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.

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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!

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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.

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Paralyzed at 15

By Rich Kolasa

I’d been running track the day before. I remember the flame in my lungs at the end of it. The next day was a birthday party for one of the neighborhood kids. We were all hanging out, talking and flirting. Just a few awkwardly placed teenagers on a swing set. And there was this throbbing in my heel. A throbbing that no amount of shoe emptying would resolve.

Over the course of the evening, the throbbing crept up from my heel and spread into my calves. I felt proud that I’d done such a number on them running the day before. I rubbed on some tiger balm and laid in bed a while. It didn’t get worse, but it didn’t get better.

I remember some instinct setting off a red flag in my mind. Sort of like ‘Sorry to bother you, but you’ll want to get this looked at’. Very nonchalant. I let my mom know it hadn’t gotten any better, and that I thought we should go to the hospital. It’s odd that she was so quick to agree given my calmness. I probably would have sent me back to bed. But off we went.

The ride to the hospital was uneventful. I even felt a little bit better as we went. By the time we were five minutes away I felt completely fine, if not embarrassed. What I didn’t know was that the nerve endings in my legs had already been nearly obliterated. My legs felt better because I couldn’t feel them. It never crossed my mind that something had happened – until I tried to exit the vehicle.

It was dark. Fluorescent light from the ‘EMERGENCY’ sign threw shadows as it came in contact with the open van door. I swung my legs out and stood. It was as though someone turned up the gravity. I grabbed hold of the door and held myself up, the last vestiges of strength keeping me from hitting the ground. I called over to mom, my voice tinged with a sort of stunned curiosity. I can’t recall a single thing we said to each other.

My initial memory of the walk toward the Emergency Room door is one where we were too stunned to panic. Somewhere deeper, though, is a memory of feeling Mom’s fear as she supported me. It was the way she was breathing. I’d not heard that sort of discrete desperation in my life before or since. I wasn’t particularly light, either. Thank goodness for the gentleman who helped her get me to a wheelchair- if not for him I would’ve been laying helpless on the pavement watching my legs die.

I’m not sure how being traumatized in other situations works, but when you’re traumatized in this specific situation, you really don’t care that your legs have stopped working. You’re just casually answering the nice nurses’ questions about whether you have any preexisting conditions, or whether this has happened before. No ma’am, I am not an expert in this particular realm of life.

Panic set in when I realized my body was in shock. wasn’t in shock, mind you, but my body was. I was watching tv in the hospital bed, and some time went by before I realized I hadn’t been breathing. I’d just stopped and my body didn’t even care. If I got too distracted by something and forgot to breathe, I would stop breathing. That freaked me out most.

The doctors of hospital #1 weren’t equipped to handle whatever had happened to me, and were pretty timely about moving me to another one. I was strapped down to a stretcher and sent on a 45 minute ambulance journey. I’d never ridden in an ambulance before. Some part of me was excited but mostly I was terrified.

Everything between that bumpy stretch of highway and my bed at hospital #2 is blank for me. I just don’t remember how I got from the ambulance to a bed. I do remember the neurologist though. Quirky guy, fun, letting me know that I probably didn’t have MS, but that it might be good to check anyway. The test was a simple MRI. I could fall asleep during one of those, if not for the lab technicians asking if I’m okay every 30 seconds. The results came back within the day, and I did not have MS. That sounded great to me, and so I smiled and listened to him wonder after what it might be.

As provided by Google;

Transverse myelitis is a neurological disorder caused by inflammation across both sides of one level, or segment, of the spinal cord. The term myelitis refers to inflammation of the spinal cord; transverse simply describes the position of the inflammation, that is, across the width of the spinal cord.

This is what the neurologist figured I had. I know now that it is what I had. Knowing for certain, however, would require a needle the length of my forearm to be inserted into my spine. And they’d do it with some local anesthetic.

In the entirety of my sensory experience on this planet, I have never felt something so strange as a needle delving into my spine. Imagine a small balloon. It’s not an ordinary balloon. Instead it’s made out of something both elastic and tensile. Something you can’t pierce but still has all the other balloon properties. Now place that balloon inside of your back, and push a needle into it. Did you feel your spine cringe? It’s called a Lumbar Puncture.

Check out Rich’s blog here.

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My First Time Back in the Ocean

By GG deFiebre

I have always loved the water. When I was a kid I used to visit my grandparents who lived in Clearwater, Florida, right next to the Gulf of Mexico. I used to spend countless hours swimming, snorkeling, and sailing in the Gulf. After being diagnosed with transverse myelitis and becoming a quadriplegic, the water suddenly seemed unreachable. Soon after I left the hospital where I had been for over two months, I was able to go in the therapy pool at my outpatient therapy clinic. I quickly learned that my body sank in water (apparently some people sink and some people float). Swimming and floating would no longer be as effortless as they once were. Since my diagnosis in December 2009, I had gone swimming a few times in pools, but had not ventured into the ocean or even visited the beach. It seemed impossible.

