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Building a new life after suffering a severe spinal cord injury. In 2010 I had an ATV accident that resulted in fracturing C1,2,3 and burst C4. I was paralyzed from the neck down. The prognosis was that I'd likely be using a power chair with a sip and puff. I kept fighting and eventually learned to walk in spite of my injury. Taught myself to be lefthanded through drawing and painting. Over time I found my new path in life, creating works of art. Don't be afraid to get out there! Before the accident, I was into surfing, hiking, motorcycles, fishing, etc. I have found a group in my town that takes any disability any age surfing. Yes, I get to go surfing! Last month I completed my first 3k. My goal was not to use my power chair, not stop, and finish around an hour. I finished in 58:33! I made it the entire distance. Our greatest barriers are often within our own minds.

Everything went wrong after Long Covid I was relatively healthy until I got long COVID in 2022, several months after a relatively mild initial case. I never knew what it was like to be chronically ill or live with severe, debilitating chronic pain before that. Now I do and I have so much more empathy for other individuals who live with those conditions! I also had no idea I was neurodivergent until I was an adult, and that makes a lot of things make sense in retrospect. I really want to draw attention to the medical gaslighting that happens especially to young and AFAB individuals (assigned female at birth)! I am basically an 85-year-old in a 30-year-old body. :) “Do You Actually Have That Diagnosis?” I get asked this question all the time, by people who probably can't fathom what I am going through. I rarely tell the full extent of my health problems in one sitting with anyone ever because I know it might overwhelm people (I've even been told it does sometimes) and it's sad I constantly have to worry about this, even with my own family sometimes! I have found that you don't get taken as seriously when you are dealing with chronic pain/illness if something acute happens because people will be less likely to accommodate you when you're "always sick." I feel like people only treat you seriously if you are basically dying with cancer, or close to death. It's very performative, like why can't we all just love and support each other while we are still on this planet and why must I always justify my diagnoses and how I got them, especially when you are going to say you're too overwhelmed to listen to my response!?! I am NOT a hypochondriac and don't ask questions you aren't prepared to receive a response to. :) It's lonely enough navigating complex illness and pain as it is... I am very grateful for the opportunity to post here, thanks!!!

I love me, disabilities and all In 2020 my whole life changed. I experienced my first cluster headache (also known as suicide headache). I’m a chronic sufferer, meaning I never get a day off, and they are the worst pain I have ever experienced. I was experiencing more than 8 attacks a day and I was utterly exhausted. I was so embarrassed of having an attack in front of anyone as I tend to bash my head and become extremely agitated so I stopped seeing people and stopped going outside. The cluster headaches caused other underlying health conditions and disabilities to become more noticeable. I have now also been diagnosed with hypermobile Ehlers-Danlos syndrome, chronic fatigue syndrome, POTS, and chronic migraine. Everything combined has affected my mobility. I can no longer work, and most days I can’t look after myself. It felt like my whole life and identity had been ripped away. I felt worthless, like a burden. I was diagnosed with agoraphobia, severe depression, and anxiety. It’s taken a lot of hard work to put my mental health in a good place and embrace my new way of life but I am now proud of my body for fighting so hard. I have realized that everything I go through with my health has and will continue to make me stronger. Yes I’m always in pain and some days are going to be harder than others but that’s okay. I’m so proud of my disabled self. I am me I am awesome and I love being me ❤️

Motorcycle accident with Amputation Hi, I am Marek from Germany I am 36 years old. 2016 I had an accident with My motorcycle. I crashed into a car. They flew me to the clinic and I lay in a coma for 1 month. My Left Side was so damaged that they had to amputate it. I lost my left leg and also my Left hip completely. Also, I lost Parts of my short-term mind. I had to learn in Parts speech, writing, and reading again. I have to make notices for everything to not forget it. In daily use wheelchairs and crutches. Love to spend time with Family and Friends. I have a big passion - that's the Gym. It was also my Big Passion before and if I Look back - it was one reason that I am still Alive. I am an all-time positive guy and love to Take things easy. Life is good :)

