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Muscular Dystrophy My name is Keisha and this is my everyday. Random bouts of dry coughs in the middle of the night. Phlegm. Unexpected shortness of breath. Weakness in the joints. That’s my normal. It’s what it looks like at my stage and type of muscular dystrophy. It also happens to be some of the underlying symptoms that are taking the world’s health by storm right now. Cue the word we’re probably all tired of hearing (and fearing) by now: coronavirus. Late last year, back in 2019, the monster of a virus made its debut. In 2020, it became its top-charter as it became a global pandemic traumatizing folks on just about every continent. Just like that, many thousands have struggled with the everyday symptoms of a person with MD. Only, often with a much quicker, graver result – if they aren’t prepared well enough. Not-so-fun-fact: we aren’t. With Love No one was ready when the virus began to trouble the world. Sometimes, I wonder if I have it, or if I’d possibly get it. The symptoms are parallel. Though I’m in the millennial group, I’m at a larger-than-most risk since my chronic illness compromises my immune system. I mean, how would I even know? It’s not like the tests are readily available – unless of course, you’re a celebrity like Idris Elba, Tom Hanks or a pro athlete? I want to believe that the government here is doing the best they can. The optimist in me believes that they’ll conjure up the proper amount of tests to test everyone who needs it. And when they do, I’d like for them to start someplace like mine. Lucky for me, my life already is pretty similar to the new standards of quarantine in place for much of the inhabited world right now. I live in an apartment specifically catered to those with assistance needs. Many are elderly. Some, like me, are more independent but still need a little help with certain parts of daily life. At the front desk, there’s a “gatekeeper” who help monitor who comes in and out (they’re really cracking down on it now!). One level is a nurses’ floor – for quick assistance should someone fall or get sick. Another is a dining hall. By the time you come up the elevator to my story, you’ll pass not one, but two, stations to sanitize your hands before even reaching me for a hug or handshake. Though of course, neither of those is happening right now. I’m playing it super safe. It may seem that my living situation is extremely fortunate considering that I don’t really ever have to leave the building into the world of chaos out there, but my condition like most others that live here makes us subject to a round of sudden death if the virus ever makes its way to us. It’s especially terrorizing against the elderly and those who are sick, whether they know it or not. That’s the big deal. Those of us who aren’t harboring the perfect bill of health and who aren’t simultaneously at the tender optimal age, have significantly less chance of making it. That means your young newborn niece with an immune system that’s just learning how to work, could be easily impacted by a person hosting the virus. Your seemingly healthy, adolescent teammate on your soccer player could lose his last match. Your 30-something-year-old doctor? You could be risking their lives and the potential lives they would save on the front line. In times like these, quarantine sounds like a good idea. I support it. Not just for myself – someone who knows they’re compromised – but for all the many, many people who don’t know they’ve got cancer, high blood pressure, lupus or whatever. That could be anyone. Any anyone could pass it along to a handful of people in an hour, who pass it on to another handful, and another and thus the growth of this pandemic. That’s why people should be inside and let the professionals get some control over this. Follow the rules. That’s my best advice. That’s what I want to happen. Really, that’s what we need to happen. It’s a positive thing. It keeps everyone safe, well safer. The more people that are out and about, the more people can infect each other. It reminds me of a lot of Contagion, that one movie that came out back in 2011. It was a real eye-opener. But I guess not enough. The government was pretty passive at first, claiming it was no big deal. I don’t think they acted on it as quickly as they should have. The movie showed us that – but then again if someone doesn’t listen, what more can we do? We’re in it now. Remain inside and take care of your individual needs. There’s still FaceTime, Skype, phone calls, and social media to keep in touch. But keeping a level of isolation allows more space for the virus to make its way out. If you don’t have to go see someone, don’t. Send a funny meme instead. Those always make me laugh. I don’t personally mind being quarantined. For the most part, other than those sneaking thoughts, I’m not too afraid either. One thing I learned from my late-onset of MD was that somethings are just out of your control. It’s here, so we’ll have to take it day by day. I’ll admit, I did want to head out an get a hair cut and keep active at my aquatic therapy class, but neither of those was essential enough to take the risk. So I didn’t. And I won’t until it’s time. In the meantime, I’m operating pretty much business as usual, well, minus my daily dose of talk shows like Wendy Williams. “How you doin’?” Now I just have to imagine her saying it. I guess – I hope – I’m doing fine. Being the over-prepared person that I am, I had plenty of sanitizers, toilet paper, and other essentials. I always buy in bulk, so I never really had to face the worry of what I hear is going down in the grocery stores right now. And I actually love being alone – so now, other than the two PCAs who come to get me ready for bed each night, I don’t have to really face anyone, other than the fictitious friends of my latest Netflix binges and of course, my GCR family – all of you! Family, I pray you to do your best to keep your stress levels down – even with the 24/7 updates you’re getting from every direction. Your immune system is depending on it. And your family members, friends, peers, and neighbors are counting on you to WASH YOUR HANDS and STAY INSIDE. We’ve got to get this thing under control! Since we're all inside anyway, how are you guys staying safe and healthy? And what things are you doing to keep entertained? I'd like to hear what you guys are up to! Share in the comments and stay in touch! And remember, before you leave the house, consider your health, the health of your loved ones and the many, many people like me. If possible, help flatten the curve by staying inside! With Love ...

