The Eyes of Glaucoma : Life is Good. Allyson's Inspired Spirit.

The Eyes of Glaucoma : Life is Good. Allyson's Inspired Spirit.: How do you get from traveling across the country for surgery in a town you've never seen by a doctor you've never met to saying “...

The Eyes of Glaucoma : Life is Good. Allyson's Inspired Spirit.

The Eyes of Glaucoma : Life is Good. Allyson's Inspired Spirit.: How do you get from traveling across the country for surgery in a town you've never seen by a doctor you've never met to saying “...

Life is Good. Allyson's Inspired Spirit.

How do you get from traveling across the country for surgery in a town you've never seen by a doctor you've never met to saying “Life is good?” And at the time I was only in elementary school. It took a lot of steps, small and large, to be able to say it out loud and many leaps of faith along the way.

My story starts out with first being diagnosed in California where I grew up. The reports were in from three different doctors. Each one saying that there were no more options, there was no other way. A highly specialized eye surgery was recommended and it was to be performed by one of the top surgeons in the country in Philadelphia, PA.

As a young girl, I didn't understand that this was the start of the path I'd be going down my whole life. The fear on my parents’ faces was palpable. Diagnosed with Glaucoma, Chronic Uveitis, Cataracts and Juvenile Rheumatoid Arthritis, I was a unique case. At the age of five I had to put my trust in those around me.

My parents and I traveled together to a strange land called The City of Brotherly Love, more commonly known as Philadelphia. There we were not only a part of a ground breaking delicate surgery - we challenged the social mores of the times. It was 1971 with racial tensions running high. The African American young lady I roomed with was having a similar surgery by the same doctor. We fought the same fight. We spoke the same language. We wanted the same outcome - a complete and successful recovery. The color of our skin was forgotten but we knew the color of each other's eyes - and heart. Our then unlikely friendship was featured in a local newspaper - not so much about the surgery, but more about the shared experience between patients and parents. We were in this together. While the outcome and experience was positive it began the surgical cycle of my life.

I have no recollection of having vision in my right eye. I failed the eye test in kindergarten and again in the first grade. I started learning to read Braille by the third grade. I've had 18 eye surgeries in my lifetime and I'm only 52. In 1989 I had my right eye removed and replaced with a prosthetic eye. The doctor took exquisite care to match the color exactly to that of my healthy eye. I have the video of the procedure to prove it. This video truly shows the process for the patient on creating a prosthetic eye. Please note this video contains some graphic content.

https://www.youtube.com/watch?v=Liamhj-boEo).

And still I say life is good. How could   I possibly?
How  do I cope? What drives me to have a n exemplary quality of life after all I've been through? My  support system is all encompassing. My husband of 25 years is my rock, my two children aged 22 and 23 are my safety net. I love to garden. I have great girlfriends that are available for adventures - wine tastings, kayaking and walks on the beach or out in nature. 

I very well could be completely blind someday. There are no guarantees in life. I think you have to be thankful for what you've been given, to reinvent and recreate with each challenge that's been thrown at you. I'm not saying it's been easy.


The last five years have been more difficult than any time since that trip to Philadelphia. I won't use a white cane although I'm legally blind. I'm a rebel - my canes are hot pink, canary yellow and Royal blue. I have many different types of assistive technology. Four years ago I had to give up driving. And I'm on my way now to meet my new guide dog.

And yet, I know that when you reach out to help others you help yourself. So I'm reaching out to tell you of my journey and hope it some way impacts you. Anyone can have glaucoma. Or any other disease of the eye. 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 ophthalmologist for a comprehensive exam. High-risk groups include African-Americans, Hispanics, people over the age of 60 or a the family history of glaucoma. Save your sight. It's up to you.

Please go to the Glaucoma Research Foundations web site www.glaucoma.org for more information. 

To learn more about Allyson's Go See Foundation who's mission is to encourage, inspire and empower those with vision loss to remain active annd engage in their world please visit her web site at GoSeeFoundation.org.

You  also find more information about glaucoma at http://www.brightfocus.org/glaucoma

This blog was written with Allyson's permission. If you'd like to tell your story please contact me at patcfield@gmail.com.

The Eyes of Glaucoma : The Power of WE. The inspiring story of Michael Be...

The Eyes of Glaucoma : The Power of WE. The inspiring story of Michael Be...: 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. The inspiring story of Michael Benson and The Visual Experience Foundation.

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.

