“Not faking, not amazing just living the best I can beyond vision loss”
Happy Valentine’s Day!!
The title of today’s Fierce Friday sums up the life’s journey of Jule Ann Lieberman’s progressive vision loss. At a mere 9 years of age, holding books closer to read, not being able to see her teacher’s face or the blackboard beyond ten feet, were the first clues that there were issues with Jule Ann’s sight.
After several years of visits to the ophthalmologist without any signs of visible improvement, even with eyeglasses, Jule Ann eventually was led to a retinal specialist in Philadelphia. It was at this visit both she and her sister would be diagnosed with Stargardt Macular Dystrophy.
…much of my life has been in work with persons with vision loss or blindness including my recent Master of Science degree in Low Vision therapy and certification.
Stargardt Macular Dystrophy, the most common form of juvenile macular degeneration, is a genetic eye disorder that affects the retina and causes progressive vision loss. The macula (center of the retina), is responsible for sharp central vision, which is needed for detailed tasks like reading, driving, and recognizing faces.
Jule Ann’s challenges became greater during her junior year in high school as reading demands increased while her vision decreased. Prior to this point she was able to maintain honor roll status by putting in many extra hours struggling to read print. If not for the astute observation of one of her teachers who investigated support systems for her, Jule Ann’s outcome upon graduation could have been very different.
One of the things that made the most impact early on was Jule Ann’s tireless self-advocacy. Since she knew her vision loss impacted many facets of her life she would speak up to get her needs met. In school she would ask for a front row seat to be closer to the chalkboard. On an adventurous solo trip using both regional rail and trolleys to an unfamiliar area in Philadelphia, at 17 years old, unable to read the street signs sounds scary but Jule Ann managed by asking passersby for directions.
One thing that has not changed is my advocacy efforts. From those early days of asking to sit forward, requesting assistance while traveling and workplace accommodations I needed to develop skills in advocacy.
Amazingly it wasn’t until the Pennsylvania state agency, the Office of Vocational Rehabilitation Bureau of Blindness & Visual Services (OVR/BBVS), took over services for Jule Ann as she entered college that she had her first low vision exam. At this exam she was introduced to microscopic reading glasses, and a monocular telescope but it was this terrific reading device then known as a closed circuit television (CCTV) that completely astonished her.
One of the most touching moments as a mother came when my daughter announced to an entire congregation at church that her mother provided her with much more than rides to school, or other vision related task as I taught her resourcefulness and independence.
Jule Ann says that her professional success is due in large part to the support, patience and understanding of her family. Her husband of 31 years has coped with her ever-changing vision and her three children had to grow up with a Mom who had to “do things differently” from their friend’s mothers.
My two sons learned patience and respect for persons who are different from life with their mother. This I think makes us all better that we have such considerate young men.
Many times throughout her life Jule Ann found it necessary to explain that she is vision impaired and that glasses would never help. Learning how the eye functions at a very young age and why her retinal damage resulted in poor vision boosts Jule Ann’s confidence during her “teaching moments.”
As you can tell, I am neither faking nor amazing, but a wife, mother and professional who lives the best life.
I’ve had the pleasure of working with Jule Ann on a committee on which we both serve and met her in person at our Pennsylvania Council of the Blind Annual State Convention. She is such a positive influence on my life and I consider her a go-to person especially on education, technology, functional vision, and advocacy concerns. She’s bright, fearless, and confident and I think the world of her.
“The act of discovering who we are will force us to accept that we can go further than we think.” ~Paulo Coelho