WEBVTT

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(playful music)

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Welcome to "Hadley Presents."

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I'm your host, Ricky Enger,

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inviting you to sit back, relax,

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and enjoy a conversation with the experts.

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In this episode, blogger Jeff Flodin

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joins us to discuss his journey of vision loss.

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Welcome to the show, Jeff.

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So great to have you.

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Thank you for inviting me to join you.

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I'm just sitting back and relaxing.

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Thanks.

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That's a great thing to do.

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It's a Monday morning as we record this.

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And so, you sounds like you're starting the week off right.

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So I was delighted to discover your blog.

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And then I realized, okay, wow,

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I have like 12 years of great content to get through.

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So really excited about that.

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But for people who don't know about you just yet,

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give us a little background.

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Tell us about yourself.

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Thanks, Ricky.

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In the summer of 1986,

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I was, among other things,

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I was driving a '71 Volvo,

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jogging about 20 miles a week,

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hiking in the Superstition Mountains,

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taking photographs with a Canon camera in Kodachrome 64,

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reading at least one book a week.

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And I was 35 years old,

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and I was one month shy of being married.

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And I was diagnosed with RP

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and told I was gonna go blind.

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My initial reaction

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was I thought it was the end of the world.

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I catastrophized to the point of how would I support myself

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if I could no longer drive?

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And the ifs became whens,

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because the prognosis was pretty clear.

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How would I learn when I could no longer read?

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How would I avoid leaving the house dressed like a clown?

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Predictably, I mean, you've probably heard stories

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which are all the same, but they're all different.

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I turned in my driver's license three years later,

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was declared legally blind four years after that.

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And it's been a steady progress,

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using the term progress loosely,

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to the point of now, 36 years later.

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I have light sensitivity.

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Haven't seen a face, including my own, for 15 to 20 years.

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In some respects, I've beaten the aging process,

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because I can't see what I look like.

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You know, it's been a process.

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It's been a real test of patience and endurance.

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I've learned some very valuable things

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about patience and tolerance and problem-solving.

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All in all, I would've preferred to learn those things

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and be the person I've become

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with sight, rather than without sight.

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But all in all, I'm in a place,

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in my head and heart and body,

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that it was not the end of the world,

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and it didn't even come close.

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Well, there you go.

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And you've actually chosen

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to write about some of that stuff,

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which is great, you know, sharing what you're going through

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with the world.

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And I love the title of your blog.

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Of course, it's just begging for an explanation though.

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So your blog is entitled "Jalapenos in the Oatmeal:

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Digesting Vision Loss."

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And that just has such interesting imagery.

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And so, I'm curious, how did the title for that come about?

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Well, it was 12 years ago

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when I was asked by the staff

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at what was called the Guild for the Blind,

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now is Second Sense in Chicago,

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to write a blog.

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They said it made sense,

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if they were gonna revamp their website,

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to have a blog and have that blog be written by a person

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who was visually impaired.

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And so they chose me.

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And I sat down, and I brainstormed titles for the blog.

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I had some very practical ones like "Vanishing Point."

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And then I had ones like,

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"How Can I Tell if This is a Real Skunk?" or

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"What I Say When I Lose Something."

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So, I think I'm trying to project to you, Ricky,

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and to people listening,

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that one of the things that has helped me

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is not to take myself too damn seriously.

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That a sense of humor really evens out

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the overarching anxiety and tendency

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toward victimhood and self-pity and so on.

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And I'm using those words,

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because in 1986 when I was diagnosed,

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I was 10 years into a social work career.

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And I continued that career.

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I'm continuing that career to this day,

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in terms of facilitating low vision support groups.

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In the blog, there are funny ones,

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and there are tragic ones,

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and there are tear-jerkers,

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and there are knee-slappers, and so on.

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And "Jalapenos in the Oatmeal: Digesting Vision Loss"

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was the one I chose,

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primarily because I thought

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it operated on more than one level.

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One, on the practical level, you know, kitchen mishaps,

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throwing jalapenos instead of raisins into the oatmeal,

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those kinds of things do happen.

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But also, maybe on a more figurative level

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that, in life, we don't know what is around the corner.

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And so, that's what I chose,

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and that's what I hope is conveyed.

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What I wanted to try to accomplish with this blog

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was, on a personal level,

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I'm a strong believer that self-expression

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is not only beneficial but therapeutic.

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I think that when you can put thoughts into words,

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fears down on paper or in the computer, as it were,

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that it is part of the grief process,

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that it is part of the process

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of putting a name to a feeling,

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putting feelings out there.

