When I say the words “living a double life,” many people with chronic illnesses may know what I mean. I’m talking about the face you put on every day to “pass” among the healthy and try to live successfully among them, no matter how much your body refuses to comply.

In September 2014, I had to abruptly stop teaching because my chronic conditions — postural orthostatic tachycardia syndrome (POTS) and myasthenia gravis — had become too disabling to even care for myself. I had a moment of epiphany when I realized living this double life had only led to more challenges. I began to be honest with everyone for the first time in years. I wrote these words to myself to understand why learning to live authentically, and with acceptance, was the only path forward:

Being on extended medical leave has been a strange ride. I spend most days couch-bound and riding waves of anxiety and sadness, trying to stay on a schedule to keep myself occupied by reading, writing, playing music, existing. I’m also seeing things more clearly than I have in a long time. I sit outside in my yard and think about life and look clearly at the chaos that’s happening around me. I’m still figuring this one out. I know others who are ill or disabled who are facing challenges with living authentically. This is a strange ride indeed.

I realized I’ve been living a double life. Not an interesting or even sexy double life as a secret agent or a superhero. I’ve been living a very boring one. I’ve been pretending to be “well,” to be able to stand, drive, be accomplished and have a career, and then come home on the weekends and be bedridden, unable to do the basics like cook for myself or do laundry. My husband picked up the slack on everything else.

I’ve been pretending to be one of them — living among the well who talk about traveling or doing yard work. Pretending not be on an endless cycle of hospital visits. Pretending not to have just dragged myself off the floor of my office or the bathroom and then walked into a classroom to teach.

But as I’ve been getting progressively worse this year, I’ve maxed out my credit card on pretending. My body will no longer let me pretend. I no longer have the willpower to keep up the charade.

This is a good thing because now I can try to live a more authentic life. I’ve been lying to everyone and to myself for a long time — lying about what I’m really able to do and who I really am now. Maybe living authentically is easier for others with chronic illness, but I thought I was making illness look good. For whom?

I’ve never been much of a liar because I’m really bad at it. BS-ing is not really my deal. But I can put on such a stellar performance of being “well” that I start to wonder if theater was my calling.

I wanted people to think I could do it. I needed to believe I could do it. There’s too much at stake if I really can’t do it. I wanted to believe that if I pretended long enough, maybe the performance would become reality. Fake it until you make it, right? It didn’t work out for me. It only made me worse. My fairy godmother never came to give me some killer heels and turn this pumpkin into a new life.

But I can’t do it. The independent, ambitious woman I was a few years ago is now wholly dependent on others to get by. And that’s OK. I still use my polite words, “please” and “thank you.” I’m grateful for the friends and family who have shown their true colors and stood by me, and I’m grateful for my husband, who is my hero.

So I’m going to try this authenticity thing. Reality is harsh. It means not driving. It means not pushing myself so hard every day, which is second nature now. It means accepting that my options have narrowed and I may continue to get worse. I’m going to be honest with strangers, friends, family and myself about what I’m able to do moment to moment. I’m going to keep using the electric cart at stores no matter how many times I get dirty looks from the elderly. I’ll use my wheelchair when I leave the house and not pretend to be able to walk and then predictably fail. I’ll use my shower chair with pride. I’m going to remind people that despite being young and having a rosy glow (that’s the makeup talking), I am not well.

It means I no longer care so much what others think, and that is incredibly liberating. I can deal with the stares when I use my wheelchair. I can now pluck up the courage to say, “Pardon me, but I think I’m going to faint. Do you happen to have a fainting couch so I can make this look fabulous?” My illness is an unpredictable beast, and I’m going to stop fighting it so hard. It means dealing with it in silence less and maybe becoming in tune with the world around me once again. The future is uncertain, but I’m getting more comfortable with that. I’m gaining a lot of life experience in the process, and that is invaluable.

I don’t know what authenticity will look like, but I like the feel of it already. I am sick. I am unable to stand or walk for longer than a few seconds. I can’t breathe sometimes. I need to lie down. I am kind of broken. I’m a fighter. I’m a tough cookie. I am smart and educated. I am a warrior, fighting from a seated position with plenty of fluids and chocolate close by.

woman in a wheelchair

Follow this journey on Kind of Broken.


Nathan Mattick has always loved soccer.

The 19-year-old from Cheltenham, England, dreamed of one day playing on a team, but because he has cerebral palsy and uses a wheelchair, playing for one of England’s club teams wasn’t possible, according to The BBC.

