Janet Ngan, 24, Phoenix, Arizona, USA
When were you diagnosed with Stargardt's disease
and how did it affect you at that time?
I was first officially diagnosed with Stargardt's
disease when I was 15 years old. It
feels much longer than that because I remember getting my first pair of glasses
when I was in first grade (age 6). I always had vision problems and I spent
most of my childhood going to different doctors and getting new glasses. I
remember never being able to read the board at school and having issues
adjusting to light from the sun after recess. However, after seeing so many
doctors and getting new prescriptions for my glasses I felt like it should help
so I started pretending like it really worked. I would go to school early or
stay late so I could copy notes from classmates and sit in the front of the
classroom as close to the board as possible. I would even pretend to forget my
glasses so I could get someone to read me what was on the board. This worked
out okay for a couple years but then as schoolwork started getting more
difficult it got really hard to hide my vision. When I was a sophomore in high
school, we had our annual health fairs to test your vision, hearing, etc and I
did so bad on the vision part that they sent a letter home to my parents saying
that I needed to see a doctor. When I went to see my doctor, she didn't
understand what was wrong with me so she sent me to a “special doctor”
(ophthalmologist). I remember it was the summer of 2006 and I was sent to about
six or seven different doctors performing special tests on my eyes. Finally,
when I saw my ophthalmologist again, he told me that I had a rare eye disorder
called Stargardt's disease. The rest of that summer was so hard and I had so
many emotions. I cried almost everyday, blaming myself, feeling like the
biggest failure in the world, and just could not bring myself to accept it. But
after awhile things cleared up and I learned to find the positivity inside of
me. Even though I was healing from my emotions I still felt ashamed to tell my
friends about it at the time. I hid the secret from my friends, classmates, and
teachers. This only lasted for a little while because when I started doing very
poorly in my algebra class I knew I had to tell someone. Thankfully, my algebra
teacher at the time had noticed that something was wrong with me and I
confronted her about my vision. She contacted the school and found two faculty
members who worked with students with disabilities such as those with a visual
impairment to work with me. They provided me with different resources such as
using a CCTV, magnifiers, enlargement my textbooks/exams, extra time to
complete my exams, and a note taker to help me in class. This was like being in
a new world for me. I was still kind of embarrassed by all the attention of
carrying textbooks that were almost three times its size. But I did find that
these accommodations were helping me tremendously in my classes. I worked
really hard and my grades were finally picking up and it actually didn't feel
dreadful to go to class everyday. So at the time I was diagnosed I felt like
the disease made me weaker but I've realized that it was what I needed to make
me stronger. It was definitely a struggle and some days it still feels rough
but I've learned to not give up and try my very best in everything I do. I've
learned to ask for help when I need it even though I don't want to. Most of all,
I learned that Stargardt's doesn't define me, it is my attitude and how I
choose to react to it that makes me who I am. I can't change something that is
beyond my control but I do have control on how I live my life.
What parts of your life have you adapted because
of this disease?
I think Stargardt's has affected many aspects of
my life but the most recent and hardest part was the inability to drive a car.
I was diagnosed at the age where I was supposed to get my instruction permit to
start learning how to drive but I was unable to because I failed the eye exam
portion of the test. So I never really had that experience of driving
throughout my teenage years and having a car during college. When I was in
college, I lived close to campus so I could ride my bike or take the shuttle to
school so it wasn't a big deal. When I went out with my friends, they usually
picked me up so I didn't have an issue until after I graduated. I learned that
a driver's license was the ticket to EVERYTHING from going to places on your
own to getting a job! I did not prepare myself for this struggle when I was in
school so I felt super lost at the time. I thought I could just ride the bus
but I didn't realize how scarce, unreliable, and time consuming the public
transportation system can be. So I ended up talking to my doctor/low vision
specialist and they told me I was able to drive with bioptics. Bioptics are
these lenses that have a telescope on top that magnifies like a binocular. I
was really excited for this and I felt like I was finally able to drive and be
more independent. I spent my year off from school doing the bioptic training
and it was just a huge struggle. At some moment I was really happy and felt
like I was doing a good job. However, because of the safety and how my vision
fluctuates I had to give up the driving. This was probably the second biggest
hurdle I had to overcome since my diagnosis and it left me devastated. I didn't
know what I was going to do with my life if I couldn't drive and get a job. It
almost felt like the summer of 2006 again. But I didn't let it get to me as I
picked myself back up and I talked to the local vocational rehabilitation about
resources for the visually impaired. My vision hasn't gotten bad enough to the
point for me to use some of the resources. I found a part time job working in
retail and learned how to take the bus there by myself to work. This was my way
of feeling like I could be independent no matter the challenges that
Stargardt's brings. During this time I also reached out to people about my
issue and explored the different options for me to find success. I knew I
didn't want to move back in with my parents for them to take care of me for the
rest of my life. I was passionate with public health and helping people improve
their quality of life which was what I studied for my undergraduate degree but
jobs were incredibly hard to find since I needed to be able to drive in order
to perform the job in the community. So in a way I had to adapt my career to
fit me as well. During this time period I worked on classes and applications
for graduate school for occupational therapy. So in the beginning, not being
able to get my driver's license felt like the end of the world to me because so
many things I wanted to do revolved around that. But I was able to find a way
to make it work and continue to grow stronger and adapt to the hardships that
Stargardt's brings.
