In the realm of vision loss, stories of resilience, perseverance, and the human spirit’s ability to conquer adversity often stand as powerful testaments to our vital work here at the Deicke “House of Hope.” We invite you to read more about the personal journey of Mary, a patient and volunteer at Spectrios. Her journey underscores the importance of comprehensive rehabilitative programs like ours and serves as an inspiration to those navigating similar challenges. Meet Mary: My journey began with a simple yet profound realization: my vision was failing me. As a dedicated professional in a managerial role at AT&T and someone who enjoyed reading in my pastime, I found my world suddenly and drastically altered. I was reading, and I couldn’t make letters out, certain words blurred, and blind spots emerged, casting a shadow over my once crystal-clear vision. I had almost perfect vision, and it was gone in the blink of an eye, with this one episode which scared me. Seeking answers, I turned to the Wheaton Eye Clinic, where I met Dr. Richard Gieser, MD, my dedicated retina specialist. Dr. Gieser diagnosed me with Pseudoxanthoma elasticum or PXE (pronounced ‘pixie’) a condition leading to very fragile blood vessels forming in the back of the eyes that break and bleed from time to time. He gave me the devastating news this would ultimately result in permanent vision loss in both my eyes. Dr. Gieser administered several injections of Avastin, which stopped the bleeding, but it was devastating to hear that there really was no cure, no remedy to heal, and bring back my vision. My journey into the world of low vision began then, in 2008, and the uncertainty of my future weighed heavily on me.

Amidst the turmoil, Dr. Gieser was my godsend. I was left wondering, what do I do now, and he said, ‘don’t worry’ I have an answer. Go to Spectrios. Tell them you are a patient of mine. Dr. Tracy Williams is the Executive Director there, and he will help you navigate these waters. Dr. Gieser’s words of assurance that I would be accepted into the program at Spectrios brought a glimmer of hope in the midst of darkness.

My journey with Spectrios began there, and my story speaks to the life-saving care and support they provide. I worked closely with Dr. Tracy and Dr. Coalter, focusing on maximizing the vision I had left and learning to see more than I would have otherwise. Spectrios addresses the entire spectrum of a patient’s needs, encompassing the psychological, physical, and emotional aspects. I found inspiration in Leah Gerlach, who acted as both a counselor and a fellow navigator through the challenges of vision loss. She played a pivotal role in my journey, instilling the belief that I could embrace life, maintaining a healthy and positive outlook despite my visual challenges. Her support inspired me to push harder and rediscover the joy in life by nurturing a positive mindset. She encouraged me not to be afraid of new experiences and to continue moving forward in a constructive and positive manner. I’m so grateful for her guidance and the impact it had on my life. Occupational Therapy from Katrina Stratton and Access Technology support from Mark Chalmers and Chris Retzke were really beneficial to me. I learned various strategies and techniques to make using my phone and tablet more accessible. Their assistance not only helped me but also educated me about low vision devices, such as the Explorer 12, which made my daily tasks easier. I am extremely grateful for this learning experience, as it was all new to me; I didn’t know anything about low vision. I’m really grateful for the entire Spectrios staff. You can’t say enough good things about Lynn Freyberg. Whenever you need something, she was right there, always ready to assist. My journey was not solitary; my family and friends rallied around me. Two of my brothers, too, were diagnosed with PXE, highlighting the hereditary nature of this multisystem disorder. My friends also played a significant role, encouraging me to be the best I could be despite the adversities I faced. You can do the things you want to do with vision loss, just in a different way. I think it’s critically important for people who find themselves in this situation to understand that. It’s a message that they need to hear. And it’s a relief to know that I have a resource in Spectrios that I can tap into. With the guidance of Spectrios, I was able to remain gainfully employed, and finish my career, having just recently retired from AT&T after 38 years. The saving grace was having Spectrios as an ally, finding the right technology and resources to assist me to continue to do my job. I also, through Spectrios, completed the Marion Joy drivers’ rehabilitation program, allowing me to use telescopic lenses and legally drive, a life-changing milestone. My annual reviews with Dr. Williams ensure that I can continue to meet the legal vision requirements for driving, providing a sense of independence that can never be overstated. My journey concludes with words of wisdom and encouragement for others facing similar low vision challenges. I emphasize that we are more than our vision; our hearts and minds hold boundless potential. Vision loss can be scary, and it’s not without its trials, but with the right guidance, support, and a positive outlook, there is a world of possibilities beyond vision loss. I encourage everyone to contribute and give back, and advocate for the use of valuable resources like Spectrios. ~ Mary