Transverse Myelitis: the inside story

By Glenn Hartz

“It’s an autoimmune storm. Came and went and left its damage at C1. All gone now – except the scar. Might come back. Don’t know . . .”

Every time I got sick in the past I could eventually return to my familiar life.

This was different. I limp. My right arm is palsied and slow.

The inside story of my journey through loss and on to hope is captured in this 6-minute video, Loss and Hope. Inspired by Christopher Reeve’s 1995 60 Minutes interview, it begins in a barren attic of limitations and ends with a lush sunrise of new possibilities.

Think people should hear about this?

A Light in the Darkness

By Tara Duffy

Musical notes sounded in my mind like faint memories, bringing me back to a time when misery was not a close friend. I closed my eyes as a stormy breeze swept over my entire body, leaving small bumps on my skin. I had not felt that sensation in so long, that feeling of being alive and free; I breathed it in, let it fill my soul. I hadn’t been outside in two weeks. I watched as people walked by, completely unaware of the great blessings they had this day, blessings they probably never even thought about. It started to rain and that’s when I heard my dad’s voice next to me. “Ready to go inside?” he said, knowing in his heart I really didn’t want to. I nodded and forced a smile. I felt the wheelchair begin to move beneath me across the gravel, and then we reentered through the front entrance of Boston Children’s Hospital. I couldn’t help but notice the people staring at me as I was pushed along, but I ignored them. That’s when I saw her. She was most likely 6 years old, a bandage around her head, but you could still make out her pale hair. As I was passing, my eyes met hers, so innocent and beautiful. The words that left her lips in that moment changed me forever. “Mommy look, she’s in a wheelchair too.” The eyes of my soul were instantaneously broken wide open. At hearing those words, I was happy to be in that wheelchair. My understanding of reality and what it really means to live became clear. Real life is being in the wheelchair where you are truly part of the suffering of humanity, but it is also the joy that can be found by connecting with others who are also living in sorrow and torment. I realized in this moment all I wanted to do was take away the suffering of that little girl and every other child in that hospital.

My journey from darkness to light began October 7th, 2017. It was a Tuesday morning when I blacked out in my kitchen and went to the ER at St. Joseph’s Hospital for the first time. A week later, I had only gotten continuously worse every day at home, but I ignored the signs that something was wrong because everyone was telling me I had to get better. That following Tuesday I was taken to the ER again, but this time I was sent to Boston Children’s Hospital. My body was completely numb from my chest down and I couldn’t walk. I remember that day clearly because of the nightmare it presents in my subconscious. I had been there for only a few hours when I went to the bathroom, sat down to go and could not rise back to my feet; I fell to my knees, tears streaming involuntarily down my face. I could not move, I had no control anymore, I was helpless. The sense of fear that gripped me then was the most powerful I’ve ever felt before.

I remained at Boston Children’s for two weeks, being moved from the neurology unit to the Intensive Care Unit, and back to the neurology unit where they surgically implanted a central line in my neck for a process they call plasmapheresis. The neurology team led by Doctor Gorman informed me they may never find out the cause of this disease they call acute transverse myelitis, an inflammation of the gray and white matter of the spinal cord. This time of trial has taught me many things: determination, that it’s okay to be angry and sad for a time, but that there is an inner strength and happiness inside you if you just believe it enough, and most importantly that the real meaning in life is forgetting about your own suffering and giving yourself to others.

My name is Tara Duffy. It is now February of 2018, and I am still suffering from the constant and fluctuating spinal pain and my spastic bladder, as well as cathing. I am in my third week of school after being out for almost 4 months, most of my senior year of high school gone in the blink of an eye. I feel alone, distant, unable to connect with any of my previous friends or classmates. My old life was stolen right from under me and living with my new life has challenged me and forced me to grow in ways I never wished to imagine. But in of all of this, a newfound compassion for those who suffer, and a dream to one day become a neurologist myself at Boston Children’s Hospital has arisen in my heart and soul. I hope one day I’ll be able to save the lives of children and be there for them just like my doctors and nurses are here for me.

Think people should hear about this?

9 Things I Learned When I Became a Paraplegic Overnight

By David Markovich

The day started off like any typical Saturday. It was April, so preparing for finals week was on my mind. Little did I know, however, it would be the last normal day of my life for quite some time. My name is David, and when I was 22, I was diagnosed with Transverse Myelitis – a neurological condition that damaged the insulation around my nerves, leaving me unable to walk or do much of anything else. Here’s what it taught me.

