Art by Alethea's daughter.

You’re reading a fabulous novel; the imagery is perfect. You can see the characters, the setting, every detail;  if you close your eyes, it’s like you’re there. This is a part of the normal experience for almost everyone, but imagine having no ability to create mental pictures. A blind mind’s eye, if you will.

That is my reality. I have no ability to conjure images in my mind.

In 2015 this condition was described by science and given a name, aphantasia.

Art by Alethea's daughter.
Art by Alethea’s daughter.

For years, I never realized I was different. I assumed the term “mental picture” was metaphorical, that everyone was like me.  I began to wonder about it when my daughter could remember detailed images, and from memory draw accurate pictures of people, places and things. She told me she just sees them in her mind, and meant it quite literally. Her mind’s eye seems especially acute; I’m afraid she got my share.  She’s aware of the dichotomy between us, and often, when she envisions things then describes them, she will turn to me and and sadly say, “but you can’t picture it.”

If you tell me to think of a chair, I know what a chair is, and can think of different types of chairs — a plush upholstered chair, a wooden kitchen chair and the like, but I don’t get any type of picture in my mind. I can describe to you the chairs in my kitchen with fair accuracy, but I cannot envision them. I can remember every detail about my husband’s appearance in words, but not picture his face. My dreams are primarily experiential and auditory, with strong emotions and only vague, fuzzy imagery. It seems that even in sleep, my mind is incapable of visualization.

Upon reading the BBC article which describes the phenomenon, I felt a strange blend of feelings. Having verbiage for my experience is helpful, but also uncomfortable. I feel like more of an “oddball.”  I don’t necessarily feel like I am missing anything, as it’s the only experience I’ve ever known, but now I understand why relaxing visualization techniques have always mystified me. The soft voice describing a beach setting at sunrise is just words to me, so I was baffled that other people were so engrossed by such things, until I discovered the answer.

What I lack in my mind’s eye I accommodate for in auditory processing and memory. And while I cannot picture a person’s face, I can recognize people, even from years before,with ease.  As you may suspect, I consider hearing my primary sense, and vision a distant second. I am especially attuned to the sounds of my environment, which as a parent is as good as eyes in the back of my head.

I don’t know if I would change it if I could. I cannot imagine what life is like with a visual imagination. I suppose I’m fine as is, even if some people might think I’m missing out.

The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. Check out our Submit a Story page for more about our submission guidelines.

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Dear Nurse,

I’ve always hated hospitals even if I was being admitted for something simple, like a round of tests. I would still be terrified. This past October I was admitted for that exact reason, more tests. I had to change respirologists because I wasn’t being followed at my local hospital anymore and I had to go out of province to find a new one, therefore the tests. It’s also easier to get tests done inpatient then outpatient that is why I was admitted. The life of a spoonie! So I was in a new hospital, in a different city, in a different province, far away from my family and friends and all alone. I was doing my best to keep a level head and be tough, which at one particular moment was very difficult. I had gotten bored of Netflix and I couldn’t talk to my friends because I’m broke and that would be a long distance charge. I was looking around my hospital room and I started to cry.

I was sitting on the chair with my laptop on a table in front of me when you walked in. I didn’t say how scared I was, or how I was very close to a breakdown, but it must’ve been written all over my face. You were just checking on me, and since I wasn’t sick there wasn’t any care that had to be done, but no one had seen me in a couple hours and you decided you’d better check on me. Then you saw my face and sat down on the couch across from and just started talking. I don’t even remember what we talked about. It was probably about school and my friends; I probably asked something about your shifts, mundane things like that.

It wasn’t mundane, though. It was so much more. It made my stay easier, and you distracted me from my fear, even for a few minutes. So thank you! Thank you for caring about a freaked out 21-year-old, for checking where I lived after I used words you didn’t know and then understanding why I was admitted and why I was alone and figuring I could use some company, and sitting with me probably at a time when you should have been leaving the hospital.