Non verbal autism Hello, my name is Beatriz Lemus, better known as Bea. I have moderate autism, I am non-verbal, my communication is through an application on a tablet. Life for me has not been easy, not only because of all that having autism implies, but also that I have hypersensitivity in all my senses, which makes the world, that is so noisy and stimulating, very torturous for me. However, despite my shortcomings, I have several things going for me, an IQ of 195 and a born musical talent. Since I was 3 years old, I already performed concerts on the piano. I performed my first concert as a soloist of an orchestra when I was 7 years old. However, I abandoned music when I was 14 years old because I decided to face a much bigger challenge, which was to study medicine. With a lot of effort, I graduated, did a postgraduate degree in Physical Medicine and Rehabilitation, which I practice, and 3 years ago I decided to return to my piano and give concerts to raise awareness of autism. The idea of ​​life is to try to overcome the infinity of tests or obstacles that it presents us. Be persistent. Be clear about what we want, without forgetting our limitations, but always looking for other solutions that allow us to achieve our goals.

I am an engineer and I want to become a yoga teacher as well :) My name Ghazale and I had the chance to go beyond limits due to the uncommon condition in which I was born. Being born with one hand, I experienced a more challenging but still aspiring life than what others usually would go through. However, up until now, I have managed to take significant steps toward not only self-development but also development in my social, professional and academic life. I am a Ph.D. student at Polytechnique de Montreal. However, I have a great dream of becoming a yoga teacher. I love practicing yoga very much! I wanted to share my story with everyone out there following their dreams and not letting anything stop them. If you would like to support me, this is the link to my gofund me page: https://bit.ly/3bxSiGr

The last year and acceptance of living with Cerebral Palsy It's been almost a year since I shared my story on this global platform. It was the beginning of the process of self-acceptance. At the time, self-love wasn't part of this process. Until last year I thought I would never be able to be loved by someone other than my family. I threw the blame at Cerebral Palsy for my lack of self-esteem and by an issue of the non-inclusive society to which we are inserted. But it didn't take long to realize that I was enough. Communities for people with Cerebral Palsy and other disabilities was the light that lit up my head and warmed my heart. But I made the mistake of believing that when I accepted myself, the world would accept me. Make no mistake, self-acceptance makes our journey lighter but it doesn't make us unbeatable. This became very clear to me when I came across a situation where I was humiliated and offended in an environment that I saw as a comfort zone. And I thought: If in this environment where everyone knows me, knows my story, I go through this kind of situation, I will have to spend the rest of my life, wherever I go, aware that it can happen and that it will be difficult. But I know that at least, these battles can be peaceful and happy because they are not individual, they are for the entire community. Welcoming Communities These are groups that give me so much support and strength. I'm happy to be a part of this and with open arms to talk to whoever needs to talk. Some of them are: - I Am Possible Community (I'm an Ambassador) - Valerie Lawrence Thriving with CP - Kelly's Choice Inc. - Thoughts on Difference - Nossa Casa.org.br