  1. Don’t Panic

Turns out that the ability to get out of bed in the morning is something you should never take for granted.

I had been feeling a bit under the weather that week, but I didn’t think much of it. My head was a little sore and I was running a slight fever, but I figured it was just a bug or something that I would fight off in a few days. Or maybe it was just stress from finals week coming up. But then, I awakened in the middle of the night with my back killing me. I knew immediately that something was very wrong, so I made my way down the stairs as the pain started creeping down my legs. I woke up my parents and called 911. As we waited for the ambulance and the pain in my legs intensified, I breathed deeply, and tried to stay calm.

  1. Trust Your Gut

My legs weren’t working, but thankfully, the ambulance was.

After the ambulance arrived, the paramedics told me they were taking me to the small local clinic that I had stopped by a few days earlier, hoping to get something to alleviate my headache and fever. The doctor there had told me it was probably just the flu and there was nothing they could do for me other than prescribe fluids and bedrest. I explained this to the driver, knowing this new development was something serious, but the staff was adamant about taking me back there. By this point, I was feeling even worse, so I persisted, and asked the paramedics to take me to the Cleveland Clinic, which was equipped to treat a wider variety of ailments. After some polite but firm lobbying, the staff relented, and we headed downtown.

  1. Keep Your Loved Ones Near

My girlfriend, Catie, stayed by my side the entire time.

We arrived at the Clinic and I was laid up in a bed where I was poked with more needles than I think I had ever seen before in my life. Still, even though my legs had gone from working normally to totally lifeless in a matter of hours, there’s nothing like being in an emergency room to keep things in perspective. My mom and dad never left my side for more than a few minutes for that entire day, and plenty of close friends and classmates came down to see me and keep me company throughout the week I spent in that bed. I don’t know how I could’ve gotten through that day without them, especially after the doctor came back with news that I never could’ve seen coming just 24 hours earlier.

  1. Keep Yourself Informed, But Don’t Overthink

Knowledge is power, but overthinking can burn you out.

That afternoon, the doctor walked into my little space and closed the curtain behind me with a serious look on his face. He looked me in the eye and gave me the news – I had Transverse Myelitis. “Will I ever walk again?”, I immediately asked. He simply responded, “I don’t know.” For what seemed like forever, silence hung in the air. “Everybody is different, but it could take years to even get feeling back. I just don’t know.” After he left, I immediately grabbed the phone off of my bedside and started googling everything I could. The dozens of sources I read echoed what the doctor had said – some patients get back to functioning normally, some never recover, but most end up somewhere in the middle. The pages of information kept my mind buzzing, but I reminded myself to stay focused on the present. What good would driving myself crazy do, anyway?

  1. Don’t Be Afraid to Laugh When You’re Uncomfortable

Can’t be too careful when it comes to fall risks.

At this point, I had a million thoughts running through my head, mostly centered around what the rest of my life would be like. “Will I be stuck in a bed forever? Will I need to use a wheelchair? How hard will the recovery be?” Eventually, the doctor returned and told me that the first thing I needed was a treatment called plasmapheresis, an artificial type of blood filtration similar to dialysis. After he left, I started chatting with the man lying in the bed next to me. “Welcome aboard. Sure sucks to be here, doesn’t it?”, he said with a smile. We chatted for a while, and he told me about how he was there with his third stroke, cracking jokes the whole time and temporarily taking my mind off of the situation. For a guy who spent about as much time in the hospital as the staff who was treating him, he sure knew how to keep things light.

  1. Progress, No Matter How Slow, Is Worth Working For

Every jump up felt like climbing a mountain, and every successful attempt felt like reaching the peak.

By my fifth day in the hospital, I started feeling a little bit better. I underwent five plasmapheresis treatments, and still had virtually no feeling or movement below my waist, but I was able to maybe – just maybe – wiggle the smallest toe on my right foot. The nurses tried to stand me up using a device sort of like a dentist’s chair. It would be my first attempt at being upright in over 72 hours. Well, that experiment quickly came crashing down – literally, because I immediately blacked out and ended up on the floor. Later that day, after I was safely back in bed, I discovered that one of the few doctors in the world who specialized in treating TM practiced at Johns Hopkins Hospital. The staff at the Clinic thought I was in no condition to travel, let alone six hours to another state. But my first few seconds upright since Saturday night were all I could think about, so I made a few phone calls. Then, two days later, not knowing what lay ahead but determined to get my life back, it was off to Baltimore I went.