Then I found out about an organization called Life Rolls On. It was started by a surfer who sustained a spinal cord injury while surfing and as a result became a quadriplegic. He figured out a way to go surfing after his injury and then started the organization to expose others to the joy of adaptive surfing. I marked my calendar for the day and made sure I registered in time. On the day of the event, I arrived at Rockaway Beach, Queens early, at around 7:30 am. The beach was set up with several flags for each team, and volunteers had put down mats over the sand so that it was easier for wheelchairs to get to the water. Each team consisted of several water volunteers and surfers. While waiting for the surfing to begin, I ran into my high school chorus teacher! I hadn’t seen him since I graduated high school in 2006. I learned that he helps set up the event every year!

I then waited for my turn to surf. I was given a life vest and transferred into a beach wheelchair. The volunteers then transferred me onto the surfboard and they propped my upper body up with a noodle. A handful of volunteers picked me up on the surfboard and carried me into the water. Then the deep-water volunteers took over and brought me further out into the water. The water was cold but refreshing, and it brought back many memories of swimming in the ocean. I was hit with small waves of salt water, and it felt so peaceful sitting out there on the surfboard. The surfers then recognized a wave we could ride, and started paddling behind me. Once we caught the wave it felt like we were flying. I had never gone surfing before, but I didn’t realize how quickly you move and how effortless it feels. That was until I suddenly found myself underwater. The board had flipped forward, knocking me into the water. Thankfully the volunteers picked me up out of the water right away and I got to go surfing several more times. It was exhilarating!

Life Rolls On takes people with disabilities surfing all throughout the country, so I encourage you to check out their website to find an event near you!

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Body Image

By Madison de Rozario

I’m Madison, I am twenty-three and a three time Paralympian who competes for Australia. 

I was diagnosed with Transverse Myelitis twelve days before my fourth birthday. I was misdiagnosed with a number of things initially – all within the realm of temporary paralysis. As hours went by, however, it became apparent the sudden paralysis was not going anywhere. After a stressful twenty-four hours the rising paralysis was pushed back down from my collarbone to T8, where it eventually stabilised. I spent around three weeks in hospital, at which point my parents abducted me against doctors’ orders and took me home. The following is a blog about body image that I wrote for my website.

Over the past few months I have been incredibly lucky in having a number of opportunities to work with different people and organisations discussing body image. This has been amazing for me, as it’s something I am very passionate about, but have rarely had the occasion to talk about.

So, today I am writing about something (mostly) un-sport related for a change.

My relationship with my body has changed very dramatically over time. Accepting the body you have is sometimes a difficult journey, we all have things we love and things we would love to change when it comes down to it. I used to get jealous of people who had little ‘flaws’ that I thought were an easy fix – losing weight, getting stronger – those kinds of things. I think being in a wheelchair is a fairly significant step from what we generally view as the ‘perfect’ body, and I always saw being 100% happy with my body as unattainable, purely for that reason.

Sometimes though, I believe having one big obstacle is nicer than lots of little ones. If you can accept – and genuinely believe – that your body is everything you need it to be in spite of something like a physical disability, it makes accepting the little ‘flaws’ along the way a whole lot easier.

Over the last few years, the way my body looks has rarely crossed my mind. This has in no way come naturally – it has definitely been a process. I’m trying to make everything about how my body feels. Am I healthy, am I strong, am I fast? The reasons for which I value my body have moved so far from how it physically looks and towards what it is able to do. Learning how much your body is capable of doing can change your view of it in such an extreme way.

For me one of the big factors in switching to a more positive mentality came with becoming really involved in my sport. However this was in no way an immediate change. In 2008, I was also preparing for a fairly extensive surgery to correct a significant curve in my spine. How I felt about my body in the most aesthetic sense revolved purely around this thing that I viewed as a huge imperfection. I think I saw it as something that couldn’t be recovered from – there is no way a body that looks like this can be attractive. I did what I think most everyone who isn’t happy with their body does, and wore clothes that were too big, avoided mirrors, and tried to ignore it as best as I could. Recently I found some of my uniforms from those Beijing Games, and eight years later, they are still so many sizes too big and will never fit me. So while yes – I was getting stronger and faster and my body was doing good things, I still had overall negative feelings about it.

On top of that, I was fourteen and in tenth grade dealing with all the regular things that you deal with going through high school.  That’s when all the pressure kicks in to act a certain way, and look a certain way. There was no way I was ever going to fit in to whatever the ‘look’ at the time was. Looking back, however, I think that played a huge part in shaping how I deal with these things now. I have zero desire to fit in with what is in fashion, or what we’re told will ‘look good.’ I know what suits my body, what makes me feel good to wear, and so I do that.

