Meghan Bayer

@meghan_bayer | contributor
Founder and President of Meg’s Miracles, a South Carolina-based 501(c)3 organization that aims to raise awareness and funds for Stiff Person Syndrome (SPS) Awareness Internationally for the Johns Hopkins SPS Center. Living with Pediatric-Onset SPS and Co. and thriving since 2012.
Meghan Bayer

What It's Like Having a Feeding Tube Due to Stiff Person Syndrome

“Yes, my backpack contains the charger to my body!” Oh, sorry! Was that awkward? I tend to do that. As a feeding tube dependent individual, I have my share of funny, messy, and occasionally mortifying moments. I have “fed the bed” so many times, as many people with feeding tubes do at some point. Nothing like waking up covered head to toe in feeding tube formula. All the “tubie clips” in the world and I always manage to get my slack tubing caught in the car door, around a doorknob, catch it on my wheelchair, get my tubing hopelessly twisted with my IV tubing, or I will plain step on it! The laundry machine always seems to “eat” my favorite tube pads as well… Do you think that they go where socks go to hide? A good conspiracy theory if I say so myself. Pump goes off during my statistics exam in college? “Meg, you are beeping!” my peers exclaimed. Looking back, it is so easy for me to laugh at those awkward moments with a feeding tube as a teenager and young adult. If you took a good hard look at me, you would not even guess there is a pump in my backpack or a hole in my abdomen straight to my stomach! I have not been feeding tube dependent my entire life, and so many people think that feeding tubes are for babies, young children, and the elderly. That is just simply not the case. Adolescents and young adults tend to get “lost” in the feeding tube community though. I have a rare neurological, autoimmune disease called stiff person syndrome (SPS). Silly name, but a very serious disease when it affects the function of organs the way it has compromised my stomach and digestive tract. SPS causes the bottom of my stomach, the pylorus, to spasm. It was one of the first ways my SPS manifested itself and it is not a very common way to have the disease process start. I received my first feeding tube at the age of 18. I will never forget the day I finally decided that I had to join the “Super Tubie Club” and become one of the 300,000 tube-fed individuals in the United States alone. I was laying in the ICU holding room of the Johns Hopkins Emergency Department. My jaw was in spasm to the point that I could not open my mouth. Medications that could only be given to me by mouth were not options and after a year of getting a new feeding tube almost every month, the gastroenterologists started having serious conversations with me about having a surgical feeding tube placed. I was in denial that I was “that sick,” but I quickly realized my body was giving out on me and I needed medical intervention fast. As soon as I said the words giving consent, it triggered a sequence of procedures to get me on the operating room board within 24 hours. I was malnourished and underweight, but some people are overweight and malnourished. Everyone needs sufficient nutrition, no matter their weight. Unfortunately, I believed many of the myths about feeding tubes, and I mean, who really wants to be connected to an ambulatory feeding tube pump 23 hours a day? My nutritional options are limited to what I can get in a container or can. I learned with time that I could still suck on hard candies or a lollipop to get me through all the times where I want to eat, but I know I will not be able to keep it down. Some people with tubes can eat small amounts by mouth. Some supplement with feeds overnight and eat what they can during the day. One thing I wish someone would have warned me about was that I was going to be in a significant amount of pain. Now, pain is all relative, but I have spoken with many others that also have surgical tubes and I think that for the most part, we agree it was at least uncomfortable, which leads me to the next myth, there are many different kinds of feeding tubes. Some are inserted through the nose and down to the stomach and/or small intestine. They are typically only used for short periods of time before a doctor may discuss a surgical tube. Feeding tubes do not always stay in forever. Some people will only need them for a short time and others are lifelong tube-feeders, which means some people live their daily lives outside of the hospital and some only need the tube in a hospital setting. Tube feeding is a life-sustaining therapy, but they are not only given to those that are dying exclusively as end-of-life care. Everyone is different! Many people see feeding tubes as a scary intervention and well, that is one thing doctors do not tell patients. Being tube fed is a lot of work and it does not always “end your symptoms,” but so is being malnourished, failure to thrive (FTT), and being dehydrated, which is what would happen to me. My feeding tube keeps me out of the hospital. I cannot explain the energizing feeling when my body started to receive adequate nutrition. My feeding tubes have saved my life because they allow me to receive adequate nutrition, hydration, and medication that I crush, dissolve in water, and push through the tube. I hope I was able to bust some feeding tube myths from my experience.