Thank you so much for going the extra step and doing what I really needed, even when I wouldn’t admit it. I know it wasn’t what you planned for that day, but thank you for doing it anyway.

From,

Mariah

The Mighty is asking the following: What’s the best thing a medical professional has said to you related to your (or a loved one’s) disability, disease or mental illness?  Check out our Submit a Story page for more about our submission guidelines.


For three years I’ve felt like we are on a tiny rowboat in the middle of the open sea, not sure of which direction to row.

Completely out of the blue, my daughter Isla had two grand mal seizures. After the initial shock of the events wore off, I began to do a bit of research on seizures, which started to paint a picture of our Isla. Confusing moments with her like stares that couldn’t be broken, and falling from a standing-still position from out of nowhere started to seem like they were pointing in a direction, toward a piece of our puzzle. I read anecdotes of other children exhibiting these behaviors in whom there was an underlying condition of epilepsy. With this diagnosis there might be a treatment; there might be medication.

I understand fully that labeling a child with a diagnosis can be limiting, but it also comes with answers and support — that part would be nice. I allowed myself to imagine our boat was nearing land. I could see it; there was a lighthouse in the distance calling us in, and when we arrived on land there would be people welcoming us, people who had traveled down our path before and had been waiting for us to arrive. They would tell us they understand and they would become our guides. They would direct us to the right doctors, the right interventions, the right schools — all specifically tailored to Isla’s needs. The path would finally become illuminated. I became dazzled by this light in the distance. My mind began to race with exciting possibilities, and I started paddling as fast as I could against the current, against the voices of those closest to me who warned me this might just be a mirage. I kept paddling.

You see, Nate and I live in a constant tension of loving and honoring Isla exactly as she is, while at the same time searching for answers that could unlock a door that might make life a bit easier for her. It is a balancing act that doesn’t always live harmoniously within us.

Noelle and Isla, mother and daughter looking out a window
Noelle and Isla.

The testing to pinpoint what caused the seizures began, and slowly, as results starting to trickle in, so did doubt. Here we were yet again with nothing conclusive. No answers. There were more tests, longer tests, new tests. Perhaps that light shining in the distance wasn’t for us. We stand facing the initial trauma of Isla’s brain damage all over again, for which there has never been a determined source, or a predicted outcome. Our hearts are out of our bodies again, exposed to the elements as we imagine the painful experiences Isla may encounter in the world because of this.

As the sadness and doubt started to enter me, our boat began to fill with water. I sat there and watched it pour in. I allowed myself the luxury of slipping under it. I could hear voices calling for me to come up for air, to paddle on, but I just felt so exhausted. It’s not like me to stay under the water, to not want to participate in the world, but I wanted to hide in the darkness just a bit longer.

Slowly, above the water I could see life rafts being thrown towards me. I knew if I stayed under the water, I would take our little family down with me, so I eventually grabbed hold and allowed myself to be pulled up. When I came to the top of the water, I could see lifeboats all around us.

The rafts weren’t a diagnosis or a path, they were just people — the people we love, people near and far from us.  Some tried and true, and some who surprised us. They didn’t have the answers; they were just love surrounding us, surrounding Isla. Our people wanting to be with us even through the choppiest of waves. They put arms around us and looked in our eyes and said things that brought comfort, things like “Isla is a wondrous little being and perfect for a world that doesn’t make space for any of us, especially those of us who don’t conform to normative standards. The world really needs to meet her and bend itself to accommodate her needs.” Sometimes you can’t see the road ahead of you, and you need a reminder from a friend of the greater purpose of your path.

I let their words and their light in. I decided to hold on against a current that doesn’t automatically bend for anyone, and to once again be thankful for all of it. I decided to empty the water out of the boat and keep paddling, so one day I can tell Isla we followed every light we could, we searched under every rock, we fought every fight.  And all the while we loved you just as you are, Isla Kai.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.


