar bags. I have read where some people put their food in sealable 5-gallon buckets (some after being vacuum sealed, others just in the bucket). I may check that out as well.
Would I recommend this process? Absolutely!
For posterity’s sake, I will try to post updates or addendums to this information regarding how the food is after it’s been stored for some time, as well as any recommendations for rehydrating the food, recipes, etc.
Thanks for stopping by! I will try to keep up with comments and respond accordingly.
Take care!
Rebecca
P.S. I know this was supposed to be an August post, but we were out of town for a medical trip to Philadelphia, PA, and I have been a little under the weather the last few days. (Gotta love the East TN allergy seasons… NOT!). The trip to Philadelphia will likely be my next post, so be sure to come back for that one since it will have some really positive news regarding my CORD-5 prognosis!!! I hope to post soon about the pickled jalapeños I made recently. If you like jalapeños, you’ll like that post too. A little sweet heat going on with the pickled peppers.
P.S.S. After uploading this post, I checked it on the web and the layout looks very different than what I tried to do. A learning experience that I will work on and try to get it to look better. Remember, learning as I go. Thanks for your patience.
DISCLAIMER: This article is in no way intended to provide medical advice or treatment. I am not a physician, nor a medical professional of any sort. This information is provided solely based on my knowledge, research and understanding as a layperson and former assistant in an eye clinic approximately 30 years ago. The links to various creditable websites provide valid information but should be discussed with your personal medical professional to determine if it is relevant to your specific circumstances. The information provided is also based on my understanding of things as they have been explained to me by my past and present physicians. If you are experiencing any changes in your vision or are in need of medical attention, go to your nearest medical facility or call 911.
Introduction
I’ll try not to get too technical but I also want to share enough information to help you understand more about my vision disorder. So, bear with me and hopefully I can give you enough information to”see the big picture” with CORD-5. (Yes, all puns intended! lol!) I’ll begin this posting with a brief explanation of what “CORD-5” stands for, a short description of the anatomy of the eye, how CORD-5 impacts vision and a little information about the genetic research that has identified the specific gene causing this problem. I’ll wrap up with what this may mean in terms of treatment, therapy and prognosis.
What Does “CORD-5” Stand For?
Briefly, CORD-5 stands for COne Rod Dystrophy – type 5; over time, it has been shortened to CORD-5. It is a rare genetic disorder that causes vision loss and blindness. It affects the cones and rods, which are all located in the macula and retina in the back of the eye.
Brief Anatomy of the Eye
When we look at something (tv, book, trees, birds, people, clock, etc.), the image is received through the cornea, the pupil and lens, and is projected onto the retina. The retina then sends signals through the optic nerve to the brain and the brain interprets those signals as the image we are looking at. While this is a simple summation of how we see, the following two sections will give a little more detail on the parts of the eye and their basic functions.
If you would like more detailed information on the eye and how it works, the American Academy of Ophthalmology provides more details and some good visual illustrations on this page.
Anterior Section
The anterior (front) section of the eye consists of the cornea, iris, pupil, lens and the angles. (Not angels… The little angels are who you see when the grands come to visit. lol!).
The cornea is the clear front part of the eye. It protects the eye from foreign objects, dust, etc., and it also affects the focus of the images we see. The shape of the cornea is one factor in how well we see. If a cornea is misshapen, it can cause astigmatism. The iris (the colored part of the eye) dilates or contracts to adjust how much light passes through the pupil (the black center of the iris) to the back of the eye. In low light settings, the iris dilates to let more light in; in brightly lit settings, it contracts to reduce the amount of light coming into the eye. (During an eye exam, a physician may dilate your eyes with drops to keep the iris open. This helps them assess the health of the back of your eyes.) The two sections of the eye are seemingly separated by the lens, but the lens is still considered part of the anterior section. The lens also helps with the focus of the image we see. The angles control the pressure of the eye. If the pressure is too low or too high, it can damage the optic nerve and cause vision loss. This is known as glaucoma.
Keep in mind that, due to various factors, not all eyes are “created equal.” Between the cornea, the lens, the natural shape of the eye and other factors, some of these may not work or be formed properly which causes us to need glasses, contacts or other type of eyewear to see well. Sometimes, a person may even require surgery to correct the vision or eye problem (cataract, Lasik, glaucoma, etc.).
Posterior Section
The posterior (back) section of the eye includes the vitreous, the retina, the macula and the optic nerve, among other parts which are not relevant to this topic. Again, this is a very brief description of the eye anatomy.
Interesting fact: The optic nerve creates a blind spot in our vision. Yep! Sure does. This is because the optic nerve has no photoreceptors. But, because of the amazing ability of our brain to adapt, we just don't notice it. Also, it is not the central part of the back of the eye; it is slightly off-center. So, if you were to have a visual field test performed, everyone of us would have a small circular area, slightly off center towards the temples where we see nothing at all.