Meghan Bayer

Feeding Tube Hacks for the Stiff Person Syndrome Patient

My name is Meghan; also known as the Megalodon. I’m your not-so-typical 25-year-old and I enjoy competing in taekwondo, fishing, camping and adaptive snow skiing. I’m an avid outdoorsman, a third degree black belt in training for my fourth degree and a nine time ATA Martial Arts World Champion. I’m a college graduate working on my master’s degree in social work and I live my life on one speed… breakneck! My custom wheelchair/training partner, Nemo, and I are always looking to have some fun, when I’m not studying, practicing taekwondo, and running my own 501(c)(3) Meg’s Miracles to raise awareness and funds for stiff person syndrome (SFS) research. The name sounds completely ridiculous, but the condition is very serious and can be fatal. In addition to my limbs and torso being involved, it affects my organ function too. It’s really hard on my entire GI tract from my mouth to my colon on out. This is why I use a G-J tube. I can vent and drain the contents of my stomach to vent vomiting, but I can’t eat normally. This is where my J tube comes in handy for crushed medication and water. Hacks for Living the Best Life with a Feeding Tube After nine years of living with a rare variant of stiff person syndrome and years of living with a feeding tube, I have learned (and continue to learn!) both practical and psychological tips to living life with a feeding tube: First, the more you can think of your tube as a tool or a “biohack,” the better! After all, who else has direct access to their stomach or intestines through a feeding tube that can allow them to eat (even when sleeping!), take medications, or release gas/gastric contents from their stomachs? It is a unique superpower if you think about it! For NG and NJ tubes, don’t be afraid to “stylize” the tubes with cool stickers on top of the dressings to hold the tubes to your skin. The more comfortable you are with your tube, the more comfortable others will be, too! The same goes for surgically placed tubes even though most people cannot see them. A cool looking tubie pad can always brighten my day! For the surgically placed tubes, sometimes you just need a break. If your medical team considers it “safe,” don’t be afraid to disconnect those extensions for a few hours to be free of them. It can do wonders for your mental health! As you probably imagined, sparring in martial arts involves contact (often in the form of kicks) to the abdominal area. To best protect my tube and reduce pain from pesky granulation tissue, I wear a tighter fitting white tank top under my uniform to hold my button [a low-profile feeding tube] in place, along with some gauze or a comfortable tubie pad underneath. I also disconnect all my extensions/tubing for the practice or tournament and reconnect afterward. I have to travel a lot for national and international taekwondo tournaments. This often means flying, so I deal with the Transportation Security Authority (TSA) all the time. I use a pump for tube feeding, and have found that it is easiest to stay connected to the pump as I go through security. Tell the TSA agents you have a feeding tube, so when they pat you down, they know what they are feeling. I also tell the agents about my liquid medications and formula in my one bag that is exclusively medical supplies and flies for free in the U.S. That way, there are no surprises when they see a ton of liquid in the bag on the x-ray. Other than the occasional extra swabs for explosives testing, it’s nothing to be afraid of! Packing has always been the biggest challenge for me. I also love being in the water! Whenever I am going to be in a public pool, I generally check to see how often chlorine levels are checked or adjusted. I typically clean my stoma very well after being in the ocean, and I usually don’t swim in lakes or other standing bodies of water because I have found that many aren’t very clean; some quick research online usually confirms that. Because I have a mature stoma now, I usually don’t cover my stoma with a Tegaderm-like plastic barrier, except when I have some proud granulation tissue. Then, I’ll either avoid swimming or cover it up well. Living in the southeastern U.S, it gets hot! I use ice packs to keep my feed bags from getting too warm, as I keep 24 hours worth of feed in my bag at once. Because I had my feeding tube placed in the northeastern U.S, I have also had to deal with the other extreme, and have had cold weather freeze up my Farrell bag and feed bag tubing. I use hand warmers strategically placed around my bags, tubing and extensions to help keep everything flowing smoothly. I have also heard that some people make covers for their extensions to keep them warmer. I haven’t tried this myself, but I hear it works well! I would say as general advice to anyone, advocate for yourself. If it doesn’t look right, sound right, feel right, or deviates from your norm, speak up! This has probably been one of my own personal life-saving pieces of advice. Do you know how many times others have told me I “can’t do something” despite my illnesses or having been deaf since birth? Sometimes, it’s almost daily! And you know what? I don’t care what they think, because whether I think I can, or I don’t think I can, I am 100 percent right. As I’ve said since I was 4 years old, keep your chin up and charge the mountain! Remember, your feeding tube is a tool to help sustain your body! There is nothing I cannot do with a feeding tube that I could not do without it… except for maybe keeping food down, but that’s a story for another day. The sky is the limit here! T.S. Eliot said, “Only those that risk going too far can possibly find out how far they can go!” With a mustard seed of faith, I push my wheelchair up the mountains of life one push at a time! The view from the top is pretty incredible! *Editor’s Note: There is reference to several different kinds of feeding tubes in this article: NJ (nasojejunal) tubes are placed through the nose and pass through the digestive tract to end in the second part of the small intestine (the jejunum); tube feeding administered through an NJ or J (jejunostomy) tube bypasses the stomach, which is important for many people on tube feeding for various reasons. A J tube can be placed directly into the jejunum surgically (surgical-J) or with the help of an endoscope (PEJ). A G-J (gastrostomy-jejunostomy) is placed in the stomach with the tip of the tube ending in the intestines (jejunum); typically the “G” or gastric part can be used for venting the stomach, and the “J” or jejunal part for tube feeding. An NG (nasogastric) tube is placed through the nose and ends in the stomach. Originally published on Meg’s Miracles

