Thursday, January 15, 2015

Real People # 1

In the coming months I will be sharing stories of others living with Stargardt's and other retinal dystrophies. These people have all inspired me on my journey and no doubt will inspire you too!

First up is Jenna!

Jenna Lawson, 22, Florida, United States

What is your diagnosis and how does it affect you?

In March of 2011, I was diagnosed with Stargardt disease, a type of retinal dystrophy. This disease impacts my central vision and, at this point, I have no central vision left. When I first began losing my vision and I was told that neither glasses nor surgery would fix my problem, I was very scared and upset. At that point in my life, I was a year out of high school, I wasn't going to school (even though I really wanted to), and I was trying to enroll in a dental assisting program that I thought would bring some direction to my life. I had successfully enrolled in a program and was due to start in a few days when I received the news about my eyes, so I had to withdraw from my classes until I figured out what was happening with my vision. In addition to feeling scared, I felt angry because all I wanted to do was get my life on track, but all of these events were preventing me from doing so.

I, thankfully, received an official diagnosis two months later, and I remember thinking: "This is my life now. There is no looking back." I was so relieved to simply know what I was dealing with that acceptance came very easily. I was so eager to pursue my life that something like Stargardt was not going to stop me. Funny thing is, Stargardt disease turned out to be one of the biggest blessings of my life because, not only did it enable me to attend school, but it helped me realize my true strength and tenacity. It's strange how something that, at first, seemed so negative turned out to be such a positive and motivational experience.  I definitely encounter challenges from time to time, but I have accepted my eyes for what they are and this alone has given me great peace.

Where do you currently work or study and how do you find it with your vision impairment?

Currently, I attend the University of Central Florida, and I'm pursuing a Bachelor's in Social Science Education. My goal is to become a history teacher. Before UCF, I attended Weber State University in Utah. When I lived in Utah, I walked three miles to the nearest bus stop, in the cold and the snow, and then rode the bus for an hour to school. I kept getting sick because of the cold and I hated the long commute, so I moved to Florida where I'm able to wear sandals and shorts almost everyday. I take classes online, and I also take classes at a location that is about three miles from where I live. I ride my bike to and from this location, rain or shine. School is my job, at the moment, but I spend a lot of time volunteering at an elementary school. I ride my bike there, as well, because it's close to where I live. If I have to go anywhere else, like the grocery store or the dentist, I have to have a friend or family member take me.

What hobbies do you have?

I love to paint and draw, write stories, read, spend time at the beach, hang out with friends and family, watch movies, travel,  study world history, and belly dance. I continue to enjoy all of the activities I did before I began losing my vision. I started belly dancing about a year ago because I wanted to improve the health of my spine (I spend a lot of time hunching over notes and textbooks because I have trouble seeing).

What has been the biggest hurdle you have faced?

The biggest hurdle I have faced has been transportation. Transportation has been the most persistent and frustrating problem. In the United States, there is sort of this expectation that anyone 18 or older should be largely dependent on themselves. Lack of transportation makes it so you have to depend a lot on other people, and a lack of transportation can also limit your access to job opportunities. Learning to accept a state of dependence is difficult, and it can sometimes feel demeaning when you live in a culture that places so much emphasis on independence and "finding your own way". Not being able to provide transportation for yourself also shows who your true friends are; those that truly care will undoubtedly find the situation tricky, at times, but they will be there to support you no matter what, whereas others will see you as a burden and will disappear from your life. I take this hurdle one day at a time. As far as relationships and job opportunities go, I have come to view my transportation issue as a filter. In other words, opportunities and relationships will continue to be in my life, regardless of my eyesight and the challenges I must face on a daily basis.

What's the best advice you'd give to others in this situation?

I have learned some very important things over the past few years that I would love to share:

  • Acceptance leads to success. Looking back on what used to be doesn't make things any easier, and it most certainly will not make you happy.
  • Be your own advocate. If you need help, don't be afraid to let people know. There are so many resources for people who are visually impaired. It's truly an amazing experience when you connect with people who are dedicated to your success and well-being.
  • Realize that things could be a lot worse. Honestly, I'm lucky to have Stargardt because, while I may lose an extent of my eyesight, I will never lose all of it. There are people out there who have suffered much worse and, amazingly, they have powered through it and come out on top. These people have been my greatest source of inspiration
  • Never let others minimize your frustrations, challenges, or experiences.
  • Pursue your interests and continue to live your life.
  • Honor your sadness, frustration, and fear, but don't allow these emotions to consume you.

Thanks Jenna for sharing. You have been an amazing friend and support from the other side of the world!

Here are some of Jenna's beautiful artworks. I've previously shared some of her work make sure to also check it out here.

If you want to connect with Jenna on Facebook click here.

1 comment:

  1. Hi
    This is mateen kazi i am from india
    I am having sd when i was 12 i come to know that i have sd and now i am 24 years old
    I read your post and i am very glad for you but for us its very difficult because in countries like india we dont that advance knowlege and treatments for sd even some doctnrs dont know about this disease.
    In 2012 i pass my graduation and after that things become more worse i am facing too much problems while doing job and mostly companies looking for fit peoples not abnormal like us.
    Anyways best of luck for your bright future and all sd suffering peoples