February of the following year I went in for my spinal fusion, which was expected to be a seventeen-hour procedure. I had an incredible surgeon who had decided that it would be worth delaying the surgery until after the 2008 Games, as he was unsure of the extent to which it could affect my body. The race chair position is not a particularly easy one to fold into, and so after having two Titanium rods screwed into my spine, resulting in absolutely no flexion, he wasn’t sure how easy it would be to get back into my sport. As a result of this, we decided that making it to a Paralympic Games was definitely worth the wait if there was a chance of it never happening again.

I was excited going in to the operation, though, thinking about how wonderful it would be to be straighter and more symmetrical. Which was all true! While I still definitely have a curve in my spine, it is infinitely better than it had been. The part that I was definitely not ready for was having to relearn my body. I had spent years doing my best to completely ignore it, and I wasn’t ready for what it would feel like to have to be so aware of it. I learned pretty quickly that I had taken for granted everything my body could do. At the most basic level, my body could bend, I could use my abs, I could do things two-handed and with balance. Waking up and realising all of that was gone was very confronting. The next twelve months I spent getting to know my body again. At first I hated it. Being a little more symmetrical and liking my reflection was in no way worth this. But over those months that completely changed. My body could still do things; in fact, it could do all the things it could always do, just differently. It’s incredible how much your body can adapt.

After learning how to function as a human again in a new body, it was time to relearn how to be an athlete, which was a far bigger challenge than the former. Absolutely everything I knew about athletics was different. I had to start from scratch. My first six months were a complete train wreck and the next twelve were only marginally better. Over time, though, I got stronger, and at some point I realised I was stronger and faster than I had ever been. More importantly, I was no longer in a body I hated. Not because it was more symmetrical, but because I appreciated how far it had taken me and everything that it was capable of doing. The body I had was the body I worked hard to create.

Becoming a stronger athlete has changed how I feel about my body in so many ways. Being able to win medals at Paralympic Games and World Championships is huge, but not necessarily in the crossing the line first or second or third kind of a way, more so in the process. My body and I did this every day in that lead up – for the last ten years. The fact that I can tell my body I need it to do something – this painful training session, climb this hill, lift this weight, hit that wall and then do it again – and that it can do it, is incredible. Over and over again my body and I did this, so when it comes down to it, that final race is just the culmination of years of work, a physical representation of all those walls we pushed through. Medals are nice, but the part that makes me respect and love my body is definitely in the process.

When you are an athlete it becomes so much more than how your body looks. I don’t work every day so that I can look in the mirror and love the way I look. I definitely don’t work every day for my body to look better for anyone else’s sake.  I work every day to push my body to its absolute limit, to see how much further it can go. In my case, how much faster it can go. And that doesn’t have a particular look – it has a feel.

Negative body image affects so many women because we are continuously confronted by these kinds of situations. Our bodies are under constant scrutiny. The commentary over the Rio Olympics is a perfect example of the huge divide between treatment of men and women over their physical appearance. You have a group of incredibly elite athletes, men and women, and yet the women’s side of sports sparks entire debates about whether ‘female athletes should wear makeup or not’ and ‘do the prettier girls get more sponsors?’ It’s so offensive that a woman can spend her entire life working to make it to an Olympic or Paralympic Games and then be reduced to that by some commentator who has absolutely no place to discuss her appearance. Their job is to commentate sport, not whether she looks nicer with makeup on.

There is no such thing as a ‘perfect’ body, and constantly being told it exists is damaging. We’re swayed to dislike our bodies at every turn. I know we are always told ‘even the model doesn’t look like the photograph’ but in our minds, that is what we think we are meant to look like. Even when we have days where we genuinely like our bodies, it’s so precarious. The fact that we have ‘days’ where we like our bodies as opposed to years, is an awful thought on its own.

Being made to feel anything other than love for something that we can literally never be apart from is ridiculous. And yet we are encouraged daily, through different mediums, to want to change – to have a curvier body, a fitter body, a taller body. The ‘perfect’ body doesn’t exist, and yet we spend so much time trying to achieve it, as opposed to what our perfect body is. Your own perfect body isn’t one specific thing. It will change and evolve with you. My body right now is perfect for what I want it to be. It’s strong and fast and can achieve incredible things. In six months or a year when it is stronger and faster, it will be perfect then too. If I’m injured and forced to take time off and I lose all my strength, it is still perfect because it is capable of being all those things and getting back to being those things. It’s normal to want to change your body, whether for it to become stronger, or skinnier, or bigger. If you hate your body every step of the way until you get there, however, you’re spending far too much of your life not loving something incredibly essential to you that is always going to be a part of you.

To someone who is struggling with negative body image, your body is capable of so many wonderful things. At no point in time was your body designed for the visual consumption of any other person, your body is not here for someone in passing who gives you a cursory glance to approve of it.