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And I had hoped not just for it to be

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a self-indulgent diary or journaling,

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not so much for myself.

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But there was a very important twist of consciousness for me

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when I was faced with the invitation

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to join a low vision support group in 2008 in Chicago.

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I'd been living with RP for over 20 years,

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and I thought,

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well, I haven't been doing the greatest job in the world,

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but, you know, what am I gonna learn

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from sitting around a table,

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listening to a bunch of other people

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talk about their, you know, trials and tribulations?

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And then I thought,

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well, maybe I could be of help to somebody

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who's new in the process.

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And that was a sea change for me,

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in terms of my selfish consciousness, you know?

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I get the biggest kick out of talking to people

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who are sighted, who read the blog, and then tell me,

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"I had no idea what it was like."

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You know, it's stretching the audience

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from the people who have low vision

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and tune in because maybe it'll help them feel better,

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or get an idea of, or give them a laugh, you know?

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But educationally, you know,

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90% of the sighted public wants to be helpful.

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The trick is, they just don't know how sometimes.

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You don't grab somebody and pull them across the street

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just because the light's changed, you know?

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So, that's the story behind the blog.

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And as you said at the outset, Ricky,

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it's Monday morning, and we're off to a good start.

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I send the blog to Second Sense for posting

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on Monday morning.

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And so, this morning,

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I had written a blog in the last couple of weeks,

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and I send it, and it just got posted.

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So, we are off on a good start,

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and it's still Monday morning.

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Yes, indeed.

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And I know what I will be doing after this recording.

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I'm gonna go check out what this morning's post is.

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So, you've talked about living with RP

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for a little while now.

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So, you've had some practice, I guess.

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The interesting thing is that,

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for a lot of eye conditions,

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and RP specifically, for some reason,

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there's always something happening.

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Like there's research,

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there's gonna be gene therapy,

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there's, you know, some new drug

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that's gonna do some miraculous thing.

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And there's always something that is just over the horizon,

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which is great,

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because it gives people some hope

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that things might be different,

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that they might regain some of that sight

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that they're losing.

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And yet, there is now.

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So there's living with what is.

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And it just seems like it would be difficult

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to find that balance

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between having that hope for something that might be,

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and at the same time,

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being able to live with and accept what is now.

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How have you found that balance yourself?

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Or is it still something you're working on?

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Oh, it's something that's working on,

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I am a work in progress.

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Just as my eyesight is progressively getting worse,

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in my social work career

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I came up against an organization that said,

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"Keep your eyes on shore, but row like hell."

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In that respect, yes.

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Since 1986 in my annual eye exams,

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the doctors have said,

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"Keep the faith, because there's research going on."

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I've been hearing that for a long, long time.

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And I appreciate the research that's going on, you know?

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RP is a retinal degenerative disease.

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I've learned through Foundation Fighting Blindness,

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and other sources,

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about the research that's going on.

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I learned about the gizmos and gadgets

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as my eyesight has gotten worse

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and I've needed to go from magnification

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to screen reading, for example,

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to labeling systems,

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to gizmos and gadgets that we have had to learn

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so that we can maintain the level of quality of life

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that we want.

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I had the occasion, about 10 years ago,

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to look for counseling

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in the post-traumatic stress disorder area.

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And I realized that, with progressive vision loss,

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there is no post-trauma,

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because there is no post in the trauma.

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It's always happening.

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And if you can minimize the disorder end of it,

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you have traumatic stress.

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Instead of PTSD, you have TS, traumatic stress.

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That's how you learn to live.

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And what I have tried to do is put faith in research,

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faith in bigger and better gizmos and gadgets.

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And I look at faith as like hope with legs,

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hope with energy.

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But at the same time,

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I am subject to the human character defect of denial.

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And if I chose not to get white cane training in 1995,

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because I was fully certain

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that there would be a cure for RP

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within the next five years,

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then I would've been five years behind where I needed to be.

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So, I need to keep rowing the boat,

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but also keep hoping for that I'll hit shore pretty soon.

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Now I'm 72 years old, Ricky.

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And it's like my hope now,

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for treatment and cure for the next generation.

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And that sounds like a very realistic

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thing to hope for,

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I think.

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I love the balance

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between wanting something to be different

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and hoping for that,

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and at the same time,

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understanding that you gotta help yourself as well.

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I think that maybe that's one part

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of adjusting to vision loss.