Sitting at a Major League Baseball game enjoying the evening, the compliment I'd heard a thousand times came out of nowhere. "You have really nice eyes. Are you wearing contacts? Your eyes are so big and blue.” This single well intentioned comment stole my joy and took me to the fear of a made up future that always ended with me going blind and being alone someday. I would smile, say thank you and get quiet while my mind was off running amuck.

But for a young guy anxiously waiting for an upcoming doctors visit to find out what my eye pressures are and if there is more optic nerve damage, a emotional tail spin always ensued. The pending doctors visit would surely have me being told I needed another surgery. What if the surgery doesn't work? What if the person with me knew the truth about my eyes and that I could go blind? Would they feel the same about me? Am I being dishonest not saying anything? It sounds silly to me now, but it was all very real. Three innings went by I was certainly was no longer at the game. 

VEF Event

As I see it today, I was missing a sighted day worrying about a day that still many years later has not come. In most cases on that next eye visit my pressures were stable and I would leave happy - forgetting that I missed a great life experience. This never equated to Glaucoma or a part of having Glaucoma - and talking out loud about it. This is my message today. This is the part of having Glaucoma, RP, Stargardtz and all the eye diseases that are stealing our vision. We have to talk about it. Not talking about it almost killed me. 

 

I turned to drinking alcohol to shut my mind off.

I was an athlete and wouldn’t even smoke a cigarette and I found myself by 21 drinking or smoking marijuana daily with the thoughts that if I lost my vision I would kill myself. By the Grace of God in my life this November will be 33 years since I touched a drop of alcohol or any mind alternating substance. I hit a bottom and admitted that I wasn’t dealing with it all. This was the first step of living in the Power. Asking for help and telling others I was scared was a very difficult process for me.





Michael and famlly

I can only tell people what works for me personally. Today through no other choice but to surrender to have victory in my life, I listen to the quiet still voice that is always there and every day it says, “Michael, trust Me, I love you, you can either live in the power or you can live in the fear.” This may offend some who say “Oh is this religious talk?”  I can only tell people what works for me personally. I have a very interesting background as my Mother is Jewish and my Father an Irish Protestant. I was very confused about religion growing up but I knew there must be something that created all this. Today, I consider my self a Jewish believer in Christ. I am not jamming my belief on you. Whoever is reading this and whatever your beliefs are my message is to get in touch with your inner spirit. I know to live in the power in my life I had to stop asking why me? Once I started asking " How can you use me?" I watched a lot of fears begin to leave.

The journey of dealing with life on life terms and facing all that has come down the pike began. I wish it was the end of letting my Glaucoma affect my decisions but it wasn’t. Mr. Fear reared his ugly head again and the struggle continued.

My story continues....What about love? What if I never find someone that will accept me and the fact I could go blind? How can you possibly ask someone to accept that? I was in my early 30's and had a woman tell me she loved me and didn't care that I had Glaucoma. I really wasn't sure about us being the right fit to grow old together but there he was again - Mr. Fear. I love my children and wouldn’t change the fact that I got married and had them but I do want to share how Glaucoma drove this decision. I needed another surgery at the time and she wasn't leaving me. Did my lack of trust, fear and Glaucoma drive that decision? Yes this is the truth, Mr. Fear came knocking in every area of my life and by the way still does. Only through fellowship and taking one day at a time, staying in today and not some made up future can I be in peace with it all.


VEF Event

Then there was the driving force in my head “ I need to make a lot of money” not to compete with the Joneses, although that thought was present because I didn’t stop being human. But primarily because of that fear - my secret - what if I loose my vision? How could I support myself? I took risks and got stung big time as recent as 2006 where I had taken a company public prematurely and funded the company mainly with my own funds. And I lost it all. 

I share these few of so many lessons learned which are now what I have to offer you. I have also learned a fear shared is fear cut in half and a joy shared is doubled.

I am not out of the woods with advanced Glaucoma and I do not want to go blind. That is the truth. I am not in denial but I am claiming my eye sight each day. If it is my destiny that I lose my sight, I am convinced by the mentors that I have been watching from a distance - those who are blind and not using losing their sight as an excuse to fold up camp. They are living amazing lives. They are also teaching me that sight and vision are two different pieces of the equation. We may lose our sight but we never lose our vision. That’s a long way from the thoughts as a kid drinking everyday that if I go blind I am going to kill myself.


VEF Event

If you're not there yet then believe that I believe in you. You can borrow my faith until you are up and running on your own. That is the power of the fellowship. You can find support groups for glaucoma online. Take it off line meet in person if you can, talk on the phone, go to a doctors visit with each other. No one knows like W,E know. This disease doesn't have to ruin your life, you get to make the choice to have a purpose driven life.



