Our beneficiary shares their experience of losing their sight and being confirmed with low vision
Thanks to thalidomide, I have only one eye, which I have carefully guarded all my life, but that was not enough.
Like many of us, my eye has a coloboma (I'm pear-shaped in more ways than one!) which means part of my iris is missing.
My opthalmologist and I saw each other regularly, but he was worried about a leakage at the back of my eye, under the retina. He tried to inject me with a dye which would have given him clues as to where the leaking fluid was coming from. Having inaccessible and tiny veins, this failed and we carried on in the hope that all would be well. I now regret that I did not call in a specialist phlebotomist to help him. I also regret that I did not push my GP into helping me find a way to have my blood pressure read.
Until 2019, my sight was good enough to drive a car, which gave me a great measure of independence, and I had successful cataract surgery in 2018. In fact, at that point - with glasses - my sight was pretty good, despite having experienced a partial retinal detachment a few years before that.
Problems occurred with my retina during unrelated surgery
In early 2019, during surgery (for something else) my blood pressure was found to be off the charts, and something went wrong with my retina - it had probably begun in the weeks before the operation, but I told myself that I was too busy to go to the opthalmologist just then - I was chasing writing deadlines, I'd rest after the op: It didn't go well. In short, I now have chorroidal neovascular membanes (CNVM) which have severely affected my vision, which is now 20/70, officially, low vision.
I had injections into my eyeball every couple of months for a year and a half (not as bad as you imagine them to be, but not fun), which have stabilized the situation, but I can't drive and have severe dry eye syndrome, making me extremely photophobic. I am looking for smart ideas for how to self-administer eye-drops as I have short arms. My Eye Guy, who has my utmost respect and trust, and I are not yet done - his most recent experiment (a few days ago) was to use SuperGlue to narrow the aperture of my eye - to retain the natural lubrication: it seemed to work. I may end up having a tiny procedure instead of the glue (do not try this at home!).
The impact of sight loss on my life has been significant
I'm a professional historian who now struggles to read paper documents; an amateur calligrapher for whom the page swims; a lover of cloud-watching who can't look at the sky except at dawn and sunset.
I have retreated a great deal from the world.
But, I have become that person who tries everything - and I have shared my explorations into assistive devices with our online support group, sometimes to their amusement: bioptic lenses, fitover sunglasses in various tints (the rosy red ones work well for me), multiple spectacles for different lights, multiple light settings on my computer and Kindle, wearing a hat indoors, and investigating Augmented Reality smart glasses. Thank you Health Grant! I am determined to make the most of my remaining vision: I love the printed page, to write, to see the mountains. I want to see them as clearly as is possible.
Experts think that the coloboma, cataract, and chronically high blood pressure all combined in an almost perfect storm: the effects of thalidomide are mutually compounding, and together with other manifestations of ageing present me with new challenges (that is a euphemism).
Please, folks, have your blood pressure and eye(s) checked regularly.