(playful music)
Welcome to "Hadley Presents."
I'm your host, Ricky Enger,
inviting you to sit back, relax,
and enjoy a conversation with the experts.
In this episode, blogger Jeff Flodin
joins us to discuss his journey of vision loss.
Welcome to the show, Jeff.
So great to have you.
Thank you for inviting me to join you.
I'm just sitting back and relaxing.
Thanks.
That's a great thing to do.
It's a Monday morning as we record this.
And so, you sounds like you're starting the week off right.
So I was delighted to discover your blog.
And then I realized, okay, wow,
I have like 12 years of great content to get through.
So really excited about that.
But for people who don't know about you just yet,
give us a little background.
Tell us about yourself.
Thanks, Ricky.
In the summer of 1986,
I was, among other things,
I was driving a '71 Volvo,
jogging about 20 miles a week,
hiking in the Superstition Mountains,
taking photographs with a Canon camera in Kodachrome 64,
reading at least one book a week.
And I was 35 years old,
and I was one month shy of being married.
And I was diagnosed with RP
and told I was gonna go blind.
My initial reaction
was I thought it was the end of the world.
I catastrophized to the point of how would I support myself
if I could no longer drive?
And the ifs became whens,
because the prognosis was pretty clear.
How would I learn when I could no longer read?
How would I avoid leaving the house dressed like a clown?
Predictably, I mean, you've probably heard stories
which are all the same, but they're all different.
I turned in my driver's license three years later,
was declared legally blind four years after that.
And it's been a steady progress,
using the term progress loosely,
to the point of now, 36 years later.
I have light sensitivity.
Haven't seen a face, including my own, for 15 to 20 years.
In some respects, I've beaten the aging process,
because I can't see what I look like.
You know, it's been a process.
It's been a real test of patience and endurance.
I've learned some very valuable things
about patience and tolerance and problem-solving.
All in all, I would've preferred to learn those things
and be the person I've become
with sight, rather than without sight.
But all in all, I'm in a place,
in my head and heart and body,
that it was not the end of the world,
and it didn't even come close.
Well, there you go.
And you've actually chosen
to write about some of that stuff,
which is great, you know, sharing what you're going through
with the world.
And I love the title of your blog.
Of course, it's just begging for an explanation though.
So your blog is entitled "Jalapenos in the Oatmeal:
Digesting Vision Loss."
And that just has such interesting imagery.
And so, I'm curious, how did the title for that come about?
Well, it was 12 years ago
when I was asked by the staff
at what was called the Guild for the Blind,
now is Second Sense in Chicago,
to write a blog.
They said it made sense,
if they were gonna revamp their website,
to have a blog and have that blog be written by a person
who was visually impaired.
And so they chose me.
And I sat down, and I brainstormed titles for the blog.
I had some very practical ones like "Vanishing Point."
And then I had ones like,
"How Can I Tell if This is a Real Skunk?" or
"What I Say When I Lose Something."
So, I think I'm trying to project to you, Ricky,
and to people listening,
that one of the things that has helped me
is not to take myself too damn seriously.
That a sense of humor really evens out
the overarching anxiety and tendency
toward victimhood and self-pity and so on.
And I'm using those words,
because in 1986 when I was diagnosed,
I was 10 years into a social work career.
And I continued that career.
I'm continuing that career to this day,
in terms of facilitating low vision support groups.
In the blog, there are funny ones,
and there are tragic ones,
and there are tear-jerkers,
and there are knee-slappers, and so on.
And "Jalapenos in the Oatmeal: Digesting Vision Loss"
was the one I chose,
primarily because I thought
it operated on more than one level.
One, on the practical level, you know, kitchen mishaps,
throwing jalapenos instead of raisins into the oatmeal,
those kinds of things do happen.
But also, maybe on a more figurative level
that, in life, we don't know what is around the corner.
And so, that's what I chose,
and that's what I hope is conveyed.
What I wanted to try to accomplish with this blog
was, on a personal level,
I'm a strong believer that self-expression
is not only beneficial but therapeutic.
I think that when you can put thoughts into words,
fears down on paper or in the computer, as it were,
that it is part of the grief process,
that it is part of the process
of putting a name to a feeling,
putting feelings out there.
And I had hoped not just for it to be
a self-indulgent diary or journaling,
not so much for myself.
But there was a very important twist of consciousness for me
when I was faced with the invitation
to join a low vision support group in 2008 in Chicago.
I'd been living with RP for over 20 years,
and I thought,
well, I haven't been doing the greatest job in the world,
but, you know, what am I gonna learn
from sitting around a table,
listening to a bunch of other people
talk about their, you know, trials and tribulations?
