I have been in observation of myself and what is true about my feelings and experiences throughout this journey with Stargardt's disease. Over the past two years I have written down statements (as they genuinely come to mind) about my experiences living with Stargardt's. The goal is to help demystify low vision/blindness by sharing the "real". I hope this has value to you and I will slowly continue to write more "Truths".
#! I don't see your facial expressions even when it seems like I'm looking directly into your eyes. I've learned to look in the right place despite what I can't see.
It's hard for friends and family to understand how Stargardt's disease effects my vision. I totally understand that. If It's hard for me to explain what I see, it must be even harder for someone to imagine it. I hope my BlindGirlsSee Truths help people understand better and continue to spread awareness for low vision.💗
#2 Knowing you exhibit the symptoms of a disease that causes progressive vision loss and receiving genetic results confirming that you have the disease are two different states of mind. If you let it be.
It took nearly two years for my genetic results to come in (I donated blood for a study on stargardts and macular degeneration). By that time I was beginning to accept my vision and was getting really comfortable in my own skin. But reading the details of the results still made me cry. I felt disorganized from within if that makes sense. I almost felt filthy. But I woke up the next day and had to laugh at myself. I was being absolutely ridiculous. To be honest, Stargardts is the best experience of my life so far. I'm growing and learning so much about myself and I love it. The genetic results confirm that my disease is indeed recessive and therefore if my husband is not a carrier there is NO way our child will HAVE stargardts 😊 (but even if they did... My life is pretty awesome and so would theirs be) 😍
#3 The number 20/400 doesn't tell you enough about my vision. What matters is the size and shape of the blind spot. Many things are too small to read. But some things are too large to read. Sometimes.
When it comes to low vision and blindness... Visual acuity doesn't mean much of anything. Two people can both be 20/400 and be able to see or not see different things from one another. With Stargardt's disease, every individual sees differently. I can't read the newspaper and can't read captions on Instagram without a visual aid.. I can't see your whole face but I might see you wink your eye if I'm looking in the right place. Another person with 20/400 vision might have a completely different explanation. You guys really care and I L💞️VE you for it! 😚
#4 If you find joy within. You will forget you are blind. Even in moments that you are reminded, joy will prevail.
😎 I forget about my vision all the time! The truth is... There are so many things in life to enjoy that don't require perfect vision. And the things that do? Well there are ways around everything! I may not be able to see things in detail anymore, but the bigger picture is so much clearer. Choose joy everyday 😄
#5 You would be surprised how many people suggest that I learn sign language when they find out I'm losing my vision.
When this happens, I usually smile and say "well sign language would be pretty challenging for someone with a visual impairment, but yeah that would be cool to learn". Really, I think they mean to say Braille. But take it from me, that may not the best response when a person tells you they've lost their vision. Don't worry about finding a solution for the person. I personally feel the solution is coping with the change mentally (especially if the vision loss has no cure). And if you're in this situation with someone who is blind, I think a good response is to ask questions to better understand what the person is experiencing; to listen; and maybe even confirm that it doesn't change how awesome he or she is to you (or any word of encouragement is helpful). In any situation where you don't know what to say, I think we should be patient with our words and you'll be able to better understand how to respond. And even if you do blurt out the words "sign language", it's not the end of the world. We laugh and we move on 😁😘 💞
#6 My vision loss was scary, but keeping it a secret was burdensome. Tell someone.
Vision loss is HARD. But friends make it 100 times easier, I promise! I understand taking some time to yourself to digest the bullet in the beginning, but if you keep it a secret like I did for 4 years, it's going to weigh you down and make life harder than it should be. Your friends love you and will do what they can to help you get through it. Just tell them what's happening and tell them what you can't see. When I first started going blind I was pretending to see the memes and pretending to laugh at the text messages my friends were showing me from their guy friends... That's insane. Don't make it harder! Start slow and tell one person. Last night I wrote on my snapchat that I can't see the small fonts and this morning a handful of people made their fonts just a little bigger (s/o @_sarinly ) 😭 Vision loss changes your life and you just want to be normal again. You can be comfortable with everything if you just speak up. I'm sharing this because I love all of you on here with and without vision loss. 💞 (and for the record my friends haven't stopped showing me the memes and messages they just know that I'll take an extra second to zoom or maybe they will just read it for me 😊 I like it both ways) Namaste guys😘
#7 Every day isn't rainbows and butterflies for me. Today... I just want my sight back.
Let's be raw... This is the first time I've identified with and accepted the feeling that I don't want to be low vision anymore. I feel like I've done it long enough and I've learned so much and grown so humble. But I don't want to stay like this. I miss seeing normally, interacting normally, being normal. Many of you may think I've never changed or been challenged in losing my sight because I look and act nearly the same. But the world is different on my side of the eyes you see. I can't read things with ease, see faces, drive, watch TV from the couch, navigate a new area with ease, and it's even harder to meet new people if I'm alone. Some of the "blind girls see" emails i recieve have expressed disappointment in not being able to "stay as happy as I am". Well I think everyone deserves to know I feel sad sometimes too. I'm not at all saying Stargardt's is the worst case scenario for anyone. But I'm saying you're not crazy if you feel sad or if you cry today or for a few more days than you want to. You're human. And I'm saying you should know that I'm not perfect in dealing with this either. And I'm saying, don't beat yourself up if ever you feel sad. There will be harder days, and ALWAYS, BRIGHTER DAYS! 😢💞
#8 Navigating new places on my own is stressful. At the same time, conquering it on my own is always a sweet, sweet victory. Independence.
Let's not confuse being independent with not needing anyone's help. I think independence is having the courage and the motivation to make it happen despite any visual challenge (or obstacle you face). "It" being: taking the bus to work; cooking dinner for yourself and someone you care about; asking for help even when it seems like no one wants to be bothered; exploring a new city; exploring a new career; accepting changes in life and being resilient enough to see your way through... Try not to depend on others for livelihood or subsistence. I'm not saying this in any extreme way, I'm just saying I know that you have what you need within you! Just dig in there and blast off!!! 💥🚀 . I recently began doing more things alone and I wouldn't lie to you... My eyesight makes it a little scary and pretty stressful, but OMG when I complete the task... I'm so alive! 😋 Taste it for yourself ! #victory
#9 It can take me longer. It can require more effort. But it cannot be impossible.
I'm not going deep. I'm just saying... It's possible! Even with low vision, it's still possible. Take the extra time and put in the extra effort and then make your evaluation. Simply, try not to jump immediately into "it's impossible" 💞
#10 If you wonder about my visual impairment , ask me. Your asking is an expression of love and concern that I appreciate and connect with deeply.
I know some people feel they can be invading my privacy by asking too many questions but it's not at all that way! I love when you ask because then you can better understand what living with Stargardts disease is like. Especially since it is an impairment that is not noticeable to those who are watching me. When a person asks questions, there's a strong connection that I develop with you. How can I explain it? To me it's an expression of love and the easiest way for me to connect with another beautiful soul. My heart really melts a little when you take the time to learn what I'm experiencing with this central vision loss. I'm an open book, ask if you wonder. We are spreading awareness and experiencing yoga by sharing and opening up to one another!❤️
"Owning your story is the bravest thing you will ever do." - Brene Brown