The posterior section is filled with a “jelly like” substance called vitreous. While it is normally clear, sometimes (due to age, trauma or other issues) it can develop “floaters,” “shadows” or “gnats” created by a change in the consistency of the vitreous. Generally, floaters are nothing more than a nuisance; although, there are times when floaters are caused by blood in the eye from a retinal tear or other disease. Any disturbance or change in your vision, flashing lights, vision loss, bleeding in the eye, retinal tear or detachment (like a veil covering part of your vision) requires immediate medical attention. Contact your medical or vision provider immediately.
The retina is the lining of the back of the eye. It is a vascular tissue which facilitates blood circulation to the eye, contains cones and rods, is home to the macula and is the connective tissue to the optic nerve. Keep in mind that there are a number of diseases and disorders that can affect your vision. If you notice any vision changes, contact your vision professional immediately. It could be a sign of a significant problem which, if left untreated, can cause permanent vision loss.
While I’m not exactly sure, I’m guessing the retina probably contains millions of cones and rods. The cones detect color, while the rods detect the amount of light. The cones and rods send signals (neural impulses) through retina to the optic nerve which travel to the brain. The brain then interprets the signals as the image we see. If someone is color blind, the cones either do not send appropriate signals to the brain or they are unable to perceive the colors correctly. When someone is light sensitive or has trouble seeing at night, the rods are not working properly or are not sending appropriate signals to the brain. In both cases, the brain is not able to interpret the signals correctly, thereby creating an inaccurate or flawed perception of what they are looking at.
Roughly in the center of the retina lies the macula. The macula also contains cones and rods, but is responsible for our fine, central vision (our straight-ahead vision) as well. For example, if you look straight ahead at a clock on the wall, you will see the clock on the wall. Peripheral vision is our “side vision.” This is what is seen outside our central “straight-ahead” vision. An example might be if you’re at the park and a ball comes soaring in your direction, you will hopefully see it in your peripheral (side) vision before it comes into your central vision and bonks you in the face… especially if no one yells, “heads up!”, “look out!” or “duck!” lol! Most people are familiar with the eye disease macular degeneration and, most of the time, this is an age-related issue. As we get older, our bodies tend to naturally deteriorate; this includes the eye. And, as the name states, the macula degenerates (deteriorates) and the central vision is affected or lost. While there is new medical research and treatment for some types of macular degeneration, it may not treat all forms of it. This is something a qualified vision provider can determine for you.
Finally, there is the optic nerve. As mentioned earlier, the optic nerve connects the eye to the brain via the central nervous system. While the optic nerve has no photoreceptors and can not send signals of images, it is an integral part of our vision. It can become damaged or diseased, which ultimately will affect our vision. While it was previously thought to be irreparable, new technology and science is finding that there may in fact be treatment for damaged optic nerves. Check out this article from Johns Hopkins about optic nerve repair.
Effects of CORD-5
As you may have gleaned from my previous post, “My CORD-5 Journey,” CORD-5 is a genetic disorder affecting the cones and rods in the retina and macula. To recap that post, CORD-5 did not start becoming evident for me until my mid-twenties and it was mild at that time. For several more years I did not have any other significant issues except increasing light sensitivity and slightly decreased visual acuity. In my late thirties to mid-forties, I began to have more significant issues with my visual acuity, color blindness and some mild, but noticeable, central vision loss. Now, in my fifties, I am legally blind with “significant central vision loss,” “significantly impaired visual acuity,” and impaired color vision.
For some people with CORD-5, their vision is only mildly impacted. For others, they are affected much more significantly. Some are affected at a younger age (my dad was legally blind at 27 years old) while others are not affected until later in life. So, the predictability factor of the effects and timeframe for CORD-5 is very random. Some of this may be due to the nature of CORD-5 and, at this point, likely becomes more technical and delves deeper into the science of genetics, but I am not an expert, amateur or even a beginner geneticist so I will not attempt to dissect that in any way, shape or form. lol!
But, these things are true of CORD-5:
it affects the cones and rods;
it affects the macula and central vision;
it affects visual acuity;
it is unpredictable in the degree and timeframe of manifestation.
Genetic Research and GUCY2D… huh?
In the mid 1990’s, my family came into contact with Dr. Kent Small. (Dr. Small is still in practice at the Dr. Kent W. Small Macula & Retina Institute.) Dr. Small is an ophthalmologist who was involved in genetic research with our family and another family with CORD-5.
