“Up and Down” Release

By Sarah Todd Hammer and Jennifer Starzec

We, Sarah Todd Hammer and Jennifer Starzec, have been writing since 2012, and it has brought us closer together. From FaceTiming for three to five hours at a time to write, to staying up until two in the morning putting the final touches on our third book, sharing our stories with the world has provided us with unforgettable memories. We’re seventeen and twenty-one years old, and when we started the 5k, Ballet series, we were only ten and fourteen years old. Every book we publish is different, but each one pertains to our diagnoses and what comes along with them. When we began writing our first book, we had no idea how much our series would grow or how much of an impact it would have on others (and ourselves!). Several people—patients, parents of patients, and caregivers alike—have come to us and shared how much our books have helped them get through rough times, which makes both of us incredibly happy. One of our main goals when we first started the series was to help spread positivity and encourage others, because we know dealing with life-altering disorders such as rare neuroimmune disorders is extremely difficult, and it has become clear to us that we’ve succeeded in accomplishing that goal!

Up and Down

Six years ago, we published our first book, 5k, Ballet, and a Spinal Cord Injury. Three years ago, we published our second book, Determination. And now, three years later, we’ve completed the 5k, Ballet trilogy with the publication of Up and Down! We’d always known we wanted to make the 5k, Ballet series a trilogy, and it is so incredibly rewarding to have accomplished that.

Our lives were changed when we were only eight and thirteen years old through diagnoses of acute flaccid myelitis (AFM) and transverse myelitis (TM), but we were both determined to dance and run again as we struggled to cope with our new disabilities. As we got closer to one another and became great friends, we found a lot of support and comfort in our friendship. Every time we had any sort of hardship, we knew we could always talk to each other.

Just like our friendship has helped us get through the difficult times, so has music. We’ve both found solace in many different forms of music during the “low notes” of our lives with AFM and TM, which has changed how we view our struggles. It’s comforting to know that, no matter how many times life gives us those “low notes,” there are more “high notes” to come. We’ve learned throughout these years that diagnoses of AFM and TM always come with ups and downs, and both of us had a lot of ups and downs during the time period of our newest book—2014 to 2017—hence the title, “Up and Down.” We wanted to show that the “downs” and “low notes” are necessary parts of life, but there are more joyful times to come as well.

The Process

Since we started writing in 2012, our skills have grown, and our writing has become more mature. In 5k, Ballet, and a Spinal Cord Injury, the beginning of our stories can be seen through the lens of an elementary schooler and middle schooler. Our stories began when we were young, and as we lived with our disabilities for longer, the experiences we had helped us grow and mature over the course of the series. Because we’ve aged six years since we began the series, Up and Down demonstrates our most mature writing and experiences as young adults as compared to our other two books. Being older presents a unique set of challenges of living with a disability, because navigating through certain situations as a young adult is a challenge for everyone—and even more so when a disability is present on top of it.

Writing is an excellent way for us to share our emotions concerning our disabilities, and we’ve found that it’s cathartic and rejuvenating. It allows us to present ourselves to the world and make an impact in others’ lives through storytelling and charity. And, through writing, we’ve grown closer, and we hope to continue writing together in the future! Although the 5k, Ballet trilogy is over, we know for sure that we’ll continue to share our stories through writing, and it will definitely be exciting to see how many more books we publish! Until our next book release, we encourage our readers to keep their chins up high, follow their dreams, and never give up no matter what life throws at them!

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

Continue to follow our stories:

Website: www.5kballet.com

Instagram: @sarahtoddhammer, @jenstarzec.

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TM, and Life After

By Barbara Sattler

In 2001, I was a judge enjoying my job, my family, my dogs. I exercised daily, ate well and hadn’t been seriously ill since I was a baby. Over the summer of 2001 I had weird symptoms including a strange intermittent pain in my chest, a searing pain when I bent down and weird bowel and bladder sensations.

One morning in August, I woke up with a fever and nausea. Over the following two weeks, I had numerous tests which were all negative. About ten days later the fever broke, but when I got out of bed, my left leg dragged.

