Girl with hand covering eye.

What It's Like to Be a Teen With Adie's Tonic Pupil


Adie’s tonic pupil (ATP) is a viral condition that affects the nerves of the eye that carry images to the brain. It can cause one or both of the pupils to enlarge and stay that way. It is almost like a state of paralysis in the pupil. Having a blown pupil causes the eye to be very sensitive to light, and causes the eye to become tired very easily. This condition affects men and women usually in their 40s. Since it is a viral condition, there is no cure and not much treatment.

I have this condition and I’m only 14 years old. My dad was the first one to notice my left eye’s pupil was enlarged just as I was finishing fifth grade. At first we waited to see if it went back down. We waited a couple weeks and then realized it wasn’t going to go down, so we went to an ophthalmologist. He looked at my eye and instantly knew that something was off. He tried shining light in it, but the pupil didn’t move at all. The ophthalmologist did some more tests and hesitantly came to the diagnosis of ATP.

Since this condition almost always affects people in their 40s, I had to get an MRI on my brain to see if something was blocking the signals. The MRI showed nothing blocking the signals. I then went to a specialist in Omaha, Nebraska to make sure the diagnosis was correct, and it was. After that, I didn’t really know what the next step was because there wasn’t any treatment I could do. So I just had to go on with life.

The blown pupil caused my left eye to be very sensitive to any light. At this time I played softball and I would get horrible headaches before we had even finished warming up. Every time I went outside I had to wear the darkest sunglasses I had. My eye also became fatigued very fast. I had to start doing tests by paper only, and they still took me at least twice as long. One way to describe it is, it was like trying to focus on an object with very limited light. Your eyes get tired quickly because they are working so hard. This is what it was like every second of every day.

Homework became so much harder, and focusing on letter and words became such a challenge. I could only read for about 15 minutes at a time before the words started to blur together. All of this caused my right eye to compensate for what my left eye couldn’t do. Before I had this condition, my glasses prescription was around a +1 for both eyes. Now my left eye is a little more than +3, and my right eye is 20/20 vision. My right eye started to do all the work because it was so much easier to focus on words and letters. Right now my left eye can be classified as a lazy eye, and if I don’t wear glasses correctly it will keep getting worse.

Something I’ve tried to do with my diagnosis is raise awareness for other people like me that have unlikely diagnoses. Last year for the science fair, I did my project on my condition. This condition is a rare one, and it’s even more rare that a 14-year-old would have it. I used my science fair project to inform people about the condition and also to show them that a diagnosis doesn’t have to define you. I’m still here and still fighting to be the best I can and I feel like that’s what counts. By the way, I got third place in the science fair.

This condition may seem all bad, but it has also become a blessing in some ways. For example, it has forced me to learn the skills of being a hard worker, and find persistence in myself. It has helped me realize what a blessing it is just to be able to see the things around you every day. All in all, this condition has caused some setbacks, but it is helping me find the determination to do the things I never thought I could.

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by Gabriela Medina.

RELATED VIDEOS

Woman dealing with computer glitch.

Why My Epilepsy Is Like a Computer Glitch


The human brain has long been compared to computers. Over the years, I’ve found that comparing my epilepsy to a computer glitch helps me communicate the frustration, stress, and utter annoyance of having a seizure.

Picture this: it’s 2 a.m.; you’re almost done with a paper you’ve been working on all semester. Then bam! Your computer decides to shut down for seemingly no reason. You pound the power button, you try an array of techniques your friend tells you might work. But alas, your computer is a goner. And of course you forgot to save your paper to an external hard drive.

Now imagine this happening to your brain. Luckily, I’ve always been able to reboot, so to speak. But a lot of times what I had saved in my memory has been wiped. It’s incredibly frustrating to say the least. And if I’m with people who don’t know about my condition, I usually end up in the hospital.

Doctors are like the repair people at a certain computer company I won’t mention by name; they usually don’t know what’s going on. That’s not to say the doctors I’ve been to haven’t been incredibly caring and intelligent. The fact is there’s a lot we don’t know about epilepsy, especially when seizures seem to have no physiological cause (such as a tumor).

