living with age-related macular degeneration (amd): learning to 'concentrate on what i can do and what i can see'
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waltraud greif, a career photographer, lost much of her sight because of amd, but she remains grateful for the things she can still do and see.
waltraud greif
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waltraud greif spent her life looking through the lens of a camera, working as a freelance photographer, seeing the world in ways only someone with a special type of vision can. then, she began noticing changes in her eyesight in 1999 when she would look at the sky and notice a dark spot in the centre of her vision, before it worsened into lines becoming crooked and distorted faces.
before she began experiencing the symptoms of age-related macular degeneration (amd), the cause of her vision changes, wiltraud’s sight was “twice as good as normal.”
at the time, the treatments available today weren’t around, so she was only able to experience older therapies that didn’t do much for her progressively worsening eye disease.
she did photodynamic therapy, a type of treatment she notes “came just under the wire,” but it didn’t do much and could be painful to endure. during that time, she dealt with fluid behind her retina that made matters worse.
“that really, really had a major influence on how i could see and also was very upsetting,” she said.
by the time injectables came out that could make a difference in 2005, she was already deemed legally blind from the deterioration that occurred.
“i could run into somebody and stand a few feet away from them and not recognize who they are,” she said. “reading street signs, reading bus numbers, even store signs … if they’re across the stress from me, it doesn’t matter. i can’t read them even if they’re in huge print.”
dealing with immeasurable loss in more than one way
prior to losing her sight, waltraud only dealt with vision loss second-hand. her husband had uncontrolled glaucoma, but she didn’t worry about it because her vision was so good. she notes that before she was diagnosed, she felt “invincible” in a way because of her impeccable ability to see.
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it wasn’t until her diagnosis that she realized that wasn’t the case, and she could feel her career as a photographer slowly slipping away.
“i was completely, totally devastated,” she said. “i couldn’t stop crying for days on end. it was just awful.”
while waltraud still dabbles in photography, mostly on her phone, she admits that she has lost the ability to perform the post-production aspects of the job that are required, leaving her to transition from career photographer to hobbyist.
“i still have really good cameras, not the professional tech cameras that i don’t use so much because shooting raw means i have to do post-production processing and that’s on my computer,” she said. “it’s a bit more cumbersome, and it also creates all kinds of visual problems for me because if i stare for too long, especially on the screen, then i get superimposed patterns forming.”
she notes that when she looked into her disease on her own, the information she found wasn’t entirely accurate either, leading to even more fear and emotional turmoil.
“i was fearing that i would be living in this darkness with just a little rim of vision around the periphery,” she said. “it’s not quite like that.”
at the time, waltraud’s husband did his best to keep her spirits up, letting her know that she wouldn’t have to go through the entire ordeal alone. but in 2005, around the time she was given legally blind status, she lost him, too.
“my husband used to always say to me that you may have lost your sight, but you haven’t lost your vision, and he always used to say, we’re a team, don’t worry about it,” she said. “then he died in 2005.”
another loss that significantly impacted waltraud was the loss of her ability to drive, something she had both needed and enjoyed doing throughout her life.
“that was one of the really hard ones,” she said.
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leaning into newer treatments and supports
around the time waltraud lost her husband, a new injectable treatment was approved for use in people with amd. while it could not correct the vision loss, it was a helpful aid in slowing the deterioration of her vision.
at the beginning, she would take one injection to see how she responded to it before getting a second. today, the therapy has advanced further, and now she has one injection every 12 weeks. waltraud is grateful that the treatment and other interventions are continuously evolving and being created to help her and others with amd.
“i think by now, they have a good idea how to deal with it,” she said.
some years later, just before the covid-19 pandemic, waltraud also joined a community at fighting blindness after her retina specialist suggested she get involved. through that community, she was able to learn about new treatments on the horizon, participate in webinars and conferences, and connect with others who are going through similar experiences.
“that whole support, i think it’s really great,” she said.
learning how to navigate the world differently
even without full eyesight, waltraud does what she can to stay independent. she still lives on her own and takes care of herself, and as long as she’s in her hometown of vancouver, she knows how to get around with ease. but when she chooses to venture off her beaten path, her ability to get around decreases, causing her to find ways to adapt so that she doesn’t have to stop living the life she wants.
“i went to germany a few years ago (and) i had to have someone help me at the airport to get me to the next plane because for me, finding all these things is close to impossible, especially when i’m in a hurry,” she said. “it can get really tough.”
aside from finding help from others, waltraud is also grateful for the technologies available to her in today’s modern society—those technologies that weren’t around in 2005 when her journey with blindness started.
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“learning how to use different kinds of technology to help along makes a huge difference,” she said.
focusing on the good with amd
although waltraud has suffered a lot due to amd, she does her best not to focus on the negatives. her goal is to focus on the good that she still has in her life, regardless of her vision.
“i am most grateful that i still see what i can see,” she said. “i keep reminding myself to concentrate on what i can do and what i can see, and that’s sort of a turning switch in a way to not dwell on what i can’t do anymore.”
she admits that it’s not always easy to focus on the good, and those impactful losses she’s dealt with along the way come to the forefront now and again, but she does her best to let go of them when they arise.
“you can’t help but know it’s there, but just to concentrate more on the things i can do and the friends i have, the support i have, the animal that i have,” she said.
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