Our story In April 2006 my life drastically changed. I was involved in an RTC. I suffered multiple injuries including a broken femur, ribs, and pelvis, but the lasting damage was a T6/T7 complete spinal injury and a brachial plexus injury to my right arm. Meaning the only movement I have left is my left arm, head, and shoulders. I was 15 years old and had been riding horses and showjumping from the age of 5. Horses were my life and being told I will never ride again shattered my heart. A couple of years before my accident I bought a young horse to break myself, I did all the work and loved her but due to the crash, she had to be sold. I swore that one day I would get back into horses and find a way to do it all again. Carriage driving was the route I found I’d be able to do so I decided to buy a Friesian sport mare to breed a foal to eventually drive and compete, and I named him Majestic. When Majestic was just 2 I spent every day on the ground playing with him, getting him used to me using the skills I knew about horses from before and adapting it to what movement I have now. Many people were unsure even against me driving such a young big powerful horse but I gained trust with him. I sent him away for 8 weeks to be introduced to the carriage. When he came back my mum drove him a couple of times and although he was still very green I wanted to take the reins. I didn't want my disability to stop me from being the one to do it with him. I found an amazing woman who introduced me to the driving trials and saw past my limitations. The driving trials are fast-paced and could give me the adrenaline showjumping did. I needed that back in my life. I was the one who took him to his first competition and we are improving more and more at each outing. Although people doubted me being able to handle him I didn’t let my disability stop me and never will. We are only 2 years into our competition journey but I train each day. Majestic gave me focus and gave me something to work towards each day. I compete against fully able people and make no allowances for my disability. I just have to work harder.

Pre-Crew My name is Sarah Kalis and I am a wife, mom, and special education teacher. I have loved my work within the disability community, and I truly feel like it has always been my greatest passion. I have been a mom and teacher for a decade. Parenting a typical child while working with those with disabilities taught me early on to never take anything for granted. I thought I had always done an adequate job being an advocate for those with disabilities through my line of work. However, it took me to become a parent to truly understand the depth of the disability world. I am not going to lie, my deep dive into becoming a disability parent was not graceful, and it took place alone, on a NICU rocking chair, with MyChart in hand. Diagnosing Crew My son Crew was born at 31 weeks and 2 days. He weighed only 2 lbs 9 oz. After years of miscarriage and secondary infertility, I was in disbelief I would even have a second child. So, my pregnancy was instantly filled with anxiety. After a rather uneventful, yet nervous pregnancy, I found myself in slight discomfort one day and strapped to an OR table the next. I had developed severe and sudden onset preeclampsia. Crew was without amniotic fluid for an unknown amount of time and therefore was extremely growth-restricted. I was never prepared for a preemie in the slightest. When he was born, I spent the first few days under the false notion that he just needed to grow, and everything would be smooth sailing. Crew quickly blew us away. He needed very little oxygen support and was active, feisty, and beyond adorable. We were battling low platelets and trying to balance some chemistry from my toxemia, but other than that, everyone was truly looking at the glass half full. We had just celebrated Crew no longer needing oxygen, the isolate, and voyaging down to the less intensive floor of the NICU when a routine head ultrasound spotted a brain injury. I knew he was having a repeat head ultrasound that day, but no one seemed worried. When I opened the MyChart results, I was alone rocking my baby when I read the words “Periventricular Leukomalacia.” I scurried to Google. Cerebral Palsy. Google is scary, so I opted to read peer-reviewed journals instead. “Almost all babies with PVL go on to have some type of disability.” I sobbed. I signed up to be a special education teacher, not a special education parent. I instantly felt guilt for that thought. Here I’ve been, for 10 years of my career advocating for all kids CAN do versus can’t do. And I wasn’t even allowing my son the same opportunity to show us what he’s made of. Crew's Crew Crew was finally discharged from the NICU. We immediately enrolled him in Early Intervention and started in therapies. Crew had a slew of specialists, and we settled into our new normal. It took me a while to not look at the CDC milestone app daily. Occasionally I will practice checking off “not yet” for every skill listed to prepare my heart for doctor’s appointments. But Crew has softened so many hearts around him. He has taught us to laugh longer and to love harder. He has taught us the value of inchstones. He moves mountains versus milestones. His giggle is infectious. Knowing that Crew has a mom with a master’s in advocacy, a sister with a black belt in empathy, and a dad with an armory of hope, he will live a great life.