So what do you do when your computer crashes? You buy some firewall software, make sure not to go on sketchy sites, and just hope there’s not a hacker out there with their eye on your credit card information. Working in cyber security, I know sometimes there’s nothing you can do. Sometimes the hackers win. And sometimes my medical condition hijacks my brain and body and there’s nothing I can do. Believe me, if I could pop into a store and upgrade my brain, I would.

But there’s also something special about that one computer you grew up with. You know, the one running DOS that you used to play Oregon Trail. It holds a special place in your heart, and you’ll always be excited when you meet someone that can reminisce about these more simple times. So while a new operating system for my brain would be nice, I think I can live with my glitch.

We want to hear your story. Become a Mighty contributor here.

Image via Thinkstock.

 

group of college friends

8 Aspects of Being a Student With Chronic Pain at University


Being at a university comes with its own challenges: learning how to cook for yourself, managing your own money, motivating yourself to do work. But having a disability or chronic illness can make this list that little bit longer.

1. It’s difficult to tell all the new people you meet about your condition.

It’s Fresher’s week and you’ve met at least 100 new people. You know you won’t see most of them ever again and that’s fine, but there are those who you will – people in your courses, in your flat or halls and those you’ve connected with instantly. When is the right time to tell them that you might spend the next three weeks in bed? Or that you might need them to pick up something you drop because your back pain prevents you from doing so? Or ask them to tie your shoes?

2. Your new friends are having to sacrifice for you when they barely know you.

These new friends you do make are having to get to know what it’s like having a friend with a disability or chronic pain. They may have to take the bus with you into town instead of walking, costing them money they wouldn’t usually have to spend, or they might need to leave 20 minutes before they usually would because it takes you that much longer to walk anywhere. It could be they have to carry your stuff, watch out for you on nights out, learn your medication routine. Any which way, it can be so difficult watching people do stuff for you, no matter how “easy” it may seem for them.

3. You’re asking a lot from people who owe you nothing.

This is made worse by the fact you’re all only 20 and no one likes to feel like a burden.

4. Missing school or work is annoying and not “lucky.”

You might have a flag next to your name on the register which means you “get away with” not being in lectures, seminars, labs, tutorials, etc. – your attendance is not something you can be penalized for. For those who don’t understand or know you, you can see why they might think it’s a blessing – you can miss school as much as you want and not have to go to a hearing or be kicked out. But it isn’t. Not going to a single law seminar since before Christmas, not knowing what your sociology essay is even about because you’ve missed all the lectures or not even knowing who’s teaching you politics because you haven’t made it to any of the tutorials is exhausting. If anything, you end up having to work twice as hard because the days you do feel well enough to get out of bed are spent meeting tutors and catching up with all the lectures and work you’ve missed. I’d do anything to be able to attend everything.

5. You miss nights out, pub crawls, shopping trips and parties.

The inevitable time will come when your chronic pain hits you with full force. At this time you’ll probably end up shutting yourself into your dorm room and not really leaving it for a week or two. You let your friends know your pain is bad and you won’t be able to join in much, but of course it sucks. You can’t expect them to drop everything – they want to enjoy the “best years of our lives.” You miss out on your favorite club night, exploring new bars and pubs, trips to Five Guys, the movie theater and the shopping mall and you miss your friend’s party. You have to try and explain to people outside of your immediate friend group why you’re not able to go, which is exhausting. You’re often met with “Oh right, get well soon,” even though you’ll have this illness for the rest of your life, or “But we’ll be sitting down in the cinema, you won’t need to walk.” Well yes, but I do have to get dressed, walk to the bus stop, sit on the bus for 40 minutes and then sit, without being able to stretch, for about two hours. It brings you down but you power on because “there will always be next time.”