Personally, if I could talk to my younger self now about her body, I would tell her straight up that it is never going to fit the aesthetic of a ‘perfect’ body and that is okay. Your body’s purpose is not to be visually pleasing, so why do you care if it ticks those boxes or not? I would tell my younger self that you will never be symmetrical, you will not have a number of the things that other people take for granted, but you also won’t care. Your body is going to be so strong, you are going to get to travel the world, you are going to represent Australia, you are going to win medals, you will be a world champion because your little asymmetrical, wonderfully imperfect body will be strong enough.

I feel like that is all anybody needs to know. Your body is enough. You are enough.

Learn more about Madison here: https://www.madisonderozario.com/.

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Determination

By Sarah Todd Hammer and Jennifer Starzec

Almost every story has two certain elements: a beginning and an end, but for us, this fact wasn’t so simple.  After writing and publishing 5k, Ballet, and a Spinal Cord Injury in 2013, we quickly discovered that there was much more to our stories—what we had written in our book was not enough to truly capture our full Transverse Myelitis journeys.

5k, Ballet, and a Spinal Cord Injury

Just three months after we, Sarah Todd Hammer (15) and Jen Starzec (19), met, we had already begun writing a book together.  It was no secret that we both shared a strong passion for writing—one that grew even stronger as we composed this work.  We wanted to get our stories out there while also raising awareness for Transverse Myelitis and supporting others going through this horribly life-altering disorder.  Both of us and our families faced so much uncertainty and loneliness when we were first diagnosed, as nobody seemed to know anything about TM, its effects, or its prognosis.  We wanted to find a way to help ease this feeling for the newly-diagnosed and, combined with our passion for writing, a book seemed to be the perfect way to achieve this.  Thus, we created 5k, Ballet, and a Spinal Cord Injury.

Photos: Danielle in Chicago for Flytographer

Writing the Sequel

As we know well, writing can be a long and grueling process and, oftentimes, a lot of hard work doesn’t end up making the final cut.  Determination originated as a completely different type of book: a pamphlet of advice and information for other people with Transverse Myelitis.  Although we understood that this type of text was important, after composing several chapters, we ultimately decided to go a different route with our second published work.

We originally thought that 5k, Ballet, and a Spinal Cord Injury would be a difficult work to follow because all the interesting, action-filled events—such as TM onset and our paths to run and dance again—occurred in that book.  However, once we thought about how busy we’d been since the events written in 5k, Ballet, and a Spinal Cord Injury, we realized that the new novel did not have to be all about large, drastic occurrences directly related to Transverse Myelitis.

One day, when scrolling through old pictures and social media posts in order to combat our writer’s block, we noticed how focused we were on our hobbies between 2012 and 2014 and realized just how much we’d progressed in dancing and running between those years.  Despite all the struggles we faced as we achieved getting back to what we loved most—which are discussed in our first book—we still managed to not only get back to running and dancing, but continue them as time went on.  It was then that we realized that our next book could simply be a continuation of 5k, Ballet, and a Spinal Cord Injury without growing monotonous; we could focus on what happened next in our journeys with our sports, because simply being physically able to run and dance again was just the beginning of our stories.

Determination

“Determination” has always been a favorite word of ours.  An ever-so-powerful word, we felt that it described our personalities extremely well, which was the reason we chose to name our second book Determination.  We both feel that one word, no matter what it may be, has the capability of leaving a great impact on one’s attitude and outlook on life, so a different word that motivates us is conveniently placed in-between each chapter of the novel.  As we state in the afterword of Determination, we know it would not have been possible to get through the traumatic events that we did without qualities such as “confidence,” “optimism,” and “determination.”

Unlike its prequel, Determination displays great maturity in terms of growing older and our improved writing styles.  Written similar to a journal, Determination focuses heavily on our thoughts and feelings as we go through life and experience different situations.  Rather than exhibiting negative, pessimistic attitudes about what happened to us, we chose to be positive and optimistic in our writing and daily life.  That isn’t to say that Determination has no obstacles—inevitably, there are plenty of difficult experiences included in the book.  Nevertheless, we pulled through, believing that it is harder to navigate life without some type of ambition.

Photos: Danielle in Chicago for Flytographer

What the Future Brings

Because writing is such a great hobby of ours, we expect to continue with it!  From the very beginning, we knew we wanted 5k, Ballet, and a Spinal Cord Injury to be a part of a trilogy, and we strive to make that happen.  Though we don’t plan to announce the title of our third book quite yet, we cannot wait to get started on it—so many things have happened since the events in Determination that we expect it will be an exciting, detailed story that’s full of ups and downs.

In other words, we couldn’t be happier and prouder of all we have been able to accomplish since getting TM, and we are so thankful to have the opportunity to share our stories with everyone.

