The Eyes of Glaucoma : The Power of "WE." Michael Benson, founder of the ...

The Eyes of Glaucoma : The Power of "WE." Michael Benson, founder of the ...: I was born in December of 1961 and suddenly this happy day became a nightmare for my parents. I was immediately taken from my Mother'...

The Power of "WE." Michael Benson, founder of the Visual Experience Foundation shares his story. Part I

I was born in December of 1961 and suddenly this happy day became a nightmare for my parents. I was immediately taken from my Mother's hospital room in New Brunswick, NJ and bought to NYC to become the youngest baby in the world to have Glaucoma surgery performed by Dr. Aldolph Posner. 

My name is Michael Benson. Being asked to tell my experiences for this blog is a honor and a privilege. I now consider sharing my strength and hope a calling to those who are being effected by a diagnosis of unstoppable vision loss. My Glaucoma diagnosis was never linked to my family tree. It took the birth of my two children and having them testing them at birth to face the reality that if that they had Glaucoma there would be no question that it was be passed from me. They will continue to be tested throughout their lifetime.

Perhaps you have been diagnosed with a form of eye disease or someone you love - a spouse, child, or close friend - has been diagnosed with Glaucoma. I hope that what I have to say will be meaningful or make a difference in your perspective that will help you through this hallway of life. I will begin by telling you that WE are traveling this road together and that "WE" is a powerful word. You are not alone. 

I have flashbacks of yelling at my parents as a confused teen. I told them I hated them, this disease and it was all their fault. I had emotional breakdowns trying to deal with it all. I am so grateful that the care I have received over the years has maintained my vision. But growing up with Glaucoma what wasn’t discussed was how I was feeling. I believe that the unique timing of the advancement in technology has saved my vision up until now. And gratefully, the information age allows us to be connected by reading this blog together as a "WE." A "WE" that are uniquely qualified to empower each other.

I am you and you are me.

I felt so alone growing up with my secret that none of my friends knew. According to the doctors, I was slowly going blind. As I have aged medical technology has continued to advance to maintain my vision well enough to live a normal life. That includes still driving, working, going to concerts and starting a foundation. I know that I am blessed. Today I never take a sighted day for granted. I have come to believe in my heart that gratitude is truly an action word.

My experience and your experience can help others who feel they are alone. WE can do this thing they call life on life terms together. I have found that a big part of living and coping with eye disease is my attitude. I am convinced that there will be cures in our lifetime. This is an important frame of mind to believe in as the hopelessness that I struggled with in my younger years was always circumvented by the discovery of more effective eye drops or a new surgery that had been developed. Hope would show up once again. This is not denial - it is a mind set and you have a choice.

This is just a short blog and as I am writing I know that I have so much to tell you. Perhaps I will write it all down some day but for today I want to share with you a few of the ways my eye disease has driven decisions in my life. It is always the same problem, just hidden in many forms, degrees, shapes and sizes. The only consistent part of Glaucoma has always been "Mr. Fear" who shows up unannounced and sets up camp in my mind.

End of Part I.

Glaucoma isn't picky. It can strike anyone at any stage of life. There is no cure. Vision that is lost cannot be regained. Get the facts. Schedule an appointment with an ophthalmologist for a comprehensive exam today. Glaucoma can happen to anyone, anytime. A high risk group includes having a family history of glaucoma, being very nearsighted or diabetic. African Americans, Hispanics, also being over the age of 60 increases the risk. You can be born with glaucoma. There is treatment - lifelong treatment - once you are diagnosed. But you must be first diagnosed.

For more information please visit www.glaucoma.org, the Glaucoma Research Foundation's web site. It's your vision. Don't lose it.

To learn more about Michael Benson please visit his website www.visualexperiencefoundation.org or www.lovevision.org

The Eyes of Glaucoma : The Thief of Sight. One man's story.

The Eyes of Glaucoma : The Thief of Sight. One man's story.: "The Thief of Sight" they call it. I would have to agree. On the way home one night I couldn't figure out why my left eye ...

The Eyes of Glaucoma : The Thief of Sight. One man's story.

The Eyes of Glaucoma : The Thief of Sight. One man's story.: "The Thief of Sight" they call it. I would have to agree. On the way home one night I couldn't figure out why my left eye ...

The Thief of Sight. One man's story.

"The Thief of Sight" they call it.
I would have to agree. On the way home one night I couldn't figure out why my left eye would always tear up like I was crying. I didn't pay much attention to it until that night. I took off my glasses, trying to see what was wrong. I covered my left eye then looked through my right eye. No problem there. I did the same with the left eye and realized that I could hardly see. Everything was clouded. Maybe it was the was night time, I thought, because everything I saw was a blur. I realized right then there was a problem. I didn't know what to do, where to go, who to turn to. 

Being the smart, resourceful gentleman that I am, I tried to figure out what was wrong with my left eye. I started researching blurred vision on the internet. That's when I came across the word "glaucoma" for the very first time. No, that couldn't be it. That disease leads to blindness, I thought. I told myself that can't be what I have. I scheduled an eye exam which was difficult because I had no health insurance. During the exam I kept asking the doctor questions - "What's going on with my eye? Will this just clear up? What about an antibiotic?" And on and on. "Just give me a minute, I'm almost finished" the doctor finally replied. 

He completed the exam and said words I'll never forget. "You have glaucoma". I almost fell out of the chair. That was the last thing I expected to hear. It was a sentence not a statement. A life long sentence. My first thought was that I'll go blind. How will I cope with this? I have to work. Will I lose my job? My family. Will I never see them grow, their faces, their smiles? Fear gripped me and didn't let go. 

