Hello! Today’s blog entry will be a little bit about my struggles apart from healing from a too-close encounter with a psychopath and some of my recent trials and successes. In the US, I’m classified as “legally blind,” and in the UK they call it “severely sight impaired.” I notice that this is confusing to people who do not have a sight impairment, or who have never encountered someone with that difficulty.
The eyes are complicated structures, and so when someone has limited vision, people often wonder what they can see or not see. Well, it depends on the specific nature of their problem. Major, but not all-inclusive, categories are the cornea, the lens of the eye, the optic nerve and glaucoma, and retinal deficits. In my case, I have all but the latter.
The cornea is the clear layer of tissue that covers the front of the outer eye. If it is clouded, then everything is blurry, and depending on the level of opacity, one can see varying degrees of light and some movement of objects, but not well enough to read or to recognize people or avoid obstacles in one’s path. It might be compared to looking through a very thick piece of wax paper.
The lens of the eye sits behind the iris and pupil. Its the ovoid disk which has muscles attached that will flatten or thicken the lens to adjust for clarity, just like the lens of a camera. With cataracts, the lens itself becomes clouded, so the effect to vision is somewhat like clouded cornea.
Cataracts usually start out small and increase in size until the cloudiness obscures all but light perception. The treatment for corneal problems is usually a corneal transplant from donor tissue. If the surgery goes well, the new cornea will be clear and vision will return to near normal. The treatment for cataracts is complete removal of the clouded lens, with a synthetic lens implanted, and the result is typically even better vision than one had before the surgery.
These days, cataract surgery is a “simple” procedure. Ultrasound waves are used to emulsify the clouded lens. A very tiny hole is made in the eye, and the emulsified pieces of the lens are sucked out through the tiny opening. The synthetic lens is rolled up like one might roll up a newspaper, and inserted through the opening, with the synthetic lens sutured in place.
Cataracts usually come with age, but for me, I inherited mine from my father, and so they were present at birth. In those days, modern surgery techniques had not yet been invented. So at age 5, rather than the “simple,” less invasive surgery, a much larger incision had to be made near my iris. The lens had to be extracted in whole, with something I’d imagine was like a small set of tweezers. It left my pupils misshapen, damaged the muscles of the iris so that they could not expand or contract properly to accommodate bright lighting or darkness, and also scarred the meshwork that allows the nourishing fluid to drain as it is supposed to do. Synthetic lenses had not been developed yet, and once they were invented, my eyes were too damaged and scarred to allow them.
If the cornea remains intact, as it did for me in the early years, then there is no more cloudiness to obscure vision, but the problem becomes the total lack of a lens for focus. This is like having a camera with no lens!! We’ve all seen photographs where the camera was out of focus, and that is what the world looks like for anyone who has had cataract surgery in the old days. The “antidote” is to wear very thick Coke-bottle glasses. This is what I had to do, and resulted in much bullying and taunting when I was a kid.
The eye is constantly making new fluid to nourish the eye. If you notice, the surface of the eye has very few veins to bring blood for nourishment. There is a meshwork for the ever-renewing nourishing fluid to drain off. With glaucoma, the meshwork is damaged, and so the fluid can’t drain off properly. With the overabundance of fluid, the pressure in the eye increases, like a basketball with too much air. As with the basketball, the eye will eventually explode from the pressure if not treated.
But hopefully long before that happens, one will be given eye drops or medication to treat the condition. The medications help to cause the eye to produce less fluid, and to somehow help the existing fluid to drain better. But the danger is that the excess pressure slowly causes the optic nerve to die. The optic nerve dies from the outer edged inward. Once the nerve dies bit by bit, there is no fix or cure. It happens slowly over time, so slowly that one doesn’t know it’s happening. Regular visits to an ophthalmologist are critically important to measure the pressure in the eye and to examine the condition of the optic nerve.