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I know that when we talk about adjusting to vision loss,

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you know, there's this expectation,

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both for the person doing that adjustment

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and for people who are watching it happen,

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there's this thought of like, okay, well,

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when you reach step five in the pamphlet, or whatever,

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then it's over, it's done,

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you've arrived, you're all adjusted.

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But that doesn't feel likely, I guess.

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So, can you talk a little about your process of adjustment?

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And is it kind of a continuous thing?

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How do you work through that knowledge

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that every day you don't know what to expect,

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and there might be something new and unexpected

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that you're adjusting to?

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At the time I was diagnosed,

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I was 10 years into a social work career.

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And I had been taught in school,

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and I had used in my social work,

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the five stages of grief developed by Elizabeth Kubler-Ross,

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denial, anger, depression,

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bargaining, and acceptance.

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And I thought, well, I have a good understanding of that.

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So, I'm just gonna breeze through those stages.

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I'll give maybe the first four, maybe six months each, okay?

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So then, within two years,

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I'm gonna be in the acceptance stage,

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which I thought about

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as being like this big meadow with daisies in it,

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where you just roll around and everything is behind you,

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in terms of the trauma and the grief and the loss.

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And I was never more wrong in my life.

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I have learned that, however many stages of grief there are,

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and I know that the Tuttles,

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in their book "Self-Esteem and Adjusting with Blindness,"

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which is a really good book,

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and it's on NLS and so on, as an audio book,

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is they have seven stages of grief.

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And I think they point out a couple things,

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in terms of there are some stages

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where counseling does not help,

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because you're not ready for it.

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You know, when you're angry, you don't hear very well.

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And you have to be able to hear and process information

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in order to continue through the stages.

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So, that was a life experience for me

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in which I didn't think it was gonna be a snap,

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but I didn't think it was gonna be such that one day,

307
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when I was working in Chicago,

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walking to and from work with my guide dog,

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I had a really good day at work,

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so I felt more along the acceptance end of things.

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And then I started to cross Western Avenue

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against the light,

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and I got four or five steps into the intersection

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and realized that I was crossing against the light.

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And I scooted back, with the dog, to the curb.

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And I went right back into anger and denial and depression.

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It's like, how could I do such a stupid thing?

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So, it's like the fluidity of those stages,

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and the fluidity of how you feel about yourself

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and your place in the world,

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are almost constantly going.

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This adjustment is gonna continue the rest of my life.

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And it's not just adjusting to my eyesight.

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It's adjusting to the place in the world

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that people with disabilities have.

326
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What I realized too, in terms of what my responsibility was,

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was I could rely on sighted guides,

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and I can rely on guide dogs,

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and I can rely on technology,

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but I am the one who has to keep myself up to date

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with what's out there.

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To take the next step proactively,

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like to learn braille from Hadley, which I did.

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Those kinds of things.

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I have a lot of friends, I have a lot of support,

336
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but I'm the one who has to keep things moving forward.

337
00:17:37.200 --> 00:17:38.033
Right.

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00:17:38.033 --> 00:17:39.990
And it sounds like you're doing that

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with that essential bit of humor mixed in. (chuckles)

340
00:17:43.980 --> 00:17:47.784
Yeah, it's the great equalizer.

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You know, you mentioned you're 72 now.

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And so, you've been at this for a little while.

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And you've learned a lot, I imagine.

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Some of it was probably not easy to learn.

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There were undoubtedly some struggles that you faced

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and came out on the other side,

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and probably some you're still working through.

348
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But is there anything that you wish you had heard

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00:18:10.950 --> 00:18:12.840
closer to the beginning of your journey

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that might have made things easier or different,

351
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or might have saved you just some of those struggles

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that you've gone through?

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I used the analogy

354
00:18:22.680 --> 00:18:26.940
when I worked in the hospital in Philadelphia.

355
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The scenario that would present itself,

356
00:18:29.550 --> 00:18:33.510
which I kinda adapted for my own purposes,

357
00:18:33.510 --> 00:18:36.180
was the doctor tells the patient

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that the patient has cancer.

359
00:18:38.550 --> 00:18:41.460
And the doctor says, "That's your diagnosis,

360
00:18:41.460 --> 00:18:42.780
and the nurse is gonna tell you

361
00:18:42.780 --> 00:18:44.160
how we're going to treat it."

362
00:18:44.160 --> 00:18:45.630
So, the nurse tells the patient

363
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how they're going to do chemotherapy

364
00:18:47.250 --> 00:18:48.330
and so on, and so forth.

