ArtsAutosBooksBusinessEducationEntertainmentFamilyFashionFoodGamesGenderHealthHolidaysHomeHubPagesPersonal FinancePetsPoliticsReligionSportsTechnologyTravel

Macular Degeneration: Living with the Challenges of Low Vision

Updated on November 9, 2016
lrc7815 profile image

Linda lives in the foothills of the Blue Ridge Mountains in central Virginia. She is losing her eyesight to Macular Degeneration.

Source

We take so much for granted, don't we"? When we are young and healthy, we go through life without much thought of what it takes to just get by. Most of us get up every morning, go to work, run an errand or two, and spend the evening with family or friends. We rarely think about the details of those things. We simply do them without concern for when or how we do them. But then, life happens and all those routine things are anything but routine.

When my eyesight began to fade from age related macular degeneration (AMD), reading was the first real challenge I faced. I had barely adjusted to the loss when the next appeared, then the next, and the next. For a while my life felt like someone set off a chain reaction of challenges, Life felt like someone stacked the dominoes too close together and gave the first one a nudge. I had taken my vision for granted and was about to discover how much of my life was dependent on my ability to see.

What are the challenges?

Reading is a challenge

As an avid reader, I also loved the experience of holding a book in my hands. Trips to the library were part of my routine. I loved running my hands along the shelves until a book spoke to me or jumped off the shelf at me. I cried all the way home the first time I discovered that I could no longer read the titles or the names of authors on the library shelves.

As I prepared myself for living as a person with low vision, I knew there were options available that would allow me to keep up with my favorite authors and to broaden my horizons through books. Digital or audio books however would never provide the same feeling so I had no interest in them. I would find other things to do, I thought.

It has been over a year now since I was able to read a printed book and I have finally accepted that I can't live without books. As a result, I have looked at the options available. For anyone who can no longer see well enough to read, the following two resources can open the world of books to you again.

National Library Service for the Blind and Physically Handicapped (NLS):

Offered through the Library of Congress. NLS provides a lending library at no charge for both audio and Braille books. They also provide equipment for listening to audio books and, free shipping.

Audible.com:

An internet service that is affiliated with Amazon to provide audio books for a monthly subscription fee. Many of the books are author narrated. Books can be downloaded to your computer or an e-reader such as Kindle. Credits are also earned that can be applied to digital books on Amazon.

Local Library:

Visit your local library and ask about audio books. Most have a good selection of audio books available.

Shopping is a challenge

As my AMD progressed, other things became more difficult. My mother's birthday loomed on the horizon and I ventured out alone to shop for a gift. Mom has always been a sharp fashionista so I went in search of a new outfit. After several hours of sheer frustration, I returned home empty handed. I had never really enjoyed shopping but to discover that I could not longer read labels to determine sizes or prices was devastating.

I now do m most of my gift shopping on the computer. It;s not ideal but it is a suitable alternative. As a member of Amazon Prime Pantry I can buy many of my staple food and household items and have them delivered in two days for minimal shipping costs, A local delivery service takes my grocery list and does the shopping for perishables and produce and delivers them them for a reasonable fee. I discovered there are hidden benefits to my shopping challenge. The many options and promotions offered by the retail chains are no longer a temptation and my budget is reaping the reward. My grocery bill has been cut by at least 25%.

Source

Driving is a challenge

A few days after my failed shopping trip, it occurred to me that if I couldn't read to shop, I surely had no business driving. While teaching me to drive, my Dad had impressed on me the responsibility of commanding a vehicle. I remember him saying that in the wrong hands, a car was no less a weapon than a loaded gun. Having driven for over 45 years, I had taken that responsibility seriously. My driving record spoke for itself. I had one accident when I was 17 years old and it taught me a powerful lesson. I had never hurt anyone and I didn't want to start now. I had to consider giving up the privilege of driving. This would be the hardest decision of all.

