Jul 27, 2018

Persevering to Success with the Support of Family, Friends, and Faith

Beacon Stories

A story about living with retinitis pigmentosa.

Get updates on Beacon Stories

Path Leading to Foundation Fighting Blindness.

When I was in junior high school, I was active in sports and involved in school and church activities. Even though I had faced challenges of being hearing impaired since birth and wearing hearing aids, I did well in school and had a normal, healthy childhood. During this time my brother, who is one year older than me, began experiencing difficulty seeing at night. After a visit to the eye doctor with my parents, he was diagnosed with retinitis pigmentosa (RP). It was discovered shortly after that I also had RP, and my younger sister was diagnosed several years later. Now, my parents who had been working hard to provide a normal childhood for three hearing impaired children, were struggling with the news that their children had Usher syndrome and would likely go blind in addition to living with a hearing loss. My parents quickly turned to the RP Foundation, which was later renamed Foundation Fighting Blindness, to gain knowledge and support in dealing with an inherited retinal disease for their children — that was 30 years ago. Even though there was research being done, there was no hope of a cure in sight anytime soon.

Three Affected Siblings, One Family, Persevering.

Growing up, my parents always encouraged my brother, sister, and me, telling us that even though we faced challenges, we could still accomplish our goals and dreams. They never treated us differently; rather, they inspired us to work harder and provided us with as many opportunities as possible to work towards our goals. My brother, sister, and I all went on to college, and each of us graduated with honors. My brother pursued a career in physical therapy, my sister pursued a career in special education, and I pursued a career in business. While we have had to make changes along the way to adapt to our progressive vision loss, we have all maintained a fulfilling, productive life with the support of our family and friends and our strong faith.

Achieving Personal Goals.

Junior high years are awkward and difficult for most children, but wearing hearing aids and finding out I would likely go blind made it even more challenging. With inspiration from my parents, I continued to move forward through school and be active in various activities. I completed driver’s training, and my parents worked hard to provide me with a car as they knew I probably wouldn’t be able to drive for very many years. After high school, I attended college 300 miles away from home at Olivet Nazarene University. Living on a college campus was a rewarding and invaluable experience. It was during college that I noticed issues with my peripheral vision, experienced more difficulty with my night vision, and stopped driving at night. I was able to navigate around campus as long as I was in a familiar area, and I had great friends who helped me when I was in an unfamiliar setting.

After I graduated from college, I accepted a management position with a health care company and lived on my own. Shortly after, I met my husband and eventually moved on to working for a pharmaceutical company. With the support and encouragement of my family, I have recently completed my master of business administration degree. While my graduate degree was a lot more challenging than my undergraduate degree due to the progression of my eye disease and my limited field of vision, I was still able to achieve my goal and excel in all of my classes.

Relying on Support.

In addition to my parents, my husband has been my biggest cheerleader. I am grateful and fortunate to have such a loving husband who selflessly helps me and looks for ways to make things easier and more accessible for me with my limited vision. We enjoy traveling and riding our tandem bike together. My husband and I have been blessed with two wonderful, healthy children. My limited vision and hearing have certainly presented challenges as I have been a mother, but I believe my children have been given a greater opportunity to be compassionate and understanding of those who face various struggles by having a mother who faces daily challenges. Even though I cannot always see or hear everything when I attend sporting events, school activities, or concerts for my children, I am always there cheering them on.

Finding Hope.

Throughout the years, I have had to continually make adjustments as my eye disease progresses. One of the most difficult changes was when I was pregnant with my oldest child. I had to stop driving as my visual field continued to narrow and it was becoming difficult for me to see important objects. I have also had to make adjustments to what I’m able to do independently and learn how to use technology to assist me. However, I gain strength and encouragement from my faith, family, and friends, and I am grateful for the consistently emerging technologies that help me navigate through life.

I have recently registered with www.MyRetinaTracker.org so I can be among the first to learn about clinical trials that may be beneficial to me. After 30 years of supporting the Foundation Fighting Blindness and receiving resources, information, and hope on how to cope with Usher syndrome, my family and I are thrilled that a cure is within sight and excited about the possibilities that may soon be a reality!