Bullying and self-confidence Hi, my name is Zeinab. I was born with a birthmark on my forehead called "Hemangioma", and at the age of 6 years old, my parents decided to start surgeries to remove my birthmark. During puberty, some other flaws started to show up. I noticed I have Class II malocclusion (it means the upper teeth are forward further than the lower teeth, it gives the face the appearance of a receding lower jaw, short chin and a convex facial profile). And I have a flat back of the head, but nobody ever notices that because I have thick hair and I always puff my hair or wear "Hijab" to hide it. Because of my head shape, I can't get some hairstyles. All those cases maybe because of a genetic defect. Of course, I was bullied by some people. They never knew how their words hurt me terribly and affected me more than I like to admit. I let it completely brake me and it caused me to hate myself, it caused me to have suicidal thoughts and it affected my previous relationships. After all those moments I finally began to try accepting and loving myself, because nobody will love me as much as I love myself, it has taken me a long time to learn that. I continue trying and working on it. Self-love is the most important thing and I want to share my story, for everyone that was bullied because of perceived imperfections and felt broken. You are not alone!

The first step to overcome a situation is to know where you are and what took you there Hi, my name is Vinicius and I am from Brazil. In 2002 I was diagnosed with bone cancer on my left knee and after 5 years, after some complications and a lot of surgeries, I decided to amputate my leg. During the chemotherapy treatment, I had no health complications, but I lost faith that I would win the battle against cancer. At that time I was a teenager, basketball player, and my dream was to play professionally. But I had to change my plans when the doctor said: "Vinicius, you won't be able to play like a pro for the rest of your life. You will only be able to play for fun. You will need surgery and you will need at least one year, to get back to your regular activities." That speech broke all my expectations and my teenage dream of becoming a professional player. At that age, 14 years old, my entire life revolved around playing basketball. I had to face the consequences of the treatment, but nothing was more painful than my social isolation. The affected cells reduced to zero, but so did my belief in myself. For almost 5 years I had to walk with crutches, battled depression and anxiety, suicide thoughts, got addicted to morphine, only so I could sleep. I did everything possible to keep my mind off the problem. At the end of that 5th year, in 2006, I decided to amputate my leg. The decision was so difficult for me, but I could not see any other option. So I did it. The day I left the hospital I felt lighter. Today, I am a graduate, a professional psychoanalyst. I discovered the meaning behind going through tough situations. The bad things in our lives come to teach us, we learn how to live a full life, no matter the situation. This is my purpose today, to help people to look into their souls and find the answer to their most difficult questions.

My New Reality Like every American, I have been very concerned with the developing Coronavirus ordeal. I know firsthand how a virus can literally disable an individual, a family, a community. In 2014 I was diagnosed with Acute Flaccid Myelitis, a rare polio-like illness caused by the Enterovirus- D68, leaving me paralyzed from the neck down. My whole future was derailed and my independence was stripped away. I literately had to depend on others for everything. I was supposed to go to music school, and here I am not even able to feed myself. Future Reimagined I had to reimagine my future. Yes, there is a lot that I can no longer do but I can’t keep my head in a place of loss. Music is still very much a part of my life. I can no longer play my instruments, but with the use of adaptive technology, I can compose. This past year I composed a piece for a 40 piece symphony orchestra and it premiered in front of a sold-out audience. Later, a film was made about my musical process and story, called “Amazing Grace”. It’s really my family, and community that put the “Amazing” in the title but I’m really honored to be associated with this title. The film shows how the power of community, love, and passion can rally around unfortunate circumstances to turn it into something positive. Going Forward There is so much that is scary and unknown about the coronavirus and its effect on society. However, I think we in the disabled community can help everyone in this regard. We know firsthand how quickly things change and how we have to adapt our lives every day. We know it can be done, and we can help lead the way. The world is fearful of the dark side of the moon. We know the territory and can show our fellow citizens the way. As we turn the corner on this ordeal, let it be us who is holding the light!