Meghan Bayer

My Journey to Accepting My Feeding Tube With Rare Disease

When I was first put on nasojejunal (NJ) tube feedings* by the gastroenterology (GI) team at my local hospital in 2016, I was too weak to object. I had just been diagnosed as failure to thrive and having gastroparesis. Even though I was 19, my parents had signed the consent because I was so out of it. Throughout 2016, 2017, and the majority of 2018, I spent a significant amount of time on a ventilator for everything from influenza, to sepsis, to pneumonia. Eventually, I was diagnosed with a one-in-a-million neuroautoimmune disease, pediatric-onset stiff person syndrome (pSPS), in 2019. It took me over seven years to get diagnosed with this rare disease. Before this, I had been told my problems with my twisting, spasming limbs, spine and organs were “all in my head,” anxiety, phobia, psychogenic illness, conversion disorder, or a functional neurological disorder (FND). The problems that had plagued me from 2012, when I was 16, had doctors in denial! In their minds, I was “just another hysterical female.” Despite my dozens of diagnoses and the constant need for a feeding tube, I am so much more than a medically complex individual, and you and your loved one are, too! I am an avid outdoorsman who enjoys fishing and camping, a third degree black belt working toward my fourth degree, a nine-time ATA Martial Arts Taekwondo World Champion, and skier. I am a college graduate, a Masters of Social Work student, blogger, rare disease researcher, and advocate, as well as founder and president of the second nonprofit to raise awareness and funds for stiff person syndrome research in the United States, Meg’s Miracles. As you might have already guessed, I only have one speed: breakneck! Others tell me this almost daily as I break “speed limits” in stores and while crossing campus in my bright orange wheelchair, affectionately known as “Nemo.” I never mind the joke, though, because I do go fast! Way faster than most manual and even powerchair users I know. Of course, my wheelchair is a big part of my life, so I’ll tell you what “Nemo” does for me. For the last five years, I have been unable to move my legs below my knees voluntarily; my feet, ankles and toes are stuck in a fixed dislocated contracture that spasm non-stop, even during sleep or under general anesthesia. Contrary to popular belief, however, I am not “bound” to Nemo. He is my sidekick, and we take on and see the world together. It might be weird to personify a wheelchair, but it puts children and adults alike at ease. It normalizes medical devices most people wouldn’t consider “normal.” As just about anyone with a rare disease or who cares for someone with a rare disease knows, you may have periods of stability, but that roller coaster ride never ends. I thought I had stability until one day in 2018. On November 7, to be exact, my jaw locked up, my limbs contorted, my eyelids spasmed shut, and it looked like I was having a massive seizure during an infusion that should have been helping me. I wasn’t seizing this time, thankfully, but the doctors were gaining valuable clues on my mysterious condition. Local doctors decided to fly me to a larger hospital. I ended up in the intensive care unit (ICU) again for 32 days and had another three NJ tubes placed, all with incredible difficulty. This time, the GI team approached me and suggested I have a surgical tube placed. They thought a gastrostomy-jejunostomy (G-J) would be a better solution than placing and replacing NJ tubes regularly. I declined both GI doctors thinking they were thinking the same thing only because they worked together. After being released from the hospital, my mom, cousin and I moved to Baltimore, Maryland, to temporarily be closer to my specialist at Johns Hopkins. Not long after arriving there, my NJ tube clogged…as they sometimes do. We went to the emergency department (ED), and they opted to pull the tube since it was hopelessly blocked. The GI team consulted on me in the ED’s unique “ICU Holding Room” and, once again, it was suggested I get a GJ tube. The interventional radiology (IR) department didn’t have any space available to place an emergent NJ tube, so the ED placed a massive 22Fr. nasogastric (NG) tube that was meant to pump someone’s stomach. I never really minded tube placements, but that tube was giant and hung out of my nose like a two-foot coiled elephant trunk. The worst part was, I couldn’t even get my tube feeds! That tube was so heavy, it ended up falling out. About a half hour after the “elephant tube” was placed, I told my mom I wanted to have a G-J placed. To my surprise, she was entirely on board. Since then, I haven’t looked back! I think it was the last step to accepting that my body needed the help of another tool to manage the pediatric-onset stiff person syndrome. I learned that my pylorus at the bottom of my stomach is significantly impacted by the pSPS, which impairs emptying. *Editor’s Note: There is reference to several different kinds of feeding tubes in this article: NJ (nasojejunal) tubes are placed through the nose and pass through the digestive tract to end in the second part of the small intestine (the jejunum); tube feeding administered through an NJ or J (jejunostomy) tube bypasses the stomach, which is important for many people on tube feeding for various reasons. A J tube can be placed directly into the jejunum surgically (surgical-J) or with the help of an endoscope (PEJ). A G-J (gastrostomy-jejunostomy) is placed in the stomach with the tip of the tube ending in the intestines (jejunum); typically the “G” or gastric part can be used for venting the stomach, and the “J” or jejunal part for tube feeding. An NG (nasogastric) tube is placed through the nose and ends in the stomach. This article was originally published on the author’s website, Meg’s Miracles