And then I thought,
well, maybe I could be of help to somebody
who's new in the process.
And that was a sea change for me,
in terms of my selfish consciousness, you know?
I get the biggest kick out of talking to people
who are sighted, who read the blog, and then tell me,
"I had no idea what it was like."
You know, it's stretching the audience
from the people who have low vision
and tune in because maybe it'll help them feel better,
or get an idea of, or give them a laugh, you know?
But educationally, you know,
90% of the sighted public wants to be helpful.
The trick is, they just don't know how sometimes.
You don't grab somebody and pull them across the street
just because the light's changed, you know?
So, that's the story behind the blog.
And as you said at the outset, Ricky,
it's Monday morning, and we're off to a good start.
I send the blog to Second Sense for posting
on Monday morning.
And so, this morning,
I had written a blog in the last couple of weeks,
and I send it, and it just got posted.
So, we are off on a good start,
and it's still Monday morning.
Yes, indeed.
And I know what I will be doing after this recording.
I'm gonna go check out what this morning's post is.
So, you've talked about living with RP
for a little while now.
So, you've had some practice, I guess.
The interesting thing is that,
for a lot of eye conditions,
and RP specifically, for some reason,
there's always something happening.
Like there's research,
there's gonna be gene therapy,
there's, you know, some new drug
that's gonna do some miraculous thing.
And there's always something that is just over the horizon,
which is great,
because it gives people some hope
that things might be different,
that they might regain some of that sight
that they're losing.
And yet, there is now.
So there's living with what is.
And it just seems like it would be difficult
to find that balance
between having that hope for something that might be,
and at the same time,
being able to live with and accept what is now.
How have you found that balance yourself?
Or is it still something you're working on?
Oh, it's something that's working on,
I am a work in progress.
Just as my eyesight is progressively getting worse,
in my social work career
I came up against an organization that said,
"Keep your eyes on shore, but row like hell."
In that respect, yes.
Since 1986 in my annual eye exams,
the doctors have said,
"Keep the faith, because there's research going on."
I've been hearing that for a long, long time.
And I appreciate the research that's going on, you know?
RP is a retinal degenerative disease.
I've learned through Foundation Fighting Blindness,
and other sources,
about the research that's going on.
I learned about the gizmos and gadgets
as my eyesight has gotten worse
and I've needed to go from magnification
to screen reading, for example,
to labeling systems,
to gizmos and gadgets that we have had to learn
so that we can maintain the level of quality of life
that we want.
I had the occasion, about 10 years ago,
to look for counseling
in the post-traumatic stress disorder area.
And I realized that, with progressive vision loss,
there is no post-trauma,
because there is no post in the trauma.
It's always happening.
And if you can minimize the disorder end of it,
you have traumatic stress.
Instead of PTSD, you have TS, traumatic stress.
That's how you learn to live.
And what I have tried to do is put faith in research,
faith in bigger and better gizmos and gadgets.
And I look at faith as like hope with legs,
hope with energy.
But at the same time,
I am subject to the human character defect of denial.
And if I chose not to get white cane training in 1995,
because I was fully certain
that there would be a cure for RP
within the next five years,
then I would've been five years behind where I needed to be.
So, I need to keep rowing the boat,
but also keep hoping for that I'll hit shore pretty soon.
Now I'm 72 years old, Ricky.
And it's like my hope now,
for treatment and cure for the next generation.
And that sounds like a very realistic
thing to hope for,
I think.
I love the balance
between wanting something to be different
and hoping for that,
and at the same time,
understanding that you gotta help yourself as well.
I think that maybe that's one part
of adjusting to vision loss.
I know that when we talk about adjusting to vision loss,
you know, there's this expectation,
both for the person doing that adjustment
and for people who are watching it happen,
there's this thought of like, okay, well,
when you reach step five in the pamphlet, or whatever,
then it's over, it's done,
you've arrived, you're all adjusted.
But that doesn't feel likely, I guess.
So, can you talk a little about your process of adjustment?
And is it kind of a continuous thing?
How do you work through that knowledge
that every day you don't know what to expect,
and there might be something new and unexpected
that you're adjusting to?
At the time I was diagnosed,
I was 10 years into a social work career.
And I had been taught in school,
and I had used in my social work,
the five stages of grief developed by Elizabeth Kubler-Ross,
denial, anger, depression,
bargaining, and acceptance.
And I thought, well, I have a good understanding of that.
So, I'm just gonna breeze through those stages.
I'll give maybe the first four, maybe six months each, okay?
