My Three-Decade Journey with Keratoconus
From the age of six, when I first donned a pair of glasses in 1976, to the present day, my life has been deeply intertwined with keratoconus.
The diagnostic methods of the 1970s were not as advanced as today, leading to my official diagnosis only at 18. As the years progressed, my condition rapidly advanced to severe keratoconus, the most aggressive stage of this eye disease.
The Turning Point: A Corneal Transplant
By 26, the severity of my keratoconus led medical professionals to recommend a full corneal transplant for my right eye. This procedure wasn’t about vision restoration but more about preventing further complications.
The Quest for Clear Vision
The Struggle with RPG Lenses
My initial foray into the world of contact lenses was less than ideal. The smaller RPG lenses, although providing clear vision, were a source of immense discomfort.
My eyes would frequently become bloodshot, and tear up, and the lenses would often pop out, especially from my right eye, which was more severely affected by keratoconus.
Accepting a Life of Blurred Vision
After enduring the discomfort of RPG lenses and unable to continue to wear them, I resigned myself to a life of distorted vision.
With the knowledge that there was no cure for keratoconus and the RPG lenses being unsuitable, I felt trapped in a mid-1990s mindset, believing no other options existed.
Adapting to Life with Low Vision
In hindsight, distancing myself from my practitioner post-transplant was a grave error. This experience underscores why I passionately advocate for continuous engagement with medical professionals when living with keratoconus.
My lack of awareness and updates about my condition limited my life choices, a realization I came to after much introspection.
Finding Purpose Amidst Challenges
Despite the visual challenges, I carved a niche for myself as a personal trainer. The close-contact nature and my personal training style, combined with boxing, kickboxing, and resistance training, allowed me to excel and serve my clients effectively.
This profession became my sanctuary, a safe zone where my vision impairment didn’t hinder my capabilities.
Embracing Change and Facing Reality
Years in the fitness realm made me complacent about my visual limitations. However, venturing outside my comfort zone brought a stark realization. Simple tasks, like viewing a computer screen at normal distances, became monumental challenges.
This newfound awareness became even more pronounced during a pre-employment eye exam for group insurance, where the severity of my vision impairment was laid bare.
A Ray of Hope: Discovering Scleral Lenses
Post the eye exam, my quest for better vision led me to Dr. Patrick Simard at Belanger Optometry in Montreal, a renowned keratoconus specialist and one of Canada’s top lens fitters.
Contrary to my expectations of being prescribed the same uncomfortable RPG lenses, Dr. Simard introduced me to scleral contact lenses. His confidence in these lenses’ potential to restore my vision was both surprising and reassuring.
Experiencing the World in High Definition
The moment Dr. Simard placed a sample scleral lens in my right eye, the world transformed. The clarity and comfort were unparalleled. For the first time, I glimpsed a reality I had never known.
This transformative experience led me to order my first pair of scleral lenses in August 2017. Dr. Simard’s words during our sessions resonated deeply, emphasizing the profound change these lenses would bring to my life.
Especially for someone who has had such poor vision for the amount of time I had. It would be quite an adjustment both visually and neurologically. That was an understatement.
Living with Keratoconus: A Personal Perspective
My journey with keratoconus has undeniably shaped my life’s trajectory. Many pivotal decisions were influenced by my vision challenges and, at times, a sense of denial.
While I may not possess the clinical expertise on keratoconus, my lived experience spanning over three decades offers a unique perspective.
Commitment to Awareness and Support
After regaining my vision in 2017, I made a solemn promise to never take it for granted. I committed to continuously learning about my condition, prioritizing my physical and mental well-being, and assisting others on their keratoconus journey.
This led to the creation of Living With Keratoconus.org, a platform dedicated to sharing experiences, triumphs, and setbacks, reminding everyone that they are not alone in this journey.
Crafting an Inclusive Online Experience
Understanding the challenges of low vision firsthand, I’ve designed Living With Keratoconus.org with accessibility in mind.
From theme selection to font size and color contrast, every element is tailored to ensure a user-friendly experience for those of us with keratoconus and vision impairments.
Paying It Forward: Sharing Our Keratoconus Journey
The Power of Shared Experience
One of the most empowering aspects of overcoming personal challenges is the ability to use our experiences to guide and support others.
As we navigate the intricacies of keratoconus, we gather a wealth of knowledge, strategies, and coping mechanisms.
This knowledge, born from personal experience, holds immense value for those who are just beginning their journey with keratoconus.
The Responsibility of Knowledge
With understanding and confidence in managing our condition comes a responsibility: to extend a helping hand to others. Remember the uncertainty and overwhelming feelings when we were first diagnosed?
By sharing our stories, insights, and lessons learned, we can be the guiding light for those newly stepping into the world of keratoconus.
Building a Supportive Community
Paying it forward isn’t just about sharing knowledge; it’s about fostering a sense of community. It’s about creating a space where everyone, regardless of where they are in their keratoconus journey, feels seen, heard, and understood.
By actively participating and contributing to the community, we ensure that no one feels isolated in their struggles.
Your Unique Story Matters
Every individual’s experience with keratoconus is unique, and each story adds a new dimension to our collective understanding. By sharing, we not only empower others but also enrich our own understanding of the condition.
So, as you find your footing and confidence in managing keratoconus, I encourage you to share, support, and uplift others. Together, we can create a ripple effect of positivity and hope in the keratoconus community.