My story Hi! I'm Hend from Egypt. On the last day of the year 2020, I had a fixation surgery to stabilize vertebrae T11 that was fractured a day before in a life-altering car accident. I became paraplegic and had to start learning all about it. I lost my job after the accident, but luckily I got a lot of job offers and was employed by a great company. I live in a country that's not accessible but I go out as much as I can and have fun nonetheless. My life has changed dramatically but I'm surrounded by people who I love: my partner, family, and friends who are providing constant support and making it all easy. I'm able to focus on my physio, work, and how I can make the best out of this situation.

How to Use Your Voice The last time I wrote for this website; I wrote how cerebral palsy and time didn’t derail my dream of becoming a black belt. Now I’m back to tell how my voice might lead to a new career. Have you ever had people tell you that you are talented or good at something, but you don’t believe them? For me, it’s my voice. I’m not talking about my singing voice. I couldn’t carry a tune in a backpack or suitcase. People seem to find my speaking voice special though. I was a broadcasting major in college. My dream was to be an anchor on ESPN. The first time someone complimented my voice, I was making a commercial for a class project. I had a speaking part in my script and asked a friend to do it. We ran out of time, so I just decided to do it myself. It was only 15 seconds, and I did it on the spot. I turned in the project, got an A, and thought, “OK, on to the next project.” I started showing the project to friends and everyone wanted to know who did the voiceover in the commercial. Virtual everyone I showed refused to believe that the voice was mine. When my audience finally accepted it was me, that’s when the compliments started. I never took it seriously though. I didn’t speak on a microphone for around 15 years. I only did it again because at my job we were having an awards ceremony and the organizers needed an opening and closing. I volunteered for the fun of it, and the compliments started again. I was told I missed my calling, that I should be in cartoons, and that I had a gift. I finally started listening and believing that I was talented and wasn’t being lied to for self-esteem purposes. I got training to become a voiceover artist. I went through online training with voicecoaches.com and made a professional demo with them. I’m also a part of an amazing collective of voiceover artists that meet weekly online from all over the world at voiceoverangela.com We all nurture each other's talent and help each other grow. I have my website, seanshortvo.com where potential clients can hear me and contact me if they wish to hire me. I’m on Fiverr as seancshort and Upwork if you want to book with me. I’m venturing into audiobooks and narrations on YouTube. Maya Angelou once said when people show you who they are, believe them. I say to you, when someone tells you that you are talented or gifted, believe them. If you have something you are good at and you enjoy it, do it, practice it, and have fun with it. You can bring joy to yourself and others. Your talent may change the world for the better one day.

