A Narrative Approach for Your Health Care Team

By Kate Nicoll

As a social worker, I thought I knew how to navigate health care. But then, I was diagnosed with partial transverse myelitis (TM) in 2002. I went home partially paralyzed from the neck down, a neurogenic bladder and bowel, ambulating only with assistance and a power wheelchair – and a mom to four kids. My saying is: ”I went from giving home care as a hospice social worker to receiving home care in twenty-four hours.” I did not get comprehensive care. I went from doctor to doctor, hospital to hospital, trying to get someone to listen and care. Over the past twenty years, I have met some brilliant, wonderful healthcare professionals. I have also met some pompous, condescending, and dismissive providers. I learned that you need to get your care providers to care about your story, you as a person, your family, your life, and your dreams.

Recently, I had a probable recurrence of spinal cord inflammation, perhaps from a resurgence of my Epstein-Barr from the original injury in 2002 or as a reaction to a recent vaccine. I went to one emergency room, unable to empty my bladder and bowel, and an attending neurologist told me that it was “stress” and emotions. I asked him if he had ever heard of autonomic dysfunction and if he would attribute a blood pressure reading of 197/131 and a total shutdown of my bladder and bowel as stress. I advocated, spoke back, and asked informed questions. I even presented journal articles on my phone. Despite all this, I was dismissed, not admitted, and sent home. One of the specialists I had seen for years told me to be more Zen like her other patient with dysautonomia. “She has it much worse than you. She fell down the stairs.” I retorted “can she go to the bathroom?” A week later, a different specialist told me, “you advocate too strongly, and doctors stop listening.” My response: “I am a social worker with a spinal cord injury and dysautonomia. I must speak up strongly for those not listened to – including myself.”

Because of this, I changed to a completely different hospital system. The first neurologist wondered if there was a “functional overlay,” meaning a somatic component to how I walked and moved. As a clinician, I reiterated that I understood the body-brain connection but pointed out fatigue, dehydration, or a full bladder can impact how I present. I challenged her to consider how my day-to-day life is, living with the anxiety and fear of incontinence, retention, the decline of ambulation, overall functional collapse of sympathetic activation, and autonomic overload with stroke-like blood pressures. She was kind and compassionate but stuck to her ground. However, at least there was a discussion and a process to my healthcare story.

Then I struck three gold-mine doctors with different specialties, who started the visit with, “You have a very complicated history, but tell me your story.” All three, on totally different days, listened for two hours. In a few weeks, I had had three doctors who listened more than anyone had since my reoccurrence began in April of this year. One doctor shared, “My mother told me to listen to stories, it is an important part of my culture, and I am here to listen, then help with a plan.” And he has. It has been a bumpy ride. There have been some beautiful and scary moments, and now a functional decline and perhaps complete autonomic failure of my digestive tract that a neurologist had minimized by calling it stress. I have a few tidbits to share: never let a healthcare professional not appreciate and honor your narrative, ask questions and make them care. This is your life, your story, and your body living with a rare disease. Make them take notice.

Our “In Their Own Words” blog posts represent the views of the author of the blog post and do not necessarily represent the views of SRNA.

In Conversation: A Parent Perspective on AFM

July is Acute Flaccid Myelitis (AFM) Awareness Month. Throughout the month, we invite you to learn and share about AFM so that others will know about this rare neuroimmune condition. We recently connected with Gretchen Trimble, a parent whose daughter has AFM, read below to learn more about her story.

What is your connection to AFM?

Our daughter, Opal Rose, was diagnosed with AFM at 4 months old in March 2019. The diagnosis changed our lives. We had never heard of AFM prior to her diagnosis, and it has been a learning experience since that day. Each season with AFM presents new challenges and things to consider. Three and a half years post diagnosis, and it continues to be a learning experience.

What has been difficult about your experience with AFM?

Trying to understand a diagnosis we had never heard of before and coming to terms with how much this diagnosis has affected and will impact our daughter’s life (and family’s). Watching our daughter suffer in the beginning and, for a while, fight for her life was excruciating. Though Opal has recovered well, she still faces extreme mobility issues because of AFM. As her mom, watching her encounter limitations, like not being able to play on the playground or run and play outside, can be heart-wrenching.

What have you learned about yourself throughout this process?

I’ve learned I’m a lot stronger and more capable than I gave myself credit for. Initially, AFM was life-threatening for our (at the time) four-month daughter. In the past three years since diagnosis, I have felt like a nurse, therapist, researcher, insurance specialist, and most importantly, my daughter’s number one advocate. In our most weary moments, giving up has never been an option. We just keep going forward in the best interest of our daughter.

Who has supported you on this AFM journey?

So many people have supported us, encouraged us, and loved us on this very difficult journey. Grandma, aunt, and other precious family members; our wonderful church family; and so many people from our community. We’ve also had so much support and love from strangers across the country (and world) who have taken an interest in our daughter and her journey. This has been a beautiful part of a very difficult journey.

What challenges have you faced throughout your journey with AFM?

There have been so many challenges of varying degrees. Because AFM is so rare and not known, there have been many challenges related to getting insurance approvals, needing to jump extra hurdles with letters of medical necessity, routine assessments, and more. We have had to share her journey often with doctors, therapists, insurance companies, and others to get her the proper care and resources she needs. Also, one of our challenges, as she has gotten bigger, is how to help her integrate into life with peers and others in different environments. Initially, with a tracheostomy, caretaking itself was a huge challenge – demanding and tiring. And trying to help her brother and sister learn how to have conversations with their peers and others about their sister’s diagnosis and how it has impacted their sister’s life and abilities has been a challenging process.

Is there anything that encourages you?

How God has used the love, prayers, and support of so many people to encourage us on this journey. Our hearts have been forever changed by the kindness and generosity of people, both known and strangers. In a very trying season in life, I know we would not have fared nearly as well without this kind of community and support. And most importantly, we are encouraged by the improvements she continues to make, no matter how big or small. We have learned to celebrate so many things we used to take for granted. We now count our blessings in an entirely new (and so much more humbling) way.

