One Man Shares His Unexpected Reaction to Becoming Blind

97
97

On July 6, Reddit user “MrThink2Much” hosted a compelling AMA (“Ask Me Anything”) about what it’s like to lose your sense of sight as an adult. The 21-year-old lives with open-angle glaucoma, a form of glaucoma where pressure continues to build in the eye that can cause permanent vision damage. After neglecting his doctor’s advice and medical treatment, he became legally blind in his left eye and partially blind in his right eye.

The AMA prompted a wide range of questions including what it means to be legally blind, why MrThink2Much didn’t seek medical treatment in time to save his sight and what adjustments he’s had to make since becoming blind. His responses were so honest that we decided to compile a few of them. Take a look:

1. “If you hadn’t neglected the issues, could your vision have been saved? Do you regret not taking action sooner?

Yes, I could’ve led a normal life and had normal problems.

I know it sounds strange, but I don’t regret it. Yes I could’ve been “OK,” but I wouldn’t be who I am today, and I like who I’m becoming. Oh, and I know who my real friends are and who really loves me. It’s everyone who was there for me during my darkest time.

2. “What do you miss the most about being able to see?

What don’t I miss? Walking through the forest at night, being able to trust my steps, seeing people in their wholeness. Nature is still beautiful to me, but I remember it’s wholeness as well. I miss looking up the sky and actually being able to make out stars. I miss basketball. I miss making complete direct eye contact with people, I miss looking at my loved ones up close. The bottom half of peoples faces just disappear when I’m talking to them close. I can’t see their facial expression if they smile, etc. Just the small things we can take for granted.

3. “How would you say you’re interactions with other people have changed since you became legally blind? Do you have any worries about your future relationships with others because of your blindness?”

I am well aware of how I interact with people, which is self-conscious most times. I can’t tell if someones going for a handshake unless I look down, so sometimes I just look into someones eyes while they have their hands out ready to shake mine. I also give a high-five when fist bumps are called for and vice versa.

I do have worries about my future relationships. Will a woman accept me if I’m crosseyed and I can’t totally protect her at night? Will new social circles completely understand why I can’t go to the nightclub or why I have to sit out from doing normal things like playing sports? I don’t know.

4. “I’m 16 right now and have an elevated risk of glaucoma due to high ocular pressure and unusually thick corneas. My question is: why would you skip the eye drops? They could have completely reverted your condition!”

Glad you’re not a stubborn, delusional kid like I was. I did use the eyedrops, but once they were gone, I never went back for more.

I could’ve easily avoided all this, but I kind of like who I’ve become. Please listen to your doctor, and stay strong, my fellow young glaucoma warrior.

5. “Going blind has always been my greatest fear. So my question is simply, how do you cope with it? If a friend were to lose their sight, what should I tell them?”

Cope. You just do. There’s no way out of it, it’s real, it’s already here and it’s going to happen. It just is and you just do. I wonder the same thing about cancer patients, people who are terminally ill, etc., and the only thing I can think of is they just do because they have to.

But I don’t know if I would have been as strong if my family wasn’t there to cope with me. A strong support is absolutely instrumental for these types of situations. Seriously, nothing could’ve made me feel so much better, so much safer. If a friend were to lose sight, tell them you’ll be there for them. Hold their hand and help them walk; read things for them. We’re meant to handle difficult situations. That’s really all I can say.

Read the entire AMA here.

97
97
TOPICS
,
JOIN THE CONVERSATION

RELATED VIDEOS

Why I’m Proud My Child With Autism Drew This All Over the Walls

171
171

My house has been invaded by a swarm of jellyfish.

They are wondrous creatures with big round bodies, three or more giant eyes, a big joker-like smile and at least four legs.

Typical jellyfish reside in the ocean, but these ones live on pretty much any surface — walls, tables, undersides of chairs, even attached to legs of unsuspecting humans. Anywhere you can imagine.

“Where did they come from?” you might wonder. They arrived around two years ago and have never left. They originated in the interesting and creative mind of my daughter Sophia, age 6, who has autism.

