Dr. SHaron Sacks
 

Cause of blindness - Retinopathy of Prematurity (ROP) and Acute Angle Glaucoma

Sharon was born premature with retinopathy of prematurity and later developed acute angle glaucoma.

She was a professor and coordinator of the Teacher Preparation Program in Visual impairments at the California State University, Los Angeles. She has published books and articles in the fields of education and rehabilitation for the blind and visually impaired and has worked in many auxiliary programs to the benefit of the blind community.

Now Sharon is a superintendent of the California School of the Blind.

Sharon was born weighing only 2 pounds 2 ounces, a full five pounds less than the average baby, so her life began as an uphill battle.

Sharon grew up in Los Angeles in the 1950s. Her parents didn’t know anyone who had vision loss before having Sharon. They were neither prepared nor educated for it.

“We were fortunate to have a home worker that provided early intervention services.”

“Now these services are mandated by law for young children with disabilities. When children are diagnosed early, they are hooked up to Blind Babies Foundation, and they get services pretty quickly.”

In the 1950s services that helped parents raise children with visual impairments were not yet widely available, so at first Sharon’s parents lacked proper resources. But through the help of their home worker and their own research, Sharon’s parents learned and provided everything they could to raise Sharon to live both comfortably and successfully.

For example, when Sharon was in elementary school, her parents bought a large print set of the World Book Encyclopedia.

Encyclopedias are expensive, and a large print set with a smaller target consumer demographic hiked the price up further, but for Sharon’s parents it was well worth it.

“To them this was something that would help me, support me. My brother had a regular print set, too, so why shouldn’t I?”

Expectations of education for females in the 1950s were altogether different then compared to what they are now. Despite the cultural norms of that time, Sharon’s parents encouraged her throughout her education. This was a surprise as much as a blessing, because neither of her parents had college degrees. Nevertheless, they understood the value of education.

“I got a lot of support, especially from my mom. But the expectation was there also. The expectation that I was going to succeed.”

At that time there were no readers and recorded textbooks and other materials were at a minimum. Large print books were available, but Sharon found them slow and cumbersome. Her mom became her reader, especially during her high school years.

“My mom really was my champion.”

Because of her mom as well as the additional help of the LA public education system, Sharon excelled in school. She had great teachers in both her general education and assisted education classes.

“I put in the work, but I needed that support, and they provided that.”

As the years passed Sharon’s vision declined. At 10 years old, Sharon started using a magnifying lens mounted in glasses to read.

“Up until then I was reading large print. I didn’t like handheld devices. They’re bigger, they’re slow and confining.”

Another factor that influenced her reluctance to use a magnifying glass was Sharon’s desire to mask her visual impairment.

“Kids did a lot of teasing. And I did a lot of masking. I had enough vision to fake that I wasn’t visually impaired, so I wouldn’t tell people. I would go out with friends and fake it.”

In her adolescence Sharon had still not come to grips with her condition. This was partially due to Sharon not fully understanding her condition, and because of that she harbored hopes for miracle treatments.

“I think that even into adulthood, but much more so as a kid, I would go to the ophthalmologist thinking, ‘okay, this time I’m going to come out of there and my vision is going to be much better.’”

After coming out of appointments without successful treatment, Sharon’s hopes would crash, which brought her even further from self-acceptance.

At age 12 Sharon started seeing a new ophthalmologist. She was mature enough then to realize that she did not fully understand her condition, so Sharon asked her new doctor to explain her condition in detail.

“And when my new ophthalmologist explained it there was more acceptance. I didn’t keep getting false hope before ‘going to the doctor’. It was like, this is what’s happening to me. And I understood.”

That conversation was a significant milestone for Sharon to accept her visual impairment, and acceptance was integral in Sharon transcending her vision loss. Before Sharon accepted her condition, her life was shrouded in uncertainty. That uncertainty kept Sharon in a state of denial and impeded her from accepting her condition and her identity.

“Everyone has qualities that make them unique, blindness is just one of those qualities.  I think it’s important for everyone to understand their own condition. It’s a part of their identity. It’s part of who we are.”

“I say to staff all the time- It is not easy being visually impaired. It takes a lot of energy. And I can certainly understand why people get frustrated. So we have to make choices in our lives to deal with that frustration.”