As a teacher, I see my co-workers trying to figure out how to approach parents when they suspect a student might have special needs. As a parent of a child diagnosed on the autism spectrum 13 years ago, here are some insights:

1. Show empathy and compassion.

How would you feel if you were told something is “wrong” with your child? No matter how gently you bring up your concerns, that’s what parents may hear. Answer the question honestly, as a parent if you are one, and if you’re not, think about getting heavy news about a loved one.  Do you feel it: shortness of breath; racing heart; eyes burning with tears; denial; anger; reluctant acceptance; fear; blame?

Parents may need to muddle through lots of emotions before they potentially take action. Give them the time they need to adjust (even if it takes years as it did for us.) Recognize that each parent will need varying amounts of time to adjust, and be realistic about the fact some parents may never be able to accept what is being suggested to them. In any case, it is more important to treat the behavior than it is to have a formal diagnosis. Please don’t critically judge a parent’s actions or inactions. They may not hear you say it to their faces, but they feel it, and so do the children.

2. Know your role.

You’re professional teachers, not diagnosticians. As a teacher, you have more accessibility and proximity to learning differences than the average person. In order to get a proper diagnosis from a trained professional, teachers are often invited by parents to provide input via forms, letters, and documentation. This can give teachers the illusion that you can predict the outcome of learning difference identifying behaviors in children. Although a teacher may correctly identify a child’s diagnosis, autism, ADHD, and many other conditions are highly complex and take a great deal of time to diagnose through the collection of data from multiple resources, observations, and tests. Therefore, teachers should be careful about labeling a child without the use of all the proper tools and education. Keep open communication with the parents and your boss, and log all instances pertaining to your concerns. This information may come in handy one day.

3. Be patient.  

When working with special needs children and their families, you are going to need to be patient with the child’s behavior, the parents’ actions or inactions, and yourself while you navigate through the very brief relationship you will have with this family. You may be working with the child and his or her needs for a school year, but the child and his or her family will be working with them for life.

4. Be proactive and supportive.

You can positively affect the lives of these families with your actions. Don’t tell parents their child “needs help” and leave it up to them to make everything better for their child. They can’t do it alone!  They need your help! Take a class. Read a book. Join a group. Learn techniques and strategies for working with behavioral and learning differences. Hug a parent. Hug the child (if they’ll let you.) Embrace the child’s talents, skills, and positive qualities. Teach your other students acceptance by practicing your own. Share good experiences with your families and peers in addition to vocalizing the difficult ones. Ask questions. Ask for help. Don’t pretend to know it all – each case, child, and family is different and may require different approaches.

5. Don’t take it personally.

If your ego becomes wounded because the family has rejected your professional opinion, get over it – quickly! This is about the child and the family, and what you can do to help them while the child is in your class. What happens outside of class is up to them. If you disagree with their reaction and/or decision, do not take it out on the child or the family. Don’t openly complain about or criticize the family or make cynical remarks. Be content that you have planted a seed of acceptance and have faith one day that seed will sprout and grow into action. It may not happen right away, but everyone deserves the right to get to their destination at their own pace in their own way. You can only provide guidance and hope. Keep in mind it can take time for families to come to the decision to take action. Until they do, keep records of your observations. The data you compile can be helpful for the evaluation process should it come to fruition, and you can then let your ego bloom and feel proud of the contribution you have made.

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. Check out our Submit a Story page for more about our submission guidelines.


At least once a week, one of those “To the mom who…” letters pop up on my newsfeed. Basically they all have the same message: just let people feel good about themselves, their neighbors, their kids and their neighbor’s kids. Don’t judge. You don’t know what someone is struggling with.

A while ago I saw a letter like this addressed to a grocery store patron who had stared at a child on the autism spectrum. The mother of the child was incensed and defensive. She commented about her son’s humanity, her occasional embarrassment for his behavior and her acceptance of his challenges. She implied the person staring had an issue with her child, but there was no actual interaction. The mom was assuming the look was one of censure without any actual knowledge of what was going on in the other party’s mind.

I’d like to address this, because I’ve often found myself thinking much about the nature of staring at non-“typical” children.