It didn't happen immediately. Oh no, I could not just stop driving completely. I was far too independent to make that decision. But, I could limit my driving and still be responsible. Over the next year or so I gave great thought to where I would drive and what route I would take. Living in the heart of town made that pretty easy. The grocery store was only a mile away from home and my bank was only four blocks away. There was a drug store six blocks away and my primary care physician was in the same area. I vowed to give up driving for all but those things that were vital to remain independent. I began to accept that for everything else I would rely on friends family, or, public transportation. Nothing could have prepared me for how hard that would be.

When you are not visually challenged, it's easy to tell someone else how to function with low vision. Friends and family offer to take you anywhere you need to go. They tell you to call them if you need anything. Their offers are genuine and well meaning but there is another reality to living with low vision. Your schedule doesn't always coincide with the schedules of your friends and family. So, in addition to dealing with the changes of limited vision, there are the challenges of scheduling, being disappointed, or, of getting stranded. I'll share some examples to help you understand.

Scheduling is a challenge

Not so long ago I needed to take my dog to the veterinarian. First, I had to determine when the vet had an appointment available. Once that was done, the next challenge was to find someone available to take me. I am blessed to have many friends willing to provide transportation but many of them live outside the city in nearby counties. I began my search by contacting friends who live here in the city. None were available for the date and time the veterinarian had open. I expanded my requests to those who lived further away. I had no luck there either so I called the office again to request another date and time. After more than two dozen phone calls, the appointment was confirmed and transportation arranged. It had taken the better part of an entire day to make one appointment.

Software to reduce the stress of computing

Emotions are a challenge

When you are dependent on others for transportation, you have to prepare yourself to be disappointed sometimes. You know the old adage about "the best laid plans"? Well, it's true. All the planning in the world doesn't prevent the unexpected to occur. When you give up driving, you soon realize those things you took for granted. I never realized how often I ran out to pick up dinner simply because I was hungry for something other than what I could prepare at home. Okay, I'll admit that I am spoiled. I want what I want and I want it now, not a week from now. As a non-driving person, I've learned to wait. I wait for friends to invite me to lunch to satisfy those cravings for the oriental buffet or the chili rellenos from my favorite Mexican restaurant. And yes, I am always disappointed when they cancel at the last minute and tell me we'll do it again soon. I' learning to live with that too.

If I'm going to talk about the emotions, I must also tell you about feeling alone or, scared. Being alone never bothered me. As a person who can spend hours contemplating the universe, I have always welcomed quiet times. Even as a child I enjoyed spending time alone and never had trouble entertaining myself. That's the problem when you live with low vision. Your options for entertaining yourself change and can actually become quite limited until you accept your situation and decide to change it.

When doing the simplest things became hard for me, I began to isolate myself. It took several months for me to realize that I had become somewhat paralyzed by the fear of failure. I was afraid of going out and being confronted with something I could no longer do. I was afraid of having to ask for help. I was afraid to be in a crowd and not be able to differentiate between friends and strangers. One day it occurred to me that I no longer recognized the voice inside me. The once familiar voice that faced a challenge and screamed "just watch me" was now a weak whisper of "I can't" or "I'm afraid".

It doesn't have to be like that but it takes time and a bit of determination. First, you have to be honest with yourself. You have to give yourself permission to grieve your loss of vision and then to get angry. These are normal emotions and they will pass. Once they do, you will begin to see challenges as opportunities to learn a new way. You will soon discover that a new way can be a good thing and that if you embrace it, you will not be alone or afraid anymore.

If I have learned anything at all it is that every emotion is an important element to learning to live with low vision. Feel them, share them, and never, ever be ashamed of them.

Maintaining control is a challenge

Most of us want to think we are in control of what happens to us or around us. In truth, most of us fool ourselves into thinking we have more control than we actually have. When AMD robs you of your vision, you learn quickly that there are some things you can control and many more that you can't. You learn to let go of the things you can't control and fight harder for those you can.