Miss T is 10 years old. She has spastic quadriplegic cerebral palsy and uses a wheelchair. She is an athlete. How did she become an athlete? She accepted the challenge. Motivation - why play Our first motivation to try adaptive sports was when Miss T was 3 years old when her cerebral palsy doctor recommended therapeutic horse riding lessons as a way to protect Miss T’s hips from surgery for subluxation, a common occurrence due to tight muscles. After only 6 months of riding, her hip integrity actually improved substantially! Later that year, while watching her sister skiing, we met a group of people with disabilities at an adaptive ski session. We rolled over to watch for a while, then inquired about the starting age. They challenged me to start Miss T skiing. Challenge accepted! I began following #adaptiveskiing on Instagram. I was excited by further possibilities so also started following the hashtag #adaptivesports. My takeaway? A diagnosis of spastic quadriplegic cerebral palsy does NOT eliminate my child from being athletic! It just means I find other ways for her to be athletic. Knowledge - where to play Adaptive Sports festivals offer many options to briefly try out many different sports in one location. Once our eyes were opened to this potential we found so many adaptive sports to try (37 tried so far!). Adaptive sports events supply the appropriate and safe equipment needed for people with disabilities to participate, as well as people to train the athlete in how to use the equipment and play the sport. Here is a list of agencies to contact https://www.challengedathletes.org/adaptive-sport-organizations/ Participation - who can play, what kind of play Miss T is a rock star at some sports (she holds national records for shot put and club throwing), loves playing some sports recreationally, and has found a couple of sports she doesn’t care for. She doesn’t have to love every sport available. She doesn't even have to have good skills or abilities to enjoy a sport. Bocce is a sport which can be played by severely disabled people! Miss T can ultimately choose one sport or many. The point is that she is MOVING, and liking it. Movement is important! I keep her exposed to many types of sports so they can provide a lifestyle of benefits to her. Benefits - how play supports people with disabilities All growing children need exercise, disabled children included. Studies about the power of exercise prove that it pushes back the restrictions of cerebral palsy-affected muscles. Physical therapy is great, but often not sufficient when it comes to children’s exercise. Miss T’s muscles will tighten up without use, which can lead to loss of ability. Consistent, daily physical activity must become a lifestyle to be effective in fighting off the ravages of tight muscles. Miss T’s quality of life depends on keeping her muscles moving! When she participates in adaptive sports she is exposed to many people with a wide variety of strengths, and she learns how other people with disabilities adapt to overcome limitations. Miss T sees people just like her, living life to their fullest. Through adaptive sports, she understands her true potential. Sports are not just physical, they are also social. It is common for people with disabilities to become isolated and excluded. Sports get both of us out of the house. It is a joy for me to see my child trying new sports, and exciting for her to have new and engaging adventures. We both have more opportunities to meet friends who share our lifestyle. We have so much FUN! Sports offer opportunities for Miss T to educate handlers about her preferences while she plays sports. She can practice independently telling sports helpers how she needs her equipment set up. Her confidence and self-advocacy skills are built through sports involvement. She realizes how strong and capable her body is, and that she is the boss of their own body. I want my daughter to see so many open doors that when she comes across a closed door, she doesn’t hesitate to bust it down. Do you want to see your child meet and EXCEED goals? Consider competition! The competition serves to motivate athletic endeavors and creates empowerment. Competition creates *purposeful* challenge. This is how the paralympic movement began. I HIGHLY recommend watching “Rising Phoenix” on Netflix to see how life FULFILLING it was for people with various physical obstacles to participate in sport. Being exposed to para-sports gives Miss T many options for a lifetime of physical health, empowerment, and social opportunities. Physical activity has changed her life! What’s your challenge? Keep playing! “You don’t change the world simply by looking at it. You change it through the way you choose to live in it.” -The Aeronauts- movie