Her literal understanding of the concept of drawing a “stick figure” resulted in the creation of these amazing creatures.

child's drawing of jellyfish

A small child’s first attempts at drawing a person usually comprise of a big circle for the head, two small circles for the eyes, a line for the nose and an arc for the mouth. Then, by adding two sticks out the sides and two more sticks poking out the bottom, you give the person arms and legs. Sophia’s first drawing had all the same components, but with a few creative “tweaks.”

She added a few more eyes for a start, giant saucer-like eyes all in a row. The nose was moved from the face, becoming an extra leg, on top of the 3-plus extra legs she’d already added. The smile either became a giant monobrow or hovered just to the side of the figure. They were more like jellyfish than humans, but they were her own creation and therefore awesome in my eyes.

Previously, the only thing Sophia would draw was a series of intense spiral shapes. The teachers at daycare were getting annoyed with the amount of times they had to remove Sophia’s “tag” from undesirable locations like the toilet, playground equipment and other parents’ expensive baby buggies!

Sophia had been so still for such a large part of her toddler years, I was quite proud of her little rebellion. She was like a mini Banksy!

Now that Sophia had graduated onto actual figures, I was so excited to see what she would draw next. I spent a small fortune on art supplies and an easel, and I left them all at her level to encourage her creative side.

One day, I returned from hanging the washing on the line to find Sophia in her room surrounded by jellyfish she’d drawn on all four walls of her room. There were several more jellyfish ogling me with their saucer-like eyes in the lounge. The house was awash with them. I couldn’t get angry at her; she was so proud of her creations, and I was proud of her.

These pictures might look like random scribbles to others, but they are everything to me. In the same way prehistoric cave drawings are to civilization, those googly-eyed jellyfish chronicle a huge advancement in Sophia’s development that no written school or doctors report could ever illustrate.

Two years on and our walls are still awash with jellyfish. I could clean them off the walls, but to me, they’re a reminder of how different my daughter’s mind works compared to others, but is by no means wrong. All the same basic elements are there, just different in composition.

After all, art is subjective — one person’s stick person can be another person’s jellyfish.

child painting on easel

The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

171
171
TOPICS
JOIN THE CONVERSATION

Kids With Disabilities Get Unforgettable Dance Experience With the NYC Ballet

859
859

Pearl Armoza loves music.

The 5-year-old also has a great sense of rhythm. Her mom, Natalia Armoza, always wanted to attend a dance workshop with her daughter, but because Pearl has cerebral palsy, Armoza was hesitant to put her in a situation where she might be subject to stares and unwanted attention. So, Armoza decided to take matters into her own hands.

Armoza decided to email the New York City Ballet, one of the most prestigious ballet companies in the world, with a suggestion.

“It would mean so much to my daughter and children like her to be able to take part in a New York City Ballet workshop and to one day to feel like they too could be come ballerinas,” Armoza wrote, according to the Upworthy video above. She figured the worst-case scenario was they’d tell her they weren’t interested.

Turns out, the ballet company loved the idea. They arranged four workshops at Lincoln Center for Pearl and 18 other children with disabilities, Upworthy reported. Maria Kowroski and Adrian Danchig-Waring, the company’s two principal dancers, led the classes.

A cerebral palsy specialist, Joseph Dutkowsky, M.D., attended the workshops as a consultant. He told everyone to take their braces off so they could experience the class completely unrestricted by devices.

Ballet8

Ballet7

“It just moved me,” Armoza told The Mighty in an email. “This would be a once in a lifetime experience for anyone, and it was even more so for children whose greatest challenge is moving their bodies.”

Screen Shot 2015-07-07 at 10.38.58 AM

“Sometimes we can’t protect our children from stares and comments,” Armoza added. “But at this workshop, they were just kids in a safe and loving environment — happy children engaged in an athletic and joyful activity. No wheelchairs, braces, awkward gaits or curved backs — just a bunch of kids. That’s priceless.”

Armoza also has some advice for all the parents who’d like to find similar programs for their children with special needs.

“If you can’t find it, just ask,” she told The Mighty. “All children, regardless of ability, deserve art, music, dance, culture and, most of all, joy in their lives.”

h/t Daily Life.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

859
859
TOPICS
JOIN THE CONVERSATION

The Confession I’m Making About My Marriage and Special Needs Parenting

627
627

My husband and I have a good marriage. Some days, I would even call it a great marriage.