I believe my first encounter with Dr. Small was fairly basic with him taking a blood sample and performing a basic, rudimentary vision evaluation. After that visit, Dr. Small had some of the family members (including myself) travel to Charleston, SC, to have more extensive testing performed. I do not recall the name of this facility where we had the testing and I’m not sure how many of my family members went, but there were several of us. One of the tests performed was an ERG (electroretinogram). I remember this test specifically because, although not “painful,” it was uncomfortable due to the “wired contacts” placed over the eye, the electrodes attached on my head and the bright, flashing lights. This test was used to evaluate the retinal signals and activity. Another test that was performed was a color vision screening test. For this test, they presented us with several trays containing plastic “caps” with different colors on the caps. We were to put the caps in order by color. Funny story about the color vision test… One of my family members completed that test first and, after I completed mine, I asked her if she knew how she did on that test. She said she did pretty good because she figured out that there were numbers on the bottom of the caps to put them in order. Whoa… Wha???!!! OMG!!! SMH!!! I had no idea about that and, yes, I did VERY poorly on that test. lol!
The next encounter with Dr. Small was maybe a couple years later with a trip to UCLA Jules Stein Eye Institute for more testing. I believe the testing lasted 1 1/2 days and, for the remainder of the trip, we were able to rest and do a little sightseeing. We took a short trip to see some celebrity homes and then went to the Coast. (Yes, I actually waded in the Pacific Ocean! Woohoo!! I don’t remember much about the celebrity homes though because I was in the back seat of the van trying not to get car sick! lol!) Some of the testing was the same as what we did in Charleston, SC, possibly to confirm the previous results and to determine if there had been any progression of the CORD-5.
From the testing Dr. Small did on our family and another family, he and his colleagues were able to identify the gene that presents the CORD-5 anomaly. The gene is identified as GUCY2D. (Apparently some pronounce it “gucky 2D” while others pronounce it “Gucci 2D.”) To the best of my memory, as Dr. Small explained it to me, this is an autosomal dominant gene. And, if I understood correctly, a dominant gene can/will manifest even if there is only the one gene present, from either parent; alternately, a recessive gene will not manifest unless two genes are present, one gene from each parent. Additionally, it is my understanding that if this gene “skips” a generation or individual, then it will no longer be present in that bloodline for future generations. An example of this is my great aunt. Her two brothers both had the gene but she did not. None of her children have the gene or the vision problem. Yet, her brothers and their children and some of the grandchildren have the gene and the vision problem.
Here are links to the two reports Dr. Small and his colleagues collaborated on and presented regarding the CORD-5 research. 1) Identification of GUCY2D ; 2) Clinical Study of a Large Family These reports present the lineage of the two families studied and the presence or absence of the gene in participants, as well as the manifestation of CORD-5 in the participants.
Here are some links to a couple of other sources with information on various cone-rod dystrophies, CORD-5 and CORD-6… 1) University of Arizona; 2) OMIM-CORD5; 3) OMIM-CORD6
One interesting fact that I have learned from Dr. Small’s reports, and from the information on the other sites, is that CORD-5 and CORD-6 are actually the same genetic disorder. This was noted in the first of Dr. Small’s reports linked above. One of the websites does report that CORD-5 is on chromosome 17q13 while the other one for CORD-6 reports it on chromosome 17p13. I am not sure if this is a “typographical” error or if it is an actual genetic/chromosomal difference but, essentially, all of the resources report CORD-5 and CORD-6 as the same disorder.
What now?
As mentioned previously, I am now legally blind. It does take me longer to do most things, whereas someone with good vision can do them much more quickly. As difficult as it can be to accept, I know that this vision issue has the potential to continue to worsen as I get older. I do not anticipate becoming totally blind, but I am trying to prepare (as much as I possibly can) for a “worst case scenario” in the event it does get to that point. (I was briefly a Boy Scout mom and am the daughter of a U.S. Marine… be prepared.)
Accommodations are the name of the game now. I use visual aids and assistive technology, including magnifiers, computer glasses, a CCTV (closed circuit tv), filters (sunglasses) and tinted glasses lenses. With the progression of technology, I am able to adjust the settings on my computer to an “inverted” high contrast setting where there is a black background with white font, as well as an enlarged display setting. I have not yet become comfortable with “reading” software, but may further explore that option in the future. I prefer digital material to printed material, mostly because I can enlarge the font/text size and invert the colors on my tablet and laptop. I have recently acquired a white cane and am learning to use it when I go places I’m not familiar. (It is also a great visual cue to others that I am blind/visually impaired and may need assistance.). I am learning to utilize public transportation services and will hopefully become more adept at that soon. I rely on my husband, family and friends to guide me in unfamiliar locations… And, along with that, I am learning to laugh at myself more when I miss a step or stumble over a sidewalk/curb I don’t see. Fingers crossed I don’t break a leg or my neck when this happens. lol! Sometimes it’s also laughing at myself for dressing funny… or getting one thing when I think I’m getting something else… or thinking a piece of lint on the floor is a bug and I squeal… lol! An embarrassed ego heals pretty quickly with some good-hearted laughter. lol!
