New to the forum

Hi Everyone,

I'm new to the group and while I'm not new to visual impairment I have had a very dramatic change over the last few months. I'm really hoping to just get my story out. While my friends and family are super supportive it's difficult for them to really understand. I hope it's ok I post this here.

Warning- Long Post :)

I was born in the 1980s with bilaterial congenital cataracts that left me with only light perception. The lenses were not removed until after 3 months old and this was before IOLs were a viable option for children. As a result of the cataracts I ended up aphakic for 32 years with resulting nystagmus and amblyopia. I also had pupil and iris trauma from the surgeries.

As a child I had 4 additional eye muscle surgeries. My uncorrected vision was counting fingers and corrected was 20/80 in one eye and 20/100 in the other. For the most part my impairment was more of an inconvenience than anything especially as I got older. Because of the remaining issues I had depth perception problems and my vision level was/ is dependent on lighting. I received O and M training throughout the school years including cane travel.

I spent most of my life trying to fit in with the fully sighted world and was "passing" for a very long time. Interestingly the only times I felt completely normal/ myself were the summers I spent at (what I affectionately call) blind camp.

Back in 2005 I had asked my then ophthalmologist for IOL implants but he refused until I could no longer wear contacts, stating it was too risky.

Fast forward to 2012 and I started having a lot of trouble with corneal swelling. I went to one optometrist who just said the eye was irritated (even though it had been 7 days of excruciating pain and complete intolerance to light) It did clear up but then continued to happen over the following year so I found another optometrist who diagnosed it as chronic dry eye and I was put on restasis which has lessened the number of flareups but not solved it completely. I subsequently ended up with corneal scarring.

At my last appointment in Oct 2015 my vision had gotten slightly worse and my iop was hypertensive (but not emergency level). So I made an appointment with an ophthalmologist but couldn't get anything earlier than January. In January I had vitreal detachments in both eyes and my new ophthalmologist thought it was a good time to do the IOLs.

In February I went for the measurements and for the first time in decades I went a week without contacts. When I tried to put them back in after, both eyes rejected the contacts. The nystagmus and my job made aphakic glasses not an option while I waited nearly 2 months for the special equipment to arrive to do the implants. During that time I managed because I knew I'd get the implants and the doctor thought he could restore the vision to what it was with contacts.

I had the first surgery in April. Because of the complex nature of the case I was patched until the next day. The following day was going to be the happiest day of my life. I was going to see like "normal" people. It turned into one of the darkest days of my life. The patch was removed and I had lost a significant part of my peripheral vision (it was black) along with a black spot in my central vision. The doctor didn't have an explanation for it except the brain would learn to cancel it out.

My visual acuity that day was 20/200 and what little depth perception I had has become even further impaired. I was absolutely heart broken. I had dreamed for years of having the lenses and being able to see comfortably. The reality set in and hit me hard. For weeks everything around me was a reminder of what I could see before but can't any more. I had to do some serious self work to move beyond it.

I just had the second eye done last week. At my first follow up the vision in the first eye has dropped to 20/400 and the starting vision in my weaker eye (eye 2) is also currently 20/400. They will try to fit me for glasses at some point in the future but it's not clear how much vision will be regained. For now I have weekly appointments to ensure the retinas remain intact (there is a high risk for detachment) and that the sutures used to fix the lenses into place don't erode through the eye tissue.

It's been a way more stressful time than I could have ever imagined and I understand now why my previous ophthalmologist wouldn't do the surgeries until necessary. I'm glad I did it because without contacts my vision was worse than now and yet still being legally blind is a big adjustment. The biggest adjustment has been getting around the city alone and with the white cane. When I was young I resisted learning to use the cane. It wasn't relevant as I would rely on friends to navigate a 3D world. Most of the time they didn't realize I was even doing it. Now I have to rely on the cane. Even being guided (without the cane) is incredibly scary these days.

Traveling with the cane has created some awkward situations, everything from strangers grabbing me on the subway, to being called a "faker" because I don't look blind (whatever that means) It's been stressful as well in social situations with colleagues who had no idea before that I had any impairment and now I have a cane. None of them has said anything or asked me about it (they are too polite) but I wish they would instead of just staring during our conversations about other things. The only time someone asked me I was at a convention and was approached by an MD (who I didn't know). He asked me about the cane, I tried to blow him off. That didn't work so when I answered his questions about my vision he said "Well your only hope is to convert to Christianity". I nearly fell out of my chair LOL!