When vision loss occurs due to damage of the optic nerve, the result is a loss of visual field, from the periphery inward. Imagine looking through a fat straw which gets narrower and narrower over time, until finally the optic nerve is completely dead and you have no vision at all — not even light perception.
In most cases, the eye drops and medications will suffice to reduce eye pressure. When the medication doesn’t work, the only other option is to surgically create a tiny hole that replaces the fine meshwork drainage system.
My own situation was quite complex. Born with congenital cataracts, my lenses in each eye were removed at age 5, before the advent of ultrasound emulsification and synthetic lens implants. The meshwork drainage system was damaged in the surgery, and so I developed secondary glaucoma. I went through every glaucoma medication on the market, and none were sufficient to keep my eye pressure in a range that would prevent damage to my optic nerve.
So beginning in my early 20’s, I had a series of surgeries to create the little hole to replace the meshwork. In fact, over the years, I had so many such surgeries that I lost count!! The problem is this — when a person is young, the hole for drainage that is surgically created immediately heals closed. It’s very much like getting one’s ears pierced, and if one doesn’t wear earrings, the hole will close up. My worse eye was the left one, and eventually I had a plastic tube implanted that would permanently allow proper drainage. But by that time, I’d had so many operations that my cornea was clouded, and so I then had two failed cornea transplants.
All these surgeries and treatments were a trip and a half!! Some were quite funny… One in particular, I will never forget. The way my kind of eye surgeries went generally occurred like this: You are placed on a gurney in the staging area. An IV is hooked up. Through the IV, a short-acting anesthesia is administered, which allows the doctor to “put you to sleep” for about 5 minutes. During that interval, the doctor gives you injections around your eye, through small holes in your skull, so that your eye will be paralyzed and will not move during the surgery.
You wake up from the brief anesthesia, and are then given some sort of mild anesthesia that will not put you to sleep, but will calm you and make it hard for you to move, talk, or wiggle during the operation. After that, you are wheeled into the operating theater, draped with a large sterile sheet that covers everything except your eye to be operated on, and your eye is clamped open. Under the sheet, oxygen tubes are put around your face and into your nose so that you can breathe. And the surgery begins…
It’s actually a kind of blissful experience if everything is done correctly. You are very relaxed and can’t move or speak, but you are relaxed and aware and feel no pain. You listen to the doctors chit-chatting. But, well, on this particular occasion, the doctor made a huge faux pas, which *should* be addressed in med school!!
The doctor was busy doing his thing, and I was in happy la-la land … until he adjusted himself for a better angle of approach, and rested his ELBOW on my NOSE!! Of course, he couldn’t see my nose under the sheet. Quite suddenly I couldn’t breathe because he’d blocked the oxygen supply. “Oh no!” thinks me!! “I’m going to die!!” I tried to speak, but the relaxant kept me mute. I tried to wiggle to give a sign, but couldn’t even twitch my fingers!! My horror was over quickly, though, when the doctor readjusted his position again. So all went well, and I’m still here to tell the tale.
What Can You See?
Because so many things can go wrong with the eyes, it’s nearly impossible for someone with a vision impairment to explain what they can and can’t see. Stuff may be obscured by cloudiness, or out of focus due to lack of lens, and there are so many other conditions that i have no direct experience with…
One of my great sadnesses is not being able to see small animals, bugs, and birds, or the stars in the night sky, or the moon winking at me. Binoculars and telescopes help with the sky, but animals, bugs, birds flutter about and are hard to spot. And you never have binoculars with you when you are graced with their presence.
When I was a child, I loved Alvin and the Chipmunks, but had never seen a chipmunk in the flesh. I had no idea what they really looked like or how big they were. This is one reason I loved my wife so much, even though she became the hugest calamity of my life.
On her first visit to the US, the month we got married in July of 2010, I took her to the National Zoo in Woodley Park. Even seeing the animals at the zoo is hard, but I can prepare by bringing binoculars. While I don’t really like the idea of zoos, and keeping animals for human amusement, the National Zoo is pretty good, but the zookeepers try hard to build enriching habitats and take into account the well-being of the animals.
