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My Daily Life In November of 2020, I had Covid. It wasn't mild, and it was definitely not fun. I told myself that going to the hospital was not an option. I should have gone. For almost two months, I couldn't breathe or speak without coughing. It was such a hard and terrifying experience. Fast forward to now: I've been diagnosed with Dysautonomia Long Haul COVID-19 due to having it back in 2020. I've been suffering from extreme amounts of stomach pain, nausea, insomnia, and sometimes breathing is still hard. I had no idea what was wrong. I saw so many specialists and even went to the Mayo Clinic. After months and months of tests, hospital visits, and medications, I finally got an answer to what was wrong from the Watson Clinic. It definitely helped knowing, but not having a cure was crushing. I had already been diagnosed with epilepsy when I was 13, fibromyalgia when I was 28, PCOS when I was 16, and suffer from extreme migraines. This wasn't something I wanted to hear. A new problem I have to face and adjust my life to. However, I stayed as positive as possible. After almost a year of being on long-term medical leave, I got to go back to work. It's still a daily struggle, but the little wins help. It's definitely hard when people look at you and think you're okay and like to judge. I know in this community everyone understands exactly what I'm going through. I'm taking it day by day, and not letting my chronic illness win. I go out as much as possible and rest when I need it. I'm thankful I have a support system that understands when I cancel and when I need help. They have been with me on a journey that is not the best, but they keep me going. We are strong warriors. Smile bright and stay positive 💜💜

My story I used to dance 30 hours a week on a professional level. Now I’m barely walking. What happened? PNES did. PNES are Psychogenic Non Epileptic Seizures. This means (for me) that I’m awake during my seizures and that there is no epileptic activity in the brain detectable. It’s very scary really. Having zero control over your body whilst you can see everything that’s happening. Sometimes I can talk, sometimes only form words or just sounds. I have a lovely service dog who goes everywhere with me and helps me through my seizures next to amazing friends and family who always help me during seizures. I also have to take a lot of medication to keep my seizures at a minimum. Next to PNES I have many mental health issues and chronic illness. These combined probably led to PNES in the first place. PNES has forced me to start my life over and over again. To keep getting back up every time it knocks me down is so hard, but at the end of the day we always keep fighting.

Representation Matters My 4 year old daughter and I had a little mom & me date today for the first time since her brother was born in December. Naturally, she wanted to go to her favorite store, and I was more than happy to oblige! We were meandering through the Easter section when I spotted this lone bunny on a shelf. I snatched him up and stood there, shocked and amazed, with him clutched in my hands. "Mommy that bunny's chair looks like my chair! He's just like me!", my daughter Eleanor exclaimed, her little voice full of excitement, her sweet face beaming. You see, Eleanor is a part time wheelchair user. She can walk, run, and even jump; but her mild Cerebral Palsy makes it so that she fatigues very quickly, falls frequently, and cannot tolerate long distances or long days. She wears hinged AFOs daily, but sometimes they just don't provide her enough support. My daughter is a part time wheelchair user, and this was the first time that she had seen herself represented among the typical decor. Representation matters. It's important, it matters, and Target SEES my child in a way that many people and businesses do not. I carefully placed the bunny in our cart, and with hot tears stinging my eyes, replied "Yes baby, he's just like you."