What are your goals and where do you want to be in
ten years time?
This is a very good question! I know time goes by
fast but I have no idea where I will be a whole decade from now! A lot can
happen in that period of time and life is just unpredictable. So it is hard to
imagine me at 34 years old (ew I'm going to be OLD!) when I barely know what is
happening tomorrow. However, my biggest goal right now is to make it into
graduate school and get my Master's in Occupational Therapy. I expect that in
ten years I should be an occupational therapist and loving my job. I really
want to be able to make an impact in people's lives. I want to help the
visually impaired and other people with disabilities be able to find the
independence and fulfillment in their lives. I want to reach out to people who
may feel as lost and confused as I once was and show them that anything is possible
and nothing is worth giving up on their dreams. Also, in ten years’ time I hope
to have traveled more (hopefully meet you in Australia!) and cross off more
things on my bucket list. I guess I'm pretty simple. In ten years’ time I just
want to be someone that I can look at and be proud of. I want to be happy and
make everyone around me happy. Sounds cliché, I know.
What inspired and motivated you to get you to
where you are now on your journey?
Honestly, I feel like this disease itself has
impacted me so much to become who I am today. Yes, it did bring me a lot of
stress and challenges to get over. But what is life without these experiences
that make you different from everyone else? Being able to go through each
hurdle that comes my way and ending up here is super inspiring to me. There
were actually times where I felt like I could never make it this far but I
continue on this journey learning so much. I spent some time being angry at why
out of the billions of people in the world it had to be me, but I don't think I
would be the same person as I am without Stargardt's. It has really taught me
to cherish life and to put in 110 percent in working harder to achieve my
goals. I never wanted to take things for granted and just want to make use of
all the vision I have to create a spectacular vision for the future. It has
also given me the compassion to want to help others who may have similar
problems get through it because I understand what a pain it can be. This was a
huge reason why I want to pursue a career in Occupational Therapy and stay in
the healthcare field. I used to think Stargardt's was the biggest curse of my
life but I've learned to see it as a blessing. It makes me unique, I mean how
many people have awkward stories of walking in the wrong car or not recognizing
someone instantly while you're having a conversation with them? Maybe that part is not much of a blessing but
to people who know me and understand, it gives us something to laugh about
later. Having Stargardt's also gives me the drive and determination to do
anything and turn the “impossible” into “I'M Possible.” I know I'm always going
to have those days where I feel depressed that I'm not living up to where I
should be based on where I see other people but this just makes me want to try even harder to get to where I want to be. Also, I
think the more I understand this disease (such as from my diagnosis), the
better I feel because I realized it is just a part of me and that I wasn't
going crazy because I didn't have the same vision as everyone else. I actually
found it very inspiring when I first read your blog and found that there was
someone in the world who felt and experienced exactly what I endured. Even
though we literally live on opposite sides of the world and we've never even had
a cup of tea together, I feel this sense of closeness and energy with you
because of the one thing we do have in common. I'm the type of person where I
can get easily motivated and enthusiastic at life because I get my energy off
of other people. So being able to share our experiences with each other has
helped me significantly because I know that I'm not alone. I know that I can
continue growing stronger than ever no matter what comes my way.
If you would like to connect with Janet on Facebook click here.
Thank you for sharing your experience. Despite our distance, you have been a huge support for me and motivate me to keep doing what I'm doing.
The Stargardt's community we have all contributed to is incredible. Thank you to everybody who has been a part of it and keep all the emails, Facebook messages, tweets and Instagrams coming!
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