When I walked out of the latest retinal specialist’s office a little over two years ago, I was consumed with fear. Like retinal specialists before her, my newest retinal specialist told me there was nothing I could do to stop the progression of my RP and save my eyesight. And when I pressed her for specifics, she indicated I had only three years of any sort of eyesight left.
I spent the next two days laying in bed sobbing. I was so terrified of the darkness that awaited me it was hard to even breathe. But the morning of the third day defiance set in. I was so angry with that retinal specialist for stripping me of hope I vowed to prove her wrong.
I decided to do everything in my power to save my eyesight—starting with switching my focus from fear of blindness to being determined to see. It’s why I started this blog and chose that name. I knew I was done giving the “b” word energy. I also started green juicing, exercising more, doing daily eye exercises, and incorporating regular intervals of intensive, specialized eye acupuncture. Between it all and despite the doomed prognosis from that retinal specialist, my eyesight began to improve a little.
Today—two years and two months into my Determined to See quest—my fear is gone. I feel confident in my ability to retain the eyesight I have left and no longer battle depression worrying about my future. Instead, I’m busy making plans for it, starting with annual trips to different parts of the world with my husband and two daughters that will kick off the summer of 2016.
This experiment with Jeanne to shift to weekly acupuncture sessions with a local acupuncturist who focuses on treating my whole body has been empowering for me. In addition to the peace and relaxation I experience, I can feel an increase of blood flow and circulation—which I know is helping me.
This year, in addition to my ongoing determination to see, I’ve embarked on a new quest: to find an affordable, accessible, balanced solution to my eye health. And I know I’m on the right path.
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I always considered myself fearless. Not a balls to the wall throw myself out of planes fearless but in a contemplative, zest for life kind of way that included world travel, unique sports and activities and sampling what life had to offer without hesitation or reservation.
When my younger sister died of cancer in her forties that fueled my quiet fire; live each day to its fullest and with no regrets. Before she was diagnosed with Multiple Myeloma she had gone almost completely blind from RP – a clear result of a stressful and chaotic lifestyle that rapidly consumed her sight. That was a lesson in and of itself.
But my eyes had their own agenda. How brave and intrepid can you be when you’re worried about hitting a child on a bike or perpetually afraid of falling down the stairs?
My fear relating to my visual impairment has never been about the future – I couldn’t let myself worry about that unknown when there was an overwhelming apprehension about living day to day with partial sight. That crushed my spirit in no time flat.
Travel is in my blood and that’s where the fear really took hold — through un-memorized streets and sidewalks and strange cultures and languages that used to fill me with relentless pleasure.
But oh what a difference a few months can make. Thanks in large part to my weekly acupuncture regime I have conquered a lot of that dread. The acupuncture works to keep the body in harmony and something about that balance has quelled my fears. The anxiety has faded and in its place i find a natural calm and even some humor in my situation by not taking myself – or my eyes – so seriously.
A while back I mentioned the theory that pain is 90% fear; but what about the other way around? I believe that fear is the ultimate pain – and living with that hurt is not a way to live at all. I’ve been through the wringer on this one and I’ve come out the other side a happier and healthier human being.
I’m in Japan while I write this and much to my husband’s delight (and dare I say a bit of horror) I’m freely roaming about without constantly grabbing his arm or stopping cold at every curb. The tension is gone, replaced with a sense of promise that’s the ultimate delicious mystery.
Bravos to both of you!
Thank you, Diana!
Dear Ingrid,
Fear is a crippling emotion and letting go of it is very powerful. Be strong, which you are and continue to inspire the rest of us to be strong and to let go of fear.
Enjoy the travels:)
Thank you, Jane. xo
Dear Ingrid,
I am so happy that you are planning the travels for 2016. You are welcome in Graz and Olivia and I will be here for you. Research, meet locals, learn about the past, write…..
Please come. I can organise whatever you need. You have friends here.
Kathryn
Kathryn – thank you! We are definitely planning to come to Graz and would love to get together with you and Olivia. As soon as we get it mapped out in late fall, I’ll connect with you. Hope all is amazing your way. – Ingrid
You are both amazing. Bravo for not letting fear win. Ingrid, it is amazing that you have improved your eyesight in these two years rather than see it fall away from you (I hadn’t heard about that prognosis). So awesome. And Jeanne, how cool that you are in Japan and enjoying yourself and being adventurous no matter what. All the best to both of you!
Thank you, Alysa. Love you xoxoxo
I am so happy that I found your blog! I am 37 years old and I was diagnosed with usher disease ten years ago. This condition is a combination of heavy to moderate hearing loss and retinal pigmentosa. I am really scared of course! This blog has amazing information and really inspiring to me.
Thank you so much!
Thanks for your note, Natassja. I know several people who are dealing with Ushers but are fighting back and experiencing improvements through diet, lifestyle, emotional healht and acupuncture. If you aren’t already there, you should join the Determined to See facebook group. Lots of great discussions on there about different things people are experimenting with. https://www.facebook.com/groups/644238948987438/801545463256785/?notif_t=like
Sending a big hug your way. YOU/WE can beat this!!! Best, Ingrid