You might say it’s a love story of sorts; I’ve known him for 19 years, and we’ve been married for almost 17.

When we were both in school, we were so broke at one point we could barely afford to order pizza, and we lived in an apartment where you could hear the rats tumbling through the walls in the middle of the night.

We’ve come a long way from rats in the walls, and now we can even order pizza with pepperoni, but we are in many ways the same two people we were back then. We laugh a lot. We like each other’s company, and we both think “Rocky II” is the best movie ever made.

I still find him as attractive as the day we first met — maybe even more so since he recently grew a beard and it looks really good on him.

But I have a confession to make. It’s kind of a secret, so I need you to come just a little closer. Bend your head to me, and I’ll whisper in your ear.

We are not good co-parents.

You know, the thing where two people are supposed to make decisions together and collaborate about their beloved children’s well-being and future and whether or not they should have another cookie even though they didn’t eat a single string bean at dinner?

Yeah, that.

After parenting together for 12 years, Joe and I, well, sometimes we aren’t on the same page. We’re not even reading the same book. In fact, we barely speak the same language.

I think this is mostly because I am right all the time. And Joe thinks I’m wrong and he’s right. But really, I am right — all the time.

It’s hard, this child-rearing thing. Like climbing-a-mountain hard, especially because Joe and I each think we know where we’re going and the best way to get there. We both want to be the tour guides.

On paper, it’s no surprise that we struggle to co-parent. The numbers are not in our favor.

There are five of them and two of us.

We had three kids in diapers. Twice.

One in 55 children are diagnosed with autism. We have one of them. His name is Jack.

Sometimes, it’s little things, like Joe letting our daughter wear her pink cowboy boots to school after I told her she needs to wear her sneakers. Or I tell Jack he doesn’t have to finish his math homework.

No matter the disagreement, the soft, whispery subtext is always the same.

Why are you undermining me? Are we in this together or not?

Then, there are the big things that turn the mountain into an explosive volcano right in front of our eyes.

For example, last week I was pretty mad at Jack. He had worn down my last nerve blaring the Beatles all afternoon and flipping out because his brother ate the rest of the ice cream and then he screamed a very bad word that begins with an “F” and rhymes with “duck.”

When Joe heard me get mad, he felt he had no choice but to also get mad. I didn’t need him to get mad. I needed him to tell me to go upstairs alone and chill out for a few minutes because we all know how much Jack loves the Beatles and ice cream and we’re working on the swearing.

The subtext in these situations is pretty obvious, too.

I don’t need you to interfere.

I am showing you my support by also getting mad.

I don’t need your support, I need you to find ice cream.

We are not together. I am alone.

Joe and I have a pretty specific division of labor when it comes to our family workload. He handles big school projects and I oversee homework and quizzes. I handle colds and boogers, and he is in charge of anything puke-related.

I will readily admit, Joe kind of drew the short straw when it comes to family responsibilities.

In the fact, one night after a particularly vicious bout of the stomach bug, 5-year-old Henry sat down in Joe’s lap after dinner and announced he will never be a father.

“Why not?” Joe asked him.

“Because. I don’t know how to rub someone’s back when they throw up. Like you do to me.”

We both want the same things for our family: happy, well-balanced, polite kids who will eventually move out of the house. But our styles and temperament are different.

In terms of parenting styles, I would say Joe falls into what I’ll call Category A. In Category A, kids should listen and do what we ask and we are the parents and therefore in charge. I’m in Category B. This category is a little more flexible. It takes into account children who are overtired and 12-year-olds who want to test their comedic wings. But a lot of times, people in Category B feel confused about who is in charge. We get tired easily.

See what I mean? Parenting. Hard.

Then, there’s our temperament.

Joe has exactly two speeds. Ninety percent of the time he’s an affable, lovable, fun, silly, affectionate guy. The other 5 percent, well, let’s just say someone has pushed his buttons just one time too many. He is loud, expressive and no-nonsense.

I have many speeds. I have my tired speed and my motivated speed. I have patience, and then sometimes I have no patience. I can go along all la-di-da and then, with no warning whatsoever, have a psychotic snap over something as innocuous as a towel left on the bathroom floor.