Next, I have an appointment in August (2024) to visit Wills Eye Hospital in Philadelphia, PA, for an evaluation and genetic counseling. It is my understanding that this appointment will help determine if I am a candidate for additional genetic research or even possibly genetic therapy/treatment/trials, if there is anything currently available. For me, this trip would be more for curiosity’s sake but there is also a little glimmer of hope that maybe there is research which will provide a “cure” or treatment in the near future. While I can accept that my vision may not be “curable,” honestly, I just pray that there may be genetic therapy that can prevent my children (and other children in my family) from developing the significant vision problems from CORD-5. (Or, better yet, eliminate this genetic disorder from the family completely!) I will try to post an update below after my visit.
While the transition from working and being independent to being “disabled” and dependent has been VERY difficult, it is an adjustment I must make. This condition can not win. Instead of considering myself “disabled,” I am learning to consider myself “differently-abled.” I CAN still do most things I like to do; I just have to do them differently. I absolutely CAN NOT use it as an excuse to stop living my life. I can not let it define or defeat me. I must let it drive me to become more creative in how I do things, to look for new opportunities, to learn to ask for and accept help, to explore and embrace new systems and supports, to advocate for myself and others and to become more resilient in the tides of adversity. I have determined that “growing pains” are to be expected in life and if you stop having “growing pains,” you have stopped living. This doesn’t mean that it will be easy, it just means I will keep getting up when I fall down… every time! Regardless of how long it takes, I WILL get back up. (Yes, this is positive self-talk for myself just as much as it is to encourage others.)
No obstacle is an excuse to stop; it is a reason to grow, to become more resourceful, to challenge yourself and the status quo, to become more flexible, and to become stronger today than you were yesterday.
As you read, please keep in mind that this information is only about how CORD-5 has affected my vision and life personally. Each individual with CORD-5 may have different experiences. It is still unknown why, how or to what extent CORD-5 will progress in each person, but the gene has been identified and research is continuing to try to find a treatment or therapy to eliminate the condition. More to come on the research and therapies in a later post.
The early years
As I have been told, I began wearing glasses at age 14-months old. According to my parents, they noticed I was not seeing or recognizing things (toys, objects, people across the room, etc.) very well and that I was walking into things. So, they took me to the local eye doctor and it was determined that my vision problem was because of astigmatism. Thus, at 14-months old, I was prescribed and fitted for my first pair of glasses. (My parents still have my first pair of glasses and they are tiny and cute, if I do say so myself. Hoping to snap a pic of them to post soon. lol!) You’re probably wondering how my parents kept the glasses on me at 14 m/o. I asked them the same question. Their response was that once I realized I could see things more clearly, I didn’t fuss about them and wore them fairly well.
I did not understand as a child that I may or may not have the CORD-5 vision issue, what it was or what it would mean for me. I just knew that I had pretty much always worn glasses. I didn’t know anything different than life with glasses. Both of my parents wore glasses, so it just seemed like a part of life in general. I knew my dad was “legally blind,” (not totally blind) but only because I had heard my parents and family talk about it. Again, as a child, I didn’t understand exactly what that meant either except that there were things dad couldn’t see very well, and that mom went to work while dad stayed home with me and my sister. Dad still did things around the house and occasionally would help family, neighbors and friends with odd jobs but, when I and my sister were young, dad was home most of the time. (Maybe my dad was the original “Mr. Mom.” Sorry, Michael Keaton, my dad beat you to the punch. lol!)
As I was growing up, I did recognize that I was a little light sensitive. Being outdoors in the sun seemed to make it harder for me to see with my regular glasses. I tried clip-on sunglasses of various sorts but, on smaller glasses for children, they didn’t fit well at all. I recall that I found it much more comfortable to have glasses which would automatically darken when I was in the sunlight, once they were available in my area, that is… probably in my early “tweens.” I believe I was in middle school at the time, 6th or 7th grade. At that time, the auto-darkening glasses did not perform as well as the ones available today and they were heavy. I believe they were mostly made of glass rather than lighter weight plastic and, with the amount of astigmatism, my glasses were already a little heavy anyway. I wore them just the same since it was the best option available at the time. Here’s a site that gives information about the invention of “photochromic” lenses. Fortunately, I did not notice any other significant vision issues related to CORD-5 until I was much older.
Teenage and young adult years
Through my youth and teenage years, I would visit the eye doctor each year to check my vision and see if I needed new glasses. Sometimes I needed new glasses because my prescription would change; other times I would need new glasses because I may have been a little rough with them at times. (Oops! lol!) Or, sometimes I would get new glasses because the fashion or style had changed. Glasses were almost as much a part of my life as breathing. As long as I could remember, I had always worn glasses. I couldn’t see more than a few feet in front of my face without them. They were the first thing I put on in the morning and the last thing I took off at night. Ultimately, that would be the story for the rest of my life.