Opal Rose smiling at camera

We are grateful to Gretchen and her family for sharing a small part of their story of AFM with us. If you would like to share your story, consider adding a video to our This Is Me campaign or writing a submission for the SRNA Blog.

Our “In Their Own Words” blog posts represent the views of the author of the blog post and do not necessarily represent the views of SRNA.

My TM Story: Mike Hoffman

By Mike Hoffman

On April 9th, 2017, I was told I had transverse myelitis (TM). Like many people, I had no idea what this meant, so I thought, “Ok, when I get home, I’m going to Google this thing.” 

Well, I didn’t get to go home. Instead, I got to lie in a hospital bed for the next four days on a solumedrol drip while simultaneously getting tested for every disease known to mankind. At one point, the nurse said to me, “Now you know what a pin cushion feels like!” She wasn’t lying. My arm was so bruised and puffy from the needles that it looked awful. However, I was not worried about how it looked. I was more concerned with how it felt. Because I felt nothing. For some strange reason, all of the sensation in my arms, hands, and legs had disappeared. While I had full range of motion, the feeling was gone. The best way for me to describe the feeling is to think about both arms and legs being asleep, like when you wake up in an awkward position. 

For the next few days, there was a constant parade of doctors and nurses poking, prodding, and asking questions. The worst part was when nobody was around because I realized I was in a place very few people understood. So, in the middle of the night, I finally got a chance to Google “transverse myelitis.” Thank God, it led me to SRNA (formerly the Transverse Myelitis Association). The resources on this site helped me know I wasn’t alone and, more importantly, that I was going to be ok.

Mike and his wife Christy standing and smiling at the camera

The tests continued for many weeks, as did the concern. SRNA was always there to provide comfort. Eventually, I would be diagnosed with an atypical form of multiple sclerosis. Five years later, I’m still here and full of life. My awesome wife Christy is my everything, and I love this picture of us taken at Christmas. She is beside me, always, allowing me to lean on her for support. I still can’t feel much in my arms and legs. I still feel like a pin cushion every now and then due to the semi-annual infusions of Rituximab and the constant testing and monitoring. But I’m smiling because I am part of an unbelievable community called SRNA, and I know, no matter what, I’m going to be ok. On behalf of my amazing wife, my four incredible children, and our two dogs: thank you for all you have done for us.

Our “In Their Own Words” blog posts represent the views of the author of the blog post and do not necessarily represent the views of SRNA.

Daniel’s Story: A Mother’s Perspective on TM

By Balsam Ahmad

I will never forget the day Daniel’s life turned upside down. On the morning of the 27th of December, 2020, Daniel played a game of chess with me and his brother before going to his room. Ten minutes later, we heard him screaming. I went up to find him in agony and pain. Within an hour, Daniel lost his ability to stand or walk. It was the perfect storm. We were in shock as to the suddenness of it and how quickly the deterioration happened. We took him to the emergency department, where he was admitted to the neurology ward at the Great North Children’s Hospital (GNCH), located in Newcastle upon Tyne, England, and later to the pediatric intensive care unit (PICU), where he stayed for a few days. Daniel was in GNCH for over six months before transferring to St. Francis Ward at the National Spinal Injuries Center at Stoke Mandeville Hospital, where he stayed for another month. Daniel was diagnosed with relapsing transverse myelitis (TM).

The period after Daniel was discharged home from the hospital was challenging. Many adaptations were needed in the house to allow Daniel to live his life somewhat independently. For me as a mother, this period was the hardest. I felt that I was left on my own. There was no one to guide me through the maze of services that would be needed to help meet Daniel’s needs. It was a new normal, and I did not know what I did not know. I sought support from charities like the Backup Trust and TM Support Groups like the TM Society and SRNA. Becoming a member early on in Daniel’s illness helped so much. I accessed the latest information on diagnosis, treatment, and therapy, which enabled me to ask the healthcare team looking after Daniel the right questions. Between the 8th-10 October, I attended the 2021 RNDS Virtual Conference, which I found extremely helpful and allowed me and Daniel to connect to other members of the TM community. We still communicate with a few of these people. 

Daniel has had many setbacks since his discharge from the hospital and rehabilitation in July 2021. The first was at the end of August when he lost gains in the mobility he made after being released from the hospital and the ability to stand and take a few steps. He has also had two further periods of hospitalizations, one for a week for a urinary tract infection and the second a three-week hospitalization with COVID19 while abroad on holiday. Sadly, the irony of fate was that Daniel was in PICU on the same days in 2020 as in 2021. His fourth hospitalization within a year was by far the hardest for him. It seemed as if it was the last straw. He lost trust in his body. It gave up on him again.

Daniel on a wheelchair and his mom next to him smiling at the camera

Despite all these setbacks, Daniel continued to surprise everyone with his resilience, drive, and selflessness, thinking of others despite all he had been through. Upon discharge from the hospital, he decided to fundraise for the Newcastle Hospitals Charity and Newcastle United Foundation, a charity supported by Newcastle United Football Club, to support carers as well as sick children in hospital by walking steps (and later, when he could not walk, by self-propelling his wheelchair). He raised just short of 6000 pounds to both charities. He used the opportunity to raise awareness about his illness on his fundraising pages: Just Giving and GoFundMe

Daniel is a passionate musician and songwriter. He wrote many rap songs and received support from the Charity Youth Music and Skimstone Arts to record three songs in a music studio on discharge from the hospital. He received support and encouragement from TM support groups upon sharing his songs. Many mentioned how much they identified with his words. His first song, “Day by Day,” tells his story while in the hospital and his second, “Twice,” is the story of his TM relapse in May 2021.

Daniel has always been a keen athlete. He refuses that his illness and disability stop him from pursuing his sports ambitions. While in the hospital, he engaged well with sports and games provided by Newcastle United Foundation. Now, Daniel plays in a wheelchair rugby team and has ambitions to train in wheelchair racing. On the 9th of November, Newcastle United Foundation presented him with a United As One Helen McArdle Young Achiever Award. The video shown on the night of the award raised awareness of Transverse Myelitis. More recently, Daniel won the Outstanding Bravery Award in the Northern Children of Courage Awards (based in the North East of England) organized by St James’s Place Charitable Foundation to celebrate the achievements of children, young people, and their families and care teams.