In Sharon’s case, she faced adversity head on. With the support of her family and her teachers, Sharon took every opportunity she could to develop herself academically and professionally.

“I felt disappointed and angry when I learned about my condition. But I was going to deal with it by really pushing forward, by showing the world that I can do anything that anybody else can. That’s how I dealt with it.”

In her youth, Sharon worked as a babysitter, a song leader and a camp counselor, a teacher’s assistant, a counselor in training, and a candy striper at a hospital. She’s also worked as a volunteer at the Braille Institute.

“For all of those jobs and experiences I really had to advocate for myself. I had to explain how I would be able to do what was expected of me with my vision loss. They could have said no, absolutely not, that’s too much of a liability. But I was fortunate, people took that chance.”

Though she was somewhat lucky to receive those opportunities, Sharon’s success was no accident. It was a product of her drive and all the support she received. The harder Sharon worked the better her life became. Her work ethic outpaced her vision loss and the obstacles that came with it and as her confidence grew, Sharon became even more comfortable with her condition.

“In college it was better, as I got older it was better. I realized that it didn’t matter to people that I was blind. It was an okay thing, especially for my friends. They were my friends because they liked who I was.”

False shame and self-importance can keep us from being open about our condition, but Sharon discovered for herself that there was great benefit in making her vulnerability known.

Now Sharon has no problem fully disclosing what her vision is like. To help people understand her, she tells people right away. When Sharon does presentations, she always starts by disclosing her condition. And once she has opened up, she can joke about it:

“You know if you guys are bored with me I’m really not going to know because I can’t see your facial expressions.”

Of course Sharon is aware more than she lets on; she uses her hearing and intuition to sense feedback and stay in touch with her audience.

“My friends and husband would never think of me as blind. They would think of me as having vision loss, or having limited vision.”

“Really and truly, there are such degrees of blindness,” Sharon clarified.

Sharon wishes that the public understood the continuum of blindness, in both its variance and diversity.

Public understanding begins with the individuals with visual impairment knowing about their own condition.  At the California School of the Blind, they run an instructive program taught by both a teacher and psychologist to give students an opportunity to learn about their visual impairments.

“We have a six week class where the kids learn about the eye, build a model of the eye and learn about what part of their eye is affected by their vision loss.”

The class helps students understand their condition for themselves and their friends and family. It provides an open and nurturing environment for students to discuss their visual impairment and ultimately develop self-acceptance.

“I went through my teacher prep program and learned about all sorts of eye diseases.”

“And at that point I thought, that’s not going to happen [to me] because my vision is so good.”

But not long after, Sharon was diagnosed with acute closed angle glaucoma.

“I lost a lot of vision in my left eye. A lot of peripheral vision. Then I got cataracts and intraocular lenses.”

“I wasn’t aware that that would happen. Even though I learned about it clinically, I didn’t think it would happen to me.”

Sharon took the vision she had for granted. Though she still had working vision, it was psychologically draining to have to readjust.

But this time around Sharon was fully equipped for the change, she was established professionally and was also much more comfortable with vision loss than she was in her youth.

Despite Sharon’s second stage of vision loss, her only real limitation has been not being able to drive.

“When Google comes out with their self-driving car, I’m going to be the first one to get it,” Sharon said, only half-joking.

“Those are the biggest obstacles- that and asking people to pick you up. I would love to be able to go to the mall and not ask my husband--‘I’m just going out, see ya!’”

Sharon has great independence when it comes to her mobility because the layout of her community has stores in walking distance. In addition, her success allows her to take taxis and hire drivers, which she recognizes as a great blessing and an enormous burden lifted from her.

“There’s been research in the visually impaired community—and it’s not that surprising—if you have enough money you can do what you want to do. It makes your life easier.”

But there is the problem of underemployment and unemployment in the visually impaired community, so driving services are not always an option for everyone. Because of this, many visually impaired individuals opt to live where public transit is available.

“In that regard my life is pretty darn good, since I’m able to access these services. I don’t see it as challenging, but I’m lucky.”

Sharon has taken advantage of her fortunate position by dedicating her service to the visually impaired community.

“I don’t view my life as anything so spectacular or special. I just give back, that’s what I do.”

And those moments of giving back are some of Sharon’s most profound memories.

“Seeing kids who come to the school that are really dependent, that can’t do much on their own, and they leave here becoming advocates for themselves. Traveling independently, going to college. Seeing kids who were in gangs, but then got on a good trajectory for life.”