About Me I’m Cait, a queer writer, artist, and thriftlord. I wheel through a young-adulthood flavored by neurodivergence (Autism, C-PTSD), disability (EDS, FND), and lots of coffee (usually a large flat white). I use social media (@caitruthlawrence) to share queer fashion for wheelchair users and perspectives on disability and mental health. I’m also building up to returning to university where I’m studying sociology and digital media, and this year I am living independently for the first time, which is going amazingly, and that in itself is amazing. First 5 years I was born with 2 of my disabilities (EDS, Autism) but nobody knew that until I was diagnosed as an adult. Not knowing for over 20 years meant the problems that arose were mismanaged. With some further personal traumas, as a teen, my mental health plummeted about as low as you can go. I spent 5 years in hospital across 12 different wards and rehabs and it’s taken about 10 years to climb back to stability. Next 5 years There was a rather large complication though: as I clawed my way through recovery, I started to get physically unwell, with pain and injuries and strange sets of symptoms no one could quite make sense of. I bounced around hospitals and health professionals for issues with my bladder, digestion, joints, mobility, pain, nervous system, heart, and was so scared and confused that we didn’t understand why I was having problem after problem. For 5 years I’ve fought through the struggle both with my body and mind and now have some better clarity and support, but am also having to rebuild my identity which has been so battered by being unwell for over half my life. I must now weave permanent disability into myself, this person I now am and am getting to know. Perspective is Everything It’s been about 13 years of all-consuming fighting with my health, and I’m only 25. Has it been hard? Absolutely, it’s been really hard. Do I wish things had been different? Yeah I do, but I don’t place importance on that. I don’t need things to be different to build a life I am proud of. I look back now in awe of my past self for how much they survived. I never had a choice in what struggles I faced, but I always had choices in how I would face them and the fact I am still alive. I am mostly mentally recovered, continuing to learn and reflect and grow. I must have made some good choices through what options I did have, and that gives me power to move forward further. Recovery is Possible I’ve made it through 100% of my worst days (and some of them have been truly awful). I feel like if I can do that, then there’s so much more that I can achieve also. I’m only just getting started.

Zoe Meet Zoe. Zoe is 12 years old, and she is a character! She loves animals, music, vacation, and her people. She has a great sense of humor and amazing timing. She likes to dress as a princess, and she likes to wear shoes that make her go fast. She snuggles our pets; they love her and tolerate her at the same time. Zoe enjoys helping with chores around the house; as I'm typing this she's behind me folding laundry while listening to Disney music on Pandora. I still haven't found my favorite pajama top from the last time she helped me. She has particular fascinations with a variety of objects; the list grows and changes as she does. Currently she takes photos of exit signs, open signs, any posted rules/guidelines she sees, emergency vehicles (she can distinguish between the sirens before she sees the vehicle; she knows what's coming), fans (ceiling, oscillating, doesn't matter), musical instruments (especially those with strings), and there's probably something I'm missing. She tends to be temperamental, and she has several imaginary emotional support pets who take turns keeping her company, primarily while we're driving, on the hard days; they know when they're needed and when they're not. Her current favorite is Carrots the bunny; he's cuddly, but sometimes he bites. Zoe was born with spastic diplegia cerebral palsy, level 2 (although not diagnosed until seven years later) and moebius syndrome (diagnosed at 6 months) after a typical, full-term pregnancy. She spent 11 days in the NICU when she was born because the doctors knew she had something going on, but they weren't sure what it was. She had trouble feeding; she would choke and turn blue. They found that she had reflux, and medication helped with that. We worked to help her eat with a special bottle; it turns out that she had facial paralysis, and that's why she had trouble getting enough suction to eat. Once we got home, we kept feeding her and taking her to appointments; we started therapies. They still didn't know why she struggled with so many things. Then at a routine ophthalmology appointment when she was 6 months old, she was diagnosed with moebius syndrome, which includes facial paralysis and lack of eye movement as its defining characteristics. She has ptosis (droopy eyelids), but she can see; she's farsighted, but she started wearing glasses at 2 to correct that. She was diagnosed with autism at seven; we were actually at an appointment to discuss the possibility of her having autism when the nurse practitioner with whom we were speaking pulled up her brain MRI (taken at 3 days old, at the same hospital where we were). She had a good look at it, called in the developmental pediatrician she works with to look at it, and they told us that she has cerebral palsy. We weren't overly surprised; we suspected she had a neurological condition that affected her muscles, in addition to the moebius syndrome; the neurologists we had seen had told us that much; they just weren't sure what it was. We weren't sad; it was actually a relief to finally have a diagnosis because, by that time, we had seen so many doctors who didn't know. They were all in agreement that she had more going on than moebius syndrome; moebius mostly accounted for her facial paralysis and difficulty eating, not so much the fact that she didn't walk on her own until shortly before this appointment. We were a little flabbergasted that her seven year old MRI hadn't been properly read until then, but what can you do? The timing of that appointment was actually amazing for us because she had been turned down twice that year by insurance to replace the wheelchair she'd had for four years and was outgrowing. A few weeks after this appointment, she was approved. We were also told at that appointment that if they had seen her a year earlier, when she still depended on a walker to get around, they would have told us she'd never walk. And they would have been wrong. I'm so glad they would have been wrong; there's nothing like seeing the pride of a six year old who just learned to walk. Zoe has a disability, but that isn't who she is. Her disability is a part of her, but it will never define her.