TM can be a brutal illness, and Daniel has had it really tough. The uncertainty in the prognosis and not knowing what has caused it makes it a lot harder to bear. It is a lonely journey. There is a lack of understanding and awareness about this illness. Many mistakenly think it is all about mobility and that Daniel, similar to someone with a broken leg, will one day soon recover fully and walk normally. We really hope this will be the case, but we do not know. Sadly, there are many invisible signs of the illness that make life truly challenging. We live on the hope that one day there will be a breakthrough in research, and a treatment that fully cures people with transverse myelitis will become available.

Our “In Their Own Words” blog posts represent the views of the author of the blog post and do not necessarily represent the views of SRNA.

Learning to Deal With Grief After Losing a Loved One to ADEM

By Chris Lopardi

Grief can often make you feel as if you are drowning in the ocean. I felt that way in May of 2020 after I lost my 7-year-old son, Mason, to acute disseminated encephalomyelitis (ADEM). At first, it feels like you are on this tiny raft in the middle of the ocean, and you are suddenly hit by a hurricane. There is sadness, tears, anger, regret, and worst of all, no hope for the future. We were nervous when we first learned the symptoms Mason was experiencing were caused by ADEM, but we had hope that he would get through it and life would go on like many other illnesses children get. A few days after Mason’s diagnosis, we learned that he wasn’t improving, and by day three he lost all brain functions. At that moment, life as I knew it was over. The loss of a child brings so much pain and sadness, it can bring you to the brink of madness. Nothing made sense and moving forward seemed impossible. Two years later, I’m here to tell you that moving forward is possible, but it takes time, and it is still difficult.

After Mason went to heaven, which is how we like to say it in our house, it was like our family had to start all over again. You have no idea how much a person fits into the puzzle of your life until that piece is missing forever. The struggles of dealing with my own grief, my wife dealing with her grief, and my other children dealing with theirs brought our family to the edge of disaster. As we struggled to keep our family together and learn our new life without Mason, the hurricane felt just as strong as the day my wife and I held Mason in our arms as he went to heaven. 

 So how did I make the jump to start moving forward? This is going to be different for everyone dealing with grief.  First and foremost, I knew that my boy wouldn’t want me to live the rest of my life in complete misery. I knew I was going to do something positive from the worst thing ever in my life. My wife and I decided to start a nonprofit in Mason’s honor. I was always a person who loved to run, and Mason did as well. I started running after Mason passed, and I would dedicate each run to his honor by posting it on social media with a picture of a memory. That is how the Miles for Mason Memorial Foundation got its start. The foundation is still in the early stages, but many of the legal documents are completed. Now, we are just waiting for federal approval. Our goal is to make ADEM awareness and studies as important as Cancer awareness and studies. We, of course, have a long way to go, but we want to prevent ADEM from hurting others in the future.

There is so much more that can be said about grief and loss, but there can be a light to move forward. I will never stop being sad about losing Mason, nor will I ever feel the same as I did before. I have three other children who need me. I cannot live my life in complete sadness forever, nor do I want to. They say time heals all wounds, and while I think this is a wound that will never heal, I can say that time dulls the pain. I sought help from mental health experts, made positive goals for the future, and reprioritized life in general. I miss my boy, and I hope he is proud of what we are doing for him in his honor. Hopefully, the Miles for Mason Memorial Foundation and SRNA can work together to bring an end to the difficulties and sadness ADEM brings to this world.

My ADEM Story – Prerna Narang

Picture of Prerna Narang sitting in strawberry farm looking off somewhere

I woke up at around 8 am on 4 September 2020 and noticed my entire body was covered in rashes. It wasn’t painful, but it felt very itchy, and after using oil, the rashes were gone after a couple of hours. I went to see my doctor later that day, and they advised it was probably allergies. The following couple of days were pretty normal, but when I woke up on 7 September I felt very dizzy. I made my way to the bathroom but almost fell as soon as I reached it. I still had a little energy left and got back to my room. Thankfully, my partner decided to work from home that day and I told him what was happening. He went to get me an energy drink and something to eat because we thought I was probably just fatigued. I remember that while he was gone I couldn’t move. I thought, “I’ll call him,” but I couldn’t even grab my cell phone right next to me. He returned home and I ate a protein bar, hoping that it would magically make everything better. We waited for a while, but things were not improving. He finally called an ambulance and around 4 pm, I was taken to the hospital.

I remember being in the ambulance but have no memory of what happened the following week. It felt like I had slept for about a week and woke up completely paralyzed. I had lost the ability to speak and couldn’t comprehend things as I usually would. During those seven days, I had a CT scan, a brain MRI, and a lumbar puncture. The neurologists initially suspected that I had a stroke or a panic attack.  I had a second MRI on 17 September I learned that I had Acute Disseminated Encephalomyelitis (ADEM). It was very difficult for me to understand what was happening. The doctors said that I had been in contact with a virus, and instead of attacking the virus, my body started attacking my immune system, leading to a complete shutdown and inflammation in my brain.

I was on a heavy dose of steroids when I was first admitted, but I didn’t improve much. Afterward, I was told by the nurses and my partner that for those seven days, all I would do is scream, cry, and sleep, which thankfully I have no memory of. I responded well after receiving two days of intravenous immunoglobulin (IVIG). I began to start talking again, but my speech was still very slurred. I also received six sessions of plasma exchange which thankfully worked in my favor. When I received my first session, I noticed slight movements in my left arm. It was a very slow and painful process. By my sixth session, I could feed myself with my left hand, pick up a glass of water and make calls to my family. It may not seem like a very big deal to some people, but to someone who gained consciousness after a week to find out they’re paralyzed from the neck down, it felt like a ray of hope.