Pregnancy In January 2017, I had a miscarriage. When you become pregnant, you don't think of miscarriages, diagnoses, abnormalities, or stillbirth. But then when one of those things happens, you think about it all of the time. My husband and I became pregnant again five months later (May 2017). We were happy, but scared. At our first appointment, we heard the baby's heartbeat, something we never got to hear with our first pregnancy. We had some relief, but we knew we had to get passed the first trimester. At 12-weeks, we decided to do the genetic screening (MaterniT21) to see if what are chances were of possibly miscarry again. We also wanted to know what the gender was. Again, something we never knew with our first pregnancy. About a week later, I got a phone call. The doctor told me she had some bad news. My test came back with a high percentage of the baby possibly having Trisomy 18. I was unfamiliar with this and thought it was similar to Down Syndrome. Unfortunately, it was much worse. Babies with Trisomy 18 rarely make it to birth and if they do, they only live a few days. The doctor told me not to Google it because there is a lot of negative information about the diagnosis. Before she hung up I asked her if she knew the gender, she said it was a girl. I then called my husband and told him our baby was going to die. He immediately came home and we started to Google everything about Trisomy 18, our findings were not hopeful. At our 20-week anatomy scan, our daughter had every soft marker that related to Trisomy 18: fluid on the brain, a heart defect, clubbed feet, clenched hands, measuring small, and a lot of amniotic fluid. Our MFM talked to us about our options of abortion, we declined and he respected our decision. We had two more ultrasounds at 24-weeks and 27-weeks. But at our 27-weeks ultrasound, our MFM couldn't see any distinct soft markers. She was measuring about a week behind but he didn't seem to concern since my husband and I aren't that tall. He thought that maybe our original screening could be a false positive or we could be looking at a different diagnosis. Together, we all decided it was best to do an amniocentesis to get a better idea of what was going on. If the test came back negative, then we had nothing to worry about, but if it came back positive, we wanted all of the doctors and nurses to be prepared. We got the FISH results a few days later, the test was positive for Trisomy 18. For the remainder of our pregnancy, we hoped and prayed it was a false positive. Towards the end of my pregnancy, my doctor asked what we wanted our birth plan to look like. We told her wanted to meet our daughter alive, no matter what. She smiled and said she would try her best to make that happen. Labor & Delivery On February 15th, 2018 I was induced at 5:00 am. I was 1 day shy of being 40 weeks pregnant, but I looked like I was about 45 weeks pregnant due to the amount of amniotic fluid I was carrying. About 7:30 that evening, my doctor broke my water and my daughter's heart rate continually dropped with every contraction. We all decided that a C-section was necessary if we wanted the chance to meet our daughter alive. Harper Abigale Johnston was born that night weighing 4lbs and 11oz and she was 17 inches long. A nurse brought her to me for a few minutes and then she was immediately taken to the NICU. I asked my husband if her hands were clenched since that is a marker for Trisomy 18 and he said yes. Compatible with Life We were told to expect a few weeks with our daughter. We already discussed funeral arrangements and prepared for her death. But Harper had other plans. Harper was born with 3 VSDs, 1 ASD, and a PDA. She also had a TE fistula which was repaired when she was three days old. She had open-heart surgery to repair the holes in her heart on Christmas Eve Day when she was 10 months old. Today, Harper is 2-years-old. She can laugh, roll over, bare weight on her legs, she’s off all medications and requires a g tube to be fed. She loves watching TV and being tipped upside down. She is full of life and has the attitude of a typical toddler. Want to Know More About Harper's Story? www.thejohnstonsblog.com Instagram: @thejohnstonsblog Facebook: @HarperAbigale

Giving up is not an option My name is Zina, I was born in Iraq and at the age of two months old, I contracted polio which caused my left leg to be paralyzed since. I went through surgeries, physical therapy which did not help instead I got a dislocated hip. In my teen years, I got scoliosis, I use a full leg brace and crutches to walk around. Years went by, I finished school got my college degree in a country where they look at people with disability, especially females, as useless. But I proved them wrong! I got my degree in the English language which opened many doors for me in 2003 when the war happened, I tried to help people with disability through my job at NGOs. I worked in the United Nations as a Human Rights officer, also volunteering in a local radio station that empower women (Al-MAhaba radio Station ). You have to understand, it was a dangerous life when we were leaving our houses or our jobs we didn’t know if we are going to make it or not. I came to the United States to get my master’s degree in Broadcast journalism through a scholarship from the UIUC College of Media my scoliosis got worse and I had to do risky surgeries. I had a 120 degrees curve in my spine. I took the risk and did the surgeries all alone without telling my family while I was at school. I knew they would try to convince me not to do it, but I did it and while I was recovering I got a blood clot. I stayed in the USA, got a beautiful loving family of my own, I was faced with another challenge when I knew I was pregnant with Identical twins! It was a high-risk pregnancy, I did it all again without any family next to me other than a friend and my husband. In 2015 when the boys were two and a half years, I was diagnosed with AML Leukemia cancer. I was very angry BUT I fought and fought just because giving up is not an option for me. I overcame cancer, in fact, this is the fifth year for me that I am cancer-free. Life moves on with or without you, I choose life, I choose to be there. You don’t know how strong you are until being strong is your only option! If I can do it, you can do it too. You just need to believe in yourself.