Sometimes it was hard growing up wearing glasses. I did experience the full extent of teasing and being made fun of by some of the other students. I was also teased because of having red hair. At that time (mid-1970s to 1980s), red hair wasn’t as “cool” or “desirable” as it is today. There were even a few times when I was teased and made fun of (in class) by a couple of my teachers. (Yes, I still know who they are/were. I have forgiven them and hope they have learned better of it as they have grown older.) Sometimes it seemed like a double-whammy… glasses and red hair. But these were just some of the growing pains I went through growing up. I suppose it isn’t really that much different than what other people go through growing up when they have differences from society’s view of “normal.” (More could be said on this, but not is this post. Likely a later post will talk more about this.)
I did struggle with athletics and sports. With the high astigmatism and wearing glasses, playing sports was something I was not very good at. Some of this was because of the concern of getting hit by a ball (or a misguided hand, or foot, or whatever other objects… lol!) and breaking my glasses. Also, when I played and started to sweat, the glasses kept wanting to fall off my face. They actually did a few times and, fortunately, they did not get broken or damaged. And, on top of all that, outdoor sports, as you can probably guess by now, were even harder because of the bright sun and glare. One of the other issues that I had, but didn’t understand at the time, was the difficulty with depth perception. Being able to determine just how far away the ball (or frisbee or other objects) was from me, definitely created another level of concern. (I don’t believe depth perception is a factor of CORD-5, but I have struggled with this to some degree for most of my life. It is most likely caused by the high astigmatism.) So, sometimes I wonder if I would have been more excited about sports or athletics if I had not had to wear glasses. Sometimes I think ‘yes’; but I also think ‘no’ sometimes because I was also starting to notice boys. lol!
Now, some folks may be saying that there are a lot of kids who wear glasses and play sports, and they would be right. But, please understand that each child is different and each vision issue is different. This is just what I experienced. And, at that time, with the circumstances, the resources available to my parents, as well as the resources available (or not available) in my region, this was the best that was available for me. Alternately, keep in mind that my mom worked and was the only driver for my family. Occasionally, my grandparents would drive us places but, most of the time, if we went anywhere while mom was working, we rode bikes or walked. So, yes, some of this does, in fact, have a multi-generational impact physically, emotionally and socially. We didn’t live “the life of Riley,” but we also didn’t live a life of poverty, destitution or desperation either. Aside from all of this, and most importantly, my parents provided a good home for us and we knew we were loved and cared for by our parents, grandparents and other family members and friends.
Twenties
It wasn’t until my mid-20’s that I began to notice some issues with my color vision. It is somewhat comical how I learned of this problem. My supervisor at the time handed me a report and asked me to work on the items that were highlighted. For the moment, I laid the report aside. The next morning, I picked up the report and looked over it but didn’t see any items highlighted. I kind of chuckled to myself and thought she was joking with me by giving me a report with nothing to research and correct. I took the report back and told her that I really liked reports like that and would love to have more of them. She looked at me quite perplexed and asked if I had completed the report already. I replied that I didn’t see any items highlighted and thought she was just joking with me. For an instant, I think she thought I was joking with her. But, very quickly, we both sort of came to the same conclusion… I couldn’t see the yellow highlighter she used on the report. After talking a few more minutes about this and how we could work around it, she took the several page report, made marks beside the items that needed to be completed and gave it back to me. Ugh! There were about 20-25 items per page. Yes, my heart sank when I realized I only had three days to complete the multi-page report with numerous items on each page. At that time, I just chalked it up to possibly being something that other people maybe had difficulty seeing as well and went on back to my desk and worked on the report. And, yes, when I turned in the completed report, I told my supervisor that I changed my mind and I did NOT like reports like that and did NOT want any more of them. We both laughed about it and went on with our work. Looking back, I see how that was a small, but monumental, introduction to CORD-5 for me.
Thirties
Through most of my thirties, I noticed I was becoming more light sensitive, especially when driving in the daytime. I just thought it was “normal” and would peruse the sunglasses display at the local pharmacy or discount stores. I also knew that my vision wasn’t as good as it had been when I was younger, but I was still good to drive, work and carry on with my life. During these years, I tried contact lenses but didn’t have much success with them because of the high level of astigmatism. Most contacts at that time didn’t work very well with high astigmatism unless they were hard or “gas permeable” contacts. Anyone from that time can tell you that those contacts were not very comfortable to wear, so I struggled with them for a short time but finally decided I’d just stay with my glasses. (Toric contact lenses {soft contact lenses for astigmatism} became available a little later on, but I had already lost interest in wearing contacts by that time.)
For most of my thirties (and for most of my life), I worked with computers daily. Fortunately, at this time, I began working with TN Vocational Rehabilitation, so I had access to resources and amazing people who would help me on the job. While with Vocational Rehabilitation, I would jokingly tell them, “I work for the agency now, but I’ll be back as a client in the future.” It was a way to “laugh off” the inevitable fate of CORD-5, but it was also a way of accepting it as well. It was something I knew I had. I just didn’t know how bad it would get. I also knew that I couldn’t change any of it. So, I chose to laugh about it most of the time.