While I was in the hospital, a distant relative who lived here in New Zealand would often visit me, check with the nurses, and let my family know how I was doing. My partner was constantly in touch with my family, as they don’t live in New Zealand and couldn’t travel due to Covid-19 restrictions. They would go to the temple every day to pray for my well-being.

Prerna Narang working with physiotherapist

I worked with a physiotherapist and an occupational therapist pretty much every day to get my strength back. I remember the first time I tried to do some arm exercises, I failed miserably. My brain knew I was supposed to lift my arm, but my body wasn’t listening to it. For the first few weeks, I would wake up my partner at least five times a night. Sometimes it would be to rub my eyes, scratch my nose, or I was thirsty, or sometimes to get a blanket cause I was feeling too cold or to get off the blanket because suddenly I would start feeling hot.

I spent 43 days in the acute ward at Auckland City Hospital before I was finally transferred to rehab to focus on some physiotherapy for 10 days. I graduated from using a wheelchair to a walking frame. I was getting very homesick by this time and asked to be discharged, and I came back home on crutches. I was in the hospital for a total of 53 days. The longest 53 days of my life which I will never forget. I received outpatient rehab for three months, where I focused on getting back to my normal life.

My employer has been extremely supportive during this time. They understood my situation and not even once was I concerned about job security. I can’t imagine having to recover while also being stressed about paying bills. I resumed working part-time in December 2020 and now I’m back to working full-time. I work from home for about three days a week and the rest in the office.

I am truly thankful to the doctors and nurses that were there for me and took care of me as my family would have. Anytime I had any improvement, the nurses would be so happy, and we would celebrate every little accomplishment. They were extremely patient and calm, encouraged me to do things, and always believed in me.

Prerna Narang standing happily with partner

I am extremely grateful for my amazing partner. He stayed with me for over a month when I was in the hospital. He kept me going and believed in me even when I was ready to give up. I would see psychologists in the hospital, and they were always concerned about my mental health and if I was having any suicidal thoughts, but my partner, Arjun, always kept me going. He would make plans about traveling, date nights, or little things like watching a movie at home. Because of that I had an extremely positive attitude towards things and was always looking forward to coming home, recovering, and hopefully having somewhat of a normal life.

I read somewhere that hope is a passion for what is possible, and truly I live by it. My life is slowly getting back to normal. I stopped using crutches in December 2021 and have been consulting with a personal trainer. I work out around 3-4 days a week and have been getting my strength back.

I didn’t take any pictures when I was in the hospital because I hated being there. I never wanted to keep any memory of the things that I had to go through. I feel differently now. ADEM has given me a new perspective on life. I am truly grateful for so many things. My one piece of advice to someone who’s been diagnosed with ADEM is to be kind to yourself. It is going to take time but there is light at the end of the tunnel.

Perspectives on Being Newly Diagnosed

By GG deFiebre, SRNA’s Director of Research and Programs

I was diagnosed with transverse myelitis over 12 years ago, and if you had told me while I was in my hospital bed that a decade in the future, a significant and meaningful part of my job would involve speaking with people who are newly diagnosed with transverse myelitis or related conditions, I would’ve laughed at you. I probably would’ve cried too. I expected myself to be up and walking around and living the life that I had envisioned for my future self. I didn’t expect to remain a quadriplegic and use a wheelchair for the rest of my life. My rehabilitation hospital tried to set up meetings between me and other people with spinal cord injuries, and I remember being so uncomfortable and uneasy about meeting them. I didn’t identify as disabled. I didn’t identify as a wheelchair user. I didn’t want to be “one of those people.”

Looking back now, I cringe at my internalized ableism and my rejection of other disabled people. I am so sad that I thought those things. I also see others experience these emotions in my interactions with them when they are newly diagnosed. I have had people tell me they’d rather be dead than be in a wheelchair for the rest of their life. Statements like this punch me in the gut. They sting and burn, and for a moment, make me question my worth as a disabled person. But I also understand where they are coming from. I understand why they don’t want this diagnosis. The world isn’t built for disabled people, and we are taught from a young age that our lives are not worth the same as non-disabled people. Even though I understand, it doesn’t make those statements right or okay. I usually push back, holding back how hurt I feel, but also keeping in mind that the place they are in to make those hurtful statements is a raw and painful place, and that I have been in that place too. But I do push back, because I know that my life is worth living, wheelchair or not, disabled or not, and that theirs is too, if that’s how their diagnosis progresses.

One of the more difficult conversations I have on the phone with newly diagnosed people is when I reveal that I was diagnosed with transverse myelitis in 2009, and the person on the phone responds almost excitedly, likely assuming that I recovered fully and that I am “back to normal,” and asks “How are you doing now? Did you recover?”

I basically have a script now that I employ – words I have said over and over again in these situations. I, of course, must tell them the truth – that I didn’t ever regain the ability to walk, that I use a wheelchair, and that I am a quadriplegic. But I also don’t want them to assume this is their trajectory. Many people with TM recover far more than I did. I want to be honest, but not discourage them, but also reiterate my worth as a human being with a disability. Remind them that I and other disabled people still lead meaningful lives even though the world is significantly more challenging to navigate now.

My response typically goes something like this, and some of you reading this may have heard a version of these words while on the phone with me: “Well, I was pretty severely impacted by transverse myelitis. I basically became paralyzed from the chest down in a few hours and didn’t really recover as well as I had expected. Most people recover more than I do. I am still a quadriplegic and use a wheelchair.” They usually follow with something like “Oh… I am so sorry to hear that.” And I respond with something like “There is nothing to apologize for! Even though I may be what some people might consider a ‘worst case scenario,’ I have adapted and have amazing people in my life and in many ways, I am happier than I was before TM. Life may be more challenging in some ways due to the inaccessibility of the world and people’s perceptions, and I certainly have bad days, but overall, I am quite grateful for the life I have.”

In these conversations, I am always trying to find the balance between providing hope, help, and also, reiterating that disabled people like me deserve to exist and be valued. I haven’t fully figured it out yet, but I’ll keep trying.