Meghan Bayer

The Hardest Part of Coping With Pediatric-Onset Stiff Person Syndrome

There is nothing glamorous about a life with stiff person syndrome (SPS) in general, but I have noticed over the years that support is severely lacking for teens and young adults with the condition in support groups. Some have been so traumatized by the loss of quality of life, pain, and disease before diagnosis, they refuse to even talk to other young warriors. Others have resigned themselves to believing they are dying soon, and some are still in that seven-plus-year diagnostic limbo awaiting a diagnosis and/or effective treatment. I can go on Facebook to a support group and find an adult with stiff person syndrome that started after they had a career, a family, their education, and so forth. It would be fair to say that life had “started” for them versus younger people like then-16 year old me. I know I am one of the fortunate ones. I finished high school and graduated college; even though it took five years of hospitalizations, plasma exchange therapy, IVIG/SCIG, a surgical GJ feeding tube, being connected to my backpack 22 hours a day, and taking classes three semesters a year. Kids and adults certainly face different challenges and I wouldn’t argue which is “easier,” but it is easier for me to relate to a younger population. I think one of the hardest parts of raising awareness or talking about the younger version of SPS is that the pediatric-onset pictures and videos, in general, tend to be very “graphic” or “traumatizing” to others; especially those without the disease. I feel like some of the urgency to raise money for SPS research is because these videos are “graphic” and in my case, have made doctors in the corner of my ICU room cry because they didn’t have any power to stop one of my attacks. There was not an ounce of the medication I needed in that major city hospital’s ICU. I want so badly to be able to have these conversations with other younger, 20-something warriors. I know a few, but not many, and most don’t care to discuss the subject. They seem to internalize it better than I do and I know that internalizing stressful situations often leads to PTSD over time. While there is no doubt I have mild situational PTSD from all of this, I’ve learned from a young age to talk about life: the good and the bad, challenges, and of course, the victories along the way. Because I have medical personnel as parents, even now, almost a decade later, they will tell me to my face they don’t believe me or they don’t know what to believe. I meet every diagnostic criteria for the disease in terms of blood tests, cerebrospinal fluid (CSF) tests, electromyography (EMG), and more. All of this because I was tired of being the “sick girl” and just wanted my life to be “normal,” so I told them I was 100% fine and not sick at all. But that couldn’t be further from the truth. I was in a coma for 10 days due to a seizure that lasted over 24 hours. I’d had multiple seizures before then causing me to turn blue. My body still spasmed while unconscious on the ventilator. And my feet and knees are chronically stuck in contractures. So as much as I don’t want to be the “sick one,” especially after nearly a decade, I am. With no good treatment and no cure, living with this diagnosis and its comorbidities is extremely isolating as a young person. Alone, we are extremely rare. Together, we are incredibly powerful! A version of this article was previously published on the author’s website, www.megsmiracles.org.