My left leg became more compromised and I began to feel like I had a boa constrictor on my chest and an electric current in both my legs. My right leg became numb in places. I visited a variety of doctors. Diagnoses included a post-viral syndrome but mostly “I don’t know.”

Finally, my primary care doctor ordered a brain scan and MRI and sent me to a neurologist. On September 11, 2001, the day our country saw the World Trade Towers fall, I was diagnosed with transverse myelitis and began receiving intravenous steroids.

As I look back almost twenty years later, I realize how lucky I was. My paralysis receded as did all my symptoms other than pain and girdling. Now, l take a variety of medications which control my symptoms and pain most of the time.

In 2008, I retired and began writing novels from my experiences as a criminal defense attorney and judge. All proceeds from my novels go to the Transverse Myelitis Association (TMA). Check out my fourth book, Behind the Robe: A Novel, described below.

“All Rise the Honorable Lourdes Vasquez presiding.”

Lourdes, the woman behind the robe and newly appointed to the bench, struggles with questions that change lives. Do the police have probable cause for a midnight search warrant? Should a minor be granted an abortion? Should children be sent to a religious school or stay in public school? Should the man standing before her be sent to prison?

Behind the Robe shows you the daily life of a judge. Lourdes, a passionate public defender, applies to be a judge at the urging of her husband, Carlos, the boy she loved in high school—now a veteran with a chip on his shoulder. As a Latina, she believes she has no chance and is shocked when the governor calls.

As a new judge she must deal with the insecurity. “Can I do this job? Am I just a token? How can I deal with my friends? I’m no longer a defender, but a decider.”

She is more than a judge, she’s a wife and a friend. Things at home deteriorate. Carlos turns to drink to deal with his post-traumatic stress disorder (PTSD). Will her marriage survive? Molly, her best friend, sober for six months, has fallen on hard times. Will she keep her addiction to wine and bad men under control?

Behind the Robe is available at Amazon on Kindle and in paperback, at bookbaby.com in their bookstore and Barnes and Noble online. In Tucson, it is available at Antigone and Mostly Books.

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.com. Barbara also has a blog.

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Why I’m Attending the 2019 RNDS

By Sherry Boyack

I registered for the Rare Neuroimmune Disorders Symposium (RNDS) because I have transverse myelitis (TM). My case is not as severe as some, but it definitely affects my life. I was diagnosed in October of 2017 when I had strange tingling sensations from my neck down. (This was after my daughter had brain surgery, my brother had open heart surgery, and both of my sons were in a three-car traffic accident in the 2.5 months prior to my diagnosis.) At first, doctors dismissed it as a virus. Nine days later, after seeing a general practitioner a second time, I was referred to a neurologist. She took my symptoms seriously and ordered three hours of MRIs. I left the hospital after the MRIs to get my hair cut. The doctor called to tell me to come back and admit myself to the hospital because I had TM. I stayed in the hospital for seven nights for a lumbar puncture and high dose IV steroid treatments. My symptoms didn’t really change, but I was exhausted, and my immune system felt weak after the steroids. I was working at the time. A doctor in the hospital said I could go back to work as a teacher’s aide the next Monday. I couldn’t imagine how that would be possible.

I tried to work, but I worked mostly half days through the Family and Medical Leave Act (FMLA) days that I was granted through the school district. At the end of the year in my performance review, I was given a low score in the attendance category. That was tough because I was pushing myself to be at work even half days. I think this is an example of the lack of understanding of this neurological disorder. I looked normal on the outside but was really struggling to make it through each day.

I was getting physical therapy (PT), but it was very painful. My daughter who was studying to be an athletic trainer at the time went with me to a session. She was furious and said that the therapist was too rough. I told my neurologist that PT was painful, and she confronted the physical therapist. After that, he changed my routine to exercises with weights that made me incredibly sore. At that point, I canceled the rest of my appointments with him and went to see a therapist whom I had seen before for knee therapy. He did things that brought me some relief and helped me get stronger.