Our “In Their Own Words” blog posts represent the views of the author of the blog post and do not necessarily represent the views of SRNA.

Inevitable

By Ireland Thomas

Have you ever heard a child scream before? I don’t mean a child’s scream of anger when you fail to meet their demands, or the fearful howl they emit when they realize horrifying creatures, with no uncertainty, lurk beneath the bed.

Think of a real, serious scream, of mourning or of pain, screeched by someone who is filled with suffering. When your mind creates this sound, is it ever a child you hear?

We all often think children are not old enough to understand death or real pain. We shut them down and shut them up, silencing the young with stories of our own experiences we naively assume they have not yet had. We tell ourselves the only pain the young experience is from scraped knees, mosquito bites, and paper cuts. This is not always true.

I am telling you now what a scream is; it is audible agony, complete inner brokenness erupting from a throat. Tell me, do you associate that scream with children like I do?

“What’s wrong, honey? What’s wrong?” my mom shouts. My parents run from their bedroom to mine, awoken by my sudden cries. I am six and I think I must be on fire. I think someone must be putting acid on my back, I hurt so bad, but I don’t see who is hurting me anywhere. I am burning so much from a fire I can’t see and can’t get away from.

I frantically tell my mother that I’m burning, that I’m on fire. She’s asking questions I don’t have answers to, her voice full of concern. The only thing I know is it feels like there is a fire on my back. She reaches out and touches me there—and it hurts, it hurts, it hurts. I cry out louder.

She quickly pulls off my shirt, and Dad is told to run downstairs and grab a flashlight because he doesn’t see anything either, even though she turned the overhead light on as she came in and my room is hued in bright yellow. Dad gets back and hands the flashlight to Mom, and she’s searching my back with the flashlight for the answers I don’t know. Wherever her fingers touch hurts worse. She says she doesn’t see anything, that my skin is not red or swollen, but my mom knows everything so she must know what’s wrong, right?

My mom knows everything–she knows what words mean, where all the things I can’t find are, and she always knows when I do something bad, somehow. She has to know why this is happening because she always knows, so why won’t she answer me?

“Mom, I don’t understand—please, why does it burn so bad? Why do I hurt so bad?” I keep begging her to explain. She pulls her hand back. She tells me she doesn’t know.

I repeat the question because it is the only thing I can ask, and there’s still nothing she can answer. The night is painful and slow. I wind up vomiting – it’s in my mouth – I try to keep it in as I run to the bathroom, but it winds up dripping out all over the hallway floor, and I say I’m sorry because that’s what you’re supposed to do when you make a mess.

I don’t want to be sitting on the bathroom floor and I don’t want to vomit anymore, but my mom says that I should, and that I’ll feel better after, so I do. I don’t have anything left to vomit, so my stomach doesn’t feel as bad, but the fire on my back is still there.

I begin to think there must be some sort of monster inside of me igniting my spine. I can’t see it, but it must be there. There’s no other explanation. But this long night breaks into day, and as suddenly as the monster arrives, it’s just gone. Exhausted, I fall asleep at 7 in the morning.

In the afternoon, we go to our emergency appointment with my pediatrician. The monster doesn’t come with us; it only hurts me at night. Without the pain currently happening and without any visible sign of something wrong, we are sent home without answers.

The pediatrician will not see what she says is not there. My family and I try to move forward and forget the monster exists, but how can I return back to the happy, free version of myself when the monster is also unrestrained?

It’s the second-to-last day of school and I am seven years old when the monster returns in a rage. Four nights of overwhelming pain, vomiting, and crying out into the night go by in a blur of agony and fatigue. I get 1 to 2 hours of sleep a night and try my best to sleep during the day, but the stress of this unseen pain makes it difficult to even calm down enough to rest.

This attack is a war, not just a battle, on both my body and my mind. I begin to hope and pray that this is all just my imagination. I think that if I can convince myself it is not real, it won’t be. Except it is real. I can’t understand it, and I can’t escape it, but it is real.

I don’t know how to explain it. My ideas on what pain could be have been forcibly expanded, but my vocabulary has not. All I know how to convey in words is “it hurts,” and “it burns”—and that’s not enough for my pediatrician or any of the other pediatricians we went to for second opinions. It’s not enough for the Emergency Room (ER) doctors either, even when we went in the middle of the night while the attacks were actively occurring. It’s an invisible, monstrous thing, and no one is listening to my parents who are crying, begging anyone and everyone with any amount of power to look into this. No one is listening to them, and no one is listening to me.

But it’s not the doctors’ fault, right? It’s mine, for being incapable of describing it properly, not because I am lying, but because I am seven. If the pain is not visible and the person in pain has not learned how to properly speak the language of anguish, it isn’t real. Not to the people who were supposed to help. They will not investigate further, will not run any tests because they are sure nothing is wrong.

The monster hides away again after that fourth night. Before it went, however, it did something to me. My mom asks me what I’m doing when I sit on the floor of the supermarket when we go out to grab groceries. The floor is gross, hair and grime no longer blending into carpet or patterned tile when one is so up-close to it. But I can’t walk anymore – I’m too tired and it hurts, I tell her.

The look of disgust that I’d sit on such a dirty surface melts into concern.

She asks me what I mean, and I tell her that my feet burn.

The monster has left its marks in me. My pediatrician won’t believe me about this either.

Without any treatment, things get much worse. After these first attacks, I can no longer stand for over twenty minutes without being in unbearable pain. My capabilities are permanently desecrated by the monster all medical authorities insist does not exist. Only my parents believe me. They continually fight for me, but every battle so far has been lost. We are always sent away, but by far the worst appointment I can remember was with one particular doctor.

“She’s sick—please. Why can’t you listen to me?” my mom begs.

“I am listening,” the doctor forcefully states.

I am at another pediatrics appointment sitting on the paper that always rips when you move even a little. At night, I feel like my body is on fire, but if this doctor can’t see its flames, can’t feel its heat, it’s not happening.

