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will be permanent. As it’s been well over a decade since my last surgery, the floaters are becoming more sporadic, and my eyes are more stable. I’m also getting used to the signs and symptoms of a floater, and no longer am surprised by having limited vision. However, I’m still never certain that they will go away.
The effects of the laser treatment also restrict my driving in unknown places. I am reluctant to drive at night because I am afraid that I won’t be able to see properly. It’s difficult to see the transition in the road from highway to ramps, especially in rural areas that are dimply lit at night. Rainstorms in the dark magnify the problem. Driving on a snowy, sunny day can be worse because the intense whiteness is simply blinding. It is the same situation as the fireworks path, where things appear to be a continuous row without distinction between one terrain and the other. I lose the ability to distinguish depth, distance, and shading. Now I limit my driving at night to places that are familiar to me or allow someone else to drive me. My driving record is safe, but it is better to take a precaution to not drive than find myself in an unknown situation. Because of the eye damage, I think twice about whether I can go into our local caverns with my son because of the darkness, or any kind of fun house, haunted house, or darkened museum. It’s not like being in a dark room, where you can still see shapes and patterns. This is complete black, like being blindfolded. There’s no depth to anything, so it’s a matter of feeling my way around the room.
Having had several laser treatments, my peripheral vision is also limited. It hasn’t affected much of my life, but it is funny when I go for the yearly eye exam, and I realize how much I really can’t see. The technician checking my vision is holding out his fingers to the right saying, “How many do I have up?” and I’m thinking, “Man, I really can’t see anything.” It isn’t a real problem, except that I need to remember to look down, especially in the kitchen where I typically run into the corner of the side table or the cat dishes on the floor. It’s also common for me to trip over the open dishwasher. Part of this comes from the fact that I was never considered graceful, but I’m sure having limited peripheral vision doesn’t help. My experience with having diabetic retinopathy has been filled with both laughter at my inadequacies and fear at the uncertainties.
OTHERS’ EXPERIENCES
These kinds of uncertainties have also been the experience of others with diabetic retinopathy. In a qualitative study of ten people with diabetes, we examined how this group coped, or made meaning of their diabetes. The purpose of the pilot study was to understand more about the experience of diabetes and its complications, in order to help adults live more harmoniously with their chronic disease [5,6]. The average age of the participant was 42, with an age at diagnosis between the years of 4 and 25 (average = 10.8). They had type 1 diabetes from a minimum of 12 years to a maximum of 52 years (average = 31), with 311 cumulative years of experience with diabetes.
The study began by asking the participants to tell me about their diagnosis of diabetes, which was difficult for most to do as they had not thought about how that diagnosis may have affected the way that they are currently caring for their disease. My work did not specifically include the transcripts of the participants’ fears of retinopathy and other complications. But because the patient’s experience of retinopathy is an important
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point to be made for this chapter, I have included their comments (with pseudonyms used) below.
Six out of the ten participants had at least one retinal surgery, and they found it to be a difficult experience. In one participant’s story of retinopathy in 2003, Karla said a floater happened where she least expected it—St. John, US Virgin Islands. She woke up around 3:00 a.m. in her camp cottage and began to violently dry heave and vomit. Approximately 30 min later, she woke up, looked around, and realized her vision had something obstructing it. She tells of her experience in this way:
I blinked to see if I was dreaming, but knew immediately that it was a dreaded “floater.” I had to turn my head to the side so I could see out of that eye. It was as if I constantly had a bug flying into my line of vision. Being that it was 3:30 in the morning and not much healthcare available on the island, I waited until the sun rose to tell my friends I needed to go to the clinic.
She told them her suspicions about a microaneurysm bursting from the force of the dry heaves, but there was nothing they could do for her at St. John, so she left for the island of St. Thomas via ferry ride. She arrived at the ER, where the on-call physician examined her eye and said there was nothing he could do for her, either. He called the local ophthalmologist to see if she was available, but was not hopeful since it was a Saturday. Luckily, the ophthalmologist was still in her office, which was only a block away. She told Karla that she did have a bleed in her eye and that she should avoid scuba diving, sneezing, coughing, or anything that would put pressure on her eye. Karla was “so afraid to even fly home to the states.” She was scheduled for laser surgery about a week later, and says:
I was given the option of having a numbing medicine injected for the procedure, but decided the needle might be worse than how the doctor described the surgery. Instead, I just took two Advil an hour prior to surgery. I was led into a pitch dark room and had something placed in my eye to keep it open. Then I proceeded to see bright green flashes of light and heard sounds like a video game (like Asteroids, if you are old enough to remember Atari). My doctor warned me when he got closer to a nerve, because that did cause more discomfort than other areas. It was like a twinge or someone hitting your funny bone, only in your eyes.