So, Mattick set out to get involved with his favorite sport in another way — he decided to become a soccer referee.

“I looked at the referees [on TV] and I thought, ‘Well, I’m in a wheelchair, but why can’t I do it?‘” Mattick told the BBC in a video.

Mattick’s next step was to contact the sports department at National Star College in Cheltenham, England, where he goes to school. He then got in touch with Gloucestershire Football Association where he completed a course and began training.

Now, Mattick is the first person who uses a wheelchair to become a certified soccer referee in the U.K., Mirror reported. The teen is qualified to officiate both indoor and outdoor games with able-bodied athletes as well as athletes with disabilities.

“My motto is, disabled people can still do exactly what able-bodied people can do, but in a slightly different way,” Mattrick says in the video below from SWNS News in the U.K. “I hope disabled people can get engaged in something they’ve always loved to do. Go ahead with it, you can still do it.”

Learn more about Mattick’s story in the video below.

A photograph of our family taken a few years ago hangs on our living room wall. Our youngest son, Henry, sits on the floor in front of everyone while my husband, Chris, and I are both on our hands and knees. Then our twin son, Noah, rests his body on my husband’s while our other twin son, Isaac, is perched on top of Noah, wearing a million dollar smile.

Tyann Sheldon Rouw's family

Anyone looking at the picture can’t tell it was taken as Isaac sprinted around the kitchen and into the living room. The photographer snapped it just as Isaac leaped, landed and smiled. She was in our home taking pictures for two hours. (Can you imagine anyone with kids agreeing to a two-hour photo shoot?) She needed a family willing to be photographed because she was working on a special needs designation and needed the experience. I think she learned a lot. No, we’re not game for a wardrobe change. No, posing doesn’t generally work. She and her assistant did a nice job. More than 300 pictures were taken, but there were only a handful we considered purchasing. They’re gorgeous pictures — all black and white — and worth every penny. Even Noah and Henry’s stuffed dog made it into a few prints.

When Henry was a year old, a photographer (who is also a friend) came to our home to take pictures. He took several hundred as well, and one was outstanding (one is all we need, right?) and it now hangs on our wall downstairs. Chris is sitting on an exercise ball, I’m seated on a mattress holding baby Henry and the twins are jumping around and smiling. Against a white wall, it looks like it was shot in a studio; however, it was shot in Isaac’s bedroom. I like to say that most of our pictures are perfectly imperfect.

When we got pictures taken last year at Portrait Innovations, I reserved the first appointment of the day to avoid a long wait. Isaac ran in and out of the session as needed, and he was able to watch cars in the parking lot. The longer we were there, the more anxious he became. It wasn’t the best situation, but it wasn’t a nightmare, either. We had our pictures in hand as the place began to fill up and we were on our way out. They’re not the best pictures in the world, but it was the first time ever we visited a studio. The photos were inexpensive. Nobody cried, not even the photographer.

When we gathered with family for Christmas, we took pictures of the group — 17 in all. Considering there was a toddler and Isaac involved, it went well. He stood near Chris and his cousins behind a couch, so he couldn’t run too quickly. He was smiling. The toddler sat on her mom’s lap. The photo is fantastic.

Last month before family arrived for Henry’s birthday party, I attempted to take a picture of Isaac and me. We needed one for Christmas cards. Only one. He was game for a few self-portraits without the flash. I took them quickly. It would have been easier to nail Jell-O to a tree.

Tyann Sheldon Rouw and her son

After a few minutes, I took a break. Chris was trying to watch a football game, and Noah and Henry were on the couch. Isaac stood up and opened the front door. I learned a long time ago it’s easier to meet him halfway, on his terms. So he opened the door, and I snapped pictures.

This is how to work with my child who has autism. You do things on his terms, when he is ready to be photographed, when he’s in his element.

Tyann Sheldon Rouw and her son

This one I love most of all. It’s all joy. It is Isaac in his purest, happiest state, watching the door open and close. It’s a rhythm and view he has loved ever since I can remember.

Tyann Sheldon Rouw and her son

This is the one we used in our Christmas card this year — it’s the moment in time when everything looks effortless. All in a day’s work.

Tyann Sheldon Rouw and her son

Follow this journey on Turn Up the V.