And autism unravels us. I wish I could say we’re getting better — more experienced — in parenting this boy, but the truth is every week, maybe every day, brings a whole new set of worries and challenges and behaviors.

How many more years will it take until we figure out what each of us needs? Will we ever unravel autism’s tricky knots?

The answer is, I do not know.

I do know this. Parenting is hard because it’s a rich combination of puke and chaos and temperament and style. I’s exhausting and complicated, heartbreaking and maddening. It’s wanting to be right but feeling as though you’re wrong. It redefines us all, but it especially redefines love stories.

Once upon a time, I thought a love story was a dark-haired college guy hoping he had enough money in his wallet to buy pizza with his fiancé. I thought it was first kisses and wedding dresses and snuggling together in an apartment with rats. I thought it was Rocky and Adrienne.

But it’s none of these.

It’s a dark-haired man with a beard bending tenderly over a little boy, and gently rubbing his back while he throws up in the bathroom.

“Daddy. I hope I can do it like you when I have kids, too.”

Follow this family’s journey on Carrie Cariello’s blog.

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

627
627
TOPICS
JOIN THE CONVERSATION

How Being a Special Needs Mom Changed My ‘Before Age 40’ Bucket List

1k
1k

Yesterday, I found a handwritten note sitting in a box given to me for my 30th birthday. I had made a list of 40 things I wanted to accomplish before I turned 40. Having recently lost my dad to ALS, surely I had met the lifetime quota for hardship and good things were coming my way. 

But now, I shed a few tears knowing most of the items on that list will not be crossed off before I turn 40 in a few weeks.

I try to live without thinking about how things could have been what my life would be like if my daughter did not have cerebral palsy or mitochondrial disease but it was hard to ignore while holding a list written on the day she was conceived. Long before, I learned it’s foolish to think any of us meet our quota.

But today is a new day, and here’s the truth about that list: I didn’t do most of the things I wanted to do, but the lessons I’ve learned in the last ten years are far more valuable than any academic or financial achievement. In a world that values physical perfection and financial success above all else, I discovered what really matters.

I didn’t buy my dream car, but I’m thankful to have a van with a wheelchair lift. It’s not a sexy car, but often the kids argue over who gets to push the button to operate the ramp.

We didn’t keep the membership to the Atlanta Athletic Club, but I’m a member of a secret Facebook page for parents of kids with special needs. We get together for parents night out. How cool is that?

I didn’t get to be the director of student services, but I’ve gotten my daughter the services she needs at every single IEP meeting.

I didn’t get that tummy tuck, but I’m physically stronger and faster than I was 10 years ago. I can dead lift my kid and her wheelchair.

I didn’t take that culinary experience trip to Paris, but my friends know if they need a meal they can call me. I’ve learned how to put a meal together in less than 20 minutes. 

I didn’t finish writing my book, but a thank you note from a mother who read a short article I wrote taught me sharing pieces of my story can help someone else heal.

That week-long yoga retreat didn’t happen, but last week I managed to go to yoga three days in a row. A true retreat considering my kids are home for summer break.

I didn’t buy that bike, but I did manage to convince the insurance company to pay for a second wheelchair for my daughter — a miracle.

I didn’t hire a professional decorator to decorate my home, but I learned to only allow things into my home that bring joy.

I didn’t manage to save what I need to retire comfortably. My part-time job will not pay the bills. But if my daughter has a medical emergency and I’m out of town, my boss is the only person I trust to make medical decisions on our behalf. Working for a person I love and trust is worth more than a million bucks in my retirement fund.

I didn’t end my love affair with sugar, but I know sugar and I will always be unfinished business.

I didn’t get to on another mission trip to South America, but my neighbors know if they’re running behind I will bring all the kids home from the bus stop.

I didn’t give up cussing, but now only use it during two special occasions: filling out the renewal forms for Medicaid and sex.

I didn’t get to teach my kids all about the art collection at the Barnes Foundation, but we’re thrilled to be a part of the Kyle Pease Foundation.

I didn’t become an elder in the church, but I learned what it means to surrender everything to God.

We didn’t have child number three, but I’m truly thankful for the opportunity to love and care for the two beautiful girls we have.

I didn’t do most of the things I planned on doing, but I did better. I made a bucket list for my daughter and with the exception of one thing, every single item has been crossed off. Everything else is icing on the cake.