It wasn’t the caged animals that delighted me that day, though. As we were walking the paths, a little chipmunk skittered beside us. I’d never been that close to a chipmunk and yet couldn’t see it. I felt very sad. But my wife, bless her heart for the ONE moment, grabbed my camera and took a photograph, which I could see!
Okay, she got his derriere, but still, to see a picture of him while he was next to me … as close as I could get to seeing him “in the flesh.” I hadn’t realized how tiny they were, nor the beauty of their stripes!!
One of the difficulties that go hand-in-hand with a vision impairment and not being able to drive is keeping groceries in the house and cooking. I have struggled with this for decades, and the logistics are a constant headache. So much easier to open a bag of potato chips or a jar of peanut butter, or eat nothing at all.
Before I met my wife, I’d only just worked out a system of keeping my kitchen stocked with relatively healthy food and experimenting with cooking things I actually enjoyed eating. All that went rather awry when my wife entered the picture. Superficially, it was a kindness that she cooked for me delicious meals and served them to me. But in fact, it was eroding my hard-won independence and making it oh so much easier for her to control my every move.
My wife introduced me to shepherd’s pie, and it is my all-time favorite dish. What a culinary delight, especially for someone who has felt deprived. Yet making it is somewhat like conducting an orchestra. Meat to be browned in a skillet, potatoes to be boiled in a pot, and the whole thing then baked in the oven. I hadn’t had any shepherd’s pie since I escaped the UK in May of 2012.
The day after our 4th wedding anniversary this week, I decided to reclaim my power, and so with trepidation, I went to the store and found the necessary ingredients. It must have taken me 45 minutes to find the mushroom gravy mix alone! But I did it, and I set about the task. It was a huge success, and to tell you the truth, MY version was better than hers. I could have browned the potatoes a little longer, but the cheese was melted and it was yummy!
Another problem I had this past week was that the water filter in my refrigerator needed to be replaced. One of the things I most love about my new home is the refrigerator. It’s fancy-dancy, and it looks like something you could incubate inside of to transport yourself to a distant world in suspended animation. I don’t like tap water because I’ve lived in too many places that had emergency “boil water” warnings. But buying bottled water is a logistical challenge when you can’t drive, it’s expensive, and it’s environmentally unfriendly. So I’ve had a love affair with my techno-queen refrigerator that dispenses water and ice and come to depend upon it.
I first had to figure out what kind of filter to buy. I looked inside my refrigerator for a model number, standing on my tip-toes with magnifier in hand. Wrote the model number on a piece of paper, and went to my friend, Google. No success in finding the correct filter after several tries — until I realized I’d mistaken an “M” for an “N.” And then, thank you Amazon, I ordered the filter and it was delivered yesterday.
But the package didn’t come with instructions for how to remove the old filter and install the new one!! I looked inside the refrigerator and tried to figure it out. Can’t be THAT hard right? But it was beyond me!!
Well, thank you, YouTube!! I found a video that showed me exactly how to do it here. Yet still I couldn’t do it… Three or four failed tries, and i gave up, me thinking, “Oh, no!! Who am I going to call to help me??” I put it aside for the moment and used the time to give my floors a good cleaning with my Swiffer. When I went back to it, I discovered that I was a little too gentle in fear I’d break the mechanism, and so with a bit more elbow grease, I got the old filter out and the new filter installed. And now I have sparkling fresh water and ice, and one problem on an endless list solved.
This is the way to heal from a close encounter with a psychopath. One day at a time, be gentle with yourself, and take every slow step forward that you can. Reclaim your power, remember that you are lovable, and that you CAN do things, and do those things as you are able. The fabric of your world has been ripped to shreds, but the tapestry you make in healing is so much finer than the lies, deception, cruelty, and abuse you suffered. Getting there…
Here are a couple of links that might be helpful:
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