365
00:18:48.330 --> 00:18:49.453
And then the nurse says,

366
00:18:49.453 --> 00:18:51.570
"And the social worker's gonna tell you

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00:18:51.570 --> 00:18:52.860
how to live with it."

368
00:18:52.860 --> 00:18:57.860
It's up to me to find how to go about dealing with this.

369
00:18:59.550 --> 00:19:04.550
Some of the things that I have as mantras are,

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00:19:04.747 --> 00:19:06.300
"I am not alone,"

371
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because blindness is a very isolating condition.

372
00:19:11.527 --> 00:19:14.220
"It's not my fault."

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00:19:14.220 --> 00:19:17.280
I have a tendency, if I can't be perfect,

374
00:19:17.280 --> 00:19:19.290
to feel that I am deficient,

375
00:19:19.290 --> 00:19:22.200
and my eyesight is not perfect.

376
00:19:22.200 --> 00:19:24.510
And to the level of deficiency

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00:19:24.510 --> 00:19:27.600
in my activities of daily living,

378
00:19:27.600 --> 00:19:31.743
or in my psyche, or whatever, is totally up to me.

379
00:19:32.610 --> 00:19:37.233
Ask for help and be open to receiving it.

380
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Repeat after me the serenity prayer several times a day,

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about recognizing that events outside of me

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00:19:48.570 --> 00:19:51.000
are beyond my control,

383
00:19:51.000 --> 00:19:56.000
and asking for the courage to take the appropriate action.

384
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A lot of people have some horror stories

385
00:20:00.120 --> 00:20:02.670
about being diagnosed

386
00:20:02.670 --> 00:20:07.670
and then kind of like set adrift to fend for themselves.

387
00:20:08.730 --> 00:20:10.470
I think that is something

388
00:20:10.470 --> 00:20:13.380
that people have been working on for decades,

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00:20:13.380 --> 00:20:17.430
about how to build in some support systems

390
00:20:17.430 --> 00:20:21.480
to, you know, the medical end of things.

391
00:20:21.480 --> 00:20:23.700
But there are places out there.

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There's Hadley, there's Foundation Fighting Blindness,

393
00:20:26.760 --> 00:20:28.601
there's gizmos and gadgets,

394
00:20:28.601 --> 00:20:31.350
there's support groups.

395
00:20:31.350 --> 00:20:35.460
You have to stay connected.

396
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You have to find something that gives you pleasure

397
00:20:39.480 --> 00:20:42.238
and makes you feel like you are still

398
00:20:42.238 --> 00:20:47.238
a useful and contributing member of your pack or society.

399
00:20:48.810 --> 00:20:50.820
That's very well said, thank you, Jeff.

400
00:20:50.820 --> 00:20:55.050
All very important things for people to hear,

401
00:20:55.050 --> 00:20:57.630
regardless of where they are in their journey.

402
00:20:57.630 --> 00:21:00.240
So yeah, we appreciate that.

403
00:21:00.240 --> 00:21:02.850
We will have links in our show notes

404
00:21:02.850 --> 00:21:05.400
to any books that were mentioned here,

405
00:21:05.400 --> 00:21:09.450
and of course, to your blog, "Jalapenos in the Oatmeal."

406
00:21:09.450 --> 00:21:13.410
Looking forward to continuing to read those installments.

407
00:21:13.410 --> 00:21:15.210
Any final thoughts to leave us with

408
00:21:15.210 --> 00:21:17.490
before we wrap things up?

409
00:21:17.490 --> 00:21:18.480
Thanks, Ricky.

410
00:21:18.480 --> 00:21:21.720
No, thank you for this opportunity to talk to you

411
00:21:21.720 --> 00:21:25.238
and the people who tune into this podcast.

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00:21:25.238 --> 00:21:29.100
So, thanks for the chance to talk to you.

413
00:21:29.100 --> 00:21:29.933
Absolutely.

414
00:21:29.933 --> 00:21:32.500
Thank you so much for spending a little time with us.

415
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Got something to say?

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00:21:35.340 --> 00:21:38.430
Share your thoughts about this episode of "Hadley Presents"

417
00:21:38.430 --> 00:21:40.980
or make suggestions for future episodes.

418
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We'd love to hear from you.

419
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Send us an email at podcast@hadley.edu,

420
00:21:46.920 --> 00:21:51.920
that's P-O-D-C-A-S-T @hadley.edu,

421
00:21:52.170 --> 00:21:54.813
or leave us a message at (847) 784-2870.

422
00:21:58.560 --> 00:21:59.547
Thanks for listening.

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(gentle music ending)