Those moments for Sharon are the most fulfilling; knowing she helps make a difference in new lives brings joy to her heart.

“I did a presentation for a bunch of students that were college bound. They asked me, ‘did you use screen readers when you went to college?’ And we didn’t have that, we had reel-to-reel tape recorders. I didn’t have a computer, I used a typewriter.”

“I’m sure they thought that I was just a dinosaur.” Sharon laughed happily, knowing that all the new technology is facilitating greater independence for the visually impaired.

“In terms of the wonderful things, all the advances in technology and services, the kinds of things a blind person can access, books, all the low vision devices and materials and all the technology that’s available is just amazing.  All these things that allow a person to be more independent. All those have made a huge difference.”

But Sharon also recognizes that technology isn’t enough. Coping, acceptance and personal fit all play their role as well.

“When people are losing their vision, they deserve the option. But at least you are giving them that information, and at least you’re giving them the choice.”

“I will always advocate for a continuum of services, because one size doesn’t fit all. And I believe strongly in that.”

But all the technology and services available cannot change the fact that vision loss is hard.

“Research has shown that there are high levels of depression for kids, they have to deal with a lot. That’s probably true for adults too.”

This struggle is mitigated by the support of other people. Physicians especially have a vital role to play because of their intimate relationship with patients and their conditions.

“Please know that doctors have to help get us through it. They have to let people get sad and angry. When you let them do that, and help them through that, you’ve done a great job.”

Sharon knows the value of support from others. She has had role models and mentors growing up. The most notable was Phil Hatlen.

Phil encouraged Sharon to return to school and to get her doctorate.

“It’s been really fabulous having the opportunities I’ve been given. I’ve done workshops, traveled regionally and nationally, wrote books. And Phil was an advocate of that. He believed in me as he pushed me.”

Phil passed away January 14th, 2016. Yet his legacy lives on, in Sharon and the others he taught and inspired.

By Phil’s guidance, her family’s support and her own drive, Sharon has created a successful life. She is not just a superintendent of the California School of the Blind, she is the only superintendent of a school of the blind in the whole country with vision loss.

Although Sharon is proud of her position, she is disappointed by the lack of visually impaired individuals in leadership positions.

“[Visually impaired] students are now more into computers and tech, and less into education.”

To change this trend Sharon has assisted in the development of a leadership program that trains visually impaired individuals to become academic leaders.

Despite Sharon’s success she remains modest.

“I never thought that I would get a doctorate- I never thought that I would be superintendent for the California School for the Blind. I never thought that I would have these opportunities. And it feels great!”

“I loved academia, but the one thing I missed was interacting with students. Now all I have to do is walk into a classroom.”

And in those rooms Sharon finds hope and inspiration, experiencing firsthand the fruit of her labor, and the blossoming of a new generation.

While Sharon is accomplished as both an academic and a professional, she still suffers and copes with loss like anyone else.

“I cry a lot. I scream and yell a lot.  I can feel sorry for myself, but that’s not going to help me or anybody else that I engage with. So I cope with it on a daily basis, and then move forward.”

For Sharon there is a time for grief, but otherwise life is good.

“I love to entertain, I play guitar and sing. I love to cook and host parties.  I like to read books, and trashy novels. That’s my goal on vacations, not to read anything professional.”

Sharon also enjoys walks and hikes, and traveling too.

In addition to making Sharon a strong and passionate person, her vision loss has made her kids caring individuals.

“They have grown up around my visual impairment, they grew up knowing this school, they grew up knowing blind people. They have that level of sensitivity and caring. It is positive. It adds to what they’ve learned in life.”

“And I’m really happy with my life. I had great parents, I have a wonderful husband. I have great kids that have done wonderful things. I’m very appreciative, and my parents taught me to give back. That’s just who I am.”

“I don’t have any regrets. If I die today I could say I have lived pretty darn well.”

In the beginning of her life Sharon was a 2 pound, 2 ounce premature baby born with retinopathy of prematurity. Now she’s an accomplished professional, a loving wife and proud mother.    

“Knowing what can happen to a baby like that, when you think about that, that’s pretty amazing.”

To learn more about Dr. Sharon Sack's conditions, continue here for ROP and here for glaucoma.