edit: Unfortunately, this blog entry has been construed by at least one person as an attempt on my part to garner sympathy and to send anyone I didn’t fully explain my condition to on a long guilt trip.
Let this disclaimer stand: There is a point to this blog entry, and it is not to call anyone out and make them feel bad. It is certainly not to make anyone feel sorry for me. I don’t want anyone’s pity.
The reason I write any of these personal blog entries about what’s going on with my physically is this: I’m trying to take a lousy situation and make sense out of it. If I can’t make sense out of it, I want to try to twist it around and come up with something positive.
That is how I cope with things. Period, end of story. NO guilt trips intended. And this is not a pity party. This is me working through my life. That is all this is. Take it or leave it.
And “leave it” really is an option that I totally encourage if you intend to take the way I reflect on and deal with my life personally.
The night I lost my vision wasn’t unlike most nights. I was on my bed, head propped up on pillows, with the television on. The headache started as a stabbing pain on the back of my head, and spread quickly to the top of my head, radiating out to the left and right. It didn’t throb. It was steady. It felt like a knife had gone into the back of my head, and was twisting its way throughout my scalp. After a few seconds, the television blurred, and slowly, everything in the room morphed into shadows.
The pain in my head was unbearable, and I was already on painkillers due to the intense stabbing abdominal pain. I realized that I should probably ice it. I made my way down the stairs, stepping on various unseen cat toys on the stairs, my right hand on the railing, and the fingers of my left hand lightly touching the wall. My toes reached out to the edge of each step, daring it to be the last. I had lived in this house for almost a year, and had never counted the stairs. I could see the bottom of the stairs-the ledge overlooking the living room, but I couldn’t see where one stair ended and the other began.
The living room is a long room, with an opening to the kitchen at the end. I ventured out into the middle of the room, stepping carefully to avoid crunching my feet against any wayward cat toy; he’s fond of playing with medicine dosing cups and the lids from prescription bottles. On a be-socked foot, those can be as lethal as Legos.
Upon reaching the refrigerator, I realized I had to find a ziploc baggie in which to put the ice. In the bottom drawer, there were non-ziploc sandwich bags as well. I didn’t want one of those; it would leak easily. Without one’s eyes, it is a pretty nasty challenge to differentiate between a seal-able and non-seal-able bag.
After groping through the plastic, I found a ziplog baggie and filled it with ice. Sealing it was another challenge, but I finally got it closed. I made my way back up the stairs, opened the linen closet, and pulled out a pillow case to wrap around the ice and take away some of the cold’s bite.
I made a couple of phone calls, but nobody was really taking me seriously. Sometimes when I’m telling people something’s wrong, I understate it in the interest of sounding like a chronic whiner. Lately, I’ve found that it’s actually detrimental to my medical care. Some of my doctor’s don’t fully understand the intensity of my physical pain because I’ve gotten so good at hiding it, and downplaying the symptoms out of an odd balance I’ve struck between pride and shame.
After a battery of tests, scans, X-rays and consultations, it was decided that aside from some congenital clustering of the optic nerve, I was perfectly fine, with the exception that I was legally blind, and the machines that determine one’s prescriptions got different readings each time they sat me down in front of it.
My diagnosis was: vision loss with no specifiable cause.
My prognosis was: hope for the best, and wait for the headache to stop and the vision to return.
At the pain clinic, the nurse practitioner I saw regularly hooked me up with a doctor who was willing to do trigger point injections into my head, effectively numbing my entire scalp. The first couple of times I received those shots, I thought all my Christmases had come at once! There was no pain in my head. I still couldn’t see, but the pain was gone.
There are so many obstacles that arrive when one of your senses disappears.
Imagine moving your bowels and trying to wipe effectively. Without vision, how can you tell when you are clean?
Imagine pouring yourself a bowl of cereal, and then adding the appropriate amount of milk. How do you know when to stop pouring?
Imagine attending a friend’s wedding, with a sea of round tables, each place setting with a place card. How do you know where you’re sitting? How do you find someone and explain to them that you can’t see well enough, and would appreciate help finding your spot. Imagine asking the bride, who arranged the seating, where you were sitting, and the bride points, and says, “Somewhere over there, I think.” Finally, someone shows you to your seat. The bride’s mother, I believe it was.
Imagine making phone calls on your little Razr phone without being able to see the buttons.
Imagine trying to sort out and give yourself the proper doses of various pills of about the same size and shape.
Imagine trying to set your hair into a reasonable shape, or at least put it into a ponytail without strands sticking out all over the place.
Imagine trying to pass the time without being able to read, watch the television, go for walks around the neighborhood, meet friends for lunch, or drive anywhere.
Imagine people getting offended when you don’t answer their e-mails. How can you explain to them that, without a magnifying glass and some insanely thick reading glasses, you can’t make out anything on your computer monitor, when just the day before, everything was normal, except the abdominal pain.
Imagine being imprisoned in a body that generates nothing but pain, and losing one of your only senses that doesn’t involve pain.
Touching, hearing, smelling, tasting, and seeing.
Aside from cases documented by Dr. Oliver Sachs and other abnormal psychologists/psychiatrists, most of the sensory losses you hear/read about have to do with hearing and/or seeing.
Every one of our senses relays important information to our brain, telling us about our surroundings, and giving us all the information we need to plan a course of action/inaction regarding a given situation.
Given the sudden loss of any one of the senses, we are at a loss for essential information. By essential information, I mean information that contributes to our ability to survive.
With the abdominal pain as a constant alarm going off in my head, the other senses are dull in comparison. Even before I lost my vision, my body wasn’t allowing me to gather as much information from the 4 senses that don’t have anything to do with pain as I did before all of this happened.