From the injury to a new, beautiful life Hi Everyone, I’m Lorenzo. I’m 18 years old and I live in Italy. Since I was 5 years old my favorite sport has been downhill. I've raced for some years and then on the 24th of August 2020 everything changed. I had a big accident while I was riding alone on my enduro bike and I broke my t4 and t5 vertebrae, everything was black, and I was paralyzed. After 6 months of rehabilitation, I was finally back home. Then my new life started. I met the champ Nicola Dutto and he’s become, my mentor. I started riding a quad and this year I will race the Baja500 (a 500 km rally race in a Spanish desert) and probably also the Vegas to Reno (an 800km rally race in California) Nothing is impossible. Never stop.

This is my story. Hi my name is Gabrielle, November of 2019 I had an accident & suffered a traumatic brain injury. I was involved in over 30 rehabs until November of 2021, when doctors did more testing & found three strands of Lyme disease. They believe I have had it for over a year. I just finished 30 days of IV infusions through a Picc Line in my arm & am starting my next treatment this week. I have lost partial feeling in my hands, hips & legs due to the bad toxins not getting out fast enough. I do not know what’s ahead but I believe hope is in front of me & you!!💚🦋

A Little Bit About Me Throughout my childhood I had a passion for two things, football and video games. It was a dream of mine to play football in college and I was on my way there until my life was changed forever. On September 11, 2009, during a high school football game I made a tackle. All of the sudden, I was down and couldn’t move. I broke my neck at the C5 level and was instantly paralyzed at just 16 years old. After a nine hour surgery and almost losing my life to pneumonia, I made it through and now I have dedicated my life to physical therapy. I eventually got enrolled into college and am currently working on a degree. Football and other sports remain a passion of mine just more so as a fan now. It can be very difficult to find a new passion or develop a new plan especially after dealing with something so life changing. Still, I wanted a way to explore my other passion of gaming which I've continued to do despite losing most function of my fingers and hands from my injury. I recently started to livestream myself playing video games at www.twitch.tv/codywillmakeit hoping to inspire others in the disability community. No matter our limitations or challenges we should still be able to immerse ourselves in a different world and enjoy playing a story. Gaming has recently become much more accessible, and I want to be a part of making this trend continue. It’s still a goal of mine to walk again someday and I continue to make slow progress. I can stand unassisted for seconds at a time and even take some steps with assistance. No matter how tough times get, I want to inspire others to find that strength within you and never give up!

Accessibility matters Vulpine Hawk (@lordofjonktown on tiktok) shares an important example for us of accessibility and the lack of care put to in some Institutions and even campuses as we see in the clip. Please whenever you see something like this, complain, advocate to get it fixed and changed. As he demonstrates it might not be important for you, but it is for someone else, and we are all in this together! Yes Yoocan make a change.