I remembered my grandmother had glaucoma. Whenever we visited with her all the lights were on, some even  burning bright with no lampshade. Yet she would ask  "It's so dark in here. Is that lampshade off? Is that light on?" We had no level of understanding. Why couldn't she see that the light was on? Was this going to happen to me? A diagnosis of glaucoma is paralyzing. It's overwhelming. Your life will be changed from the moment you hear it. And no one can really understand the despair, the worry, the "why me" that swirls around in your head making it hard to breathe. 

I was given a prescription for eye drops that I'll take for the rest of my life. And pray that's the only treatment I'll ever need. I left the office devastated and depressed. Now what. I'm going to go blind. I couldn't shake it from my mind. A dark heavy depression set in. I'm a single parent. My son is in his last year of high school. What am I supposed to do now? 

I'll go on. I'll faithfully take my drops every day and have regular check ups. I'll pray for a cure, a new treatment, a breakthrough everyday. I want to live to see my son grown, happy and with a family of his own. I want to see it all. 

John was diagnosed with open angle glaucoma in his mid 50's. And while he is considered at high risk for glaucoma - family history, African American - there was no warning, no pain, just a teary and blurry eye. If you're at high risk get the facts. High risk includes being over the age of sixty, being African Amecrican, Hispanic or having a family history of the disease. The fear after diagnosis is very real. Every day. Call your opthamologist for a comprehensive exam. There is treatment but you must first be diagnosed. Anyone can have glaucoma at any stage of life. Vision lost cannot be regained. 

Glaucoma can cause blindness if it is left untreated and is the leading cause of blindness in the US. And unfortunately approximately 10% of people with glaucoma who receive proper treatment still experience loss of vision. There is no cure.

Don't this thief steal your sight. Get the facts from the Glaucoma Reseach Foundation www.glaucoma.org.  

This blog has been published with John's permission. He is living through this now. Find a cure. Please. 

If you'd like to share your story to help create glaucoma awareness please contact me at patcfield@gmail.com. And, if you will, share this blog. Thank you.

The Eyes of Glaucoma : A Quiet Courage. Caroline's path.

The Eyes of Glaucoma : A Quiet Courage. Caroline's path.: I don't know "normal". Diagnosed with congenital glaucoma at 3 months old, I have no concept, no recollection of "normal...

The Eyes of Glaucoma : A Quiet Courage. Caroline's path.

The Eyes of Glaucoma : A Quiet Courage. Caroline's path.: I don't know "normal". Diagnosed with congenital glaucoma at 3 months old, I have no concept, no recollection of "normal...

A Quiet Courage. Caroline's path.

I don't know "normal". Diagnosed with congenital glaucoma at 3 months old, I have no concept, no recollection of "normal" vision. At 3 months old the world should have been a wonder to explore, big and bright, not a series of surgeries.

My name is Caroline. I'm a 21 year old college senior.

Both my Father and younger sister have glaucoma and yet the doctors were surprised that it was passed on to me. I've lost count of eye surgeries. They pierce the years from infant through 8th grade. I've had more than one trabeculctomie, goniotomie and an Ahmed valve. The nurses at St. Louis Children's Hospital remember me as a baby- my future in their hands and those of the surgeons. I know what medications will make me sick. I can tell the nurses the best vein to start an IV in. The hospital visits, procedures and follow ups consumed a large part of my young life. But while I had those challenges, my most difficult challenge was just being a "normal" kid.

Growing up as that kid that was always in the hospital, I was often the odd one out. Peer pressure, groups of friends, cliques and adolescent angst made me just want to fit in. I longed to participate in sports but at the age of nine I had to give up the softball team, leaving my friends and team mates behind. Contact ball sports were deemed unsafe due to the ever present potential of head injury. The fact that I always had to wear sports goggles made me the subject of chatter I did not want. I wanted to be like everyone else. Normal.


I turned to swimming. The buoyancy of the water, the freedom of cutting each stroke with a purpose, each kick became a boost that empowered me to keep pushing forward. While there were limitations - sports goggles are an absolute - water from a public pool, lake or ocean can never enter my eyes for fear of an infection that could take away my sight.

While I'm grateful that I have my vision and that eyewear has come a long way there is still that sense of self-consciousness the comes with it. I'll never show my true face without the mask of prescription glasses. Contact lenses are out of the question. It's a small price to pay I know. Glaucoma teaches me lessons every day. Yes, I wear glasses but I can drive! My doctors thought that would never happen.

One of my favorite quotes is from Charles Swindoll - "Life is 10% what happens to you and 90% how you react to it." While I will never regain my lost vision or play contact sports I still have hope for the future. We need to find a cure, a better treatment for this misunderstood disease and keep a positive attitude.

Despite it all I'm a pretty typical senior in college, double majoring in finance and management. I started my life with congenital glaucoma but it does not define me. In less than a year I will graduate from college.

My name is Caroline. And I will be a college graduate - not a college graduate with glaucoma. And I have hope, hope for a cure.

Glaucoma can strike anyone at any stage of life. There is no cure. Vision that is lost cannot be regained. Get the facts. Schedule an appointment with an opthamologist for a comprehensive exam  A high risk group includes having a family history of glaucoma, being very nearsighted or diabetic. African Americans, Hispanics, also being over the age of 60 increases the risk. You can be born with glaucoma. There is treatment - lifelong treatment - once you are diagnosed. But you must be first diagnosed.

For more information please visit www.glaucoma.org, the Glaucoma Research Foundation's web site. It's your vision. Don't lose it.

This blog has been written with Caroline's permission. If you'd like to share your story please contact me at patcfield@gmail.com. Thank you.