By profession I am a coach and soft skills trainer and since losing my vision both have become very interesting experiments. I have made it a personal mission to adapt the skills I have that rely heavily on sight and move them into other sensory channels since even the most basic of tasks, answer questions when people raise their hands, is impossible since I can't see the hands raised.

While things were very dark a few weeks ago. I am adjusting now to a new way of being.

Thank you so much for taking the time to read and let me just get all of this out.

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Re: New to the forum



Flyersgirl, When you start a vision rehab program, they will most likely offer you Braille lessons as part of your program. In most states, as a legally blind person you will qualify for these services by applying through the Vocational Rehab Agency. The Voc. Rehab Counselor will meet with you to determine what your work or study plans are and then refer you to all the services you may need to be employed or go to school and to live independently. Once legally blind, you qualify for many things and the government pays for them. In this process, you will learn how to apply for transportation for the disabled-Paratransit if it is available. Also you now qualify for the Talking Book Program through the National Library Services for the Blind and the vision rehab agencies can help you sign up for this. I LOVE this service and do most all of my reading with audio books. It is so easy to download a book and listen to it on my iPhone and totally FREE.

One other resource to learn Braille is the Hadley Institute for the blind. Again, they offer courses you can take at home at your own pace-adult continuing education classes and offer braille. Many people start with learning it by using the Hadley course. Here is the link to their site: http://www.hadley.edu/AboutHadley.asp

Be sure to look around VisionAware -it has some great information and resources for adults new to vision loss.
Best wishes,
Audrey


Re: New to the forum



Hi ADemmitt,

Thank you so much for the helpful suggestions. In many ways it's a bit weird because when I received o&m as a kid and teen I hated it but was told I had to do it because blindness in the future was a possibility. I never believed it would actually happen but wow am I glad now I had the training. This has definitely been an "interesting" time ;).

I'm going to be looking into these other resources as well. I'd like to learn braille (reading anything lengthy is pretty impossible and I really wish I would have learned when my vision teacher wanted to teach me as a child) Do you have any recommendations on resources to do that?

Thanks again for the welcome and and all of the helpful info.


Re: New to the forum



Dear Flyersgirl12,
Thank you for sharing your story here and I am sure you will find friends and support among us...You have been through so much with your vision problems and it is completely understandable that you have been stressed about it! Any vision loss and changes we experience with our various conditions calls for adjustments- emotional as well as adjustments in the way we do things.

It sounds like you have entered a new territory with your recent changes-the "land of the legally blind." This will require new levels of training, different tools to do tasks, and perhaps more support services. I have Retinitis Pigmentosa, which is a progressive loss of vision. Once I got to a certain level of vision loss, the things that were most helpful to me were: 1.contacting Vocational Rehab Services to help me learn to adapt my job tasks and environment so I could remain employed 2. getting connected to a Low Vision Clinic and starting vision rehabilitation to learn new O+M skills, adaptive technologies and computer, how to do activities of daily living safely and efficiently (like cooking, cleaning) and learning about all the resources available to people with visual impairments. 3. looking for emotional support through support groups, consumer groups like American Council of the Blind, Foundation Fighting Blindness etc.-even seeking counseling while going through the stages of grieving the loss of my vision. 4. Taking some online courses with the Hadley Institute for the Blind-"Self-Esteem and Adjusting with Blindness" was extremely helpful in my adjustment process. I think these steps are essential in learning to live with vision loss...and sometimes need to be revisited and repeated as we lose more vision. Even though you have lived with some visual impairment, this new phase may require new skills.

I hope you will pursue all that is available in the way of vision rehab services and the support you need. VisionAware has a national directory of services that can help you find agencies and organizations near you. Just narrow your search using your state at this link: http://www.visionaware.org/directory.aspx

it may take some time and patience with yourself, but you can learn to live with this new level of vision and still be independent and enjoy life... I have been legally blind for many years and actually worked as a nurse, raised 3 awesome kids, and continued to pursue my hobbies and interests. (albeit-adapted for vision loss!) I cross-country ski, ride a tandem bike, do yoga, hike, crochet, cook etc...You can do just about everything you want to do (except drive!) with the right training and tools. If you would like to communicate directly with me, feel free to write me at amdemmitt@afb.net Wishing you all the best as you find your way!


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