  1. Work Hard, And Savor Small Victories

Slowly but surely, I gained my strength back.

After I arrived in Baltimore on Sunday evening, I was placed in the neurology unit of Johns Hopkins. My first night there, I was again awoken by my body – this time, however, because my heart felt like it was beating a million miles per hour. I literally thought I was going to die that night. I started screaming for the hospital staff who transferred me down to the ICU where I was diagnosed with a pulmonary embolism and put on blood thinners. The next morning, I saw the specialist who I came there for. He was upbeat and enthusiastic, looking me right in the eye and saying, “David, three things are going to help you get better: physical therapy, physical therapy, and physical therapy.” He told me that my sessions would be long and difficult. At the end of the first one, I had a little more movement in my foot than I did before. After all I had been through to that point, it was cause to celebrate, even if it didn’t seem like much.

  1. Motivation Goes Both Ways

My physical therapists pushed me hard, and every step forward was a step for them, too.

After three days of intense sessions, I was moved from Johns Hopkins to another nearby hospital for inpatient therapy. For around five to six hours per day, my therapists, Elise and Pat, pushed me as hard as I could go (which, admittedly, at that point, was not very hard). But as hard as they pushed me, I like to think that I pushed them right back too (especially the many times I fell over onto them!). They were so dedicated to helping me walk again that they even worked late to spend extra time with me. As much as I wanted to get better for my own sake, I could see that every bit of progress I made was almost as important to them too.

  1. Enjoy Your Time

Because you never know how short it might be.

After a month of hard work, I was finally able to walk again. I still went to PT three or four days per week, and I spent every other day in the gym, exercising and even playing some basketball. Slowly but surely, I started to get my old body back. And even though I had spent the past two months working as hard as I possibly could to try to walk again, I couldn’t help but think about just how lucky I was. Throughout it all, my friends and family stuck with me, and with a lot of help, I went from the prospect of never walking again to living a healthy, happy life like I used to before that fateful night in April. If that isn’t a sign that life is about what you make it, I really don’t know what is.

This article was originally published on Buzzfeed and can be found here.

Think people should hear about this?

Finding Sports After Transverse Myelitis

By Dalia Rebolledo, age 20

Injury level: T10

Diagnosed with Transverse Myelitis on Sep. 12, 2013

Before TM, I was a normal teenager who was passionate about my education. I was involved in extracurricular activities and volunteered as much as I could. Growing up as the first child in my family to graduate from high school was challenging. I faced many obstacles, including learning a second language and an entirely new culture. But without a doubt, the biggest challenge was becoming paralyzed literally overnight.

During the second week of my junior year of high school, I began to get sick. On the night of September 10th, 2013, I woke up and noticed that I couldn’t move my legs. My mom tried to help me stand up, but I collapsed to the floor immediately. I was rushed to the ER and after two days in the Pediatric Intensive Care Unit, I was diagnosed with Transverse Myelitis, a neurological disease with no cure. The inflammation damaged my spinal cord and I lost mobility from my chest down. After the available treatment, I regained upper body strength, but was wheelchair-bound with little hope to ever regain full mobility. I was in an inpatient rehab clinic for four weeks, where I was taught how to move around in my wheelchair.

The first year was the hardest, as I juggled between therapy, doctor’s appointments, and school. In 2015, I was able to graduate high school with honors and made plans to attend a four-year college to study Business Management. My plans didn’t work out, and I was unable to further my education at that time.

In 2016, I began to get sick again, which seemed to be another TM attack. This time I lost strength in my arms. I was in the hospital for a week, and although there was no damage in my spinal cord, my immune system was overactive which could cause more damage at any time.

In December of 2016, I made plans to start going to REACT, a neurological rehab program. I was not going to let TM take control of my life and was determined to work as much as I could to regain my strength back. Going to REACT once or sometimes twice a week helped me gain my upper body strength back and motivated me to work harder than ever. Now I have full control of my arms, and my balance has increased tremendously. I enjoy doing the workouts and learning how to do new exercises.

