Guest Author 6/22/2017

This is the second of 4 pages that Cathy has written.  You can read them all by following the link at the bottom of each page.

The Other Shoe, My Journey: Part 2 by Cathy Meggs

We are always looking for people to write for us.  If you are interested, let us know at light2sight5153@gmail.com.  I’ll be happy to help with the editing and I’ll put your words on the website.

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The Other Shoe, My Journey: Part 1 by Cathy Meggs

This has got to be some kind of mistake.

It was March 2008, I was 38 years old, married with an 8-year-old daughter and 10-year-old son. I had just started a new career as an insurance agent. My calendar was FULL! On top of my regular schedule with a busy young family – Boy Scouts, Girl Scouts, gymnastics, shooting club, & band concerts – I also had Chamber of Commerce meetings, Optimist meetings, and insurance training. So when I realized that I was about to run out of contact lenses, I hastily made an appointment at JC Penney Optical. I had a coupon for a free exam and discounted glasses.

When the day of my appointment came, I had scheduled a lunch with a client that afternoon, figuring an hour at the most for my optical exam. The optician at JC Penney was an older guy, kind of slow and deliberate. Why was he taking so long to look in my eyes with the magnifying eyepiece thingy? “C’mon dude, not another look!” He left the room and came back, looked into my eyes again! Then, he handed me a grid and said “Close one eye and look at the center. Can you see any wavy lines? Are all the grid lines visible?” “What the heck kind of test is this??” I reported that yes, all the lines were visible and straight. Now can I get my prescription and go? Then he stops me cold – he tells me he thinks I have macular degeneration. He sees drusen. He wants to refer me to a specialist and sends me on my way with an Amsler Grid. These are words I had never heard before – macular, drusen, Amsler Grid. ­­­­­ I had to reschedule my lunch, then back to the office. Where I Googled ‘macular degeneration’.

Well, that JC Penney doctor must be confused. Or maybe I heard him wrong. Macular degeneration is something that elderly people have to deal with. I’m sure this is all a mistake, but I made the appointment with the specialist anyway.

Two weeks later, I had my husband drive me to the specialist (RS#1). When I made the appointment, they told me to bring a driver because I would be dilated and unable to drive. So now my husband has to take off work, I have to take off work. What an inconvenience!! We get there, and the waiting room is full of canes, walkers, wheelchairs (and the grey haired people attached to them). “Oh whoa…this is definitely a mistake. I should not be here.”

But the doctor confirms that I do indeed have early dry macular degeneration, and explains what drusen means. He tells me to look at my Amsler Grid every day. If there are any changes, call him immediately. “Ok, bye-bye, see you in a year and go to Walmart to get AREDS vitamins”. Except he didn’t actually talk to me, he spoke to my husband only. So we left there with no intention of ever returning.

I had made a connection through the Chamber of Commerce of a local Optometrist who I really liked. I made an appointment with him to get a 2nd opinion – or 3rd opinion actually. Dr. Murphy would explain that macular degeneration was related to myopia (I was -7 and -7.5 at the time). He ran all the tests I would soon become so familiar with. He gave me the same advice – check the Amsler Grid daily and report any changes, take AREDS daily and fish oil pills.

And I did check it daily. And read horror stories on the internet of blindness, lacquer cracks, bleeds, wet AMD, dry AMD. I read so much, I overloaded myself. I had none of the risk factors – I have a slim build, never smoked a day in my life, no family history, general good health.

This has got to be some kind of mistake. I really don’t have time to go blind.


Cathy Meggs is 47 years old, married with 2 children – ages 17 and 19. She lives in a small rural town in southern Illinois, population 1900. Cathy is an insurance agent, School Board Secretary, President of the local newsletter, and involved in many different organizations in town. Her husband is amazingly supportive, but temporarily living in South Korea for a job assignment. Cathy’s children are well-balanced, achievement driven, considerate and kind. She and her family love to travel the world. Her daughter has been to Belize, Korea, Japan, Spain and Portugal. Her son spent his senior high school year in Japan, and currently attends University of Mississippi. Her hobbies include planning the ‘next trip’, writing, and community service work. She currently has wet myopic macular degeneration in remission (left eye) and advanced dry in the right eye.

