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We Can Change – The Power Of Community

We Can Change – The Power Of Community

“Life has changed me from being fearful and insecure, into now working to help others find themselves and reach for the resources and tools they need to thrive.”

~Carrie Morales

The Struggle of Growing up with a Visual Impairment

1. We Can Change – The Power Of Community image of Carrie and her son description is in the body of the post.
1. Carrie Morales

Growing up being legally blind with Aniridia was an immense challenge. Aniridia is the lack of an iris and the underdevelopment of the eye. In my case, it also comes with glaucoma, cataracts, microcornea, and nystagmus.

I struggled with insecurity, lack of confidence, loneliness, and a general sense of un-belonging. Though surrounded with other family members who were also blind or visually impaired, I felt disjointed from the rest of my peers. As a result, I was never able to fit in despite all my efforts.

I struggled and concealed my depression and hurt with rejection, when people avoided or gossiped about me, and asked things such as “why do your eyes move like that?” or “what’s wrong with her?” Because of microcornea, my eyes appear smaller and nystagmus causes my eyes to constantly and uncontrollably move around.

I wasn’t “normal”.

My defense was to emotionally detach. I was shy and became shyer and there would be days that I didn’t speak to anyone unless forced to by a teacher.

What brought me out into the proverbial light was the help and support I found through community.

Beginning to Find Myself

My TVI (teacher for the visually impaired) told my parents about a summer camp for the blind. That camp literally changed my life as I thought I was alone, the only one struggling, but I wasn’t. It was through that program and others, I met fellow peers who shared my struggles. Attending these programs while in high school and transitioning to college taught me so many things. I learned independence, life skills, assistive technology, social skills, and leadership.

What’s more, I saw other people who were blind and visually impaired being successful. I met and interacted with those who were living their dreams and striving toward their goals. This is what I wanted to do; to be like them, to have confidence and show that I was able. To reach past what society said I could and could not do and surpass even my own expectations.

As a teenager, I stumbled and fell, was reckless, and made bad decisions. But life continued and led me to eventually move with my family to North Carolina. It was here I took a job at a company that hired many blind people.

Starting out in manufacturing, I was promoted to being a receptionist. Eventually, I began working at the low vision center that was part of the company. NC is quite different from New Jersey which is where I mostly grew up. In the northeast, people generally mind their own business and didn’t speak to strangers.

Well, North Carolina is the opposite. People would ask how I was, about my life, what I liked to do —all in the first interaction! Oh my, it was such a culture shock, to say the least. Yet, it pried me out of my shell and changed me.

A Force of Change

I went from being anti-social to not being able to stop talking. Over time, I gained more confidence and learned how to present myself.

I’ve always loved technology and had a thirst for knowledge. Through my time working at the low vision center, I learned so much. I gained experience in:

  • services,
  • resources,
  • government agencies,
  • available technology,
  • and met countless people with differing amounts of vision and needs.
2. Pablo & Carrie image description is in the body of the post.
2. Pablo & Carrie

Along the way, I met my then to be husband, Pablo; we moved in together, got married, had a son. Due to the high costs of childcare and transportation, I decided to stay home with our son. Becoming a stay at home mom allows me the opportunity to invest in him completely as my father did for me.

With Little Pablo being the first child, it was so exciting learning and enjoying him. This new life, a whole bundle of potential is everything to us. We found out that he has aniridia like me. Though it hurts because we all want the best for our children, he’ll be okay. I know that he will grow up with all the resources and support he will need.

As life went on I grew accustomed to the new way of life with a little one. Settling into my routine, I began to have more time. It was in a moment of looking for something to do besides the day-to-day tasks, I had an idea. I decided to start an organization to share what my husband and I have learned and give others encouragement. Afterall, we all have it within us to continue, to move forward, and to reach for our goals.

A New Journey

3. Big Pablo & Little Pablo image description is in the body of the post.
3. Big Pablo & Little Pablo

I grew up visually impaired, but my husband, Pablo, went from fully sighted to totally blind.  None of us have the same exact stories. We have our own journeys, but we still face similar struggles and we can support and help each other.

I began my youtube channel (Live Accessible) and website (http://liveaccessible.com) on November 1, 2018 and am amazed at the growth we have had.

Our mission through our YT channel and website is to share hope, encouragement, community, resources, tips, and technology to help others who are blind, visually impaired, and sighted supporters. Along the way, I’ve made many friendships, met so many amazing people, and have learned so much from my viewers.

I’m grateful for the opportunity to give back to this community. Together, we can make this world into a better place where we can tear down invisible barriers in society and in this world through raising awareness, mutual support, technology, and creativity.

We can all live accessible.

We Can Change – The Power Of Community Featured Image Description:

Outdoor selfie of Carrie Morales smiling. Carrie’s long black hair frames her pretty face. She is wearing a black leather jacket and a black top embellished with silver accents on the neckline.