At 60 years old, I have a reputation for not wanting to ride with anyone else. I like being the driver because it gives me control over the situation. I can leave when I want to leave. The loss of vision gives new meaning to being a control freak and after a recent experience, I may be worse than I ever was.

A personal story about losing control

A few weeks ago a close family member was hospitalized and I needed to be there to oversee their care. A friend offered to take me to the hospital and drop me off on their way to an appointment. Since the hospital is less than a mile from my home, I knew I could get a taxi for my return trip home. Little did I know.

When I was ready to come home, I phoned each of the three taxi services in town only to be told to call another one. Each of them said it would be hours before they had a taxi available and I would have better luck calling another company. For the first time in my adult life, I was stranded. It took a while for me to realize that the distance between me and home was so short that none of the taxi's felt it would be financially worth tying up a car.

I'll be honest. Of course there were other options and I considered them all.

  • I could wait for a bus that would let me off on the side of a busy thoroughfare and force me to cross four lanes of oncoming traffic.
  • I could walk the short distance. I am not totally blind but because of my low vision, I have no depth perception. Walking along the shoulder of a busy road when you cannot judge the distance between you and oncoming traffic is dangerous. My low vision affects my ability to detect neural colors such as taupe or gray. Cars of those colors are invisible to me unless I detect their movement and even then I cannot judge the distance between them and me. This too was dangerous as I would have to cross a busy street.
  • Or, I could start calling my list of friends and hope that someone was available to pick me up. I hate calling friends on the spur of the moment. To be honest, I just plain hate to ask friends.

As I sat in the lobby stressing over my situation, my phone rang. When I answered, I heard the familiar voice of a friend say "What are you up to?". I shared my situation and my frustration to them and they immediately volunteered to give me a ride.

Once I was home again, I realized that my anxiety had solved nothing. The situation was nothing more than one more challenge to be overcome. The experience was an opportunity to learn to do things differently. It was a lesson in learning to ask for help.

The bottom line

I won't lie and tell you that life with progressive macular degeneration is easy. It isn't easy but as I am learning, others have been here before me They have met the challenges and learned to overcome them. There are resources available to help with even the most mundane tasks. We simply have to be willing to change a bit. For every problem there is a solution. Ask for help. Find a support group. Network with others on the Internet. Reach out to civic organizations that help the blind or visually challenged. Help is available but first we have to admit that we need it.

© 2015 Linda Crist

Comments

Submit a Comment

  • bravewarrior profile image

    Shauna L Bowling 24 months ago from Central Florida

    Linda, it's great to see you writing again. I'm real sorry to hear about your failing eyesight. I've had to wear glasses to read for the last several years, but I can see objects and people just fine. I can only imagine how scary your situation is for you. And frustrating; I know how independent you are. But you're also strong. You have the will, therefore you'll find the way - just as you're doing.

    I know you can still find the Witch's Tower. Close your eyes and meet me there in an hour.

  • MizBejabbers profile image

    MizBejabbers 24 months ago

    Oh, dear friend, Linda, this just overwhelms me with emotion. It is so scary, but I'm glad you are learning to cope with it. Transportation is probably the most pressing problem to someone who is not able to drive. One suggestion, but it may not be available to you. I don't know how large your town is, but in Little Rock there is a service run by the public bus transportation company especially for the disabled. It runs small buses and vans instead of a large bus. A blind couple rented from me for six years, and they used this service to get to and from work. It cost a little more than taking a bus because it accommodated their hours, but it was still affordable. I see blind employees with white canes boarding and getting off these buses at our building.

    Mr. B has been receiving books for the blind for the last 10 years. He went totally blind, but after he had surgery on his one good eye, he regained his sight. However, reading is so painful with one eye that he was able to keep his audio books. I use a Kindle so I can enlarge the print, and I hardly ever read a paper book anymore.