*5k, Ballet, and a Spinal Cord Injury and Determination are available for purchase on Amazon and Lulu.com, or through the girls’ website: www.5kballet.com*

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My Experience with Surgery and TM

By Barbara Sattler

Ms. Barbara Sattler is on the Board of the Transverse Myelitis Association. While a city court magistrate in Tucson, Arizona, Barbara contracted Transverse Myelitis. She took four months to recover before returning to work and was later appointed to the superior court bench. Barbara retired in 2008. Since retirement she has written three novels and has committed all her publications’ proceeds to the TMA. Barbara’s books are available for purchase on Amazon, and she has a blog.

I recently had outpatient back surgery due to spinal stenosis, an abnormal narrowing of the spinal canal which can occur in any region of the spine. My problem required cutting on the lower back. My surgeon told me it’s always easier to operate when the problem is lower rather than higher. Previously, I had had surgery for a pinched nerve with the same doctor. That surgery went well and caused little pain. I was expecting the same result. I couldn’t have been more wrong.

In addition to spinal stenosis, I have TM. It struck when I was 53 (I’m now 69). TM originally caused partial paralysis of my legs, but it receded in about twelve weeks. Four months after diagnosis, I could walk, hike, and swim. Since my diagnosis, I’ve had issues with chronic pain.  Because I’ve struggled with pain for 16 years, I believed I had a high threshold for pain. I’m not sure now.

Spinal stenosis caused intense pain in both legs when I walked. Not always, but when it occurred, it ranged from a dull ache to crippling pain. Sometimes my legs would get numb and I’d have to stop because I couldn’t feel the ground. I never knew when my legs would give out. Walking with my husband, my friends, and my dogs is something I enjoy doing. I had to stop. Spinal stenosis causes different areas of pain depending on where the narrowing of the spinal canal occurs.

My surgery was scheduled for May 8th at 7:30 am. I was the first patient of the day. I woke up in recovery late morning. I hurt. The nurse gave me three pain injections before I left the hospital around noon. I was given a prescription for long-acting Morphine and Percocet for breakthrough pain.

When I met with the doc before surgery, he said “no bending, lifting or sex,” for the next 5 weeks. He never said anything about pain. He made a ‘joke’ that some patients hated him after surgery, but both my husband and I took it as a joke.

I hated him.

The next eight days were the worst in my life. I had excruciating pain 24/7. I couldn’t sleep. Lying awake between 3:00 – 6:00 am, I wondered if I had enough guts to commit suicide if the pain never stopped. I never got an answer to that question, thankfully. When I requested more pain meds,  I was told, “surgery hurts.” I didn’t give up asking. My doctor finally doubled my morphine, but it wasn’t much help.

After the eighth day, life started to improve. The pain decreased although I still couldn’t sleep.   At a post-surgery appointment, the doctor prescribed Flexeril. He said it was a muscle relaxer, but helpful for sleep. My insurance wouldn’t pay for the prescription because the drug was contra-indicated for seniors. I paid for it. A relative who is a registered nurse later told me she’d seen people my age have serious negative side effects. She also said it was an ‘old’ drug and there were newer, better options. Too bad I didn’t know that before I took it.

My doc said take one or two pills. I started with one and for 36 hours I felt like a zombie. I could barely get out of bed, but I couldn’t sleep.

I’ve taken morphine before in higher doses for TM pain relief. I weaned off it and never had withdrawal symptoms even though I had taken the morphine for many years. This time, it was different. I’d only taken it for eight days, but after I stopped using it, the following day, I paced back and forth for hours.  I was agitated and sweating.

A couple of weeks after surgery, I went to see my pain doctor for a scheduled appointment. He spent 45 minutes with me, gave me his cell number, and prescribed medicine that made it possible for me to sleep. He also explained how to get back on my TM pain meds which I couldn’t take while I was on narcotics.

All is well now. The pain from the surgery is very mild. My TM symptoms are under control.  I can justify. The only problem I still face is a lack of energy.

WHAT I LEARNED:

1.      People with TM and related diseases may experience more pain after surgery than healthier folks. My doc knew I had TM, but I’m not sure he understood the implications for surgery. It would be wise to see your TM doctor before surgery and get his/her opinion on whether surgery is wise. You also may need to educate your surgeon about TM.

2.     It is important to pin down the doctor to find out what will happen after surgery.  Surgeons want to cut. Often, they don’t have great bedside manner. Your surgeon may be reluctant to discuss pain. Be proactive. Ask questions. How much pain should I expect? What have other folks experienced? Have you ever done this procedure on someone with TM? You may have to push for answers. I felt blindsided. Have someone with you for this conversation. You don’t always process everything in times of stress.