Am I going to make a 50 before 50 list? No. My list list only has one item now:

“Make it a rule, and pray to God to help you keep it, never, if possible, to lie down at night without being able to say: I have made one human being at least a little wiser, or a little happier, or at least a little better this day.” -Charles Kingsley

unnamed-84

1k
1k
TOPICS
JOIN THE CONVERSATION

Why My Children Have Been Diabetes’ Greatest Gift

99
99

Nine years ago, I sat on a bed in the emergency room. I was cold and breathless, waiting for someone to give me an answer. For a year and a half, I floated from doctor to doctor, begging for an answer to my symptoms: weight loss, chronic thirst, extreme hunger, fatigue, depression, tingling in my feet, weakness, blurry vision and bed-wetting. Some suggested I had celiac disease, anorexia or maybe a mental illness.

They were all wrong. 

The ER doctor burst into my room, looking wide-eyed at the documents cradled in his arm. He looked at me and said, “Your blood sugar is 700. You have diabetes.” I was whisked away to the ICU, hooked up to monitors and an insulin drip and placed in a bed where I’d spend the next several days.

Nurses would come into my room sounding cheerful, but they couldn’t mask the grave concern in their eyes. Some were more frank. More than one told me, “You were so close to death.” I learned that upon arriving in the ER, I was in a condition called diabetic ketoacidosis. Essentially, my body was toxic, and my A1C (an average of three months’ worth of blood sugar levels) wasn’t even on any medical charts because it was sky high.

What I learned was, I really shouldn’t have lived. I was dangerously ill for months.

I graduated from the ICU and was placed on another floor of the hospital. I had to learn how to inject insulin, count carbohydrates and test my blood sugar levels. I learned there was no cure for my disease, only the opportunity to manage it. I would be insulin-dependent for the rest of my life, and I would administer insulin through injections or an insulin pump.   

As a Type A person, I quickly organized this information into color-coded folders. I quickly learned what I needed to do. Surprisingly, the worst news of my life was also the best news: I finally had an answer, an answer I had sought for a year and a half of my life.

When my first certified diabetes nurse educator (CNDE) visited me, she asked my husband and me about having children. Were we planning to have children? We said yes simultaneously. And as she proceeded to talk to us about high-risk pregnancies, my mind honed in on a single word, an idea, a promise: adoption. 

Fast forward to today. We have three kids by adoption. They’re all considered healthy. No special needs or diseases. I’m the sick one, the one who requires multiple doctor’s visits. I’m the one who has the mounting medical bills and fights with the insurance company and the pharmacy.   

Controlling type 1 diabetes is as easy as controlling a preschooler in a candy shop. My days are spent testing my blood sugar, counting carbohydrates, pushing buttons on my insulin pump and checking my glucose readings on my continuous glucose monitor (CGM). I make medical appointments, create healthy food menus and listen to my body, always, constantly. All of this is done to hopefully avoid the slew of potential diabetes complications: blindness, heart issues, kidney failure, certain cancers, amputation of lower limbs, depression and many more.

There is a constant fight for balance, self-bestowed grace and hope. There’s a constant fight to be as normal as possible.

A few months ago, my 6-year-old approached me after I had an episode with a low blood sugar. She had presented me with an orange perched on a cloth napkin. She knows enough about my disease to know low blood sugar renders me weak, shaky and disoriented. And she knew an orange, which contains sugar, might help.

My 4-year-old daughter is also somewhat versed in my chronic disease. She sighed one night as I tucked her into her bed and said, “Mama, I wish you didn’t have die-da-betes anymore.”

My 2-year-old son knows not to touch my insulin pump, my glucose tablets or any of my testing supplies. They are mama’s things.

My children have been diabetes’ greatest gift. They are funny, smart, beautiful and gifted beings who give me the motivation to keep trying, to keep making healthy choices, to get back up no matter how bad the previous day or hour was. They are empathetic, witnessing the ups and downs of my disease on a daily basis. They are kinder because of it, more patient, more forgiving and more intuitive.   

They are mine. I am theirs. And together, we seek serenity amongst sickness.

Rachel Garlinghouse the mighty

Follow this journey on White Sugar, Brown Sugar.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

99
99
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.