"I had to deal with the reality of the situation"

Hadley

“I had to deal with the reality of the situation”

Pat: It's not easy taking action because when you first find out you're losing your vision, it is devastating. It is overwhelming. You don't see that there is even a future. You can't imagine your future.

Marc: This is Hadley’s Insights and Sound Bites, where people facing vision loss share what has helped them cope and adjust.

Pat: My name is Pat Kosmerl. I live in Chicago, and I always had quite good vision. Even in fact, in my 50s, I finally started wearing reading glasses. But I noticed that I was having a hard time reading, and I thought quite frankly, that it was just a simple matter of getting a new prescription for my reading glasses. So, I went to see my optometrist, and now I will fast forward eight months because there were a series of appointments with ophthalmologists, neuro ophthalmologists, retinal doctors, and retinal specialists.

But finally I was diagnosed with a rare inherited retinal disease that is a form of cone dystrophy and it's called occult Macular Dystrophy. And at the time I can remember that the doctor who came in to talk to me said, the good news is that you'll not go completely blind, but your life will change forever. And indeed, that is what happened. So, at that point, the vision loss was in my left eye, but it gradual went to my right eye. So, within less than a year of that diagnosis, I actually was deemed legally blind. So, my vision loss was quite rapid and quite unexpected.

By far, the biggest difficulty for me with my vision loss is not recognizing people's faces because we don't realize when you are perfectly sighted, how many times you use that to kind of understand is someone listening to you? Is someone looking at you? Is someone bored by your conversation? Is someone excited by your conversation? So that is very, very, very, very difficult.

I have always been very outgoing and an extrovert, and I have to, I don't want to say force myself, but it takes more courage for me to walk into a room where I don't, well, I don't really go places where I don't know anyone because that is much more difficult now.

One of the hardest things with vision loss is accepting your vision loss. And that is why I think many people, including myself, when I first found out I was losing my vision, I knew that there was a therapist, who has worked with visually impaired people, and he made it very clear to me, this is a loss like any other loss, like a death where you're going to go through these phases of grief and frustration and anger, and finally getting to acceptance. And what I want to do for people who are losing their vision, they're at the very beginning of their vision loss. I would like them maybe to understand what I wish I had known five years ago, and I lost my vision because that process can be long to acceptance, and I'd like to think that maybe I can give some clues that might shorten that process.

So, I look at acceptance as kind of two sides to it. One is the acceptance of not looking backwards, because one of the things you have a tendency to do is to want to make comparisons with, I used to be able to see that. I used to be able to do that.

But that doesn't happen automatically. I think it's a very normal thing to compare what you could do before. The other thing in my case was also accepting the fact that it's not something that I did because maybe it's my own personal nature, but when I first started losing my vision, I thought, oh my gosh, I never wore sunglasses when I would go to along Lake Michigan when I was in my twenties, I didn't want to have tan lines on my face.

Is that what contributed to my vision loss? Is it because I took this particular medication? What is it that I might've done? And I had this tendency, this was me, to want to blame myself for my vision loss.

Acceptance is realizing it doesn't matter what caused it. Now you just have to deal with the reality of the situation. It's being realistic about what you need to do. And I think what helps, in my case, be realistic, is accepting it and saying, alright, I now have to take action. It's not easy taking action because when you first find out you're losing your vision, it is devastating. It is overwhelming. You don't see that there is even a future. You can't imagine your future.

And I started losing my vision rapidly but in my case, one of the first things I did was try to find resources. And I am very grateful for my background in the business world because I was in sales and marketing. I had many clients over the years, and when my clients had a problem, I knew that there were resources that I would find to try to fix that problem. And that was my goal. And I will say that my goal has changed in a way because at the beginning, my whole view of fixing the problem was finding the genetic cause, getting involved with the clinical trial, doing the clinical trial, and bingo, my vision would be restored.

So, it took me a while to realize this will not be fixed. That's another part actually of acceptance, is realizing maybe there won't be an actual fix. The vision I have now is the vision I'm going to continue to have, and it might actually get worse. So that's where resources are so important. So, in my case, because I have a friend from college who is completely blind, and she's one of the first people I called, when I found out I was losing my vision. She mentioned to me the Lighthouse. She happens to live in Minneapolis. And I said, Kathy, I'm sure there's a Lighthouse in Chicago. And I went to the Lighthouse, and then she had also used Hadley in the past. And so right off the bat, she introduced me to two of the most important resources for me, which is the Lighthouse and Hadley.

I joined a Facebook group that was for cone dystrophy, which is my diagnosis. And also, I joined a group for assistive technology for the blind and visually impaired.

One of the other things that I think is really important when you've lost your vision is that people around you may have known you as a person with normal vision, and all of a sudden they don't know how to handle you. Or maybe they don't really even believe that you're visually impaired because you might not look it. So one of the things that I think is important is learning how to educate people.

And I know in my mind, I thought you were blind, or you could see. I had no idea of the spectrum of vision loss or the types of causes of vision loss. I now know that. And in my case, since my vision loss is central vision loss, I try to explain to people that I see in a fog. I don't see directly in front of me. I don't recognize faces. And the way that has been helpful for me is people that I feel comfortable telling them. I say, if you see me on the street, or if you see me in the hallway, or if you see me somewhere, please say, ‘hi, Pat, this is Joan,’ because I may not recognize you.

At the very beginning when I would go to a store, I wouldn't tell people that I was visually impaired. But now if I'm checking out, I often say, ‘I'm visually impaired. Please, I might need help with, if there's a device where I have to use my credit card.’ And I just let people know right off the bat, so they don't wonder why I am fumbling or why I'm not being as responsive as I should be.

And I have found, the minute you say that right away, people are more attentive to whatever your needs might be, sometimes overly attentive, but I'd rather maybe over attentive than not attentive at all. Sometimes you can't do something without having to call a call center or someone calls you for information. In the past, I was hesitant to say anything, but now I try to get the person's name and I say, ‘oh, Joan, thank you for taking my call before we talk about my issue. Let me just let you know that I'm visually impaired. It might take me longer to write down information that you give me or for me to give you information.’ I know it's something so simple, but it reduces that feeling of stress that, oh my gosh, I've got to find that card number.

It gives you the time to feel comfortable. So that's really an issue of education, partially advocacy.

So, the last thing that I would say that has helped me is that I now look back to that panicked person that I was five years ago. And I got the diagnosis and I realized that all of these little factors have added up. And if I can, I want to help others shorten that path or not realize, how much easier things can be.

It's a hard road and this is where Hadley or the Lighthouse or all sorts of organizations, they're there to help you. And they will make that trip shorter and easier. You are not alone. I mean, it's so trite to say, but you are not alone. Find the resources, give yourself time, and you'll get there.

Marc: You never know who might need to hear your story. If you’d like to share with us, just leave us a message on our Insights & Sound Bites voicemail. By calling, 847-512-4867. Or, you can use your smartphone or computer and email us a recording to [email protected].