Some of the people I worked with in Vocational Rehabilitation helped me learn to adjust my computer display settings. I found I definitely preferred high contrast (white text, black background) and a larger display setting. This helped tremendously! During this timeframe as well, I also had to have a few pairs of new glasses due to my changing and decreasing visual acuity. Fortunately, I was still ok to drive and do most other daily activities without any significant problems.
Forties
In my early to mid-forties, I really began to notice more than the usual “age related” changes (bifocals, that is). Because of CORD-5, the glare had started getting much worse and it was now affecting more of my daily activities and work. I also became more aware of my visual acuity declining. Additionally, some of the visual field exams had started detecting mild central vision loss. All of these are textbook characteristics of CORD-5.
My vision finally reached a point where I had to wear sunglasses over my prescription glasses (which were also tinted), especially while driving during the daytime. I had also begun to notice that the sunglasses helped me read printed documents at work more easily too. I tried to be discreet about wearing the sunglasses while reading and working. Why? Some of it had to do with what others would think and how it would look. Yes, Corey Hart’s song, “Sunglasses at Night” was a hit song, but I didn’t want to be wearing them at work…. inside… I just didn’t think my vision was that bad yet. I wasn’t quite ready to face the “legally blind” thing yet. It was (and still is) a hard pill to swallow. I just wasn’t ready for it yet. And, the eye doctor I saw at the time, generally agreed with me too.
The eye doctor I saw at that time had a great assistant who intuitively suggested I get tinted lenses since I was already wearing sunglasses for more than just driving. I already knew that other family members had benefitted from a red-orange/amber tint and we tried that. After a little tweaking, we finally got the right shade and I had lightly tinted red-orange lenses made. These were so helpful in my job, for driving and at home. It reduced the glare enough that I could see to do most things much more easily at work and home. And, as the optical assistant mentioned, they sort of matched my hair. lol! My employers during that time were very good about my need for the tinted glasses and sometimes even wearing sunglasses at my desk and indoors.
Finally, in my early mid-forties, my visual acuity had gotten to the point that I would not be able to pass a vision screening through the State’s driver’s services office. My eye doctor at this time told me this and I broke down. Yep, a very upsetting visit and conversation.
At that time, I was no longer working for Vocational Rehabilitation but knew I could call them and get help and I did. (My prophecy of being a VR client in the future was fulfilled. lol!) They opened a case for me as a client and referred me to a low vision specialist for evaluation. Through the low vision specialist, I was able to get bioptic glasses for driving. The bioptic glasses were very expensive and I was very thankful that Vocational Rehabilitation was able to purchase them for me. With the bioptic glasses, I was able to continue to drive myself to work, kids to school, to the grocery store and other places. Each year, I had to go back to the low vision specialist for re-certification with the bioptic lenses, which was submitted to the State’s driver’s services. It was a small but tolerable “bump in the road” to be able to continue to drive. The low vision specialist was also able to order a pair of fit-over sunglasses that I could wear with my regular glasses; and, he had a couple of pairs of sunglasses (filters) specially made to fit the bioptic glasses as well.
LateForties
In my late forties, I decided to finish my college degree (about thirty years in the making). Because I worked full-time, I opted for online classes, which actually proved to be an excellent option. Just as the first semester began, I contacted the school’s disability services office to get approval for accommodations. For me, accommodations were fairly simple… electronic materials (books, handouts, tests, etc.) and, as necessary, additional time for tests/exams. I transferred schools during my program and was given the same accommodations at that school as well. Most of my instructors were very happy to comply with the accommodations. However, there was one instructor (the only one) who was initially not willing to give the extra time on exams. I tried to communicate with him directly with no success. I reached out to the disability services office and my advisor, who in turn reached out to the dean. Eventually, the instructor begrudgingly granted the request, although he did make it known (in a very matter-of-fact manner) in one of his next video lectures that he did not give extra time on exams because of the potential for students to cheat. In so many words, he stated he wanted to maintain the school’s and department’s integrity so they would not lose their accreditation. Needless to say, I survived that class and semester only to find out that I had to take a “part 2” class with the SAME instructor! OMG! There always has to be one, right?! I just happened to be required to have him twice. lol! And, for the record, he remembered me and was still not pleased with the accommodations. Ultimately, I passed both classes and we both moved on, no worse for wear. lol!
During the time it took to complete my degree, my vision seemed to be doing ok, or at least I thought so. Ultimately, I was having more issues with my neck, shoulders and back, as well as worsening TMJ disorder, which meant more visits to my chiropractor and my primary care. These issues were worsening because I was having to strain more to see while doing so much more reading and writing. I would catch myself leaning over my keyboard to get closer to the the laptop screen so I could see it. (Not an ergonomically correct position AT ALL! lol!) Looking back, I realize now that much of this was (once again) me avoiding the obvious and not wanting to quit work or accept the roles of “disabled” or “legally blind.”