While my tingling nerve sensations never went away, I started taking prerequisite classes to be accepted into a nursing program at a community college. Just recently, I went to the first day of nursing classes. I had to withdraw, however, because the hepatitis B shot that I got for the program two weeks prior caused my TM symptoms to flare up. I wasn’t sleeping at night because of my overactive nerves and spasms. I am exhausted. I’m hoping to try again next semester.

I’m going to the conference to meet other people with rare neuroimmune disorders and to learn more about TM and how to find medical help in my area.

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Breaking Through the Darkness

A story and resource about fighting a mysterious illness and adapting to blindness.

By Andrea Mitchell

My name is Andrea, and I was officially diagnosed with MOG antibody-associated disease in 2013. At that time, there was not much known about the disease. The first two years after the diagnosis were especially hard as I lost most of my sight in both eyes. I am writing my story to help others and provide a resource for the newly blind.

Stepping back in time, I remember walking out of my neuro-ophthalmologist’s office just feeling lost. I had dreaded going into his office knowing that I was not going to have a good report. I had gone through a lot of relapses at this point and remember not being able to read anything on the eye chart. Everything was black in my left eye and very blurry in my right eye. I could not see all the colors in the book he used either. I must have scared my doctor and nurse because I was crying so hard. They didn’t know how to respond, and I felt like no one understood what I was going through. I remember going through the different stages of loss. I stayed in the anger stage for two years. I had lost most of my sight and my life as I knew it. It started out with my inability to drive, not having my health as I used to know it, loss of a great career and inability to engage with lots of friends. It felt like I had fallen down a rabbit hole into some mysterious world. I could not make out faces anymore. I was having trouble doing basic things that I had been doing all my life. I felt my independence slipping away. I have always been a problem solver, so I decided I needed to take charge and seek help. I went to see a therapist because I needed help to cope and redefine my life. It turned out that she would be instrumental in helping me find some of the resources I needed to get started on finding my independence.

Coping with Loss

When I received my diagnosis, there was hardly any information on MOG-Ab disease, and there were no Facebook groups or other support groups available. I told my therapist that even though I was given my medical report, there was no advice on how to adapt to being blind. She was instrumental in providing some resources and information to help guide my way through this new lifestyle. I am not ashamed to say how valuable those therapy sessions were at that time of my diagnosis and beyond. I was battling this disease to keep what little sight that I had left, and I had to keep my sanity and renew my life, albeit perhaps a little different than the old norm.

My first step was to call the Lions Blind Center, which is a nonprofit organization whose mission is to provide education, training, and certification for members of the blind and visually impaired community in Oakland, CA. The Center offers services such as computer training, job placement, and a vision clinic.  They told me they could provide me with mobility lessons. I jumped at the opportunity. A person came to my house and brought a cane that looked like a regular cane but was white with a red tip. We walked around a little and he asked if that was enough. He said he did not want to start out with the regular long blind cane because that would take additional training. I remember thinking what a relief, but, unfortunately, it was not enough for me. I needed much more assistance than what could be received in an hour or so of introductory training. I called him back and he returned with the long blind cane. He showed me how to use it. I practiced using it around the neighborhood. While I was working on my new skills, I must admit I still was not comfortable being blind and knowing everyone I came across would know I was blind. I still persevered because I felt I needed more training with my mobility and daily living skills. Not being able to use my computer anymore was also a huge detriment.

Taking Charge

My next step was to call the Department of Rehabilitation to see what they had to offer. I met with a counselor, and he gave me a referral for someone to come out and further evaluate my needs. He showed up with another person that was in the blind services department. It was the first time that I heard of a school that could give me my independence back.

Vocational rehabilitation services differ by state (https://www.askearn.org/state-vocational-rehabilitation-agencies/). Some states require that you are actively looking for work or education. Below are links for resources in California, but there may be similar resources available in your stare.