Meghan Bayer

The Hardest Part of Coping With Pediatric-Onset Stiff Person Syndrome

There is nothing glamorous about a life with stiff person syndrome (SPS) in general, but I have noticed over the years that support is severely lacking for teens and young adults with the condition in support groups. Some have been so traumatized by the loss of quality of life, pain, and disease before diagnosis, they refuse to even talk to other young warriors. Others have resigned themselves to believing they are dying soon, and some are still in that seven-plus-year diagnostic limbo awaiting a diagnosis and/or effective treatment. I can go on Facebook to a support group and find an adult with stiff person syndrome that started after they had a career, a family, their education, and so forth. It would be fair to say that life had “started” for them versus younger people like then-16 year old me. I know I am one of the fortunate ones. I finished high school and graduated college; even though it took five years of hospitalizations, plasma exchange therapy, IVIG/SCIG, a surgical GJ feeding tube, being connected to my backpack 22 hours a day, and taking classes three semesters a year. Kids and adults certainly face different challenges and I wouldn’t argue which is “easier,” but it is easier for me to relate to a younger population. I think one of the hardest parts of raising awareness or talking about the younger version of SPS is that the pediatric-onset pictures and videos, in general, tend to be very “graphic” or “traumatizing” to others; especially those without the disease. I feel like some of the urgency to raise money for SPS research is because these videos are “graphic” and in my case, have made doctors in the corner of my ICU room cry because they didn’t have any power to stop one of my attacks. There was not an ounce of the medication I needed in that major city hospital’s ICU. I want so badly to be able to have these conversations with other younger, 20-something warriors. I know a few, but not many, and most don’t care to discuss the subject. They seem to internalize it better than I do and I know that internalizing stressful situations often leads to PTSD over time. While there is no doubt I have mild situational PTSD from all of this, I’ve learned from a young age to talk about life: the good and the bad, challenges, and of course, the victories along the way. Because I have medical personnel as parents, even now, almost a decade later, they will tell me to my face they don’t believe me or they don’t know what to believe. I meet every diagnostic criteria for the disease in terms of blood tests, cerebrospinal fluid (CSF) tests, electromyography (EMG), and more. All of this because I was tired of being the “sick girl” and just wanted my life to be “normal,” so I told them I was 100% fine and not sick at all. But that couldn’t be further from the truth. I was in a coma for 10 days due to a seizure that lasted over 24 hours. I’d had multiple seizures before then causing me to turn blue. My body still spasmed while unconscious on the ventilator. And my feet and knees are chronically stuck in contractures. So as much as I don’t want to be the “sick one,” especially after nearly a decade, I am. With no good treatment and no cure, living with this diagnosis and its comorbidities is extremely isolating as a young person. Alone, we are extremely rare. Together, we are incredibly powerful! A version of this article was previously published on the author’s website, www.megsmiracles.org.