Hi, I'm Lyndsey and This is My Story I was always the 'sick kid'. I missed so much school, that letters were sent home. I had snacks and Advil on hand in my elementary school office. I couldn't run or do anything physical without having joint pain or having a migraine. Good thing I was never a sporty person anyway! I had many Drs. appts over the years and test after test none of which ever showed anything. Finally, at 17 years old, I was diagnosed with Hypermobile Ehlers-Danlos Syndrome. For the most part, my EDS has been pretty mild. Many people suffer from dislocations, but fortunately, I have yet to experience one. As a kid, I had few hobbies. I've always been the singer of the family and the horse girl. I loved being outside exploring, riding four-wheelers, and finding cool rocks/bugs to take home. EDS didn't stop me from doing what I wanted to do until 10th grade when I decided to cheer for football at my high school. I’ve missed practices, and had a migraine developing almost every time I ran, but the last straw was when I got a staph infection from the cheer mats. I missed so much, I was so far behind in what I needed to know, and I had to quit. That was the first time I was upset about my illness stopping me from doing something I enjoyed. For 11th and 12th grade I went to a trade school for Veterinary Science. I was in the FFA, I showed a rabbit in my local county fair. I finally had real friends ( I've always had a hard time making friends) and my health was okay for a while. Then, my senior year I had a couple of episodes of strange symptoms...skin burning so badly that even a sheet touching me was pure agony, my arms went weak for a couple of weeks and I couldn't drive to school or open doors for myself. I remember thinking, "Man, I hope this never happens to my legs!" Those episodes came only once and nothing came of them until a few years later. I graduated high school and went on to work at a vet clinic. I moved out of my parents' house at 19 and I was in college for vet science until I realized that lifting animals was hard for me. I decided to get STNA certified...which wasn't the greatest idea because lifting humans isn't any easier. I then went on to get Phlebotomy certified. I worked as a phlebotomist for a few months before I got pregnant with my daughter, Olive, at 20. About 4 months into my pregnancy I started having unusual weakness in my legs. Knee braces became a staple in my wardrobe. My doctors weren't concerned at the time because of my EDS and the fact that my joints get more flexible due to hormone changes. My intuition told me something else was to blame, so I changed doctors. With the new doctors, I was more comfortable, but still, I thought something else was happening to me. The few days after I had Olive my legs were so weak that I was put down as an extreme fall risk and wasn't allowed to even get out of the hospital bed without a nurse. From that day forward I continued to have limb weakness, I developed an abnormal gait, started having non-epileptic seizures, and was diagnosed with Functional Neurological Disorder after many tests and a trip to Cleveland Clinic. For a while before my diagnosis, I felt absolutely lost. My career path had to change, I was a new mom, and I was losing my independence. My mental health was really struggling. Adding a shower chair and mobility aids to your daily routine is a lot when you've gone most of your life taking walking correctly for granted. It took all but 2 years for me to go from hanging out with my friends and dancing for hours on end to not being able to grocery shop without help. I'm now, 24 years old, and I have been disabled for almost 4 years. Every day I am still learning to accept myself, to love myself no matter what, and to live a life of gratitude. No one knows when their life will change or have to pivot. Without the path my life has taken I may not have found my passion in content creation and disability/ chronic illness advocacy. I refuse to let FND get me down or stop me from pursuing any of my goals. My Instagram @lyndsey_ellen_ is dedicated to sharing inspiring, educational, humorous, and relatable content for other disabled/ chronically ill individuals and our allies. In the future, I plan on public speaking and writing children's books in hopes of breaking the stigmas around disability/chronic illness.

Introduction Hi, my name is Muhammad Hafiz Haikal (@hafizhyqarl). I am a para-athlete from Malaysia and I'm 32 years old. I was born abled until one day in (1993) I had eye surgery then the hospital gave me too much anesthesia which affected the nerves in my hands and legs. I had to start using a wheelchair when I was 18 years old. Now I play Rugby and push boundaries every day. Yoocan do anything when you believe and put your mind to it.

