(upbeat music)
>> Hello and welcome to Access Wilmer.
I am Jo Merlau and we are here today to get up close
and personal with the clinician-scientists,
our amazing doctors and our researchers here at Wilmer.
Today our guest is Dr. Bonnielin Swenor.
She is an Associate Professor and epidemiologist
here at Wilmer.
Welcome Dr. Swenor.
>> Thank you so much.
>> So happy to have you.
>> Happy to be here.
>> So you are one of the country's prominent scholars
in low vision and aging.
You are exploring why so few people receive
low vision rehabilitation services
and we'll get into that.
But what I wanna do first, I wanna talk about you.
You live in this determined, focused, loving life
with your family and supportive professional environment.
What happened to you when you were 26 years old?
>> Yeah, so when I was 26 I was on my way to work,
I was living in D.C. and I was walking up the Metro steps
on a bright, sunny day in January
and about halfway up the Metro steps
something in my vision changed very suddenly
and I thought it was just the after-image from the sun
but as I got to the top of the Metro steps
and then to my office, that change in my vision
just wasn't going away, wasn't going away.
and I was having a hard time reading email, seeing, focusing
and so I went to the first floor of my office building
where there was an optometrist 'cause I did not know
what else to do and I said,
"Can you just take a look and see what's going on?"
He took me back right away and looked in the back of my eye
and all of a sudden his face just changed,
the way he talked to me changed and said,
"You need to see a retina specialist immediately."
I didn't even know a retina specialist existed
at that point in my life.
I wasn't studying ophthalmology, that was a new term to me.
So I went across town to a retina specialist
and I was diagnosed with myopic macular degeneration.
And was told that I had a hemorrhage in the back of my eye
in the retina that was causing that vision impairment.
What I didn't realize on that day
was that my vision impairment was permanent
and degenerative and would continue.
And so over the following 18 months
I had a pretty quick loss of vision in both eyes,
many hemorrhages in both eyes.
And that was a pretty abrupt change to my life,
to my functioning, I stopped driving,
I was on disability leave from my job at the time
and I was just trying to figure it out, figure out life.
>> Great, so then all this,
I know you have so much to grit.
I know you do and so you started then at Johns Hopkins.
>> Yeah, so at that point
when my first retinal hemorrhage happened
I had mailed out applications
to Master's in Public Health programs around the country,
just weeks before that.
So it was a really tough time.
And I had also just gotten married about six months
prior to that as well.
So I took a pause from life quite honestly
just trying to figure out how to function
and how to emotionally manage the fact that life as I knew
it was different and in lots of ways
falling apart at that time.
But after about a year, I decided that this really couldn't
be the end of what I wanted to accomplish with my life.
So I had deferred at Hopkins my MPH acceptance
and I decided to just test it out.
And I asked if I could just take one class at a time
to see if I could do it and they said yes.
And I did and I sort of surprised myself
that I could do things and I was figuring things out.
And in that process I found a class called
Eye Disease Epidemiology that Dr. Sheila West
here at Wilmer was teaching.
And I very selfishly took that class because I was just
trying to understand what was going on with me and my life.
And after the first day of class I went up to Sheila,
to Dr. West and I asked if she would meet with me.
And we met the next week and I explained
what was happening with me.
And asked if there was research opportunities.
And she had an amazing response and she just
convinced me really in that meeting
that I had a really unique perspective and opportunity
and that I should really shift my focus of research
which at that time was cancer to studying ophthalmology
and that I perhaps could use what I was experiencing
to focus my research and to drive research questions.
Honestly at the time that seemed like
a goal above and beyond what I could accomlish
or it didn't make sense.
It wasn't.
It didn't seem achievable, to be honest,
but some for some reason she saw something.
And she encouraged me and I did you know,
so I finished my masters and my PhD and right and I am here.
I'm here at this faculty, that's something
on the day of that initial retinal hemorrhage.
I could have never in a million years predicted.
>> No, but we are glad you're here.
Because what you're doing, you're changing
the way you see people with disabilities.
With a person like me looks at a person with a disability.
And it's called disability inclusion, but you bring it
to another level.
And you bring it here at Wilmer to another level.
So I wanna talk about that.
I wanna talk about who else inspires you because
we're a team approach here at Wilmer.
You inspire so many and we'll get to that
but let's talk about who inspires you here at Wilmer,
and bringing disability inclusion to another level.
Which is happening here at Wilmer because of you.
>> It is so hard to just find one person at Wilmer
that inspires me I have to be honest with you.
Somebody asked me recently about that really dark period
in my life that I was struggling with and what changed.
I get this question a lot.
How did I get out of that really hard, dark period
where I was absolutely very depressed?
And my answer quite shortly is I came to Wilmer.
I came here, I wasn't diagnosed at Wilmer
but I came here as a patient.
I came here as a student, I came here as a trainee.
And that changed everything.
That changed absolutely my entire life in every capacity.
I got a different level of care.
I got a different level of support.
I saw a path forward that I didn't see before in my life,
personally, professionally and clinically.
And I felt normal.
And that's really important.
I felt valued.
And I didn't feel that and that's what was missing.
And when patients call me and they're struggling,
and they asked me what I did, I wish I could replicate that
for everybody, but truly, that's what changed my life.
And so as far as the one person that has, you know,
changed everything, it's absolutely Sheila West.
But beyond that it is everyone from the technicians,
the people that check you in the texts that are
measuring your visual acuity to the team
and I have complex visual condition at this point.
The people that take care of me, you know,
the support I have from my colleagues, it's amazing.
>> And they never lose their patience.
I've seen that, right.
They're just, you know, you could be hours getting an exam
and they just keep at it.
That's what I love about the patients here
and the care they get.