A voice for Cerebral Palsy Hi My name is Miracle Pelayo. I was born and raised in Los Angeles, CA. I am an actor, model, and influencer with Cerebral Palsy. I was diagnosed with CP when I was 8 months old. My mother went into labor with me 23 weeks early. I weighed just over 1 lb. I was in ICU for 4 months and after many answered prayers, here I am! I will always see my disability as a superpower to change the world in the best way. Everyday I love to bring Cerebral Palsy awareness in the most creative way possible. I love how acting, modeling, and being a fashion influencer gives me a chance to do that in 3 different art forms that I am pursuing. My passion is performing and being a voice for Cerebral Palsy. I want to show people with disabilities that anyone can make their dreams come true. I've been in the entertainment industry for over 8 years. I've been featured in numerous projects such as Nickelodeon's Bella and The Bulldogs, Tommy Hilifiger, and Yamaha. I modeled with Olivia Culpo and recently made history with American Girl Doll as the voice of "Lily" who is the first AG Doll with Cerebral Palsy! Voicing this doll was such a huge blessing and changed my life in the best way possible. Having Cerebral Palsy gave me a purpose in this world and I hope that I can bring Cerebral Palsy Awareness to the table in a very fun and creative way. My mission in life is to also bring people back to Jesus and to make feel good movies that say anything is truly possible if you just have faith. Come follow my journey! MiraclePelayo.com

Life With FA Hi! My name is Katie (follow me at @katiesdiscoverableworld), and I was diagnosed with a condition called Friedreich’s Ataxia when I was a junior in high school (about 20 years ago- eek!). FA is a neuro-muscular disorder that affects primarily my legs but can also hinder other general motor skills. Because it is progressive, I didn’t fully realize the hurdles I would face as my condition progressed. When I was first diagnosed it was mostly because of balance problems. I had a hard time going downstairs. I would brush it off as a dizzy blonde scenario. :) However, with the formal diagnosis everything changed. Back then though I didn’t realize how much they would. I still went away for college and then moved to Orlando to work at Disney World before moving back home to Atlanta, GA. I’ve been living in Atlanta ever since where I work full-time and travel as much as possible. The past 5 years have challenged me in many ways- I’ve been forced to come to terms with various parts of my condition. The loss of some independence has made me embrace new interests. I’ve started my blog about traveling and my adventures as a young woman with a disability at katiesdiscoverableworld.com. My blog and Instagram it’s been helpful in being more open about my condition and helping me feel less alone. I’ve connected with others, learned tips and tricks, and gained the confidence to propel myself forward. My condition won’t stop me, but it will throw a few hurdles in my path. However, armed with the proper tools and most importantly a community of family and friends, I’ve got this. :) xo, Katie @katiesdiscoverableworld

It Is Okay to Mourn the Life You Lost, But It Is More Important to Embrace The Life You Have Gained Why are you wearing shin guards? As a former cashier, and current employee who works with families, I get asked this a lot. The confusion usually changes to awkwardness or shock when I tell them the truth; these are leg braces. I broke my back when I was 17. The most popular response I get is usually a wince, or an “I am so sorry.” Then they follow-up with a “How did you break your back? A car accident?” As a curious individual, I am very empathetic to these inquiries, but I wish people would not pity me. I had two minor accidents within a few months that changed my life forever. In August of 2016, while jet skiing, my friend and I jumped a large wave. We flipped it and were thrown from it. I knew something bad happened immediately. An MRI and a few weeks of physical therapy later, we discovered that I had two bulging discs in my spine (L4-L5 and L5-S1). At the time, I was in a lot of pain. My doctor told me that I could still swim, but I needed to stop once the pain worsened. I went to practice and lasted no more than 15 minutes in the pool. Two months later, I was propped up on a chair with wheels solving integrals in Calculus class. A classmate of mine startled me and I fell hard onto my right side. I sat there a good 5 minutes, waiting for my body to calm down. In the following months, I had multiple x-rays, MRIs, and consults. I fractured my L5, herniated those two discs, and a cyst opened up in my spinal cord (S2-S3 Tarlov cyst). I was also diagnosed with Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome. This first picture was of me at rock bottom. I just turned 18 and was recovering from my first round of epidural steroid injections in my back and SI joints. I was tired of months of insomnia, pain, and poor mobility, and was at the point of contemplating taking my life. I couldn’t swim, I did online school, and spent my days stuck on a couch. The second picture was about a year before the first. I used to be a triathlete who used to cross-train for swimming (and I loved it!) and dreamed of one day completing an Ironman. Finally, the third picture was just shy of a month ago at U.S. Paralympic Swimming Nationals. I made the National C Team and got bronze in the 100 Free, 5 years after my injury!