So, here’s my (short) note to the mom who may see me staring at her child.

Dear Mom, 

I saw you pushing your beautiful child in her wheelchair today. You were really struggling to handle all of your belongings and get the chair over the curb. I wanted to offer you my help, but you must forgive me, I couldn’t. You see — when I saw you with her, I froze. I found it difficult to breathe. The blood began to pound in my ears, and I had to back away.

Someone — maybe you — might have noticed. They may have interpreted my reluctance to offer assistance as unkind. They may have believed I was disgusted or annoyed.

This is far from the truth.

I am staring because I wish I had your life. I wish I was pushing that wheelchair. 

For a split second when I saw you with your child, she was mine. It was me struggling. And my daughter was so close to me I could feel her skin under my fingertips. 

Then, the moment was gone. Your proximity left me out of sorts. 

There are many of us out here who were just like you, during that moment when a diagnosis caused all of our plans to go awry. We talked about treatments and probabilities. Quality of life issues. We know all of the code words, and we know about tubes and wires, and we know about experimental treatments for rare disorders. 

Then our children died. 

Suddenly, we were left in a limbo. We can’t walk with you, pushing our own children over a curb. Our daughters will never play with your daughter. 

When I saw you struggle I was overwhelmed by possibilities which will never come to fruition.

mom kissing newborn baby My blunt staring was my mind’s eye crossing the veil and visualizing a life with my daughter. I feel like I cannot fully claim ownership to the title “special needs parent” because I parented my daughter for such a short time. I don’t know the ins and outs of dealing with hospital billing and extended stays at a Ronald McDonald house. You are a hero beyond my understanding.

On the flip side, I am the most extreme example of a special needs parent: my child’s special needs were so extensive this world could not satisfy them. 

I envy you. Your clear-cut mission, loving your child in a tangible way the world can see. I envy your troubles, your fights with health insurance, your tough decisions.

I want it all.

I see your child in all of her physical reality, and my broken heart is touched by the memory of my daughter. 

So, the next time you see someone staring, please don’t assume they are staring in derision. They may be like me: seeing their unfulfilled future in your exceptional child. 

Thank you for (unintentionally) giving me a glimpse of what my world could be. 

I am forever grateful,

Sarah


I can’t eat a peanut butter and jelly sandwich. If I do, my airway will shut down. I am, in fact, quite allergic to it. But it’s not what you think. I don’t have a peanut allergy. I’m allergic to the bread. I’m allergic to wheat.

I can eat peanut butter all day long and be perfectly fine, but the moment I take a bite of the whole wheat bread you’ve spread the peanut butter on top of, my airway will begin to shut down and I’ll have an allergic reaction.

I’m glad to see society responding to severe peanut allergies by making schools and events peanut free. I’m glad to see the world taking care of people. But my wheat allergy is just as serious, just as severe and still one of the eight most common allergies, according to Food Allergy Research & Education.

If I’m eating with a big group, I usually have to go to another room or at least three feet from anyone else just to be able to breathe. I don’t get to enjoy the social time at meals during events. I spend that time moving around with my inhaler in hand and wondering if I’m going to need it.

My allergy is serious. I’ve had to take medications from an allergic reaction to wheat multiple times, and occasionally, I’ve even ended up in the emergency room. I carry an Epi-Pen everywhere I go because of my wheat allergy. I have to take all the actions and preventative measures as someone with a peanut allergy.

Why is it that my common, severe allergy isn’t taken as seriously as others? Maybe, in part, it’s due to the many people who eat gluten-free as a fad diet, causing people to assume it isn’t serious. Perhaps it’s because wheat is so prevalent in our society.

I agree with parents who have taken a taken a stand against peanut butter sandwiches in schools due to their children’s nut allergies. No sandwich, of any type, should be worth a child’s life. No pasta, no crackers, no sandwich, no toast, no cake, no cookies and no brownies are worth a child’s life — my life. I deserve the same respect and care as anyone else with a life-threatening allergy.

Please give me the respect and care I deserve, too.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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