She said her eye felt sore for an hour or so after the procedure, but overall was not “as bad as I had psyched up myself to expect. The worst part of the whole thing was having your eye held open when you had an extreme urge to blink.” She is still frightened of the end results if a full retinal detachment were to occur, because she loves photography and sightseeing, but is no longer afraid of the laser surgery procedure. She had only one surgery, and so far, it has been successful. She thanks God every day for the gift of her sight. Having the surgery has been a reminder not to take her sight for granted. The pictures below are the microaneurysm that bled in her left eye (Figs. 1 and 2).
As another participant described her surgery for diabetic retinopathy, she explained how it hurt, but also that she was fortunate to have not gone blind. She understands that the “flip side” of dealing with diabetes is that she could have lost a limb already, or been blind, and she could have had “so much happened to me that hasn’t.” She could get through the retinal surgery, knowing that she would be able to watch the sunset, or look in her garden, and see her children grow up to graduate or to get married. Knowing that
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Fig. 1. Left eye microaneurysm.
Fig. 2. Left eye subhyaloid hemorrhage.
she is able to see, having the retinal surgery was not as bad as the alternative. Camilla summarized her gratitude in this way:
When it comes down to it, I count myself truly blessed because I could have had things so much worse. I just learned to deal with what I’ve been given, and just think it could be worse. Just be grateful that this is all you have to deal with.
Because of her retinopathy, Camilla also relies on her husband to do most of the driving, especially at night and in the rain. Her husband was supportive of her when she developed retinopathy and had to go to the eye doctor. She called him at work because she was seeing something in front of her eye. She explained to him,
‘I have this claw-looking thing,’ and he’s like, ‘Can you see it?’ And I say, ‘Yeah, I can see it,’ not thinking he thinks that it’s something that’s protruding out of my eye. So he rushes over to meet me at the eye doctor, and he says, ‘Well, you look OK. I was thinking I was going to see this monster.’ [He thought the “claw” was outside, not inside, her eye.]
One of the more ominous thoughts about diabetes for these participants was the possibility of going blind. Before going into laser surgery for the first time, Camilla
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spent some time with her children, and she vividly described her feelings as she spent the day with them:
The whole time, it was a dreary day, and I was just taking in everything. What the clouds looked like. They’re so gray, in the dark over here, and trying to keep everything pictured in my mind. What the trees looked like. What the Dairy Queen sign looked like. My husband’s profile. I just kept looking at him and the children. I gave the kids a hug, and I tried to remember.
For one participant, it was difficult for her to help other people understand what it is like to get laser surgery for diabetic retinopathy. She said, “They have no idea,” but she was grateful to be able to talk to the group, who could relate to her complications on some level. All she can do is try to “stay ahead of it” on a day-to-day basis and make the best of the difficult days. Amber was used to dealing with diabetes, the way that she was “used to” dealing with the blood she has in both her eyes from retinopathy. She said that the bleeds in her eyes have become a part of her vision, and she tells herself to keep going. “You know,” she said, “You’ve got to deal with what you have.”
Like the others in the group, I generally take a positive spin on diabetes. Sometimes you need to laugh a little. One woman told her daughter, “If I ever go blind, don’t put me in a polka-dotted shirt.” We sometimes make light of our disease. After several years, it still requires creativity to figure out where to put an insulin pump on a swimsuit. The pump does make my life easier and better, especially at night. Before the pump, I would wake up with multiple low blood sugars while sleeping because the NPH insulin was peaking. These days, it’s less common to have a low blood sugar at night. I also think that things could be worse, whether I’m talking about the insulin pump or talking about my complications. Having diabetes is not as bad as being––and I could finish the sentence a thousand ways––in the intensive care unit, diagnosed with MS or some forms of cancer, or dead. And yet, we may have some of the same fears and feelings as those who have a terminal illness.
Marie shared the story of being diagnosed with diabetes in 1984, which serves as an example of the fears. She has not had retinopathy surgery, but faces the prospect of blindness as a complication of diabetes:
As I went to get my insulin and syringes from the pharmacy, I cried all the way there. Not only did I fear shots, but I’ve always been petrified of going blind and here I had a disease that actually had blindness as a possibility. I never did like anyone messing with my eyes. As a child, I would ‘flip out’ when I got an eyelash in my eye and had to work it out. Just thinking about having any kind of eye surgery or people invading my eyes is totally stressful. I am also somewhat claustrophobic, and blindness is very black, dark and confining… the ultimate in being locked in a car trunk or trapped in an elevator. My yearly eye exam is always tense, and I breathe a big sigh of relief when I hear that all is well. I am hoping that my eyes remain healthy because facing retinopathy is not anything I could easily deal with (and I’ve been through a lot… breast cancer with chemotherapy, major reconstructive surgery, carpel tunnel surgery, two broken wrists). None of these comes close to the fear I have of going blind.
Having diabetes is frightening and confusing, and the fear of going blind is pervasive, like the humidity of summer. My purpose is to help myself and others make meaning of diabetes and see how we can find greater strength and wellness with the opportunity for