Christopher Duffley first sang the national anthem when he was in first grade, performing at his elementary school’s Memorial Day assembly, according to his website. In July 2011 and Sept. 2013, Duffley had the opportunity to perform the national anthem at Fenway Park. On Monday, the now 14-year-old had that chance again, and he didn’t disappoint. The teen, who’s blind and has autism, sang the national anthem for thousands of people before the Boston Red Sox played the Cleveland Indians.

Duffley didn’t speak until the first grade, but his parents then shortly discovered his perfect pitch, according to a YouTube video about Duffley’s life.

When Christopher sings ‘Open the Eyes of My Heart’ he teaches us to not see everything with our eyes,” his mother said in that YouTube video.

Duffley’s performance before Monday’s game was on behalf of Autism Speaks, according to Boston.com. He was selected as one of Autism Speaks’ “10 Amazing Individuals With Autism Who Shined In 2013.”

Watch Duffley sing an incredible rendition of the national anthem below.

h/t USA Today FTW

Epilepsy by nature is unpredictable. Add in fluctuating hormones and the unpredictability increases. Many female epilepsy patients, myself included, find their seizure activity increasing at certain times throughout their menstrual cycle. I understand this may seem like it’s a woman only topic, but every parent with a daughter, husband with a wife, child with a mom or person with a relationship with a female with epilepsy should understand the correlation between hormones and seizure activity. There may be an increase in seizure activity at the time of ovulation and/or just before or during her period. This defines hormones as being a “seizure trigger.” However, if a woman only has seizures at these times during their cycle, then it’s called “catamenial epilepsy.” This epilepsy subset requires special treatment at these times during the cycle.

An increase in seizure activity is especially noticeable during what is known as “perimenopause.” What is perimenopause? Most people have heard of menopause but not perimenopause. Perimenopause is the wonderful 5-15 years prior to menopause. It can start as early as in a woman’s 30s, but most often starts in the 40s, with an average age for full menopause reached by 51. Hormones are fluctuating wildly and without any sort of rhythm. During child-bearing years most women’s menstrual cycles are fairly normal. They may have periods every 25-31 days.

Here’s my experience: a period every two weeks, then no period for two months, then a period that lasts for two months, then a period that lasts for two days. Flows so light I wonder if it’s really a period and so heavy that I’m convinced I’m in immediate need of a blood transfusion. I also have a host of the other symptoms such as bouts of insomnia, heart palpitations, hot flashes, night sweats — the list goes on. According to my doctor, these symptoms are caused by an overabundance of estrogen and low progesterone. If you haven’t figured it out by now I’m in perimenopause.

But with one major complication. I’m an epileptic in perimenopause.

While the symptoms of the raging hormones during perimenopause are uncomfortable, they’re harmless. However, the implications of being epileptic during this time are more complicated and dangerous. Because I fall into the group where hormones can trigger seizures. My primary seizure types are absence (blank staring), myoclonic (involuntary jerks), atonic (drop attacks), simple partials (sensory perception disruptions) and complex partials (autonomic disruptions). I have secondarily generalized tonic-clonic seizures, meaning they only spread to both sides of the brain after a partial seizure has started. As I get further into perimenopause and closer to menopause, my menstrual cycles become more erratic and I see a definitive increase in seizure activity.

The scariest part of this is that many of the perimenopause symptoms overlap with my seizure manifestations. For example, anxiety and panic are symptoms of perimenopause. I have “adrenaline rushes” that we thought were anxiety and panic attacks but are seizures. Mood swings and irritability occur, too. Headaches, electric shock, memory issues, fogginess, tinnitus (ringing in the ears) and other symptoms can all either be a result of raging hormones, seizures or both. I use two apps on my iPhone to track both seizure activity and menstrual cycles. I’ve found My Seizure Diary and Period Tracker to be beneficial in helping me, my epileptologist and gynecologist stay on top of this as best we can.

Doctors have tried to test my hormones, but my results came back within normal range. My gynecologist has no doubt I’m in perimenopause. I’m 44, so the age is right. The symptoms are there. And all the women on my mom’s side of the family went through it at my age and were done by age 46. While this isn’t definitive, my gynecologist says hormones fluctuate so much during perimenopause that it’s nearly impossible to get an abnormal reading. I asked her when we would and she said, “When you’ve entered menopause.” As frustrating as it is, she’s correct. Hormones can fluctuate minute by minute. So they can be off when they insert the needle and by the time they draw the blood, they’re back to normal.