The school that was suggested to me is called The Orientation Center for the Blind (OCB). I took a tour and was amazed at all the school had to offer in the way of training. The training included mobility, computer, adaptive technology, braille, and daily living skills (such as cooking, cleaning, and entertainment as well as health and beauty). The mobility training included a tour of the guide dog school and some Juno training. Juno training involves an instructor playing the role of a guide dog, where the student is guided by the instructor while giving the basic commands of “Forward,” “Left” and “Right”. It is designed to train the student to use a guide dog. The only thing that caught me off guard was that it was a residential program. I was told that the program could last anywhere from 6 months to a year, which depended on the individual needs and learning process.

I decided to go, and it was the best decision I ever made. I moved in and went home on weekends so that I could spend some time with my husband and family. I was able to learn how to use public transportation in order to do this. We didn’t have Uber or Lyft in our area at the time and, being in Albany, CA, it was a good distance from my house in Oakley. It took me about a year and a half to complete and graduate from the program because I had continued relapses. I was definitely at the right place, though. I lost a lot of sight but was told by my mobility instructor that I had enough vision to be dangerous.

It was really tough in the beginning for me as I struggled to fit in. There were a mixture of ages and backgrounds there. Keep in mind that I had not been in a school atmosphere in a long time. I was very fortunate to find some good friends there that I still stay in contact with to this day. They blindfold you while you are in class so that you don’t use any vision for assistance. It is designed to prepare you for the future if you have a progressive condition.

The internet is a great place to look for articles and other organizations across the nation and abroad. For example, this article provides a great starting point for those looking for advice on where to start: https://www.allaboutvision.com/lowvision/resources.htm.

To read more of Andrea’s story and see a full list of resources for individuals who are blind, please visit here.

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How to Lose a 5K… The Right Way

Last week, the TMA Blog featured Maleah Moskoff’s story of completing a 5K after her ADEM diagnosis. Below is the story of her journey from her husband’s perspective.

By Dan LaCloche

On June 9th, my wife finished in last place.

Two years ago, Maleah needed a machine to help her out of her hospital bed and into a chair. She couldn’t walk. We weren’t sure if she would ever walk again. Acute disseminated encephalomyelitis (ADEM) was the eventual diagnosis.

Two years of hard, hard, difficult work had led up to June 9th, 2019, when she took on the challenge of doing a 5K. Two years ago, walking 25 steps down a hallway with a walker was a HUGE accomplishment. On June 9th, I watched Maleah put in over 8,000 steps to complete the Wonder Woman 5K. Let me tell you about what I witnessed.

Our son Ben and I dropped her off at the shuttle that would take her to the starting line. We had an hour before the race started. We made our way to the starting line (only participants could use the shuttles); when we caught up with Maleah, there were 15 minutes until the race was to start. She had been standing the whole time, waiting with the other Wonder Women at the starting line, which is pretty draining when you have ADEM. All she had were her walking sticks to help her keep her balance.

The race started. Ben and I were going to stick with her the whole way, just in case something went sideways. Her first challenge came right away. At the starting line, she was bunched together with other participants who would inadvertently bump her and her walking sticks as they jockeyed for position and passed her. As the crowd of racers thinned out, she had her next challenge: I noticed that her legs didn’t look as strong as usual. Standing for an hour pre-race, poor sleep the night before, and no morning medications looked like it all had taken a toll. She looked exhausted, and we weren’t even a mile into the race. I tried to keep her focused, taking it one step at a time. Every once in a while, she needed a 10-second break for a quick drink of water and a rest. There was a lot of track still in front of her, but she persisted.

Every step started looking difficult and a bit unsteady. We were almost halfway through the course when we realized that there was no one left behind us, but that was okay; she wasn’t here to compete against the others. She was here to prove something to herself. At this point she had to work hard to get though a busy intersection. There were police cars with their lights on, holding back the traffic. Some cars were u-turning to avoid the blocked intersection. They seemed angry. I told Maleah to stay focused. I could see race organizers closing things down behind us. They were taking down the speakers and barricades. The water stations were closing before we reached them. I was starting to think that they might close the course before she could finish.