Along with that, I had to increase my screen display until it was no longer compatible with some of the software I used for work and school. With the help of Vocational Rehabilitation and a referral to an assistive technology group, I learned I could connect my laptop to a larger screen. This was an incredible accommodation that I was able to use for work and school. At home, I connected my laptop to a 32″ TV using a HDMI cable. At work, my employer bought new computers for the department and they were able to procure a 32″ monitor for my computer. Sometimes this still didn’t work with the apps and software I had to use, so my physical complications continued to be an issue.
I had also been able to get a pair of prescription “computer” glasses from the low vision specialist to wear just for working at the computer; they were also tinted dark red-orange. I wore these glasses most of the time since they helped with tasks I was doing close up. I wore my “regular” distance glasses for most other activities. I was still driving with the bioptic glasses and life was a little different but still do-able.
Fifties
In the last semester of my degree program (and also when I turned 50 years old), I was required to do an internship in an attorney’s office. This internship required me to do a LOT of reading and reviewing medical records, as well as filing and working in a legal database program. (The legal database program was NOT accessibility friendly! I contacted both tech support with the law firm and the software company with no success.). Because of this, and given the fact that I couldn’t use my phone magnifier app all day to review records, Vocational Rehabilitation purchased a CCTV for me to use in my internship (and future career). I was able to set up the CCTV with a 32″ tv screen to review the medical records, case files, and even to see the work computer screen when I had to use the legal database.
BUT… there was still one other issue that came back to haunt me during my internship… the yellow highlighters. Yep! On legal documents, it is ok (most of the time) to use yellow highlighter since it will not come through on a scan or copy of the original document. SMH! What was I going to do? I talked with the practice’s managing attorney, Vocational Rehabilitation counselor, the person who helped me set up my CCTV, the assistive technology group and others to try to find a satisfactory solution. Well… one evening while I was talking about it with my husband, he had an ingenious idea. He grabbed a highlighter and wrote on a piece of paper. He asked if I could see what was on it and I told him no. He went to the spare room and took something out of his fishing tackle box… yes, you read that right…. his tackle box. He shined a light on the page and… holy moly! I could read what he wrote! I could see the yellow highlight! It glowed just like a radioactive fish with two heads from the river below the chemical company! (Local joke, folks!) He had pulled a blacklight pen light from his toolbox! He said he used it for night fishing with fluorescent fishing line. Can you guess what happened next? Yep… we immediately ordered a new penlight for his tackle box because I confiscated that one for my internship! lol! The next day, I reported this new “accommodation” to all the people I had talked to about it and they ALL made notes to share with other clients who had been struggling with the same issue. (Moral of this story: accommodations and assistive technology can come in all shapes and sizes, and can be pretty much anything that works!)
Soon afterwards, I graduated (with honors) with a BS in Business Administration and a minor in Legal Studies. Next, I had to find a job. I sent out resumes to several places and about a month later got a call for an interview and was hired. I started the job about a week later. I began learning the job (and there was a lot to learn!). There was a short period in the beginning where I had to figure out their system and how to make it work with my vision needs. This job also entailed a lot of paperwork, data entry, filing and reviewing documents. Initially, my supervisor had some concerns about me using a CCTV for work because of the nature of the work, confidentiality issues, etc. For about five or six weeks, I was not able to use the CCTV which was very difficult and strenuous. I finally talked with her about my needs and accommodations and she agreed that we would give it a try. After she saw how much more efficient and effective it made me in my job, she was very happy to let me have it for work.
After about a year in this job (about 51 y/o), I had to stop driving. Although I was still “legal” to drive, according to my low vision specialist and the State driver’s services requirements, I had begun to have more difficulty with glare, central vision loss and distance vision. At this point, there were no other sunglasses, filters or tint that they could add to my bioptic glasses. No changes in prescription lenses would correct my distance vision. CORD-5 is something they cannot fix at this time. There is no surgery to fix this. There are no vitamins or supplements to fix this. There are no genetic therapies for this type of CORD-5. No anything. My vision was at the point that I was no longer able to drive safely after dark, in the rain or during the brighter parts of the day. So, for the safety of myself, other drivers and pedestrians, I stopped driving. Yet another milestone and life changing decision due to CORD-5. (I should mention here that the type of CORD-5 in my family is an autosomal dominant gene. There are genetic therapies being studied for CORD-5 from the autosomal recessive gene. More on the genetic research for my family in a later post. Until then, you can find some info here and here.)
I continued to work for another two years. My husband took me to work and picked me up each day. He was great because he never complained about having to do this for me. My final visit with my low vision specialist (Fall 2023) resulted in him certifying me “one last time,” with the bioptic lenses, but with me letting him know that I was not “safe” to drive and I would not pursue my bioptic certification in the future. He stated that he would most likely not be able to certify me again for driving either. So, it was a mutual conclusion regarding my driving abilities.