Additional Images:

  1. An outdoor selfie of Carrie and Little Pablo. Carrie is holding Little Pablo with her right arm and she’s wearing a blue long-sleeved sweater. Little Pablo is wearing a red fleece jacket.
  2. Big Pablo & Carrie share a sweet embrace. They are standing outside and sunbeams are illuminating Carrie’s hair.
  3. Big Pablo is standing on a lawn holding Little Pablo in his arms with his white cane tucked under his right arm. Both are casually dressed and wearing sneakers. Little Pablo has on a red puffer jacket and his dad has on a navy blue jacket.

Connecting With Carrie:

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June is Cataract Awareness Month

Cataract Surgery Can Be Beneficial for People with Retinitis Pigmentosa

The Morning of Cataract Surgery
The Morning of Cataract Surgery

By Audrey Demmitt
I have Retinitis Pigmentosa and two years ago my retinal specialist noted on a regular checkup that I had developed cataracts on both eyes. The cataracts were sitting right in the center of my only remaining window of vision. They were the type of cataracts that are commonly found in RP patients. About 50% of patients with RP develop them.

My doctor explained that post sub-capsular cataracts or PSCs are located on the backside of the natural lens and the pouch which holds the lens and they tend to grow quickly. She recommended they be monitored until they caused a significant change in my vision.

It was not long before I was having trouble with close up tasks such as reading and the cataracts were significantly affecting my visual function.  Everything appeared dull and clouded as if I had blobs of Vaseline in my eyes.  My biggest struggles were reading the computer and my iPhone which I depend on heavily and spending time outside in the sunshine.  I decided to talk to the doctor about cataract surgery.

Cataracts in and of themselves are not a big worry and the surgery is one of the most common and successful procedures done today. But when they appear along with RP or other eye diseases, it is more complicated.  Since patients with advanced RP depend on their remaining central vision, there is much to be gained from removing cataracts. But no surgery is without risks.  As a nurse, I knew it was important to learn all I could about cataract surgery and consider my options carefully. I began to do a bit of research.

I wanted to know what the risks were of losing the rest of my vision and whether I could expect improvement in my vision if I had the surgery.  I visited VisionAware’s section on cataracts and the message board. Then I talked to my optometrist and low vision specialist.  We discussed my eye history, and my hyper-myopia and how that may increase risks. In the end, he said he believed I had more to gain than to lose in doing the surgery. He referred me to a cataract surgeon who was well-known to him and who seemed best suited to my case.

By the time I met with the surgeon for a consult, I was well-informed of the risks of this procedure. My goal was to preserve my ability to read my computer and iPhone with my low vision devices for as long as possible. The surgeon examined me, ran tests and took measurements. He declared that he believed I “was a good candidate for the surgery and would do well.” My surgeries were scheduled two weeks apart. I was sent home with a packet of instructions and prescriptions for eye drops to be started the day before surgery.

The morning of my first procedure, I felt nervous about having someone cut on my eye, but I was also confident in my doctors and in my decision. They all discussed my case and had my best interest in mind. There was a lot of discussion about which intraocular lenses would be best and what the prescription correction should be.

Eye Shields and Eye Drops
Eye Shields and Eye Drops

Previously, I wore contact lenses that corrected my vision to an intermediate focal point, allowing my low vision devices to work well for me. When I want full correction for distance, I add a pair of glasses to complete my prescription. To read or do close up tasks, I use prism magnifying glasses. With just my contacts, I am able to work on the computer (with Zoomtext) comfortably and do most daily tasks without any glasses. This has worked very well for me. Based on the pre-op testing, intraocular lenses that correct astigmatism in the same prescription as my contact lenses were chosen for the best vision outcome. I did have to pay out of pocket for this type of lens (toric) as it was not covered by my insurance.

The procedure went smoothly and was over quickly. I was given light sedation and was aware of a few sensations, but had no pain. At home that evening, my eye was scratchy and my vision was very blurry. By morning, it was comfortable and my vision was already clearing up. I visited my local eye doctor the next day for my first post-op check. The lens was in good position. There was some swelling which was to be expected and I did have an increase in my eye pressure. So the doctor said he would monitor that.

The next two weeks, I followed the post-op instructions vigilantly which included  administering several eye drops on a schedule, wearing eye shields to protect the eye,  and limiting physical activities as instructed. I had several more visits to the doctor for eye pressure checks. I was told this can happen due to swelling which blocks the drainage system in the eye. It is usually temporary and should resolve with healing and the medications.

On the morning of my second eye surgery, my eye pressure was too high in both eyes. I was immediately given eye drops to bring it down. The procedure went without a hitch, just like the first one. Within a couple of days, I was reveling in how much clearer my central vision became. I was so pleased that the gauzy film was gone, the glare improved and colors were crisper. With both eyes now corrected and working together, I was once again able to read my computer and iPhone.  A few weeks after surgery, I was reading 2-3 additional lines on the charts, which was very exciting.