Having Twins Twins are ALL THE FEELS. Fear, anxiety, sleeplessness. But they are also unexplainable, beautiful and unique. My experience may look different from others. This is Harper and Hannah. They are quite literally my little porcelain dolls. They have a rare condition called STXBP1. They are one of THREE sets in the world with the condition. They are non verbal and ride in cute pink wheelchairs. When I saw those two little gummy bears on the screen, NOTHING could have prepared me for this. But now, they are represented by a modeling agency. They represent their community of disability and I could not be more proud. You will never be "ready" for twins. You will never "have it down." It's a constant learning experience and to be quite honest I don't think I'd have it any other way. Being a twin Mom is having a borderline superpower. It will take a long time for you to see the amazingness in it all, but it's there. Not all days are easy Some days' struggles far exceed what we ever expected. Some days we have to FIGHT to get out of bed, PUSH ourselves to take charge of the day, and hate every second of it. Most people don't post anything via social media on those days in fear that it makes them look weak and boring. I used to live by distraction. If I can keep busy if I can walk 4 miles, if I can just keep doing my best day in and day out... the day will be worth something. People see that on social media and I am flooded with messages like, "How do you do it?" "Wow, superwoman!" Truth is I have no idea how I'm doing it. Some days, like today, I take two naps. People look at that as boring, lazy, and unproductive. I now see it as taking an opportunity. Some days, and they are very rare, I charge through this day with unfaltering speed. I've learned to get comfortable with weak and boring. I have had to learn the process of slowing down, so I don't crash. And accepting the downtime, so my brain can process. The processing of this journey is never ending. There will never be a day where I look at a stage or task and say, yes... we are done with that. The ability to constantly be willing to be an advocate, dedicate your life to someone else's care, and run yourself into the ground with a smile on your face, is an ART. Physically, it's exhausting. Mentally, it's a whole other ball game. Point is: take a second nap. Be boring. Seize the day for your own mental health. It doesn't make you weak. It makes you grow. Please stop growing These moments are jagged little pills to swallow. The thing about being a parent of special needs child is we are normally do not have time to process the next big milestone. We are so busy getting through real time milestones to acknowledge the next. Your child's growth is often magical. Something amazing to watch. But when you have a child with a disability it can be painful. With the twins, the bigger they get the less control they have over their body due to lack of muscle. Spine issues are setting in and out seems as if their prognosis is worsening. How do I say STOP GROWING, PLEASE. I put my heart out to all parents of children with disabilities who are struggling to watch their friends' children go through milestones. We are happy that your children became potty trained, took their first step and doing all the things we thought our children would do. We are just finally processing that. Keep pushing, they are worth it. That New Year, New Me Let's be real about New Year, New Me. It was invented by social media. No, really. While social media is an excellent tool for igniting the happy endorphins in our brains, it's not real. The truth is we cannot magically transform into better people overnight. In fact, January 1st is considered National Hangover Day. The last time I experienced a hangover, you better believe I wasn't celebrating it. With the champagne gone, the "texts from last night" and the raging headache, how is it we can possibly turn into a new version of ourselves? I'm grateful to wake up sober, able to cook pancakes for my children, and smile when my son says, "I love you, Mommy." Some people call that "boring," I call it healthy. I'll be real, my 2021 was... eventful. I won't say it sucked (even though it did) I will try my damndest to look at my downfalls as a lesson. Life threw fastballs I wouldn't have ever seen coming. They pelted me in the face, hard. Some changes were self-inflicted while others I couldn't stop from coming. I lost friends, family, sanity, and mostly time. To pick one single event within the year to focus on is not healthy. I have to take a step back, acknowledge every emotional moment and, much like a child putting its finger in a light socket, never do it again. We speak of New Year's Resolutions as if they are this magic spell Harry Potter whipped up for us. Engorgio!!!! We work for better bodies and all things material and mostly our external layers. This year, I proudly get to say I am going to start working on managing my inner layers. Personal Development, knowing my limits, respecting my body as a temple and never accepting less than I deserve. Being grateful for every moment. I am going to continue to advocate for my twins. Someone finally talked me into throwing them into the modeling industry, so I am going to give them an opportunity to advocate for disability and that makes me so very proud. I am going to keep supporting my son with his passion to learn, play soccer, and live life to the fullest. He is just like me, which could be terrifying, but he is a better version of myself and I couldn't be more proud of his resiliency this year. Me? I'm going to make my mental health my FIRST PRIORITY. Because without healing my internal layers, my children can't have their mother. My hope for 2022 is an overall greater understanding and acceptance of mental health issues. It can't be ignored, for some, it's crucial to live. Slowly but surely I will make 2022 better than 2021. I will heal my internal layers and find joy. I will indulge in things that make me happy and slowly back away from things that no longer serve me. I will strive for a healthier body but if that doesn't happen, that's OK. The thing I most look forward to in the coming 12 months is to be kind, show mercy, and always strive for a little bit more joy. Edith Wharton said, "There are two ways of spreading light: to be the candle or the mirror that reflects it.” In 2022, I intend on being both.