I was introduced to the Legacy Project and was lucky enough to participate in their summer group. The Legacy Program is a 12 week/3 times a week high intensity, group training program that combines strength training and sport, at no cost to the participants. Participants are given a unique opportunity to overcome their physical limitations and inspire others to achieve what many view as impossible. The Legacy Project is one of the many programs REACT offers. At the Legacy Project, we don’t only work with our bodies, but also with our minds. They motivate and push us to reach our maximum potential. Today, I can say that I am stronger than ever, not only physically but also emotionally. REACT empowered me and encouraged me to try sports and stay connected with a group of amazing individuals. I currently do wheelchair basketball, and I am thinking of doing hand cycling. I also enjoy playing volleyball and soccer/wheelchair rugby.

REACT has encouraged me to be independent and has given me the strength to go out and do volunteer work again and pursue my education goals. I have accomplished a lot of my goals, but my long-term goal will always be to regain full mobility. In the meantime, I will continue to work with what I have and push myself even further.

Think people should hear about this?

Sharing my TM Story

By Felicia Aronsson

I got transverse myelitis on the 21st of August, 2008 at the age of twelve. 4-8 weeks before I got TM, I had severe pain in my lower back and difficulty getting in and out of the car, bed, etc. I went to my local clinic, but the doctor said that the pain was caused by my trampoline. On the day that I got TM, I was with my mom at a café and suddenly I couldn’t grip the cup I was holding in my hands. Shortly afterwards, we decided to leave and that’s when I couldn’t walk properly. I was tottering and I had to lean on my mom so I didn’t fall.

We got in the car and drove to the nearest children’s hospital. When we got there, my right arm and leg were paralyzed. I think it only took 1-2 hours before I was almost completely paralyzed – I could only move my lower arms up and down. It took a few weeks for the doctors to get the results, and both my parents and I were shocked and didn’t know anything. And like every other person who gets TM, I thought that I was going to be completely restored within 2 years. But that’s not the case if you get an inflammation in the spinal cord that breaks down your myelin sheath.

I was at the children’s hospital for 6-8 weeks before getting to a rehab clinic where I stayed for the next 6 months. When I got back to school and was going into 6th grade, it was a real struggle. I felt completely alone and like an outcast. And it only got harder when my so-called friends from elementary school started bullying me in 7th or 8th grade. This really hurt me, and I was even suicidal for quite a while. Things got a bit better when I started talking to other people with TM. It turned out there were a lot of people with TM in Sweden, which I was really happy about.

Things took a turn for the better when I started high school. I was finally able to start over. Today, I started college and unfortunately became depressed. I’m paralyzed from my chest down. I can only move my wrists, and my fingers are paralyzed. I can’t stand on my feet myself or walk. My legs are spastic. However, I’ve made quite good progress looking back at how paralyzed I was when I first got TM. 9 years later I can say that I’m not mad that this happened to me.

It was the human herpesvirus 6 that caused my TM, and like most cases of this spinal cord injury, the doctors had no clue why this happened.

Finally, I want to say that the best way to get more knowledge of this and share your story is to talk to others in the same situation. It’s also really good to join Facebook groups with other people with TM, as it’s a great way to get in touch with others.

Think people should hear about this?

Starting a Support Group Changed My Life

By Jeremy Bennett, Community Partnerships Manager

Before I became the Community Partnerships Manager for the Transverse Myelitis Association in October, I was a Support Group Leader for Central Ohio. I started a support group because I didn’t know anyone else with transverse myelitis. I was diagnosed with TM in 2012 and, like many, I often felt like I was the only person in the world who understood what it was like to live with a rare neuro-immune disorder. Then I met Sandy and Pauline.

Sandy and Pauline invited me to dinner and I’ll never forget that night. Pauline was the first person I met who had TM. It had taken me five years to come face-to-face with another person like me. I left that restaurant wondering why I hadn’t done something sooner, but determined to connect as many people with TM, ADEM, NMO, ON, and AFM as possible. Now that I have that chance, I’m encouraging our members to help.

My first month working for the TMA included going to Dallas for a Walk-Run-N-Roll event and attending the 2017 Rare Neuro-Immune Disorders Symposium in Columbus, Ohio. I went from knowing no one with transverse myelitis to meeting more than 100 people in less than six months. Of course, that’s not going to be everyone’s experience, but what I can say is that it doesn’t matter if it’s one, five, 20, or 500 people – each interaction is special.

One of my goals for 2018 is to grow our Support Group Network. The TMA has nearly 13,000 members, many of whom are looking to make that first connection. We have active support groups in a few states and countries that are doing tremendous jobs, but there is a need for more. If you are interested in starting a support group in your area, visit our website and fill out a Volunteer Application Form.