6. It is so isolating and lonely.

You can’t expect people to always go out of their way for you. It is difficult to always ask for help too. You don’t want your friends to stop having nights out just because you can’t, but at the same time, you’d love them to offer to have a night in with you or have a movie evening. Most of the time this won’t happen. You’ll sit in your room thinking about the times you could go out and how lonely you feel. Even when your pain isn’t the worst it has been but it’s bad enough to warrant a day off, you feel like you’d drag the mood of any social event down because being in chronic pain or having a disability is difficult to accept sometimes, and this can affect your mental health. The isolation you often feel just perpetuates this more.

7. You meet some amazing people.

There will be some people who make life a little bit unbearable sometimes. For me it’s people in clubs who push me or people who ask why I’m always out of class but feel uncomfortable when I tell them – no fault of their own. But there will be people whom you’d never have met if it wasn’t for your chronic pain or disability. Whether these people are fellow illness warriors, welfare officers, the friends who stick with you through the tough times or even the person you’ll probably never see again who helped you pick up your shopping bag when you dropped it, no questions asked. These people make you realize that no matter how low you feel or how much pain you go through, you are never alone. In fact, you probably have the most number of people who are willing to go that extra mile for you than you ever had before or will have again.

group of college friends

8. You’re still at college and having an amazing time the other half of the time.

When your pain is under control and you’re feeling good, you’re studying a subject you love, you get to go on great nights out, visit new places, meet new people, spend time with the people you know will be your friends for life and, most importantly, you’re independent and you love life.

College has taught me so much about who I am and how I cope with my pain. Life isn’t without its struggles, but it’s so worth it.

We want to hear your story. Become a Mighty contributor here.

Family walking in a field on a sunny day.

To My Parents, Who Never Told Me I Couldn't Do Something Because of Cerebral Palsy


Dear Mom and Dad,

Thank you. Two simple words, but they really do sum up how I feel about how you raised me as your daughter. You had no reason to believe your beautiful daughter had anything “wrong” with her; after all the pregnancy was uneventful. Not counting my chronic ear infections, everything about me led the both of you to believe you had a healthy child.

Lauren as a baby.
Lauren as a baby.

Then it started to happen, creeping up on the both of you like an exam you hadn’t quite studied for. I was dragging my left leg behind me when I was crawling, seemed to only prefer the right side of my body, couldn’t sit up without looking limp and wasn’t talking.

I was officially diagnosed with mild cerebral palsy at the age of 2 and you both put me in early intervention programs. From speech therapy to occupational therapy and even physical therapy, you probably had worries if you were pushing me too much. How much would all these therapies actually help your daughter?

I was put into a specialized nursing school and pre-school where I would receive early intervention. In September of 1999 I started on my way to kindergarten; self-contained but by the time I was in second grade in September of 2001 I was taking a few classes with the regular ed kids. In third grade I was officially “integrated” into regular ed and in 2012 I officially graduated high school with a Regents Diploma. You both were so proud and would tell anyone and everyone about it, much to my 18-year-old self’s embarrassment. I was accepted into a local community college for their version of liberal arts as I worked towards the credits needed to officially be in their Theatre Arts department.

You’ve had to put up with some rather rude responses from people ranging from telling you to give me up because I wouldn’t be any good to society, to people saying I was disabled because of your sins. Yet you’ve never been bitter. Instead you’ve taught me to hold my head up high and not give ignorant people or bullies any attention.

Lauren now with her friend, Amy.

Ever since I found out I had cerebral palsy when I was 6, you never used my disability as an excuse. You always pushed me to try my best at everything I do. Growing up I was never told I couldn’t do something because of my CP, instead that it might just take me a bit longer or I might have to figure out ways to adapt to the situation. I was never treated differently because of my disability; I was expected to do the same chores and have the same responsibilities as any one of my peers. For this I thank you.

I’m now 23 years old, and I’m about to graduate college. I know how to do simple tasks, and know how to advocate for myself if need be. I don’t view myself as an individual with a disability, I view myself as a typical 23-year-old and my disability just sometimes provides a rude awakening to me (shout out to all the times I lose my balance and end up making friends with the ground). For everything you’ve done, thank you.