Meghan Bayer

Why I Travel 600 Miles to Seek Help for Stiff Person Syndrome

They say, “the journey of a thousand miles begins with a single step.” Well, I didn’t know that when I received my first and only dose of the original Gardasil HPV vaccine at just 16 years old on August 24, 2012. I, like so many others, was genetically programmed to internally “self-destruct.” My immune system turned on my brain and spinal cord, causing disease in the multiple sclerosis (MS) family. It is called stiff-person syndrome (SPS), and it typically first affects women between the ages of 30 and 60. You have probably never heard of it, and if you have, you have probably never seen the aggressive, pediatric onset of the disease. I was living in Pittsburgh when the condition started. I had all this access to “world-class medicine,” and yet, this “world-class medicine” is the same medicine that nearly killed me. It would have killed me had it not been for doctors at the Mayo Clinic in Rochester, Minnesota’s genuinely world-class neurological ICU. And yet, in a way, the Mayo Clinic failed me too, as I had gone there originally for my previously undiagnosed pediatric SPS. I was just “too young” to have a “one in a million disease.” One thing was sure. I needed a “one in a million doctor” to treat my “one in a million neuroautoimmune disease.” Over the years, I suffered mercilessly as we traversed all over the country. The Mayo Clinic, the Cleveland Clinic, University Hospitals, the University of Pittsburgh Medical Center, Allegheny Health Network, Rowan University Medical Center… some of these clinics dismissed me as “crazy,” having a “functional neurological disorder (FND),” having anxiety or making it all up for attention. The “craziest” part? The entire time I had elevated glutamic acid decarboxylase 65 (GAD65) not just in my blood, but in my cerebrospinal fluid too! Not too many diagnosed people know or have the antibody in the fluid bathing and surrounding the brain and spinal cord. I also have antibodies against my thyroid, causing Hashimoto’s thyroiditis and against my pancreas, putting me at increased risk for Type 1 diabetes, a common comorbidity of SPS. My autonomic or involuntary nervous system was failing me, and my limbs were contorting in ways you would only expect from the most pain-seeking contortionist in the world. Finally, I found my “one in a million doctor” in the form of a neuroimmunologist at the Johns Hopkins Hospital. He runs the only outpatient SPS center in the world at the time of this publication. He confirmed my diagnosis with simple electromyography (EMG) that showed that I had agonist-antagonist co-contraction, meaning the muscles that moved my limbs back and forth were firing simultaneously, and they were firing continuously. I had already gone through the first-line steroids and most of the muscle relaxers I could possibly be put on. I had been through plasma exchange where two large 18 gauge needles stuck out of the ports in my chest by a solid 1.75-2 inches two to three times a week and “cleaned” my blood of all the “rogue antibodies” out of my body one and a half times. I had suffered through several rounds of intravenous immunoglobin (IVIG) therapy that caused a myriad of painful side effects. It would take some creativity to figure out a game plan for a body and person unable and unwilling to do an experimental FDA trial stem cell transplant. We finally decided to start me on a form of chemotherapy that I receive every six months, high dose medications that I take just about every four hours, and weekly infusions of subcutaneous immunoglobin (SCIG) that I give myself weekly. With this protocol, I am stable. Not healthy and perfect again. Stable. I am thankful for my parents, and I fighting to find this doctor. It is because of him that I don’t have to worry about dying anymore. I can live and thrive! I can fearlessly take on the world because that’s what we were made to do. I know that some 600 miles away, in a place I visit every six months, a doctor won’t stop fighting to give me the best life possible. I have to give my life my best. Even though it is an aggressive and progressive condition, I have hope that someday there will be a more effective treatment to battle my most formidable challenge yet.

Meghan Bayer

Review of 'Deaf U' on Netflix From a Deaf Young Adult

Netflix, you have had some fantastic series come out lately, but I am sorry to say that in my opinion, “Deaf U” is not among them. Deaf culture is such a vibrant and visual culture. However, attending college on a culturally Deaf campus is not all about sex. It is OK to have sex if you’re Deaf! That’s completely normal and human. Partying? Sure, some people get unofficial “degrees” in throwing and attending parties while in college. It’s typical! However, Netflix, I don’t need to tell you that you are a huge worldwide streaming service of around 200 million subscribers. Your reach is enormous, and the service can be used for good, bad or plain ugly. It’s an excellent platform to showcase an incredibly unique culture and potentially make a movie starring a Deaf main character. However, I don’t think a “reality show” like this was the optimal opportunity. I have a hard time even calling this an actual “reality show” and not a joke. The delivery of the content was entirely off. This was such a missed opportunity to talk with many students rather than six to eight and maybe even talk to some other people affiliated with the university, like professors and other staff. I thought I was watching a show about many high schoolers who happened to be culturally deaf. I know that opinions on the show are very mixed, especially right now as the show is practically brand new to the platform, and emotions are a bit raw in both worlds. I think it would have been cool to see Gallaudet University sorority and fraternity life. I get that talking about sorority life would be like talking about partying. Still, sororities and fraternities entail so much more than drinking and partying if one looks at them critically enough. What about the clubs on campus? What are the largest classes like when you are all trying to see someone’s hands from 30 rows back in an auditorium? What’s it like taking notes during lectures when someone moves their hands continuously while you are trying to sign too? All of these might seem “normal” within Deaf culture, but the average hearing individual might find this interesting. I know I would, and I live in a world that is not quite “Deaf,” but I am not a member of the “hearing world” either. I am from a middle world of sorts. My world. The cochlear implant and hearing aid world that millions of deaf and hard of hearing Americans occupy. But I am really happy they highlighted that someone can be deaf, sign and speak. While I am not culturally deaf (as in I interact with the hearing world and hearing friends for the most part), I am very aware of Deaf culture from learning American Sign Language (ASL) from a young age and taking college-level courses on the subject from Deaf people that happened to be professors too. Everyone I have had the chance to interact with regarding the series from both the Deaf and hearing worlds has been disgusted. I don’t want others unfamiliar with the culture to be getting the wrong idea. Some people are worried that people of color haven’t been represented enough and that there was not enough diversity. And I agree — there wasn’t enough diversity! Please show me the dorms. What’s the cafeteria like? The campus of Gallaudet University. Show me more of the deaf world! I understand it is a small world, and it is really easy to be ostracized like the show mentioned. But why? Show me more! Less partying. Less sex. Show me the essential parts of the culture! Putting ASL on the big screen, pretty much for the first time since the release of “Children of a Lesser God,” is a wonderful start, but show us more variety.