To a lot of the world, transverse myelitis doesn’t mean much, but for those who have it, it means the world. Help us provide support to our members by becoming a Support Group Leader today.

For more information, you can contact me at jbennett@myelitis.org.

Think people should hear about this?

Surfing Again

By Tom Flavin

Our daughter, Emily, was 14 when she was admitted to Ronald Reagan UCLA/Mattel Pediatrics ICU for tests.  Her diagnosis: Transverse Myelitis.

It all started approximately two weeks earlier when on a Friday, my daughter babysat two children who had head-chest colds.  We have no way of knowing if this caused her to pick up a cold or virus.  The next day, our daughter competed in a surfing competition in Oceanside, CA.  She could have contracted a cold or virus from the water.   The following day, Emily came down with a head-chest cold.   We kept her home from school on Monday.  She took an over-the-counter cold medicine.  On Tuesday, she went to school and by Wednesday she needed to stay home due to a low fever.

We took her to her pediatrician.  We were advised to watch her and let the cold/virus take its course and to let her doctor know if things got worse.    Late Friday afternoon, Emily complained of an ear ache.  My thought was inner ear infection (perhaps from surfing, but just a guess).   We got over-the-counter medicine and notified her doctor’s office.

On Saturday, the low fever returned.   We gave Emily fever reducing medicine.   Late on Sunday evening, Emily complained of not being able to urinate.   We scheduled an appointment for Monday morning and were advised via the telephone to have Emily bathe in baking soda water.  The nurse over the telephone thought it could be a urinary tract infection.

On Monday, Emily tried to provide a urine sample at her doctor’s office but could not.   The doctor advised us to go to the emergency room.

At Santa Monica UCLA Medical Center, Emily provided a small amount of urine.   We were prescribed an over-the-counter medicine to help reduce pain while urinating.   Emily continued to not be able to urinate.

On Tuesday, we took Emily back to the emergency room in Santa Monica and she was provided a Foley catheter and prescribed antibiotics.    They took the catheter out and we were sent home.

On Wednesday, Emily was still unable to urinate, so I called her pediatrician’s office and requested a referral for a urologist.   Emily’s pediatrician was not available, and the staff needed to get approvals.   Through back and forth calls, they suggested that we take Emily to Ronald Reagan UCLA Medical Center.   We did, and there they catheterized her and advised to continue antibiotics.   The urologist suggested was not available to see Emily in the Emergency Department, so we scheduled an appointment for the next day.

On Thursday morning, Emily complained of being light headed, dizzy and unable to see.   I thought that she may be fainting.   Emily met with a urologist on Thursday and he gave us a choice of urinary tests, i.e. filling up the bladder, taking out catheter or waiting for a later date.   Because of everything that led up to this point we asked Emily what she wanted to do, and she chose to wait until Monday for the test.  This was also suggested by the urologist.

Over the weekend, Emily complained of sensitivity to touch on her arms and shoulders.   She later complained about her one leg being asleep, then the other leg. We thought that it could have been from lying in bed, sitting, etc. which she had started to do more.   On Sunday afternoon, we allowed Emily to visit a friend.  When we went to pick her up at her friend’s home I noticed that she was walking slowly and unsteadily.

On Monday morning, we took her to see a urologist again for the test.   Prior to this, Emily had trouble getting to the car.   I had to hold her, and she moved slowly.   Once at the appointment, I got a wheelchair.   We were advised again to go to the emergency room because the doctor said that it may be more than a urinary issue.

Several doctors in the ER were super helpful and admitted Emily immediately for tests.  She spent twelve days total in the hospital with five days in the ICU, three days in the main hospital, and four days in physical rehabilitation at CHLA.  The doctors initially thought that it would be at least six months before Emily could surf again, if ever.

Prayer, perseverance, family, friends, and great doctors helped us get through the tough reality in the beginning.  Googling Transverse Myelitis and seeking someone, anyone to learn from outside of the doctors was what I did.   During that time, I was hoping to find a story or many stories of positive outcomes.   In the process, I found Coach Karl Turk who is an amazing leader and survivor of Transverse Myelitis.