It has been three months since my cataracts were removed. My intraocular pressures are still elevated and I am taking glaucoma eye drops. The doctors say I am what they call a “steroid responder” and this is why my pressures shot up.  They believe the pressure problem will resolve itself with time and I will be able to come off the eye drops. Of course, this was an unexpected outcome and there is cause for concern. But I am very happy with the improvement in my vision.  I feel as if I have dialed back time and got some vision back! And when you do not have much to start with, every bit of improvement can make a difference.

The preceding article was written by and republished with Audrey Demmitt’s permission in recognition of Cataract Awareness Month. 

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WOTM 13 Featuring Stephanae McCoy

You don’t know what you can’t see when you can’t see it…

Steph McCoy
Steph McCoy

The first time I put on eyeglasses was a little over 44 years ago. The feeling of seeing clearly for the first time stole my breath away. The transition was like leaving a dark movie theatre and stepping outdoors on a bright sunny day. It took time for my eyes to adjust because suddenly everything was so clear and focused as if all my senses were reborn; sound was keener, flavors more savory, smells more aromatic, touch more sensitive and sight — well, sight was indescribable. Depth perception was strange, crossing streets and walking down stairs was a little precarious as I acclimated to what is considered 20/20 vision.

For 37 years I was blessed with perfect vision provided I wore corrective lenses. That all changed 9 years ago with two words, “macular hole.” It began when I removed one of my contact lenses, looked in the mirror, and to my horror, half of my face was missing.

The diagnosis, while grim, in my situation all the statistics pointed to a favorable prognosis; One, I was considered very young to experience a macular hole, two, odds were it would not occur in my other eye and three; I had a 95% to 99% probability of having my vision completely restored in my affected eye.

What a relief to know that this unfortunate incident was only a minor inconvenience. When my retina specialist explained to me that he would perform a vitrectomy I jumped at the opportunity.

Vitrectomy is an outpatient surgery done under local anesthesia where the surgeon inserts these tiny instruments into the eye, suctions out the eye fluid, repairs the damage at the back of the eye, then inserts a gas bubble. It was kind of eerie being able to discern light and see the shadows of the instruments moving within my eye while at the same time talking with the surgical team. Afterwards I had to keep my head in a constant downward position for 3 weeks to enable the gas bubble to seal the hole in my macula. This first vitrectomy was not successful and a second surgery was repeated 5 months later.

Fast forward 4 more years with trips to my retina specialist, regular ophthalmologist, low vision specialist and Cleveland Clinic I had a total of 6 procedures/diagnosis:

  1. Detached retina with laser surgery repair in the left eye.
  2. Epiretinal membrane that developed into a small macular hole in my right eye, experimental gas bubble injection during the office visit (I never imagined that I would have a needle literally stuck in my eye while completely conscious – mental note I will not EVER do this again).
  3. Vitrectomy in my right eye to repair the reopened macular hole.
  4. Cataracts
  5. Glaucoma
  6. Ruptured blood vessel which occurred after the last vitrectomy required an injection of medication to stop the bleeding.

Though exhausted from all the procedures and diagnoses when my brother suggested returning to Cleveland Clinic one last time I agreed.

The news was devastating. “Ms. McCoy,” the doctor said, “I’m so sorry to tell you there is nothing more we can do for you.” Those simple words confirmed my worst fears and violently shoved me into the dark abyss of despair. I am now legally blind.

After all I’d been through, I was numb, like an out-of-body experience, I could hear the echo of my heartbeat and I had a difficult time focusing on the doctor’s next words. After what seemed like an eternity, he continued, “Ms. McCoy, you have lived with this condition (high myopia also known as severe nearsightedness) all your life and you have done everything you should do by regularly visiting the eye doctor but you have reached the point where your vision can no longer be corrected.”

By the way, high myopia is a severe form of myopia where my eyeball stretched and became too long. This can lead to holes or tears in the retina and can also cause retinal detachment. Abnormal blood vessels may also grow under the retina and cause changes in vision.

Today, after the removal of the cataracts the left eye is now the good eye with vision measuring 20/600. The vision in the right eye is “finger counting” a measurement used when standard methods no longer work. Out of curiosity I asked my eye doctor what follows after finger counting and was told “hand waving” and “light perception.” Even with these different means of measuring vision because of the vast spectrum of vision loss what one person sees with a specific condition, may not necessarily be the same for another person with the same diagnosis.

Losing my vision feels like being enveloped in a thick, never-ending fog. I sometimes dream that I can see only to awaken with the knowledge that it was only a dream. Throughout the past 9 years, as my eyesight has deteriorated to legal blindness, I’ve learned so much about visual impairments, coping strategies, and advocacy.

Through this experience I have met and worked with the most exceptional people and organizations. Some of which include the Checkered Eye Project, Foundation Fighting Blindness, American Council of the Blind, Pennsylvania Council of the Blind, Golden Triangle Council of the Blind, Blind and Vision Rehabilitation Services of Pittsburgh and VisionAware. I am so honored to be able to serve on the various committees that are part of some of these organizations.

Have a great weekend!!

“Although the world is full of suffering, it is full also of the overcoming of it.” ~Helen Keller