    I've told you before that I was diagnosed with AMD, but I'm hoping that was a misdiagnosis. I got very unhappy with my eye doctor and changed to another. I told the new doctor that I had histoplasmosis scars on my maculas and that I had been diagnosed with macular degeneration. Also I had not had any progression in the last 7 or 8 years. He said that "histo scars on the macula are macular degeneration". So I still take my eye vitamins and hope it doesn't get any worse. I don't know what I would do if I had to give up driving. Mr. B is a holy terror on the road, and I would have to be totally blind to ride with him on a permanent basis. When I broke my leg last year, riding with him was more painful than the leg.

    I'm praying for you and hold you in love and light. You are a dear person and I value your friendship. Life isn't easy. Sometimes I wonder why we signed up. Hang in there.

  • billybuc profile image

    Bill Holland 24 months ago from Olympia, WA

    Painful to read but so important to write. Kindred, I literally can't even imagine. I have been so blessed. I'm the first to admit it and I take note of it daily. I'm so sorry you have this....but you are Kindred, and I know you will never, ever let something defeat you. Carry on. Here are some hugs to help you, today and always.

  • lrc7815 profile image
    Author

    Linda Crist 24 months ago from Central Virginia

    Sha, you are right. I will always be able to find that bell tower. lol Thanks for the encouragement. I had almost convinced myself that writing was a thing of the past. I am such a perfectionist and had lost my confidence in my ability to detect typos. Even with the speech to text software, you still need to eyeball the text for mistakes. This hub was a test run to see if I could handle the stress of writing while watching for mistakes. It's not my best work but I'm okay with that. It served it's purpose. It got me out of the slump and also gave me an opportunity to share some of the resources and frustration. As you said, I will not lay down and let this vision loss get the best of me; not as long as I still have friends like you to urge me onward and upward. Love ya lady!

  • lrc7815 profile image
    Author

    Linda Crist 24 months ago from Central Virginia

    Miz B - hello my friend! I guess they got your notifications working again. lol Rest easy Miz B. Don't worry about me. I am tougher than nails and this hub is the first sign that I'm on my way back up. I hit a slump for a while but it was a combination of life events that kept me there. I gave up driving in April, lost my Dad in May, and my Mom broker her hip in June. It was horrible not being able to jump in the Jeep and go where I was needed. Being so stubborn often means that the lessons come harder and faster until you have no choice but to learn them. I'm learning, trust me. I had no idea that Mr B had lost his vision but a thrilled to hear that some of it was restored with the surgery. Does he complain about depth perception. I swear it takes me 30 minutes sometimes to plug an appliance into an electrical socket. My sense of humor is becoming well developed. You mentioned the "short bus". We do have that service here and I have applied to use it. They charge $4.00 for each ride which is certainly affordable and if I am approved it will be a great help. I have not registered with the Department for the Blind yet but that will be my next move. They will assign a case worker to help me sort out the things I can do and those I need help with and, they will open the door to some grants that will help with some of the assistive technology that is available. It's all good but yes, there have been times when I wondered why I signed up for this shift. It's so good to hear from you. We should get back to emailing occasionally to keep up. Sending you an abundance of love and light too.

  • lrc7815 profile image
    Author

    Linda Crist 24 months ago from Central Virginia

    Kindred, I've missed you. Yes, I'm a bit battle scarred but NEVER defeated. This hub, (it's rather long, isn't it?) was an experiment to see if I could push through the paranoia. My confidence was shaken about writing when I started having problems seeing whole characters. It drives me nuts to publish and then find typos. So, I am back on a limited basis and hope to be more creative and polished in my next piece. We'll see if I have it in me still. Hope you are enjoying the summer on your little farm. I love watching it from afar but wish we could share a cup of coffee in your backyard one day while the chickens cluck and the goats leap over tall buildings made of pallets. Hugs returned to you.

  • Ericdierker profile image

    Eric Dierker 24 months ago from Spring Valley, CA. U.S.A.