So then, within two years,
I'm gonna be in the acceptance stage,
which I thought about
as being like this big meadow with daisies in it,
where you just roll around and everything is behind you,
in terms of the trauma and the grief and the loss.
And I was never more wrong in my life.
I have learned that, however many stages of grief there are,
and I know that the Tuttles,
in their book "Self-Esteem and Adjusting with Blindness,"
which is a really good book,
and it's on NLS and so on, as an audio book,
is they have seven stages of grief.
And I think they point out a couple things,
in terms of there are some stages
where counseling does not help,
because you're not ready for it.
You know, when you're angry, you don't hear very well.
And you have to be able to hear and process information
in order to continue through the stages.
So, that was a life experience for me
in which I didn't think it was gonna be a snap,
but I didn't think it was gonna be such that one day,
when I was working in Chicago,
walking to and from work with my guide dog,
I had a really good day at work,
so I felt more along the acceptance end of things.
And then I started to cross Western Avenue
against the light,
and I got four or five steps into the intersection
and realized that I was crossing against the light.
And I scooted back, with the dog, to the curb.
And I went right back into anger and denial and depression.
It's like, how could I do such a stupid thing?
So, it's like the fluidity of those stages,
and the fluidity of how you feel about yourself
and your place in the world,
are almost constantly going.
This adjustment is gonna continue the rest of my life.
And it's not just adjusting to my eyesight.
It's adjusting to the place in the world
that people with disabilities have.
What I realized too, in terms of what my responsibility was,
was I could rely on sighted guides,
and I can rely on guide dogs,
and I can rely on technology,
but I am the one who has to keep myself up to date
with what's out there.
To take the next step proactively,
like to learn braille from Hadley, which I did.
Those kinds of things.
I have a lot of friends, I have a lot of support,
but I'm the one who has to keep things moving forward.
Right.
And it sounds like you're doing that
with that essential bit of humor mixed in. (chuckles)
Yeah, it's the great equalizer.
You know, you mentioned you're 72 now.
And so, you've been at this for a little while.
And you've learned a lot, I imagine.
Some of it was probably not easy to learn.
There were undoubtedly some struggles that you faced
and came out on the other side,
and probably some you're still working through.
But is there anything that you wish you had heard
closer to the beginning of your journey
that might have made things easier or different,
or might have saved you just some of those struggles
that you've gone through?
I used the analogy
when I worked in the hospital in Philadelphia.
The scenario that would present itself,
which I kinda adapted for my own purposes,
was the doctor tells the patient
that the patient has cancer.
And the doctor says, "That's your diagnosis,
and the nurse is gonna tell you
how we're going to treat it."
So, the nurse tells the patient
how they're going to do chemotherapy
and so on, and so forth.
And then the nurse says,
"And the social worker's gonna tell you
how to live with it."
It's up to me to find how to go about dealing with this.
Some of the things that I have as mantras are,
"I am not alone,"
because blindness is a very isolating condition.
"It's not my fault."
I have a tendency, if I can't be perfect,
to feel that I am deficient,
and my eyesight is not perfect.
And to the level of deficiency
in my activities of daily living,
or in my psyche, or whatever, is totally up to me.
Ask for help and be open to receiving it.
Repeat after me the serenity prayer several times a day,
about recognizing that events outside of me
are beyond my control,
and asking for the courage to take the appropriate action.
A lot of people have some horror stories
about being diagnosed
and then kind of like set adrift to fend for themselves.
I think that is something
that people have been working on for decades,
about how to build in some support systems
to, you know, the medical end of things.
But there are places out there.
There's Hadley, there's Foundation Fighting Blindness,
there's gizmos and gadgets,
there's support groups.
You have to stay connected.
You have to find something that gives you pleasure
and makes you feel like you are still
a useful and contributing member of your pack or society.
That's very well said, thank you, Jeff.
All very important things for people to hear,
regardless of where they are in their journey.
So yeah, we appreciate that.
We will have links in our show notes
to any books that were mentioned here,
and of course, to your blog, "Jalapenos in the Oatmeal."
Looking forward to continuing to read those installments.
Any final thoughts to leave us with
before we wrap things up?
Thanks, Ricky.
No, thank you for this opportunity to talk to you
and the people who tune into this podcast.
So, thanks for the chance to talk to you.
Absolutely.
Thank you so much for spending a little time with us.
Got something to say?
Share your thoughts about this episode of "Hadley Presents"
or make suggestions for future episodes.
We'd love to hear from you.
Send us an email at podcast@hadley.edu,
that's P-O-D-C-A-S-T @hadley.edu,
or leave us a message at (847) 784-2870.
Thanks for listening.
(gentle music ending)