The loss of my eyesight was, for lack of a better explanation, horrifying. With only four senses on which to focus, there was THAT much more of my brain dedicated to receiving messages of pain. “Urgent!” my body said, “Something terrible is happening in your belly! Now do something about it!” and the stabbing pain just continued.
When I was home, which was most of the time, I’d lie on my back and listen to my cat cry because I wasn’t able to play catch with him.
Time moves incredibly slow when your body is in constant agony. A day can last immeasurable years in the mind’s eye.
Additional testing uncovered a minor heart defect that hampers my body’s ability to distribute enough oxygen to itself. Since starting on oxygen therapy, I have regained almost all of the vision in my right eye, and a lot of the vision in my left.
I just re-read Jose Saramago’s novel “Blindness,” in which everyone in a country temporarily goes blind, with the exception of one woman. The entire society breaks down. People roam the streets, plundering stores for food, garbage and excrement overruns the streets, and most people can’t find their own homes and/or families.
Reading that book again after losing my vision was an entirely different experience than reading it before losing my vision. If everyone went blind, things really would turn to shit, literally. Society would not be able to function in any orderly fashion.
I had just a taste of what it’s like to lose a sense. My grandmother has glaucoma, and has been through several eye surgeries. The other day, she and I had a long conversation about what it’s like to interact with others when you can’t see. We agreed that it’s terrible that when others see you, they can’t tell you’re blind. They interact with you as if you’re crazy, until you explain your situation to them.
Aside from constant, chronic pain in the abdomen, and having to explain that to people, it was almost unbearable for me to have to explain to people that I had another problem which was more relevant to our interaction. Often, companions of the blind forget that their companions are blind. “Look at THAT!” they say, as if it was possible. And again, the sightless have to remind the sighted that while they would LOVE to “look at that,” they would prefer a description.
It’s really difficult to remind people that you can’t see without being sarcastic, or sounding like you’re trying to lay on a guilt trip, or just plain sound like you’re complaining and bemoaning your unfortunate situation.
My grandmother, unfortunately, will probably never regain her vision. I, on the other hand, am patiently waiting until my eyes will stop fucking up the diagnostic machines so I can get appropriate glasses and be on my way.
Imagine trying to go through just one day of your life without being able to see ANYTHING. Imagine waking up and experiencing the fact that eyes open and eyes closed are barely distinct; the difference between the two states is negligible.
Imagine going through your morning routine without being able to see how much toothpaste you’re putting on your toothbrush. Imagine, if you’re a man, trying to shave your stubble, or if you’re a woman, applying whatever makeup you wear.
Imagine selecting your clothing by touch alone. Imagine trying to brew your own coffee. You can’t drive when you’re blind, so imagine trying to find your bus stop. Imagine trying to find your desk at work. Imagine trying to make your way to the deli for some lunch.
Imagine coming home and trying to cook something for dinner. How can you tell what food is in what can, or whether you’re adding margarine or sour cream to that saucepan? How will you crack and egg and make sure all the innards get into a frying pan instead of all over the floor or the counter?
There is so much we all take for granted in our daily lives. Losing even one of our senses is absolutely terrifying.
I try to imagine what it would be like to lose any of the other 4 senses, and I wonder why the senses of touch, smell, and taste aren’t lost as much as sight and hearing. I mean, I understand the physiological reasons that they aren’t lost as much. I’m just saying-wouldn’t the loss of those senses be easier for us to cope with?
Waking up one morning to find you can’t smell might actually be a blessing. Certainly it would make the rides home on a cramped bus filled with employees of the fish-cleaning plant more pleasant than before.
Losing the sense of taste would make it easier to drink retsina and eat healthier foods; imagine never craving chocolate or Taco Bell food again!! Wouldn’t that make dieting easier?! Certainly, it would.
Losing the sense of touch is a bit more tricky. Most people would probably hate losing this sense. You could never experience the kiss of a loved one, or a reassuring pat on the shoulder from a friend. You wouldn’t be able to tell whether it’s hot or cold outside, and you wouldn’t be able to feel sand squishing between your toes on the beach. On the other hand, you wouldn’t be able to have menstrual cramps if you’re a woman (and obviously if you’re a man). Men wouldn’t have to wake up with itchy balls. Prison rape wouldn’t be as much of an ordeal (although I can’t imagine it would be pleasant). People with cancer could do without pain medication, which would allow them the lucidity in their final days to make peace with their friends and family.
Death would not be as frightening.
And for those of us who suffer chronic, constant, unending pain, there would be hope. We could rejoin the ranks of the people who are able to get out there and actually LIVE their lives. We wouldn’t have to hole up in our houses, trying to keep ties with friends and family in between flairs of agony.
I would trade just about anything to lose my sense of touch.
There are a lot of things I’ve seen in my life that I would really like to UN-see. But when you can’t see, the scary thing is, your mind tries to make up for it. Memories turn to technicolor. With the good memories, it’s actually great. It’s almost like reliving the good times. However, sometimes a bad memory pops up, and you have no recourse other than to lie there and wait it out. Wait for the badness to pass away, and try to push it all aside with memories of gardens, of Greek Islands, the pages of books you’ve read and re-read. You try to sing to yourself in order to stimulate your other senses.
I can’t imagine what it’s like to go through life with such a loss. I only experienced lack of sight for a few months, but I tell you, I have learned my lesson. I am far more dedicated to my photography, because the more interesting photos I take, the more memories I’ll have to draw from if I ever lose my sight again. I’ll have a veritable flip-book of photos to “leaf through” in my mind. I’ll be able to conjure up images from my viewfinder to replace the bad memories that like to come out and play.
Try to see all you can while you can. Don’t ever turn your eyes away from something wonderful, or from someone you love. Focus, and try to store the beautiful things in your mind. You never know when you might need them.