3.     Make sure you have someone to take care of you after surgery. I’m married, have a son in town, lots of friends, and two dogs. I needed someone to listen to me vent, pick up prescriptions, and feed me although I had little appetite. When I needed more meds, I was in too much pain and too angry to speak rationally. My husband made the call which resulted in me getting more pain meds.

I am now 15 days post-surgery. For many of those days, I would have given anything to not have had the surgery. Now I feel differently. I can walk without pain and my life will include walks and hikes.

Had I been at all prepared for what happened maybe those eight days would have been better? Maybe not?

4.    Don’t take Flexeril.

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My New Life with Transverse Myelitis

By Roger Ethier

June 28th, 2011 was a morning like any other morning. I woke up early, at about 5 a.m., and gave my father-in-law a ride to work. When I got out of the truck, I noticed my left leg felt like it was falling asleep. I didn’t think anything of it and went and got my dog ready to take our morning run. By the time I got ready and grabbed my dog, I noticed that my right leg had started to feel funny. My leg continued to feel strange when I was about a quarter of a mile into my walk and was about ready to start jogging. Again, I didn’t think anything of it and proceeded to run. I didn’t make it far before I realized it was getting difficult just to walk, and if I didn’t have my dog with me, I don’t think I would have made it back to my house. I didn’t know what was going on! I had gone fishing the night before and put on a strong bug spray, so I thought that maybe the spray was reacting to my skin. My legs felt like they were on fire, and even though it felt like they were being pricked with pins and needles, I proceeded to wash my legs thinking it would make them feel better.

It was just the opposite. As soon as I touched my legs, I realized how sensitive they were. I was starting to get scared, but I didn’t want to show my fear to my girlfriend. I told her to give me a couple minutes to see if they would start to feel better, but they did not. She drove me to the hospital and by the time I got there, I could barely use my legs because they were so stiff. I felt like if I had bent my knees, I would have just collapsed. I had been to this hospital before, so one of the employees recognized me. She quickly realized this was not how I normally would appear or present myself and quickly got me a wheelchair. She took me straight into the hospital. No one really knew what was going on, because within hours of being awake, I went from feeling perfectly fine to now being numb up to my chest and not able to use my legs. One can only imagine how scared I was!

I didn’t know it but I was very lucky that day, for I had woken up before the disorder started to take full effect, and I did not wake up without the use of my legs. They put me in a room and my girlfriend had to leave. I told her, “Don’t worry, hon, I’ll be fine. Within a few hours, I’ll be calling you for a ride back home.” Instead, they moved me to the ICU. I am not a stranger to being in a hospital – I was in a bad motorcycle accident when I was younger. I was in a coma for several days and lost the use of one of my arms, but I’d never been so scared in my life as I was now. No one knew what was going on with me, and I was now paralyzed with only the use of one arm. If it wasn’t for the care of great nurses and a great doctor I don’t know how well I would have done mentally, but they kept me strong. I also got by with the help of my great girlfriend who knew somebody years earlier who had transverse myelitis! She started to think that it might have been transverse myelitis long before the doctors did, but what were the chances of such a rare disorder?

The next day they started a blood cleaning process, and within just a couple of treatments I started to get feeling in some of my toes in my left foot. It was painful, but it was feeling. After 11 days, the doctors narrowed down my diagnosis to transverse myelitis. I had been scared not knowing the real answers – now I was scared knowing the diagnosis, but at least now I could contact my family up north. They were thousands of miles away from me and there was nothing that they could do. I didn’t want to worry them, so I didn’t let them know I was in the hospital. Finally, I got the strength and the nerve to tell them, and I called my oldest brother. I’m the youngest of the family and my brother’s wife is a nurse. I figured I could explain it to them first, and then they could explain it to my mother – she is in her 80s and I was very worried for her health.

So here I was, about two weeks into the scariest moments of my life. I only had one working arm (my right arm) and barely the use of one leg (my left leg). This at least allowed me to use a wheelchair in the hospital. I was very lucky that people were very motivated to help me! They would help me get into my wheelchair and let me go all day long, but my adventure was just about to begin for it was now about 30 days into my hospital stay, and it was time for me to start my rehab. Once again, I was quite scared. I was moved to a new hospital where I didn’t know what to expect. The morning came and I was greeted by a new doctor, one that told me a joke every morning and made me laugh. It was the best bedside manner I could have ever imagined, and the rehab nurses were second to none! They were all friendly unless you needed a good kick in the butt, and then they were there to give you that as well. They taught me how to get myself out of bed and into my chair – now they couldn’t keep me in my room! I was up and gone all the time. Physical rehab was no different – they gave me exercises to do and I pushed myself harder than they could have imagined. I insisted they give me ankle weights to bring back to my room. Every commercial, as I sat back and watched TV, I did some sort of movement or exercise. In my mind, every time I bent my toes or my legs in any way, shape, or form, it was an exercise, for my muscles had become so weak.