Just then, a course volunteer pulled up on her bike to check on us. She asked if Maleah was okay and got off of her bike to walk with us. She told Maleah that there was no way that she would let them close the course on her. She then proclaimed that Maleah was GOING TO FINISH this race. Alison, the volunteer, started chatting with Maleah to take her mind off of what she was doing and was a great source of encouragement. Now the police cars were gathering right behind us. They were following us in, lights on. After a while, another volunteer joined us. He hopped off his bike and joined our growing support team.

Maleah was two miles into the course, in last place, struggling, when we started hearing people clapping. Scattered here and there, along the sidelines, there were spectators who saw Maleah and could see that she needed a boost. Every clap gave her strength for one more step. EMTs were shouting, “You’ve got this! You can do it!”, and clapping. Security guards stopped disassembling barricades to cheer her on. A third bike volunteer joined us. These volunteers were determined to see Maleah finish what she had started. Without Maleah knowing, I had been asking Ben to check Google Maps. We both decided that the news wasn’t worth sharing. She was still a long way from the finish, but I started telling her that we were almost there. I wasn’t sure how she was going to do it, but I knew she was going to finish. More 10-second breaks and more water. She kept going.

I could see her head and heart battling. Her heart was saying, “You’re finishing this”, while her head was asking, “How do I get out of this?” The whole time she just kept going, with two police cars behind her, three volunteers walking next to her, Ben at her side with a water bottle at the ready, and me walking backwards in front of her snapping photos of the team that she had formed.

For perspective, have you ever seen footage of the Michael Jordan Flu Game? Google it, because what I was seeing was even more impressive.

Then we started hearing music off in the distance. It was the after-race party at the finish line. We were getting close; just three more blocks—two more—one more. Only participants and volunteers could go through the finish line, so I ran ahead to get a good spot to snap a picture. And, there she was, coming around the corner, smiling, crying—just a few more steps to the finish. She did it.

Just two short years ago, she couldn’t walk, and now she just finished a 5K! They announced her name as she crossed the finish line. Someone put a medal around her neck, someone else got her a folding chair, someone else handed her a water. And, with that, she had accomplished her goal.

From my perspective, it was pretty inspiring to see the sheer determination, guts, and heart that it took for her to get across the finish line, and it’s something I’ll never forget. So, yeah, she finished in last place…but it felt like first to me.

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June 9th Wonder Woman 5K

By Maleah Moskoff

I was diagnosed with Acute Disseminated Encephalomyelitis (ADEM) in April of 2017. Paralyzed from the chest down, I spent seven weeks in the hospital/rehabilitation before returning home in a wheelchair. Flash forward a year, I was walking 5 steps with a walker. Two years post-diagnosis, I was walking using a cane and walking sticks as aids when needed. I set my annual goals, one being to sign up for and complete a 5K in 2019. When I saw a Wonder Woman 5K advertised, I knew it was the one for me. I trained for months with my physical therapist and family, walking distances close to 3 miles with a walker or sticks.

Below is my journal entry that I shared with family and friends afterwards.

I woke up at 5:45am in a hotel in order to be dropped at the shuttles that would take us to Six Flags where the start was. I waited for over an hour before the 5K participants could start. Not feeling well, I was worried to say the least about my performance. I had more neuropathy and pins and needles than usual that early in the day. The female power/strength/energy was incredible. It was very moving and hopeful. The guys joined me at the start and led me through the course. The weather behaved and that was a blessing. I was on pace, 28 minutes first mile, and then fatigue set in. Close to the 2 mile marker, a volunteer on a bike walked next to me. We struck up a conversation and she became my cheerleader. Soon, another bike-riding volunteer joined the pack. He was supportive and encouraging. A third rode in to the now super pack. I wanted to quit. I was spent. My legs were collapsing and my shoulders sore from using walking sticks. They all said, “You ARE finishing!” while pointing out markers to break up what seemed like a daunting amount of blocks to go. We had a police escort behind us and sidewalk spectators cheering me on. It was magical. When I found out that this 5K was closer to 3.7 miles than 3.1, I was like, “OMG – Just over the bridge (I-94) and you’re there!”. Ok, I AM finishing this. I see the finish line and a man asks my name then conveys it to the announcer who says enthusiastically, “Let’s welcome our last 5Ker, Maleah, as she finishes!” I was in tears. Not because I was the last in my group, but because I did it! I finished. Someone got me a chair and a second one for my legs. I was adorned with a medal, banana and water. My private volunteers hugged me individually and we took a group picture. Medical personnel asked if I needed anything. I had just a few minutes to chill out before joining the party. I did NOT poop or pee as I feared I would. It was pretty much over and we made our way to the car. Time to get home, reflect and shower!