    I had a mom, and now two older sisters going down this path. This will help ground my thoughts in trying to be supportive. We find many people who have not given their thoughts much to nurturing their spiritual side begin to become more aware in that area, with the onset of such "disabling". I think you do great service in addressing the loss of control and that it must be dealt with in a healthy fashion. Thank you for a wonderful article.

  • MizBejabbers profile image

    MizBejabbers 24 months ago

    Apparently they did get my notifications working and now I'm inundated LOL, but I can't complain. Yes, my husband was blind for three or four years. He lost one eye in the Air Force, probably from Agent Orange contamination because he cleaned out Agent Orange tanks on the planes he serviced. Oh, but the VA says he was never exposed to AO, however, he does get a 30% disability for the loss of that eye. He did finally find a surgeon outside the VA willing to operate on his "good eye" that had developed a crystalline cataract. He has complained of poor or no depth perception as long as I've known him.

    I've been thinking about you, and I've wanted to email you but life has interfered. I don't even have my taxes for 2014 done yet. I'm going to a conference in Seattle next week, and maybe we can get together privately when I get back. I, for one, know that you will never be defeated. Love and light.

  • lrc7815 profile image
    Author

    Linda Crist 24 months ago from Central Virginia

    Eric, it's good to see you again. I am sorry that you have family dealing with the loss of vision. I know that you must be a great support for them spiritually and physically too. None of us is immune from life's challenges. We all have something that we struggle with. But yes, out strength for the fight comes with acceptance of our situation and our willingness to alter our course. I am learning. My best to you and your family. Thank you for your support, always.

  • lrc7815 profile image
    Author

    Linda Crist 24 months ago from Central Virginia

    Miz B, I understand how life gets in the way. No worries. I did know that Mr B suffered from AO exposure but we had never discussed the effects. Don't get me started on the subject of the VA. I've been fighting them for the past two years over my Dad's pension. They are idiots. Enjoy your trip next week. Take time to catch your breath when you retreat to your room at night. We can catch up when you do. Love you too.

  • BlossomSB profile image

    Bronwen Scott-Branagan 23 months ago from Victoria, Australia

    Thank you for sharing your personal account of the problems that you have met with as this nasty disease progresses - that's very brave and will be a help to many of us who may face similar things in our lives as we age. Blessings to you.

  • Shyron E Shenko profile image

    Shyron E Shenko 18 months ago from Texas

    Dear Linda, thank you for sharing this with us, you are such a positive inspiration to all your followers.

    My mom had AMD and she was so frustrated much of the time. When the eye surgeon did her cataracts it did help a tiny bit.

    Before my cataracts were ripe I looked into getting Dragon software for my computer so I could just tell my stories and the computer would just type them in, but like MizBejabbers I went to a different eye doctor and Dr. Jung Lee, did cataract surgery and inserted the "Restore" lens. Dr. Lee also did my husband's cataract surgery. What a blessing.

    I am sorry that I missed reading this when you first published it.

    Blessings and Hugs Dear Linda, you are a special person, you give me courage that I can face each day and deal with whatever life throws my way.

  • lrc7815 profile image
    Author

    Linda Crist 18 months ago from Central Virginia

    BlossomSB, I am so sorry for the delayed response to y our comment. Thank you for visiting and taking the time to read this hub. I do think it is important to share our experiences so that we can learn from each other. I hope mine helps someone.

  • lrc7815 profile image
    Author

    Linda Crist 18 months ago from Central Virginia

    Sharon, thank you so much for your generous compliments. I probably need to revisit this hub as my vision has diminished significantly since it was written. How happy you must be to have had such an improvement after the surgery. After more than a year of trying, I still have not conquered the challenges of the Dragon software. It is far more complicated than the company would have you believe. I actually gave up on it and probably need to try again. I do miss writing and especially on this subject because I feel like I have so much to say. Ha! Ha!

    Thank you for the visit. I wish you all the best.

Click to Rate This Article