The next 30 days came and went pretty darn fast, and before I knew it, they were sending me home. My first night home, I stood out of my wheelchair by the stove and cooked dinner. It was only sloppy joes, but it was like cooking Thanksgiving dinner to me! I had a lot of friends for support. My girlfriend was there, thank goodness! She was truly my rock in all of this, but that didn’t stop me from feeling like I was all alone in this. The outpatient rehab that was set up wasn’t enough for me – they wouldn’t work me hard enough. They were strictly go-by-the-book, and it was simply costing me too much money. Since I wasn’t really getting anything out of them, I quit them and started going to the gym. When I first started, I would go 5 days a week, Monday through Friday, and I would put in hours at a time. I really didn’t have anything else to do all day other than sit home feeling sorry for myself – stuck in bed or in a wheelchair in a house that I couldn’t move around in. So off to the gym I would go, and that’s how it went for the next couple of years. I wouldn’t stay still and I never stopped trying. I pushed myself in my wheelchair up and down my street as many times as I could, and as I got stronger, I was able to use a walker and then a cane. I continued to make my distances farther over time.

When I was in the hospital bed nearly completely paralyzed, I was scared of all the things that I would never be able to do again that I loved: walking on the beach, swimming, going for runs every day. The finer things are just walking and dancing with my loved one, and I swore to myself that when I got better I would do more of these things and do things that I’ve never done, like run a marathon! So, two years ago, I ran the Susan G Komen 5K cancer run, and I’ve now done it twice. Last year, I also went up to Boston and did a TMA Walk-Run-and-Roll for a young boy named Noah and his beautiful family. I was 40 when I first got struck down by this disorder, and it horrifies me when I see and hear of these young children that it happens to; it breaks my heart.

I still work out two or three times a week. I still push myself as hard as I can, and every day I go to the gym, I leave feeling better than when I went in. My legs feel better – they don’t sting or burn as much as they did when I went into the hospital.  I also feel better mentally. I still have a long way to go, though I’ll probably never be 100% again. I am getting older so I’ll never be as strong or as fast as I once was, but I’m just trying to get full mobility back. It’s been almost six years since that first day, and I have not had a relapse. I guess I’m a lucky one, but I like to think that my hard work and the excellent care from the nurses and doctors from the hospital had a lot to do with it. I hope to encourage all, especially the young ones to never give up and always continue to try! My left arm was completely paralyzed back in 1986 due to a motorcycle accident; I’m not a doctor, but from all this hard work and perhaps from the transverse myelitis episode, my body may be trying to regenerate itself as I now have partial use of my left arm back! I know it seems impossible sometimes, but the best thing we can do is keep positive attitudes and just keep trying, and maybe one day things will be better. I want to give special thanks to Angela, the greatest physical therapist, Rosemarie Melhandodo from the Florida blood center, Juan, my ICU nurse, Dr. Gabriella, MD and Dr. Lochner, MD, and the biggest, most special thanks to one of the greatest people in the world, Shawna Dugger, for always being my rock.

To contact Roger, please email info@myelitis.org

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This wasn’t in the plan!!

By Hannah Royal

I was twenty-five when this ‘little’ problem came to light. I know there are those out there who suffer more and have had bigger problems with their condition but my little world shattered!

It was a normal Saturday and I was heading out with a friend for food, putting on my new heels but couldn’t fit in them… I knew they fit, I only bought them a few days ago… I was warm and in a rush so I brushed it off and just put on another pair.

The next day I had a weird warm sensation running down my leg and it felt almost heavy… again I brushed it off, I was tired!!

The next day I drove into work and found it really heavy on the brakes, and by the time I got into work I was dragging my right leg… perhaps I slept awkwardly, compressed a nerve. But as the days went on I continued to drag my leg. Getting my foot over a mat was impossible so I would drag it with me. I couldn’t drive but I continued to work. At work, I would fall, and I was tripping over my own foot. After examination, I had no sensory nerve reaction. The doctors would scrape my foot and I, of course, would yelp in pain… they were driving a sharp object into my foot but my nerves would not react.

That first week I sent my body into overdrive!! I tried to carry on as normal with work and home life, but basically carrying my body weight and my legs with it, just made me ill. Some nerves came back about a month later, but this numbness spread to my ribs and again my body was in overdrive.

MRI Time…

I had the MRI, and the doctor in A&E (accident and emergency) said he wanted to meet me for a follow-up and a referral to a neuro – this was expected. What was unexpected was the hospital sending me two letters for a neuro appointment all before the A&E specialist appointment. I rang and said there had been a mistake, they have given me two appointments for the same doctor. “Oh the second letter is specifically for the MS clinic,” the appointments coordinator said.

Brilliant, I have MS…

The specialists apologised profusely after I emailed both of their secretaries about this little mishap.