Continue reading “The Other Shoe, My Journey: Part 1 by Cathy Meggs”

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The Other Shoe, My Journey: Part 4 by Cathy Meggs

I have enough shoes.

I now have advanced dry in both eyes, with some distortion. I’m officially at 20/50, but I have to struggle to see that line. I drive during the day, but read street signs? Heck no! I have a magnifying app on my phone (Galaxy Note 5 with a good size screen, extra-large font and bright back-light). I have a flashlight app. I have motion sensitive LED lights in all the closets, and my bedroom & bathroom. I have a magnifying mirror mounted in my bathroom so that I can see my face better. I try to look at restaurant menus online first so I can magnify the screen and read the entrée choices and not struggle in the dimly lit restaurants to see the menu. I sit with my back to the windows so my eyes & brain don’t struggle trying to adjust to light, dark, light, dark. I cut my toenails and pray I don’t clip my skin in the process. I read on a Kindle, or my computer. My kids are 17 and 19 now. My choice to stop driving at night coincided with my daughter getting her driver’s license. Ever had the stress of being with a new driver while also not being able to see very well at night? Not fun! But, it was actually very good timing – she could take me places at night, and I didn’t feel like a nuisance because she needed the supervised driving hours.

My vision is distorted as I look at the grid, or at my computer screen but not so much when I look out at the world in general. I just bought a 43-inch television to use as a computer monitor in my office. My work is very much connected to the Internet and computer, so I spend many hours a day looking at the screen. I have blue light filters on everything I can think of. I have a strong support system with my husband, sister, and children. I have many people in my community that I call friends, and can depend on to help me with rides at night if I need them. I belong to many organizations in town, and I run the local monthly newsletter. I have deadlines, appointments, and meetings to go to. My son is away at college, my husband is on a temporary job assignment in Korea (1 year left to go), and my daughter is an independent young lady.

Sometimes, the frustration of no night-driving gets to me. Sometimes, the feeling of impending doom of vision loss is hard to bear. “Waiting for the other shoe to drop” is a phrase I feel in my soul. (I actually looked up how that phrase came to be – pretty interesting!) I am blessed beyond belief. I still don’t have time to go blind, and I have finally been forced to admit that macular degeneration is a big deal. As for the future, I guess I really don’t like to think about it. Whatever happens, I will handle it and adjust.

And frankly, I have enough shoes – “so whoever is in charge can just keep that ‘other shoe’”.

Continue reading “The Other Shoe, My Journey: Part 4 by Cathy Meggs”

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The Other Shoe, My Journey: Part 3 by Cathy Meggs

The diagnosis was not a mistake.

My worry and anxiety kicked into high gear after this. Ok, so clearly the diagnosis of macular degeneration was not a mistake. This is happening. For real. I couldn’t sleep, couldn’t get my mind off of it. I got a prescription for a low dose anti-depressant that I took for a year and weaned myself off of. I had two more bleeds in the next few years. One happened while I was loading the washing machine – all of a sudden, there was a dark spot in my field of vision! The other happened while I was driving home from lunch with a friend. Poof! A dark spot in my field of vision. One bleed & injection happened the day before my 40th birthday party which was planned at a bar – a smoky, loud, fun bar. I wore one contact lens (because I didn’t want to wear my ugly glasses to a bar) and went to my party anyway! You only turn 40 once!

Each time, the Avastin doses cleared up the problem and my vision went pretty much back to normal. The recovery after each injection was about 48 hours. I consulted with RS#3 after a few years with RS#2. I still thought maybe there is some mistake with this diagnosis. Maybe there is some treatment that was being overlooked. RS#3 gave me the same tests, and the same advice. His equipment seemed newer and less noisy. Do you know how hard it is to hold your eye open while they shine an extremely bright light into it, and not blink while a random loud shutter-closing noise makes you jump? It is pretty near impossible! Injections administered by this RS are not as painful as RS#2, and the recovery time seems like hours rather than days. I am staying with RS#3. And my trusted local optometrist Dr. Murphy.