Anna Sarol Hello all, my name is Anna Sarol and I'm 19 years old. Back in 2015, I got injured in gymnastics leaving me paralyzed from the waist down. When I went through this drastic change where I was forced to adapt to a completely new way of living, I learned lessons most people will never endure. Despite this, I continued to search for positivity instead of being blinded by the negative sides. I was told that I had a ninety percent chance of never walking again, and instead of letting that percent control my life, I altered my way of thinking and focused on the ten percent chance that I could. I want to leave an impact by spreading optimism. I do this for individuals with disabilities who have fear in advocating for themselves and letting their disability define what they can do in this world. Since my injury, I’ve been able to drive independently with hand controls, obtain jobs working with kids, co-found a non-profit charity, travel to a third world country to provide aid, and so much more! I plan to travel the world, using my voice and story to become an advocate and an inspirational speaker. This is only a small section of my story, but I do have personal blogs on my Instagram, @AnnaSarol, and my Facebook page, Pray For AnnaBoo, where I share my life lessons and I talk more about traveling with a chair, accessibility, adaptive sports, and the speaking engagements I do!

Nehem's Story At 20 weeks pregnant, we were given the news that our son, Nehemiah (we call him Nehem), had Spina Bifida. Before we were given a full explanation of his diagnosis, we were offered an abortion. That was never an option in our eyes, so we made our way to Vanderbilt Children's Hospital in Nashville, TN. Here, we met Nehem's team of experts in Spina Bifida. We decided that Nehem would be born at Vanderbilt, where he would be given the best care possible. Nehem was born July 27, 2017, and has been overcoming obstacles since. He underwent 3 major surgeries before he was a month old. Nehem has very little feeling from the hips down, but that doesn't stop him from doing all of the things. He army crawls, uses HKAFO's to stand, and uses his wheelchair to get into mischief! Nehem is the most amazing kid and overcomes obstacles every single day...but that doesn't stop him from being the happiest kid ever! Our hopes and prayers are that people will see our story and see that a life with Spina Bifida isn't sad and terrible, but rewarding and empowering!

I'm a Right below-knee amputee and this is my story My name is Lauren Malinowitzer and I'm 37 years old. I'm a Right below-knee amputee and this is my story. "Some of us think holding on makes us strong, but sometimes it is letting go." Hermann Hesse... While reading this quote, I was immediately brought back to the moment the word "Amputation" was spoken. I was sitting on the exam table when the doctor came in. He shook my hand and said, "I looked at your images and it's really not good". I thought to myself "Well that's something I had already known". My father was sitting across from me in the chair. I said, "so what are my options to fix this at this point". He looked at me with a face I'll never forget. Then he said, "I'm sorry to say this but amputation is your choice". I remember so vividly the sound of my own heartbeat. It's as if I heard the exact moment my heart broke. I remember a feeling of intense heat covering my entire body temperature. The feeling of absolute terror and panic was now all I could feel. Amputation meant I'd be permanently disfigured and disabled. I looked across at my father and there he was with tears in his eyes. The Doctor held my hand and said how sorry he was to have to inform me of this. The doctor left the room and the tears were endless. My father made appointments for an array of different specialties. The second, third and fourth opinions went the same way. You'll need to "Amputate" your leg in order to ever walk again or have a quality of life. I have to lose my leg because of a surgery that was wrong. Where is the logic in all of this? How did this happen to me? I couldn't understand for the life of me how this was my option. The weeks began to pass and a decision needed to be made. I obviously was the only one who could make this decision. I began to tell myself that I could do this. That I was strong enough to let go of what was holding me hostage. That even though my heart was breaking at the thought, this was my only chance at life. I scheduled my surgery for September 9th, 2019. Embracing my new stride! I'm coming up on 7 months since my amputation. Not every day is easy. Nothing in my life is the same. I endure phantom pains every single day. Everything requires thought and planning. I'm an amputee now and I'm figuring it all out. Each day I learn a little more. Letting go of my leg has allowed me to find my new stride. It's a different stride but it's mine. God never gives us anything we can't handle! Follow my journey at https://www.facebook.com/pg/crpsamputeewarrior/posts/