Examination time…

By the time this had happened, the initial symptoms had gone, but there was still nerve damage with the foot and I had the occasional fall, but hey.

So I don’t have MS…

It was confirmed by the neuro consultant that I did not have MS, but I did have lesions on the left frontal lobe and the right atrium, and a spinal cord lesion at T3/4. They called it CIS: Clinical Isolated Syndrome. Which is not exactly helpful, so I got on as normal.

Normal??

I was twenty-six now, a week after diagnosis, and I had to wear a splint on my ankle that was attached to my shoe to make my foot flick. The splint stopped my foot from dragging. I wore this for two years!!

Then the fun really began!

I thought, “Well it’s happened, but life goes on, make it work,” so I did. And then the pain started.

Horrific pain… I would stand in the corridor in work and think, “Do I need to walk down there?” I could not turn over in bed without screaming in pain.

The only way I could describe it to the specialists was sciatica in both legs. The pain would ‘radiate’ down my legs, and my hips felt as if I was dragging another person with me. When standing, my legs would lock and my upper body would move but my legs wouldn’t, they would follow later…

“We’ll start you on medication!” So gabapentin and amitriptyline are my new best friends, along with B12 injections every month, vitamin D3 and folic acid, and magnesium supplements to help with muscle relaxation before bed.

Yeah, that took a really long time to get people to see how much pain I was in, and it wasn’t your average everyday aches and joint pain (which shouldn’t happen anyway at my age). So I started on medication, and again fought to show the medication was not working, so it took a stupidly long time to get the right mix of meds to not ‘stop’ the pain, but make it bearable to go on with everyday life.

Changing!

During this time, I lost all confidence in myself and the specialists that I was under. Why was it so difficult for people to see how much pain I was in, did I really have to break down and cry in front of the specialists for them to see how bad I was? I was extremely emotional around this time. I was so tired!! And no one understood what tired meant. So really when I said ‘tired’ to a normal person, it would mean exhausted!! But I hide it well, which looking back was the problem. No one understood because I hid it.

I changed my ways for this ‘imposter.’ I changed the car for a car with a higher seating position. I now love the car, but I was angry. I was twenty-seven and was in agony getting out of my car; the amount of times I thought I would need to call in sick from the car park!!

I changed the bed so it was a higher bed, and I put a seat in the bathroom for when I came out of the shower. I requested to work two afternoon shifts a week because I sleep better in the morning than the night. Simple little things to make my life easier, but I’m twenty-seven – why did I need to make these changes? I’m way too young to buy a car based on a high seating position!!!!!!

Okay you have Transverse Myelitis!

Confused, in pain and angry!!

It took a long time to realise that I am allowed to be angry about what happened to me. I lost all my confidence and still, to this day, it wavers. I continue to have ‘relapses’ but don’t spout any new lesions which is good. But still, I relapse, the most recent being pain in my arms when I put weight on them or in certain positions. And what really annoys me is the bladder problem.

So the bladder problem!

Yeah, they talk about your nerves and pain, but they fail to mention it can affect your bladder. Did you know that the sensation to pass urine is purely based on nerves? Turns out mine seem to be damaged! I don’t have the normal sensation to pass urine, I only know I need to go when my bladder is full… and I get that muscle ache, the strong ‘I need to pee’ feeling. Because of this little issue, my bladder retains its fluid, and I never actually empty my bladder so it gets fuller quicker; therefore, I have frequent and urgent calls to the bathroom. Woohoo, I’m twenty-eight and have the bladder of an eighty-year-old… well, actually they probably have a better one. And to make me feel so much better I have been referred to an incontinence clinic…amazing!

Oh and don’t get me started on the random numbness, pins and needles, and the fact that my feet are freezing all the time!!

The cold really affects me. I am practically attached to my heat pad and extra thick socks no matter the weather. But I’ve worked out that if my feet are warm then I’m not in pain, so heats pads forever… I think I’ll buy shares.

My family have been amazing. They have tried their best to understand, but I know they won’t fully understand it. They understand how ‘tired’ I get and understand when I just need to be on my own to basically rest and catch up. They will do anything for me, but I always feel I am somehow letting them down and being a burden on them when I say I’m tired. But life goes on and as much as it has annoyed me to make changes, there is always someone who is worse off. I understand now that I am allowed to be angry and scream ‘why me’ but it is hard to see the future and a life without medication, and who knows what tomorrow brings. I am trying to live life, which can be difficult when I’m so tired! And I can’t live in a world where you live every day like it’s your last, I just can’t live like that. But I refuse to let this ‘imposter’ ruin me and stop me from doing the things that I want to do in life. I will walk that mountain and drag my legs along. I will have that family that I have always wanted, there must be a way around this medication.

Who knew a viral infection could spread to the spine and the brain, I only had a rash…ha…

But Transverse myelitis, out of my way!!!

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