Coach Karl was written up in a CNN report, so I telephoned him at his place of work and introduced myself and the reason for my call.  I remember telling Coach Karl while choking up that my daughter was diagnosed with TM.  He listened.   Learning more, anything more from someone who survived was what I was seeking for myself and Emily.  Coach Karl and I spoke for about twenty minutes initially.  Since then, I have called him numerous times and spoken about things not related to TM.   Emily has spoken with Coach Karl too.  He calls her sister.

Emily spent approximately three months in outpatient physical therapy and then Emily convinced her doctors and her parents to allow her to surf again.  She has been doing so ever since.   This past summer, Emily competed in three longboard competitions and was the Champion 1st Place in each at the age of 16.  Now 17, she continues to surf competitively and is a senior in high school.   She is in the process of applying to universities to start her college education in the fall of 2018.  She wants to stay close to the ocean for obvious reasons.  She takes a big interest in promoting that we each do our part to keep our cities, beaches, and water clean of pollution.

Think people should hear about this?

Quality of Life

By Maria Cerio

Embraced by the warm hug of the doctor who diagnosed me with transverse myelitis 16 years ago, here I am back at Boston Children’s Hospital on October 9, 2017. It is an odd reunion. He is delighted to see me, but at the same time, my return means something must be wrong. Yet, this visit creates a sense of comfort, a feeling of something familiar, the way home feels, as this is where I was diagnosed in 2001 when I was three years old. I am now 19.

After blood tests, ultrasounds, and neurological exams, I am exhausted. However, I feel mostly lucky. Lucky to be one of the patients who, at the end of the day, gets to see Children’s Hospital in their rearview mirror as they head homeward to sleep in their own bed. I am lucky. I am grateful. But, I am challenged.

The appointments took up the entire day. My mom and I left for Boston in the darkness of the early morning and returned just in time for dinner. On the way home from the hospital, we picked up a cake to celebrate my older sister’s 22nd birthday. I should have mentioned earlier that it was my sister’s birthday. She understood that my mom and I had to spend the majority of her birthday not celebrating with her, but rather, at Children’s. She was used to this, as we have even celebrated Christmas morning at Children’s Hospital. Disability affects the whole family, not just the patient.

The birthday festivities culminated in a viewing of family home movies, a favorite activity. As I sat propped up in my living room chair watching home videos with my mom, dad, and two sisters, it dawned on me. It dawned on me that I have no memory of life before transverse myelitis (TM), life as a child and not a patient, life before paralysis, life as an able-bodied individual. I could not retrieve a single memory. I just stared at the video, watching myself dance with my older sister. It is 1999, I’m not even two, and we are dancing to a 90’s classic–Cher’s “If I could Turn Back Time.” If only I could turn back time and whisper into the toddler’s ear that that would be one of last times she danced so freely.

At first, I was saddened by the thought that my earliest memory was the night of the onset of TM. The memories of hospitals, patient gowns, IVs, catheters, shots, wheelchairs, and physical therapy had somehow overpowered those from before I got sick.

This year, I am a sophomore in college at The George Washington University. I live independently in a dorm, 350 miles away from home. Though I have regained a tremendous amount of my functions, my disability has strained friendships and family relationships, and isolated me in social situations in ways I could not have anticipated. TM has interfered in my life this year, more than it ever has.

When life feels so hard in the moment, and everything in the future presents a challenge, it is easy to succumb to self-pity. But then, I remember that one kind professor who went the extra mile to accommodate my needs, or that one friend who told me she was asked in an interview to talk about someone who inspired her and she chose me, or the young man who saw me struggling to carry my stuff and took it from my hands and brought it to my door. I remind myself that there are good people out there. I am lucky because I am the recipient of kindness.

I would not change my disease or wish it cured. I do not want to be “fixed;” rather, I am just working to improve the quality of life for myself and other individuals with disability. Conversation about disability is the catalyst for awareness, acceptance, and inclusivity.

This month, October, happens to be disability awareness month. But on September 30th and November 1st, this is still my life. It does not just last a month.

So, my message to you, is to go about your day with a little bit of extra kindness–not only during the month of October, but every day. Be that kind professor, that special friend, or that thoughtful stranger. Go about your life with an extra appreciation– do it for yourself, for individuals impacted by disability, for those individuals’ families, for everyone. Live your life not trying to fix, but rather trying to make the best of what you have.

Think people should hear about this?

Fighting for Love

By Carrie-Anne Farnell

I wasn’t raised to be a quitter or to give up, but I’ll be honest, being diagnosed with Transverse Myelitis nearly made me do both. I have been pushed to my limits and then some.