Meghan Bayer

How COVID-19 Is Teaching People to Be More Understanding About Masks

There is no doubt that the COVID-19 pandemic has disrupted the world in many serious ways that will define our lives and world for years to come. Now, almost the whole world is recommended, if not required, to wear masks to go to work, to the store, or do just about any “essential task.” Even the Walt Disney Company is offering cloth masks! I certainly never saw this coming — definitely not in my lifetime! But there is a population that can’t afford to not wear a mask every single time they leave their homes, even when there isn’t a virus outbreak. This includes those with lowered immune systems from chemotherapy from cancer or autoimmune diseases, and those with severe allergies, asthma, common variable immunodeficiency (CVID), primary immunodeficiency (PID), mast cell activation syndrome (MCAS), and many other diseases. I am one of those people. In the United States, it is not particularly common to wear masks in public, like it is in many parts of Asia. Aside from the other things that draw unwanted attention to me like my wheelchair, feeding tube and bilateral cochlear implants, my mask is one of the main things that cause people to stare at me. Some people, mostly children, ask why I am wearing a mask. But most stare and never ask, only stay far away and assume I am contagious. All of this was long before COVID-19. People who have never had to wear a mask a day in their lives are finding themselves behind N95s, surgical masks, and handmade cloth masks. People have taken to social media to explain how hot it is under the mask, what an inconvenience it is, how bad it smells, how they can’t breathe as well and more. I have had a number of empathetic people reach out to me and ask how I wear a mask with every outing I take. The truth is for me and many others, it isn’t optional. I live my life behind N95 masks. Unlike N99 masks which are commonly ill-fitting and filter about 99 percent of all viruses and bacteria in the air, the carefully washable and reusable N95 masks filter about 95 percent of the viruses and bacteria in the air. The difference, however, is that these cloth N95 masks come in a variety of sizes, allowing for a tighter seal across the face and the bridge of the nose — important to preventing the spread of and reception of viruses. After hearing about the reduction of common viruses in my life, some of my family and friends have gotten these masks to use during flu season and when traveling by airplane. Others make fun of the need or choice to wear a mask. For some of us, even getting the slightest bout of the common cold, bronchitis, or any other viral or bacterial infection can be the difference between life and death. For me personally, my combination of a chemotherapy agent to combat my stiff person syndrome and other autoimmune diseases combined with any infection or illness means I will need to be put on a ventilator in the ICU often for several days to weeks at a time. But the more I’ve needed a ventilator, the harder doctors and respiratory therapists have found it to get me off the ventilator. Can you imagine how awful needing a machine to breathe for you every time you got even the slightest bit sick would be? This is not something that can be taken lightly. It’s not something I take lightly. For those of us who require masks to live life, our need for understanding will remain long after COVID-19 has permanently scarred this world. For the world’s recovered COVID-19 patients, I hope they will understand the most. We have a responsibility to choose living responsibly and doing our part while not passing it on to others in the months to come. There is no telling how long COVID-19 will batter our world. But even in phase 3 of re-opening the United States, vulnerable individuals are still advised to be “socially distant.” Even when the U.S. returns to what our “new normal” looks like when the country is fully reopened, I know what my life and the lives of those like me will look like. We’ll be armored with our masks just like we’ve been all along. Hopefully, our world will be more non-judgmental and extra compassionate as we move into the next stage of life. We are at a fork in the road. We get to define how future generations perceive those who are different. Those who require things like masks to survive. Let us choose to take the more compassionate path! It’s 2020 and hindsight is 20/20. This will go down in history like the 1918 Spanish Flu and the Black Plague that struck London hundreds of years ago. Let’s choose to change the world for the better! The world always needs more love, and this is our chance. For more on the coronavirus, check out the following stories from our community: 10 Face Masks People With Chronic Illness Recommend How to Make Your Own Hand Sanitizer  Which Face Masks Prevent Against Coronavirus? What You Should Know About Social Distancing During COVID-19  8 Soaps You Can Use to Help Prevent the Spread of Illness