I made the decision to not take any type of hormone replacement therapy based on my lifestyle and only after discussing it with my epileptologist. Please talk to all of your doctors before making a decision either way. If you’re in perimenopause and not epileptic, hang on tight; it’s going to be a wild ride. If you’re epileptic, just hold on a little tighter. It’s my understanding that once we’re out of perimenopause and into menopause, there can be a reduction of seizure activity. Look on the bright side. A decrease in seizure activity and no more periods. That’s what I call a win-win!

Editor’s note: This post is based on the writer’s experience and should not be taken as medical advice. Please see a professional before going on or off medication.

 Do you have a story about your experience with epilepsy? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

One of the definitive moments of the feature film, “Sex and the City,” shows protagonist Carrie Bradshaw entering the large closet of her would-be new apartment. As the lights flicker on, she takes in the size of it (really, it’s ginormous) and imagines all of the designer shoes she will fill it with.

I cringe whenever I watch that scene, as much as I love that film (it’s a guilty pleasure). Because I would never find enough “sexy” shoes to fill that closet with, even if I could afford them all. Because the shoe industry has neglected to make shoes for women like me. Women with small feet. Women with spina bifida.

For me, an assertive invitation of “Let’s go shoe shopping” evokes feelings of being a lamb dragged off to the slaughterhouse.

I’ve been that girl — the one who has broken down in the size 5 aisle of Payless and other shoe stores. Because they don’t carry anything smaller for me.

Indeed, some of my cutest “girly” shoes are in children’s sizes. And yes, they’re flats.

woman posing for photo next to a tree
One of the few pairs of shoes in my closet that have short heels. I wore this outfit to a vintage-themed event. When I posted this as my profile pic a while back, I received compliments on my cute pose. Little does anyone probably realize I am grasping at the tree to keep from stumbling.

I can’t wear heels unless they’re even. None of those stiletto-style heels or wedges — even the shortest heels will have me teetering off-balance within seconds of standing.

As I visit shopping malls and see signs indicating accessible entrances and restrooms, and ramps conveniently placed across from accessible parking areas, I’m reminded of how far we’ve come as a society that’s striving to welcome people with spina bifida and other disorders.

As I scour the ladies’ footwear section of any major department store, I’m cruelly reminded of how far we still need to go.

Indeed, I think my gender makes things worse for me as a shoe consumer. Men can get away with wearing more comfortable shoes, and even dress shoes don’t have heels. In fact, they could probably get away with wearing the same pair of shoes for a week straight, and no one would be the wiser.

But I feel like the entire culture of being a woman in the 21st century is centered around footwear. “I don’t know if I have shoes that will match this outfit!” “Let’s go shoe shopping this weekend.” “Oh, my shoes are killing me, and I didn’t bring rescue shoes.”

Guess what? Your “rescue shoes” are what I would wear to a social function. For me, there’s no such thing as rescue shoes because women like me can’t wear the shoes you so badly need to be rescued from.

I want to see a broader variety of shoes made available in the mainstream shoe industry — smaller sizes, 5 and under (for women, not just in girls’ styles). We need all types of shoes: professional and formal, for parties, work, school, you name it. Because sneakers are not going to cut it every single day. I need to see shoes that are wide enough and short enough for all shapes and sizes.

And if it were possible to create a larger variety of heels — smaller heels that are stable and easy to use for those who can stand — that would be awesome.

I can recall so many occasions on which I’ve attended parties with girlfriends. Near the end of the night, they’re complaining about their shoes. “God, my shoes are killing me, Laurita! You are so lucky you get to use that wheelchair. Can I borrow it?”

No, you may not borrow my chair, because it is not a one-time deal. With this wheelchair, (which I use often for events, especially when I have to resort to wearing uncomfortable boots to match an outfit) comes a lifetime of envy, resentment and anger for me because I can’t wear the shoes that are killing you right now. Because I wasn’t granted the luxury of being able to wear strappy heels that I will remove in less than two hours to dance barefoot on the dance floor after my feet have blistered.

Because as much as I hate to admit it, especially to myself, I love the shoes other women love — the strappy, shiny heels that you seem to glide effortlessly in, while I stumble clumsily in my flat boots.

Because Fate long ago decided that I do not get to live the Carrie Bradshaw fantasy for one lousy night, because that’s life.

Oh, your shoes are killing you? Then by all means, be my guest and remove them. You know what? They’re killing me, too.

Follow this journey on Holdin’ Out for a Hero.

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