Over the years, I have made some adjustments to my life. I have not had a bleed in 4 years. My night vision is horrible. I stopped driving at night about a year ago, only night-driving around my little town that I know like the back of my hand. A few weeks ago, I stopped night driving even here in town. Everything is getting blurrier in general. When I was at 20/30 corrected. I thought, oh man – if this is as bad as it gets, I can totally handle this! 20/30 is no big deal! Then, at 20/40 corrected , “meh it’s not so bad! I can handle this, it’s no big deal.” Continue reading “The Other Shoe, My Journey: Part 3 by Cathy Meggs”

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The Other Shoe, My Journey: Part 2 by Cathy Meggs

Four hours later.

In August 2008, I noticed a blank spot on the grid with my right eye. So off to Dr. Murphy I go. “Yep, you have a blind spot. Keep watching the grid. Keep taking your vitamins. Eat fish and salads.” I told myself it was really no big deal! I can see perfectly fine with both eyes – the left eye & my brain just fills in the small missing spot. Then it slid out of my mind again.

I had a busy, busy life – I didn’t have time for this!

I often volunteered at school, going on all the field trips I could, attending class parties, etc. I ­­­ volunteered to chaperone my daughter’s 3rd grade field trip to The Magic House in St. Louis. It was April 2009. We had lunch at a park. It was sunny and warm, a beautiful day. One of the other moms had on a striped shirt. When I looked at her, I did a double take. The stripes on her shirt were swirling around. Now that is weird! One eye, normal. Other eye, a big swirl. One eye, normal. Other eye, a big swirl. Ok, what is going on? I knew from all my reading, that it had something to do with the macular degeneration. I didn’t say anything to anyone. Driving home, one eye – normal. Other eye – yellow stripe on the road had a swirl. One eye normal, other eye – the electric wires swirled. When I got home, got the kids settled, I dug out the Amsler Grid. One eye, normal. Other eye – “OH MY GOD!”

I called the next day and made an emergency appointment with Dr. Murphy, my trusted optometrist. He said to come in immediately. While seated in his office, he calls a RS that he networks with. BAM – I’ve got to go the next day to see him. I drive myself to RS#2’s office. RS#2 confirms I have a ‘bleed’ but my insurance won’t pay for the injection if it is administered the same day as the diagnosis. What!?? Ok, so I have to come back tomorrow. Again, I drive myself, thinking no big deal. People get injections all the time. I was very worried and anxious, but I am not a baby or a complainer. I told my husband “It’s no big deal! I’m sure I’ll be out of there in an hour, as good as new.”

Little did I know… four hours later, with dilated eyes and an achy, gritty eyeball, I actually went into my office to try and work. I quickly realized that a) you cannot read a computer screen when you are dilated, b) you cannot focus on sales calls when your eyeball is aching, and c) you cannot focus on working when you are scared and worried. I called my husband and went home.

I spent the rest of the day in my dark bedroom. My eyes hurt and I had to put globs of ointment in them. I didn’t want to tell my kids (age 9 and 11 at the time) that I had an injection in my eyeball. Imagine, being a kid who hates his/her vaccinations knowing that their mom had a needle poked in her eye! That’s the stuff horror films are made of… So I just told them that I wasn’t feeling very good and had a treatment to help my eye. That was a good enough answer for them.

I used the word ‘treatment’ every time after that. My kids knew I would be in bed after a ‘treatment’, it became routine.

Continue reading “The Other Shoe, My Journey: Part 2 by Cathy Meggs”

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Hike and Bike

Morning! I thought I was getting my routine back but I apparently was not totally accurate. I will be able to be in my exercise routine for a week – 7 days – and then it falls apart again. The Y is closed next Saturday for spring cleaning! Grrrrrrrrrr!!!!!!!!!

Maybe I can talk my husband into loading me and the bike into the car and taking me to a local rails to trails. Assuming they are all over the US but for our international readers, the United States made the (foolish) decision to send much, if not most, of the goods and people transported in the country by trucks and private cars. That left thousands of miles of abandoned rail beds. Many of them are being turned into walking and biking trails. Since there is no motorized traffic allowed on them and very few crossings, they make good places for low vision folks to exercise.