Burning memories

April  2014 I was flying home from Iowa to NJ from a business trip when I heard deep in my soul “It is time to give it away to keep it”.  I said out loud “OK” in tears. I got off the plane that day and the Visual Experience Foundation was born. VEF is a calling to share with you and others these and many other lessons as we teach the "Burn It" technique. I was secretly doing this for years to hold on to visual memories in detail in case that day came where I wouldn't have my sight. We do this on location at bucket list wish destinations that our recipients want to see while they still can. We also do "Life After Blindness" events for the blind to send a message to the world and to those losing vision that your life is not over.

I hope that what I have to say will be meaningful or make a difference in your perspective that will help you through this 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. 

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

 

The Eyes of Glaucoma : This Ain't the Dress Rehearsal

The Eyes of Glaucoma : This Ain't the Dress Rehearsal: Hitting that snooze alarm again thoughts flood my mind - a to-do list a mile long.  I wake every morning, open my eyes and think to myse...

This Ain't the Dress Rehearsal

Hitting that snooze alarm again thoughts flood my mind - a to-do list a mile long. 

I wake every morning, open my eyes and think to myself I can still see. I close my eyes again and am grateful to have another day of vision. It's an everyday reality for me. I'm an artist, a designer. I've won awards for my work. To be judged by your peers and to come out on top is an incredible feeling. Then one day a doctor tells you "You have open angle glaucoma. You need to start treatment immediately to keep your eyesight". 

Barrier Free Bath

What? NO. NO. NO no no.....a clutching fear, a searing reality begins to fester and spread. My legs feel like someone filled them with Jell-O. "What? Maybe you're wrong!" my mind screamed silently.

Five years ago I was diagnosed with this horrible disease. I cried for two days. My eyes, my vision - my most prized possession - how could this be? My grandmother and uncle both had glaucoma. I was the lucky winner in my family genetic pool. I got the disease for which there is no cure. None. 

Everything went well for a few years. No issues, one eye drop a day. And out of nowhere Glaucoma decided to show me who she is. Pain, vision loss, uncontrollable pressure spikes, severe debilitating reactions to different drops. All at once I was hit with panic, struggle, anxiety attacks, loss of hope. Trying to work, drive - even just function was an astronomical task. And then surgery. A tube called a Baerveldt shunt was implanted in my left eye. Eight weeks recovery. I didn't believe the doctors. I thought I'd be up and running in two weeks. I was oh so very wrong. Complications and setbacks, fear and depression clouded every waking moment. Almost two years later my eye pressures are now stable - today. Yet that could change without warning. And I'm one of the lucky ones.

Eurostyle Kitchen Remodel

From a Glaucoma Support site I've gotten to know so many that aren't so lucky. Inspiringly brave, strong people that have had numerous surgeries, have many different forms of this disease, loss of vision and independence. And yet we keep pushing to live our lives, hide our pain, find joy in seeing what others take for granted. When I was first diagnosed someone told me not to expose my "weak spot", my vulnerability, my condition. "Don't let the WOLVES know" she said "You'll never work again". Glibly I believed her. She was wrong. For in bringing awareness to this disease we shine a light of understanding on how misunderstood this disease is.

Glaucoma needs to be taken seriously. We can't wish it away. Our lost vision won't ever come back. The eye drops have side effects that we don't talk about much because those drops are our lifeline to sight. We accept what the drops bring because there is no other way. Those drops are our new religion.

If we begin to acknowledge it - it exists. We have hope. Hope of new treatment. Hope of a break through in research. Hope for maybe one day a cure.

ADA Compliant Bath Remodel

Yes. I'm working again. I'm designing beautiful spaces for some wonderful folks. I specialize in Universal Design - making a room fully functional for the client now and as they live and age in the space. Believe me, I understand limitations. Sometimes I shut my eyes when I'm walking my dog should blindness become a reality. And while my dog is on the end of that leash I pray he doesn't spot a squirrel!!!  I wear sunglasses at night at times when I'm out. Not just because the lights hurt my eyes but because I'm a rebel and you've got to deal with the hand you've been dealt. We get one day, one life. Make every moment count. As one of my favorite clients always says "This ain't the dress rehearsal". 

Elegant Kitchen Remodel

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 information on Glaucoma please visit www.glaucoma.org, the Glaucoma Research Foundation's web site.
You can also find more information on the National Eye Institute's site www.nei.nhi.gov.
 It's your vision. Don't lose it.

All photos are property of Patricia L. Caulfield, LLC. Click on the photo to enlarge. See more of my work at http://patcfield.houzz.com/