“She’s perfectly healthy,” he continues. He looks right at my mom, exasperated and unwilling to check to see if there could be anything more serious going on. “You’re just obsessed.”

The doctor says I am perfectly healthy, but I have been vomiting all night long. The pain in my back is like acid dripping, but it’s not visible, so it’s not real. Right? Maybe if I tell myself that enough, the pain will go away.

“We’ve been to every other doctor—nobody is looking into this! Why won’t any of you look into this?” My mom has gone about these appointments a million different ways. She has developed the proper logical argument, she has attempted to gain any empathy. But this appointment, this doctor with a stone-face who has openly stated his opinion of her as a mother, breaks her. She cries.

“This concludes our appointment. Please, relax and stop worrying about this. She’s not sick. She’s fine.”

Our desperation for answers has somehow done more harm than good—now no one listens at all. It’s just my parents, and it’s just me. Just me whose spine develops another lesion every day. Just me who can’t walk much at all anymore. Just me who’ll go blind soon. Just me, and I feel so alone.

At age eight, the monster comes again for eight nights. Nothing’s wrong, right? It’s the same outcome as always. The monster isn’t seen, so I am not either. I endure the pain, and this attack stops just as suddenly as it started.

We pretend to just ourselves that we believe the doctors. We try to build a life.

Despite my pain and weakness, I sign up for dance. After the dance recital I had trained all semester for, I walk down this long, beige hallway connecting the stage to backstage. I am suddenly struck by a horrible headache mostly behind my right eye. I tell my mom about it when she picks me up from backstage. I take ibuprofen. It still hurts, and it hurts bad. Although the pain is terrible, I do wind up falling asleep that night.

The next morning, when I wake up, I rub my eyes. I rub my eyes and something’s wrong and I run into my parents’ room.

“Mama, something’s wrong with my eye. It’s like I’m looking underwater. Like an aquarium. And it hurts a bit.” She looks worried.

“Do you think there’s something in it? I’ve gotten sand in my eye before,” she says.

I tell her it feels sharp. She spends over thirty minutes poking and prodding at my eye, trying to see if there’s something in it, an eyelash or something. Nothing is found. It’s a Sunday, so no eye doctors are open.

The next day, we head in to see the ophthalmologist. He sees that something’s wrong with the eye—the optic nerve is swollen, but says there’s nothing we can do to reverse or prevent further damage. He suggests it’s a tumor or multiple sclerosis. He orders an MRI.

We go home, and my mom is scanning the web for answers. She discovers that it should be treated with steroids—but when we call that same day, he says he won’t admit us to the hospital. That steroids are just a temporary fix. The monster has suddenly gone from invisible to inevitable.

The MRI is incredibly stressful, the loud buzzing and whirring of the machine as it takes images all but deafening. When we get the results back from the MRI, against the ophthalmologist’s opinion, we go straight to the ER.

Finally, we are taken seriously. But by this point, it’s too late. My right eye is permanently gone because if steroids aren’t administered within 48 hours of the loss of function, the effect on the damage is minimal at best. If the ophthalmologist would have admitted us, it is incredibly likely I would still be able to see.

It is so horrible that things have happened as they did. It is so horrible that in a single night, I am suddenly blind. Just in one eye, but that’s one eye too many. And although this is so horrible, going blind is the first time we are ever believed. This damage is our evidence. Our salvation.

Once we are taken seriously, it could be a dozen different diagnoses. We search for an answer. Bloodwork, another MRI, and a spinal tap are all conducted. It’s not multiple sclerosis or a tumor. The MRI does show lesions on the spine, damage to the optic nerves, and black hole lesions in the brain. We are sent home for now.

The bloodwork comes back at last, and then our doctor knows what it is. Although we all walk into that appointment, the doctor immediately sends me out into the hall. I sit behind the desk in the nurse’s station and the nurse tells me to color, handing me crayons and paper. She doesn’t say another word to me. Minutes pass, and the door opens, and my mother is crying but is trying not to let me see it. We all leave, and I don’t know what I have until we get in the car and then the monster has a name—Devic’s disease, or neuromyelitis optica spectrum disorder (NMOSD). It is an incredibly rare autoimmune disease affecting the spine, optic nerves, and in some patients, the brain. At the time, we are told it is about one in a million in adults and around one in ten million in kids.

The pain I’ve been experiencing has been from my own body attacking itself, eating away at my nerves’ outer coating and creating wounds inside of me called lesions. My fighter cells only know to eradicate what’s not an ally, and it can no longer differentiate that I’m not an enemy. The optic nerve in my right eye is pale and mostly dead. My brain has numerous lesions, and the ones on my brain stem are what was causing me to frequently vomit. The “extensive” lesions, as my doctor calls them, cover numerous sections of my spinal cord.

Time goes on. My mother searches the web for any information on this rare illness. Looking it up yields seven results total, one of which is a now-outdated research study of 88 patients with NMOSD, of which 24 died in the first five years. This information on the outlook of the illness haunts my mother.

There is no cure for NMOSD. Instead, I am upkept, like the maintenance of a car, burned with chemo after chemo, treatment after treatment. We have to keep pushing down my immune system to nothing because otherwise it will go on the attack again. Somehow, it keeps attacking anyway. We catch most of these breakthrough attacks within 24 hours and completely reverse the damage.

During one of these attacks, we head to the ER. Upon hearing my diagnosis, rather than treat me with steroids to stop the inflammation, the ER doctor tells my parents there’s no point. It’s inevitable that I will become paralyzed or blind. Why continue to fight it when that’s the case?

“Are we really putting Ireland through all these traumatic treatments for nothing?” my mother posts on my CaringBridge page.

Despite this doubt, we go elsewhere for treatment and fully reverse the new damage.

