I had a thought whilst lying in bed wide awake. I want others to get a sense of what it's like to live with Stargardt's. It's really hard to explain what it is like to lose something that you take for granted and use every second of the day. Then I thought to a chain email that circulated a long time ago, some of you might remember - a passage of a story was sent except the middle letters of the word were jumbled. Once you got to the end of the passage, it said that you had just read the whole story essentially spelled incorrectly, but you were able to read it.
This demonstrates how I read - my blind spot covers the middle of words, so I see the start of the word, possibly the end, and it's all a jumble. Yet I can still read it (it still needs to be in a larger font).
I've put together an example for you, have a go at reading this (beware I threw some tricky words in!):
- Sagdtrart's Dasisee is a tpye of macualr degaeentiorn. It afefcts ynoug polepe, lkie me, and cehagns our levis frveoer. Tnihk aubot tihs, jsut as you are gitnteg uesd to lnviig yuor lfie, fgrniiug out yuor dermas and anirtapsois, tehn rnmldoay you ncoite sthniemog a liltte off in yuor viosin. The nxet tnhig you konw you're bneig tlod you hvae an ibunclrae dsasiee and wlil lsoe yuor shigt.
And just in case you got stuck, here it is written properly:
- Stargardt's Disease is a type of macular degeneration. It affects young people, like me, and changes our lives forever. Think about this, just as you are getting used to living your life, figuring out your dreams and aspirations, then randomly you notice something a little off in your vision. The next thing you know you're being told you have an incurable disease and will lose your sight.
Imagine reading like that all the time, it does get tiring. It's as though the brain has adapted to read in a different way. The image below is of a meme that was circulated and a response was written by the Cognition and Brain Sciences Unit in Cambridge, UK, which you can read here. They explain some of the reasons behind how we are capable of reading words with jumbled letters, although we apparently read 11% slower. This makes sense as I have noticed it takes me longer to read.
I'd be really interested for those who aren't vision impaired to share their experience reading this. I hope this gives a little more understanding into how myself and others with SD read.
HELLO --I'M CHUCK -I HAVE BEEN LEGALLY BLIND FROM THE AGE OF 14-15 --I AM NOW ABOUT TO BE 64--I AVE LEARNED TO USE MY PERIPHERAL VISION --WHEN I AM LOOKING AT A PERSON --OR OBJECT --I USE THE PART OF MY EYE BELOW MY CENTER VISION--SO SOMETIMES WHEN I AM LOOKING AT A PERSON --THEY SAY WHAT ARE YOU LOOKING AT --BECAUSE TO THEM IT LOOKS LIKE I AM LOOKING OVER THEIR HEADS----IT IS AKWARD --BUT WHAT YA GOING I HAVE LEARNED IN SOCIAL SITUATIONS --WHEN TALKING TO PEOPLE THAT I DON'T KNOW I TRY TO KEEP MY CENTER VISION ON THEIR FACE --I CAN'T SEE THEIR FACE WHEN I DO THIS --SO I SWITCH IT UP LOOK AT THEM --LOOK AWAY ----THAT WAY IN MOST CASES I DON'T HAVE TO EXPLAIN TO THEM ---I ONLY EXPLAIN MY LOW VISION ON A NEED TO KNOW BASIS ----ANYWAY I SUGGEST TO YOU --AND I DON'T KNOW IF THIS WILL WORK ---TOSS A FRISBEE OR A RUBBER BALL WITH A FRIEND--OR JUST THROW A BALL UP IN THE AIR AND TRY TO CATCH IT --I THINK THIS WILL HELP YOU TO USE YOUR PERIPHERAL VISION BETTER -NO PROMISES --I GREW UP DOING EVERYTHING MY FRIENDS DID===== I DID NOT PLAY BASE BALL --THAT BALL GOES TOO FAST --FRISBEE AND OTHER SLOWER SPORTS YA KNOW---I I READ WITH A PAIR OF STRONG READING GLASSES AND A MAGNIFIER 5 POWER---I HOLD IT CLOSE TO MY FACE -SOME TIMES INK FROM THE NEWS PAPER GETS ON MY NOSE --BUT AGAIN WHAT YA GOING TO DO---WITH FULL BLOWN STARGARDT'S ALL YOU HAVE IS YOUR PERIPHERAL VISION
ReplyDeleteHi Chuck! Good to hear from you! I do the same thing - I just look at someone where I assume their eyes are because I don't want to look awkward. I read the same too. Surprisingly, I can still catch a ball and shoot hoops well. I've adapted to that - I learnt to judge the speed and distance of when the ball is coming at me. It's harder with a smaller ball though! Hope you are well :)
DeleteThank you, Chrissy, for this very helpful posts and all you do. Since being diagnosed with Stargardts a few years ago, I have been worries if I will be able to read print at all. I sent you an email to the address in the contacts link. Best, Michelle
ReplyDeleteChrissy, Interesting blog. Just stumbled on it.I am going to refer my patients to this blog. Very informative and very encouraging. I'm very happy for you and appreciate your initiative to report your musings in a blog. - Arun.
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