Love,
Lauren

We want to hear your story. Become a Mighty contributor here.

Cover image via Thinkstock.

girl holding on to tree branch with one hand

What I Really Mean When I Say I'm 'Hanging in There' With Ehlers-Danlos Syndrome


Every Sunday morning, I hear the same question from a few caring people. It’s the same people every week who take the time to ask. I prefer not to lie, so, I usually answer “hanging in there.”

Sometimes “hanging in there” is all I can manage to do. I have classical Ehlers-Danlos syndrome and several of the sister diseases that go hand-in-hand with it. A few of my daily realities are chronic bone pain, tachycardia, low blood pressure, digestive problems, and fatigue.

Those who know me know I keep busy. I teach Sunday school, direct the choir, write books, blog, run Facebook groups, and take care of my home. I overdo it. And if I spend one day overdoing it, chances are I can’t do much of anything the following day. Sometimes it takes several days to recover enough to be back to my “usual” self.

Although, there is no true “normal” or “usual” for me. I may be able to take a walk one day and the next day have to use a cane or wheelchair. My joints seem to have a mind of their own. They pop out at will. Or we may be having a pleasant discussion when I suddenly stop chatting and have a look of agony on my face. A rib likely dislocated. The pain is excruciating. I can’t speak. Most of the time, I can’t even scream. Often, I will seem to fade out, possibly go white, and, if possible, sit down. That usually means my blood pressure is dropping and my heart rate is increasing. I can’t function when this happens. I have to wait for it to pass. Medications help, but they don’t prevent every episode.

One day, I might eat a steak dinner with a baked potato. A few days later, I might not even be able to eat a cracker without getting sick. My digestive system is unpredictable. I have occasional good days, but most days are difficult. I’m not on a diet. I lose weight because I can’t manage to ingest enough calories to maintain my weight without feeling ill. I try to make up for it on the good days, but they aren’t consistent enough for me to maintain a healthy weight.

I went out on disability because I couldn’t handle the physical pain and exhaustion that came with working a 40-hour work week. Yet, too often, guilt at not getting enough done throws me right back into that cycle of pain and exhaustion, followed by a recovery period.

So, when I tell you I’m “hanging in there,” this is what it really means. It means that I’m doing the best I can to live my life to the fullest despite:

  • Being in severe pain
  • Slowly starving
  • Being light-headed
  • Having a migraine
  • Having a racing heart
  • Fighting a mast cell reaction
  • Being physically exhausted
  • Being emotionally exhausted

When I tell you, “I’m hanging in there,” I’m trying to be honest without having to divulge all my personal health information. I’d much rather talk about something other than my disability most of the time, so it’s my way of answering you honestly, without getting into too much detail.

We want to hear your story. Become a Mighty contributor here.

Gift with a ribbon.

Why My Cerebral Palsy Is a Gift I Wouldn't Exchange


I was born with an incredible gift — a gift for which I never asked. A gift that has transformed my life, invoking in me a strong sense of purpose and drive. A gift that has caused me heartache, but has also cultivated an enduring sense of self and an inextinguishable feeling of pride.

Cerebral palsy.

Some insist I am in a state of denial.  How can a medical condition that has caused me great pain be such a precious gift?

For the majority of my life, I wondered how my disability could ever be perceived as a gift, but after years of mistakenly regarding my cerebral palsy as solely heart-wrenching and painful, I have discovered the truth — that above all else, living with cerebral palsy has forged my character, strengthened my resolve and provided me with a powerful sense of belonging, self-love and purpose.  In this respect, cerebral palsy is the most fulfilling, beautiful gift I have ever received, as it has shaped my worldview, molded my values and sculpted the course of my life.