I become more stable. We go from chemo once every 3 months to once every 6 months after the attacks seem to stop, and today is just another treatment day. The nurse comes in, retrieving a small butterfly needle. She takes the plastic tip off. I watch as the metal slides underneath my skin. The blood shoots from my vein, sometimes coating a pillow or blanket, sometimes caught by a washcloth before getting that far. I always watch when they put the IV in; it hurts more when I do not look because fear is more painful than such a small pain could ever be. They flush a syringe of saline through. A metallic taste is in the back of my throat, I choke it down, just as I do any emotion while a nurse is present. Can’t have them think I’m weak, or anything. Next, they hook up the chemo. It begins its slow burn, pushing poison through me. It tastes just as wrong. If the pump rate gets too high, we slow it down. I know when it is too high because I can’t help but begin to cry. It feels like burning, like necrosis and decay crawling and scraping itself up my arm. Every thirty minutes, the blood pressure cuff annoyingly tightens. I went to the bathroom twice, at the two- and four-hour mark. Unplugging my IV pole from the electrical outlet and hobbling down the hall with a parent in tow is the norm now. I’m already growing weaker, my body rebelling against me, but the full effects are seen at the five-hour mark. At this point, the poison has run its course. I attempt to sit up but feel as though I am a ragdoll. My right arm retains basic function; the left arm, the one with the IV in, feels raw. The IV is removed and then we remove ourselves to eat something then drive home. I will take my painkiller and sleep. I know this pattern now—it is always the same.

Knowing there is not yet a cure for NMOSD and that things often only go downhill, I do sometimes think about what will happen next. I’m turning nine, ten, eleven, twelve, thinking about paralysis and the possibility of death, but most often, I think of blindness. I think of the people who are just like me but have it worse. I close my left eye, just to see what it would be like to not be able to fully use either one of my eyes. I attempt to maneuver through my house, torturing myself with the fear. I’ve become obsessed with the monster.

At thirteen, fourteen, fifteen, people say I made the right decision being a writer. If I were to lose the left eye as well, they say I could always utilize text-to-speech. They are trying to console me. I fear loss so much that I don’t allow gain – I avoid friends and family. I don’t exist in any noticeable capacity. I am a ghost, but I start to not want to be. I want to be seen, heard.

I am sixteen, seventeen. I have taken my hurt; I have created life from ashes. There is art in sorrow; not in experiencing it, but in remaking it, molding it. Sorrow recalled can become sorrow rewritten. If I can capture my pain, my turmoil, I can rewrite it. I can somehow make it tolerable. I can silence all the voices in my head by considering pain to be an ally, to be the most powerful artistic tool at my disposal. The truth is, I am just coping. Writing all this out is my only way of defeating the incurable.

I am eighteen, nineteen, still thinking about the monster inside me that hasn’t shown itself in years. I think of my friends and family with rare neuroimmune disorders and of all the people we have lost just this year alone. But I also think of the small smile and thumbs-up in the “infusion day, again…” selfies that litter our support group threads, the comments below reading “you’ve got this” and “stay strong” as well as green heart emojis in the same color as our awareness ribbon. I think of the joy of going home after an infusion day, the joy of regaining my strength just a few days later, the joy of surpassing nonexistent expectations. I think of all the doctors who inadvertently inspired me to become good with words to be able to advocate for myself to people who won’t fight for me. I know now that it is not that six-year-old’s fault for not knowing how to describe her body trying to kill itself.

As time has passed, I have grown more comfortable in creating a life. I used to be so afraid to build a life just to have it be taken from me. But holding myself back like that is not living. I’ve done so well, all things considered. The pain from all the nerve damage has gone from insurmountable to unsurprising to manageable, and I haven’t had an attack resulting in a loss of function in years. But a question still exists that I’ll never fully know the answer to—is the monster still there?

I have accepted now that I won’t know if the monster is still there. But what I do know is that right now, I am alive. It wasn’t this illness taking over my life that was inevitable—it was inevitable that I would develop the perseverance to endure it. It was inevitable that I would live this life, despite it not going the way I’d expected. It is inevitable that I will continue to fight against this.

Our “In Their Own Words” blog posts represent the views of the author of the blog post and do not necessarily represent the views of SRNA.

Community Stories: Hear from Participants of SRNA’s Rare Do Care Walk-Run-N-Roll

It’s not too late to join in on SRNA’s Rare Disease Month by participating in the Rare Do Care Walk-Run-N-Roll (WRNR)! Throughout the month of February, participants have been logging their miles as they walk, run, or roll in their neighborhoods. With a few days left, you can still join in the fun and help make an impact for those living with rare neuroimmune disorders.

We recently asked some of our community members to share about their participation in this virtual event. Below, meet Philip Rive and Dante Fiorenza and find out more about their stories.

Philip Rive

Why did you decide to participate in the Rare Do Care WRNR for Rare Disease Month?

There is no more effective organization than SRNA to better the diagnosis, treatment, recovery and ongoing quality of life for me and other TM and other rare neuroimmune condition survivors.

I work harder and feel better about my recovery and health when I combine service to others with a shared fitness goal.

Did you choose to run, walk, or roll? Why?

I chose to run because I’ve been a serious and social runner for the past 45 years, including Marathons. At the time of my TM diagnosis, I couldn’t run and could barely walk. Four years later, I can run with difficulty up to 6 miles. I’m often running at the edge of my post-TM mental and physical capabilities, at times falling, feeling less than coordinated, and always with some or much pain and fatigue. But the resultant sense of satisfaction, the gratitude for what I still have, and the confidence to get out of bed each day and try to still live my best TM life, makes my running worthwhile, if not essential.

Is there anything you would like to say to those who contributed to your campaign?

As a novice and typically reluctant fundraiser from family and friends, I’m grateful to Lydia Dubose (SRNA’s Volunteer & Community Coordinator) for nudging me to fully sign up. The $400+ donated to my effort to date, is a sign of love and support that strengthens me. It is also a testament to the value of SRNA and the passion I share with it, to make our often invisible pain and redemptive journeys more helpful to those who do, or who will in the future, walk this challenging rare neuroimmune path.

Dante Fiorenza

Picture of Dante Fiorenza standing next to rack of wine bottles

Why did you decide to participate in the Rare Do Care WRNR for Rare Disease Month?