Before my diagnosis, I was working hard in a job I loved, I had a personal trainer, I did classes, I ran with my dad and I practised sparring on the weekends. I was always very active and physically on the go all the time, so as you can imagine, it destroyed me when I woke up one morning with pins and needles in my feet and then slowly over the following weeks watched myself deteriorate and end up in hospital.

I thought physically fighting someone was one of the hardest things you could do, until I had to learn to fight in a completely different way and start to fight something I can’t even see or punch in the face!

Admittedly I wanted to just lay back and let it beat me, because let’s face it, I have no control over it and it has already done massive damage to my body…but…I had one thing going for me, one thing left in my life that Myelitis can never take from me and that is love. The love that not only I have for my son, but the love he has for me. This hit me like a sledgehammer one day and I decided that I have to fight, I have to try to recover as much as I can, I have to do anything and everything to keep going! Even if I never recover properly, I will make sure I get out of my bed in the morning, I will make sure I keep trying, I will make sure that I will keep doing my physio, keep seeing my Cognitive Behavioural Therapist and just keep going.

I still have days when it feels like TM has stolen everything from me, has taken away everything I enjoyed doing, has taken away my normal life and left me with a body that has been damaged, and given me depression, anxiety and a fear of life itself…but I have to force myself to get past these issues, otherwise I find I’m just existing instead of living. I don’t want to just exist and survive, I want to make the most of mine and my son’s life, even if it is restricted, I still have to try. 

I have 3 people in my life that I love more than anything, my son and my parents, and without them I would be lost. The love I have for them and the love that they have for me and show me daily is what motivates me and keeps me level-headed and on the right track. I can honestly say that I wouldn’t be here right now if I didn’t have them and their love.

You can’t be in a fight without getting hit, without being hurt and sometimes even getting knocked down…but the question is whether we can get back up again and take the hits and keep moving and keep fighting. Just remember that every breath we take is a smack in the face to whatever our problems are, by just waking up in the morning and breathing we are showing it and everyone else that we’re not done!

Sure there are going to be days when we’ve had enough, we’re at our limits and we feel completely and utterly broken…but we’re not…take that breath and remind ourselves that it hasn’t won. This applies to a lot of people, not just someone with TM…whatever our problems, issues or hardships are, we have to keep battling through. Never quit, never give up!

I used to fight and spar because I enjoyed it and it kept me fit and healthy, now I’m fighting for love!

Think people should hear about this?

TM Testimony

By Joey Butler

In November of 2016, I was diagnosed with Transverse Myelitis, a neurological condition that caused me to be paralyzed for a week and took several months for me to be functional again. I had to endure inpatient physical therapy, outpatient physical therapy and left the hospital with a list of medications that I may be on for the rest of my life. I had to relearn how to walk and adjust to nerve pain that was constant and increased if I did anything active. Because of these changes in my life and health, I gained more weight and became hopeless that I would ever be able to lose it since I couldn’t exercise without pain. Since then, I fell into a depression and struggled with so many different aspects of life in general.

Then in April of 2017, it all changed. Something clicked and I decided that no more would I allow TM to control my life, no more would I let it slow me down and destroy my family.  So, I decided that it was time to get up and get moving, it was time to get up and lose the weight that I had gained. So, I found a local gym and joined.  Joining a gym with TM is a scary proposition. When you combine the nerve pain, the weakness, and the insecurities of how you walk, all together that equals a large amount of anxiety.  There are so many different reasons for a person with TM to not join a gym, but I decided to look past all that anxiety and get to work.

When I weighed myself in April of 2017 I weighed in at an insane 325 lbs. This was by far the largest number I had ever seen on the scale, which added to the depression and anxiety.  This was the moment that it all changed for me, and sitting back and literally killing myself one cheeseburger at a time was no longer going to be an option.

To anyone who has TM and is thinking about exercise (talk to your doctors first), I highly recommend that you just look past the anxiety and get in and move.  Start small, then build up.  It took me a month or so before I became comfortable with myself enough to start posting pictures of my progress. Quickly after that, people started telling me how inspirational it was. People started telling me how awesome it was to see me in the gym and moving.  That’s when it hit me – if pushing through the nerve pain, if pushing through the exhaustion, if pushing through all of that anxiety will help just one person get up and get moving, then it is all worth it.

Think people should hear about this?