Living with cerebral palsy has instilled in me the value of hard work and determination. From a young age, I learned that a strong work ethic bears bountiful rewards.  Although the process of accepting that I needed to work harder than my able-bodied peers to accomplish physical tasks was emotionally taxing, the constant emphasis on effort inherent in living with cerebral palsy provided me with the powerful sense of resolve I have carried into all aspects of my life. Had I never realized the strength of my motivation through my life with cerebral palsy, I not only would be experiencing more extensive physical difficulties, but I likely would not be intent on pursuing law school to become a criminal prosecution attorney, and I never would have graduated college a full year early with highest honors.

Living with cerebral palsy has taught me that everyone, regardless of background, deserves to be treated with respect, kindness, empathy and love — especially in the face of difficulty. Grappling with the largely invisible challenges of mild cerebral palsy and listening to others’ stories has revealed to me that everyone faces personal difficulties — many of which remain unseen — and in the face of struggle, every person should be unconditionally loved, accepted and embraced. I strive to provide those who fight to be accepted by society with the same acceptance I seek, because I have experienced the pain of feeling marginalized and misunderstood due to my disability — and I intend to begin to create a world in which no one else feels ostracized, underestimated or unappreciated.

Living with cerebral palsy has provided me with the opportunity to forge instantaneous, powerful connections with those in the disability community — ties that can never be severed. I have found a profound sense of comfort in the deep, intimate kinship I feel with others who live with disabilities.  Connecting with those who have disabilities has revealed to me that I am never as alone as I feel. Watching others with cerebral palsy wholeheartedly embrace their challenges has modeled for me that disability is an identity to love and celebrate — an identity in which to take pride. I am immensely thankful to be part of the disability community, as the sense of connection, belonging and unconditional acceptance it has provided me has paved the way for self-acceptance and instilled in me the courage to share my story.

Living with cerebral palsy has revealed to me that true, long-lasting friendship is rooted in acceptance and vulnerability. I spent the majority of my life reluctant to disclose my cerebral palsy to my friends, out of fear that it would permanently alter my friendships, but my decision to remain honest about my physical challenges has been met with pure acceptance and love. The vulnerability of sharing my experiences with cerebral palsy with others has strengthened my friendships, forging deep, rich connections — bonds that can never be broken. Not only has my life with cerebral palsy led me to discover the importance of seeking out friends who value acceptance and respect, but it has also elucidated that vulnerability is one of the greatest strengths in friendship.

Living with cerebral palsy has allowed me to love and appreciate my body in its entirety. For years, I internalized the rampant ableism projected from both society and the media, which led me to believe I could only feel beautiful, confident and comfortable with my body if I were able-bodied. Through sharing my story and taking pride in my identity as a woman with a disability, however, I have come to realize that my body, though perpetually tense, is strong, capable and resilient. By viewing my disabled body through a lens of ability — a lens of love — I have successfully dispelled years of internalized ableism, instead internalizing the truth I have long understood but had rarely seen in myself — true beauty transcends physical ability. Embracing all aspects of my cerebral palsy — from the slightly unsteady way I move to the surgical scars I will bear forever — has not only positively transformed my body image, but it has also sparked an unceasing self-love — a love so vehement it will last for the rest of my life.

Living with cerebral palsy has provided me with a powerful sense of purpose and direction. When I first decided to publicly share my experiences with cerebral palsy, I knew I had the opportunity to utilize my words to advocate for those with disabilities — a chance I could not waste. Although I was initially reluctant to place my identity as a person with a disability at the forefront of my life, sharing my life with cerebral palsy with the wider world has revealed my passion, my purpose in life — to advocate for the disability community by educating and informing others.  I now understand that I was gifted with cerebral palsy so I could use my written voice to become a fierce advocate for those who live with disabilities — and on my most difficult days, I remember the fulfilling path my disability has paved for my life. Viewing my cerebral palsy as an opportunity — rather than as a detriment — has instilled in me a sense of direction, allowing me to utilize my talents to effectively advocate for the disability community.

I was born with an incredible gift — a gift I will carry for the rest of my life. A gift that has provided me all I seek — community and care, drive and determination, passion and purpose, strength and self-love.  A gift I never wish to exchange.

Cerebral palsy.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Stockbyte.

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.