Meanwhile, during the internship and on into the new job with the clerk’s office, I continued to have more issues with my neck, shoulders, back and TMJ. Sometimes it would be so bad I would have to stay on medicine for an entire weekend and occasionally miss work. All of this was because of the strain from trying to see. Even though I had the CCTV, a larger monitor and adjusted display settings, my vision was still declining and adversely affecting my physical health. It had gotten to the point that the CCTV with the 32″ tv screen wasn’t large enough for me to see and do my work efficiently. I was trying… and again, not ready to give in to CORD-5.
The scales finally tipped in favor of CORD-5 in late 2023 and early 2024. I had a minor surgical procedure for another issue and was off work for two weeks. During that two-week period, I recovered and got ready to go back to work. When I returned to work, it was like a bolt of lightning out a clear blue sky. Within the first two weeks back to work, the stress and strain of trying to see to do my job was immensely painful. It was so obvious…. ahem… even a blind person could see it. (Yes, pun intended! lol!) Sadly, I knew it was time to seriously consider leaving work. Very soon after returning to work, I scheduled an appointment with a local vision specialist. At the appointment, I learned that my vision had declined to the point of “counting fingers” and my central vision had a “significant” deficit. In talking with this vision care provider, I learned that I was now considered “legally blind.” Wow… what a punch in the gut! But… I had known it was coming for some time. He gave me solid information that I needed to make an informed decision and prepare for the next steps I was about to take.
Leaving Work
In early 2024, with the information I had received from the eye doctor, the information I found on SSA’s website, the information from reviewing my options for disability benefits through my employer and the obvious physical issues after my surgery, it was apparent that this was the right time for me. I and my husband made the decision that I leave work because of my vision. It was a very emotional and difficult decision. Not many people decide they want to quit work and accept a title such as “legally blind” or “disabled.” But, as difficult as it was, I knew it was time. I had always been told that I would know when it was “my time” to leave work and file for disability benefits. I talked to (and cried with) my supervisor at length, as well as the department’s HR person, and the department head. I “got my ducks in a row,” submitted my notice of resignation, completed the paperwork to file for benefits through my employer and left work in late February. Was it easy? NO! Was it what I wanted? NO! Was it what was best for me? Time will tell but, in my heart, I believe it was.
What’s next?
As far as my vision, I cannot say. CORD-5 is unpredictable. To my knowledge, and as mentioned earlier, there is no reliable way to determine how severely it will affect each individual. My dad was legally blind at 27 y/o (I believe) while I made it to 53 y/o (kicking and screaming all the way… lol!) before I became legally blind. There are some people in my family whose vision is no worse than 20/30 or 20/40, which is really good. It is my hope and prayer that my vision doesn’t get any worse but, realistically, I feel that the progression I’ve had over the last 15 years or so will continue.
So, what does a person do when they are determined “legally blind,” “disabled” or “visually impaired?” Well, just like with any challenge or obstacle, they adjust and adapt. Some might even say that they “evolve.” For certain, I am having to learn a new mindset, explore and set new goals for myself and stay away from the trashy TV and bonbons. lol! It is natural to strive to survive. It is certainly an adjustment. I have worked since I was 16 years old, so not working doesn’t feel right. I miss my friends and coworkers. I miss working with and helping other people in so many different ways.
Is/was it easy asking for help? No. Losing your independence is another extremely difficult aspect of CORD-5. I can’t just pick up the car keys and run to the store or out to grab a bite to eat on a whim. I have to ask for help with colors. I have to use my magnifier app on my phone to see price tags at stores, read labels, etc. and I still miss things on the labels. I have recently received my first “white cane.” I am practicing with it at home and will soon take it out with me for a walk. But I am not afraid to be seen wearing my dark sunglasses, carry my cane or ask for help. A tough lesson to learn but asking for help is not a sign of weakness. It is a sign of strength, trust and faith; sometimes in yourself, sometimes in other people.
For now, I believe that going forward I will find a way to do what I can to help others. It has always been my nature to help others. Maybe through this blog I will learn some new skills, make new friends and learn to embrace my newest “situation” in life. I will be learning to advocate for myself a little more. Alternately, maybe I’ll help someone else learn to do the same thing… on one side of the issue or the other. Having a disability is hard but, sadly for others, accepting people with disabilities is even more difficult.
Take care!
Rebecca
Addendum (July 8, 2024)
I found this article on the NIH website and found it very interesting. It provides information about Cone Rod Dystrophies, but also provides information about support organizations and possible clinical studies. From the NIH site, there are links to orpha.net (specifically 600977 and 601777) and RARe-SOURCE. I never really considered this a “rare disorder,” but I have found good information and a possible new community in which to network and to seek support. I did see that this disorder affects less than 50,000 individuals in the US. ~Rebecca
One response to “My CORD-5 Journey”
WELLLLLL, GUESS WHAT? I READ AND GO FOR IT LADY. YOUR DAD, ALWAYS.
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FOREVER