Meghan Bayer

Life With RSD/CRPS: One of the Most Painful Conditions

November is RSD/CRPS Awareness Month. RSD/CRPS goes by many names: reflex sympathetic dystrophy, reflex neurovascular dystophy, complex regional pain syndrome, hand-foot atrophy, Sudeck’s atrophy, amplified musculoskeletal pain syndrome, and causalgia (to name a few common ones). So what is RSD/CRPS? To start, it is the most painful medical condition known to man at a 45/50 on the McGill Pain Scale. Because it is so painful and it is hard to find good doctors to treat this condition, CRPS has a grim nickname: the “suicide disease.” We lose too many RSD/CRPS warriors because the pain is just so unbearable. I personally have lost several friends to the disease, and I’m always fearing who will go next. Many people with RSD/CRPS have been to the deep dark place, where they just want to escape the pain, but not everyone climbs out of it. RSD/CRPS is a disease of the central and autonomic nervous systems. Within the autonomic nervous system, there are two branches: the parasympathetic or “rest-and-digest” mode and the sympathetic or the “fight-or-flight” response. With CRPS, the sympathetic nervous system is inappropriately activated for a prolonged amount of time. While it is more prevalent in women, men can get it as well. CRPS is a diagnosis of exclusion, meaning that doctors have to test for everything else before they can diagnose CRPS. Bone scans, thermograms, EMGs, and QSARTs can be used to help support diagnosis. I was diagnosed off a grossly abnormal QSART. Therefore, it is easily misdiagnosed/undiagnosed. While CRPS may not be life-threatening by itself, several people, including myself have nearly lost their lives to it because of botched procedures, failed therapies, severe allergic reactions, and side effects of medication. There are two kinds of CRPS: type 1 and type 2. Type 1 occurs without a direct injury to a nerve. Many people with type 1 CRPS do not know why their symptoms have started. Type 2 CRPS, formerly known as causalgia, occurs after a direct injury to a nerve causes some degree of damage. Regardless of whether someone had type 1 or type 2, the general course of the disease is similar. Most people experience a burning, stabbing, shocking, gnawing, crushing, throbbing, and cold pain. Every person is different, so these are just a few ways someone with CRPS might describe their pain. Some other symptoms of CRPS include: allodynia: hypersensitivity to light touch hyperalgesia: extreme hypersensitivity to pain changes in hair and nail growth skin color changes skin texture changes temperature changes changes to sweating patterns stiffness in joints temporary paralysis delayed wound healing hypersensitivity to sounds and light irritability edema depression insomnia fatigue dystonia: involuntary muscle spasms causing a fixed contracture of a single extremity or multiple extremities myoclonus/tremors: the quick random  jerking movements muscle atrophy osteopenia/osteoporosis: bone density loss due to reduced blood flow gastrointestinal problems failure to thrive weight gain/loss The CRPS community must band together to get us the cure we so desperately deserve. Remission is possible, but we need a cure. It all starts with awareness. Join us on November 7, 2016 to “Color the World Orange.” Simply wear an article of orange clothing, snap a picture and post it to social media! Until then, “Keep your chin up and charge the mountain!” Please visit the following websites to learn more about RSD/CRPS American RSDHope rsdsa: supporting the CRPS community National Institute of Neurological Disorders and %%mnjlZk6sFP%%: Complex Regional Pain Syndrome Fact Sheet If you or someone you know needs help, visit our suicide prevention resources page. If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255 . We want to hear your story. Become a Mighty contributor here . Stock photo by Wavebreakmedia Ltd

Community Voices

I’ve recently developed the ol’ “can’t catch my breath” symptom of CRPS. Originally, I thought it was the air quality, or dog allergies, but a small voice in my head considered my disease a factor. I went to my doctor, and he said I was getting enough oxygen, and my breathing sounds fine. He said it was probably withdrawal symptoms from lowering my doses (a day or two before the breathing issue started, I had lowered my painkillers by half).

He gave me anti-anxiety pills, and said to not lower my dose without a doctors help. But come to find out, CRPS is commonly related to this breathing...

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