I decided to participate in the Rare Do Care Event to raise money and awareness for rare neuroimmune disorders. I prefer to walk my miles since it’s less strenuous than jogging/running.

Tell us about your diagnosis, and about where you’ve been walking for this WRNR?

I am a member of The Trustees Of Reservations in Massachusetts which protects over 25,000 acres of land and offers hundreds of places to explore, hike and learn. I have been visiting some of these places and logging my walking/hiking miles. In 2015 I was diagnosed with Transverse Myelitis and went through all the necessary testing i.e., spinal tap, MRIs, bloodwork, eye exam. As far as I know, it was a one-episode event, and while my symptoms aren’t extreme, I do suffer from spasms, pain, and lack of sleep. In light of this, I still feel I am fortunate that things aren’t worse.

Is there anything you would like to say to those who contributed to your campaign?

Hopefully by doing these awareness events, other people can get more insight into rare neuroimmune disorders, and I am very thankful to my friends and family who have contributed to the cause!!!

We are extremely grateful for Philip, Dante, and all participants who have come together to support SRNA’s mission and spread awareness of rare diseases. If you would like to participate in SRNA’s Rare Do Care Walk-Run-N-Roll, you can sign up here.

What Happens when an Airline Damages a Wheelchair

By GG deFiebre, PhD

Throughout my 12 years of using a wheelchair since my transverse myelitis diagnosis in 2009, I had heard horror stories of people’s wheelchairs and other devices being irreparably damaged by airlines. I had heard stories of wheelchairs being destroyed, dropped, crushed, and even forgotten by airlines. On average, airlines damage 28 wheelchairs a day in the United States. I remember the first time I traveled after my diagnosis; it was a whole new experience. I didn’t know what an aisle chair was, and I didn’t know that I had to give up my wheelchair before boarding the plane (for more information on what it’s like to travel with a wheelchair, check out this article from The Points Guy). I didn’t realize I couldn’t access the bathroom on the plane, and that airlines were governed by an older law than the 1990 Americans with Disabilities Act (ADA). Unfortunately, unlike all other forms of transportation, airline travel is regulated by The Air Carrier Access Act from 1986. In March, members of Congress introduced the Air Carrier Access Amendments Act of 2021, which would require aircrafts to be redesigned to include safer storage of wheelchairs and to provide better access on the plane.

In May 2021, after being fully vaccinated against COVID-19 and feeling a bit safer about traveling, two of my friends and I decided to travel from New York City via plane to visit our other two friends in Phoenix, Arizona. All five of us use wheelchairs. I was the last to get off the plane, and immediately upon getting in my wheelchair, I realized something was wrong. My wheel was warped and mangled, and I was unable to roll my chair. I had even put signs on my chair about how to properly lift and store it because I am always worried about it surviving a flight, but clearly these signs were ignored. I immediately started crying. I was devastated. At that point, I didn’t know if it was the wheel or the frame that was broken. All I knew was that it was impossible to push my chair. If it had been the frame, I knew it would take months to get a replacement. My frame is built to my exact measurements and not something you can just buy off the shelf. It is an extension of my body. I knew that I would likely have to fight to get the wheel replaced. I’m a quadriplegic and rely on power-assist wheels. I can push very short distances with regular wheels, but my power-assist wheels are really the only way I can get around. I am pretty private about crying – very few people have seen me cry. Upon seeing my broken chair, my sobs were uncontrollable, and I didn’t care that it was in front of the entire flight crew and others. I cried as I was lifted onto an airport wheelchair and my wheelchair was lifted onto a cart so it could be rolled to the baggage area where I could make a claim with the airline. I was defeated and devastated and figured we would have to turn around and go back home. My friend, Bri, managed to capture my sobs on her phone via video, and created a TikTok that then went viral.

I was then offered a standard airport/hospital chair that I cannot self-propel or actually use and was told a company would be in contact with me about getting a replacement. The only reason I was able to leave the airport was that my friend Liv had a spare set of manual wheels that I could use to get to our hotel. At that point, I figured we would be confined to a few blocks from our hotel because of how difficult it was for me to push, but at least I wasn’t in a hospital chair. Then, through Liv’s connections, we were able to find someone in Phoenix who had a spare set of the power-assist wheels that I use. She was kind enough to let me borrow her wheel, even allowing me to fly home with it. When I got home, I reached out to my equipment provider in New York City and asked them if they could provide a set of loaner wheels, which they did. At no point did the airline offer me a solution; everything was through my personal connections and my local vendor. Eventually, after around 11 weeks, I finally got my new set of wheels. During that time, Bri flew again, and 6 weeks after my damaged chair incident, Bri’s wheelchair frame was irreparably damaged by the same airline and had to be replaced. Another airline also irreparably damaged Engracia Figueroa’s wheelchair, and tragically, she passed away in October due to complications from injuries she sustained after her custom wheelchair was destroyed last July. Engracia’s life was cut short by the negligence and disregard airlines have for mobility equipment.

I think there is a lack of understanding of how mobility devices serve as an extension of our bodies. A broken mobility device is not an inconvenience – it is a major life-altering event that disrupts our lives. Wheelchair repairs or getting chairs manufactured takes time, which is why ensuring this does not happen in the first place is incredibly important. Airlines should allow wheelchairs onto the plane to allow people to stay in their chairs during flight. Airlines also need to better train employees on how to handle equipment, give them the proper tools to do this safely, and promptly provide reasonable loaners and expedite the manufacturing process as much as possible. This has been an ongoing problem for years and continues to be a problem for those of us who use wheelchairs and other mobility equipment. I have heard from countless people that getting repairs from airline damage usually takes months, and I’ve even heard people say it took years, and even sometimes people were not able to get a replacement at all. If you are interested in supporting The Air Carrier Access Amendments Act, you can sign a petition here. There is so much more that needs to be done to ensure disabled people can fly without fear of their mobility equipment being destroyed in the process.

Our “In Their Own Words” blog posts represent the views of the author of the blog post and do not necessarily represent the views of SRNA.