According to the website there are almost 23,000 miles of rails to trails in the country. I would be surprised, if you are in the USA, if you were located very far from one of those. There are four, two of them quite long, within 45 minutes of my house.

The two shorter ones are going to be connected soon. There are efforts to connect sections of trail all over. Or at least that is my understanding. That means people will actually be able to do bike trips of several days long if they wish, and they can do them on safe, easy riding trails.

Or, they can go out and back on a two-mile trail like I have generally done. However, in my own defense, that was when I had good vision and I could ride my bike almost three miles to get there.😸

My biking goal for the summer is to get someone – anyone! – to take me to the D&L (Delaware and Lackawanna, my grandfather was an engineer for them) trail. The section I have ridden and intend to do again is 26 miles long and goes from White Haven to Jim Thorpe.

26 miles sounds impressive, but it is not as bad as you may think. This section of trail is almost totally a 1% downhill grade and an easy ride. That is a good thing about rail beds. Often with only one engine and upwards to 100 cars, you did not want to be going up or down hills much steeper than that. Most of the rail beds, in Pennsylvania at least, have very easy slopes. (Slope is rise over run; remember?)

Canada has the Great Trail. I know nothing about it except the website says it is extremely long, 24,000 km which translates to approximately 14,600 miles. Sort of sounds like the AT on steroids. Check out the section you might be interested in for accessibility data.

The AT, Appalachian Trail, approximately 2,000 miles, Maine to Georgia. The section I know is a true ankle breaker and I would not recommend it for people who cannot see their feet. To prove my point? A blind man who hiked the AT was written up in extreme sports magazines! That was Trevor Thomas. He hiked the AT in 2008.

He was not the first, though. Bill Irwin, also blind, hiked the trail in 1990.    [Lin/Linda: Here’s a YouTube video from behind the scenes of the movie about this called ‘Blind Courage’ which is to be released in 2017.  Click here to get the book that he wrote called Blind Courage – it’s available as a Kindle e-book or through his website link.]

That said, there are easier sections. Check out your local section online or talk to a local hiker. A little research, a few modifications and my guess is you can get out and enjoy. Have fun! Continue reading “Hike and Bike”

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Happy 1st Birthday, Website! Feb. 25, 2017

Linda here: One year ago today I published the first page from our website (the Facebook group started in May).  There would be no reason to do what we do if it weren’t for the people who subscribe to our email updates and who are members of the Facebook group.    I asked our very first website subscriber to share her experience.  She’s an active member of our Facebook group as well.

Thanks for your continued support, Sharon Hynes!

Hello Everyone, I am a faithful follower of the website and of this amazing group and with the one year anniversary approaching of its inception, I would like to take this moment to recognize the contributions of the founders, Linda and Sue. Through their direction, this truly has become an interactive forum where every member has the opportunity to voice opinions, share stories and offer valuable information. Everyday people from many cities and countries ask Linda questions, knowing she will do her best to provide us with the latest research available. Then let the discussions begin! Informative, fun and yes, sometimes a few tears.

Sue’s inspirational stories are heart warming, such as her determination returning to work and travel after vision loss, certainly encouraging to others attempting to do the same.

I have learned so much in one year! The right foods to eat, vitamins, lighting, apps for my iPad, the importance of exercise, genetic testing, educational videos…..just to name a few. The home page is a wealth of information and easily accessible. Honestly, I have found no other site like it.

Four years ago I received my diagnosis. I was 58 years old working as a nurse in the ER and considered myself healthy but something was not quite right with my eyesight especially on cloudy days or at night. I was immediately shocked and humbled when I heard the words, ‘Macular Degeneration’. I am the type of person who likes having control and being prepared. Well, there is little control with dry AMD but through this site I have learned to be pro active with positive daily choices. In am presently in the early to intermediate stage of dry AMD with thinning retina edges exposing me to possible detachments.

There is still uncertainty as was four years ago, but I am no longer afraid. I first began with this group simply as a way of researching my questions but after one year, I must confess I stay because of the human spirit that is felt between the words.

Continue reading “Happy 1st Birthday, Website! Feb. 25, 2017”

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