June 9th is Transverse Myelitis Day! Wow, what cool timing. I set a goal at the beginning of the year to sign up for and complete a 5K. One year ago, I had a goal to travel to Colorado, and I did that. What will next year’s physical goal be? Scotland! Teaching my son by example that perseverance and effort exceed competition. Ultimately, showing my son that finishing last is irrelevant when the only person you were competing with is yourself. Finishing is more important than placing or ranking higher.

Set a goal, aim, fire!

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Wheelchair Life, One Comic at a Time

By Molly Elizabeth

Hello, my name is Molly and I am an incomplete paraplegic as a result of Transverse Myelitis (TM). In 2007, I was diagnosed with TM after going to bed with a sore lower back and waking up completely paralysed from the waist down. Unfortunately, no doctor has ever been able to pinpoint the exact cause, but they believe it may have been due to an asymptomatic chest infection. At the time, I was a 14-year-old still trying to figure out my place in the world, so throwing a seemingly out-of-nowhere spinal cord injury into the mix turned my family’s and my world completely upside down.

I spent months in the hospital relearning how to do daily activities and slowly regaining some movement and sensation to my lower limbs. By the time I was discharged from the hospital, I was able to stand and walk short distances with crutches to assist me, but I now had to start my new journey of being 98% dependent on my manual wheelchair.

It’s been just over a decade now and I am in a place I thought I’d never be: medically stable, working full time on a Spinal Rehabilitation ward, and living with my amazing partner, Chris. The combination of the stability in my life and the daily reminders at my work of how difficult dealing with a serious injury or illness can be prompted me to begin drawing comics. My goal is to draw comics that don’t necessarily focus just on my wheelchair in every single post, but more on how life in a wheelchair is just as normal as any other life – there is happiness, sadness, laughter, doubts, frustration and many more emotions. But in the end, I want my comics to show the wide range of moments that I encounter in my life, wheelchair-orientated, relatable, informative, or just plain silly!

You can follow Molly’s comics on Instagram at @mollyelizabethcomics.

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My TM Story

By Ana Mendoza

July 20th of 2018 will be a date I’ll never forget. I was out of town with my husband, our baby girl (who was just 3 months old) and some other family members when the first symptoms of TM manifested. I grabbed a cold soda and snap! Just like that, my fingers were tingling, hurting and burning all at the same time. The feeling went up to my spine and chest through my left arm and flowed down until it reached my right hand. I have never experienced such pain in my entire life, not even my c-section. About 15 minutes later, I couldn’t hold my baby to breastfeed her anymore – I didn’t have the strength. Our family thought it must be a reaction to the height in the mountains and suggested that I lay down. A couple of hours passed, and I felt too exhausted even to sit up straight. I got up and tripped on my way to the bathroom since my legs were also not responding, and my fingers were already useless to pull down my underwear. I panicked and burst into tears of fear and called my husband. I was completely paralyzed from my armpits down two hours later, so my husband rushed back to the city and called my parents who were waiting for me with a neurologist at the Emergency Room (ER).

The MRI confirmed my spinal cord had an inflammatory injury level C3-T1. I had to use a catheter since I hadn’t peed in more than 24 hours. It was also getting harder to breath, so I was started on steroids and admitted to the hospital. They kept me in the IMC (Intermediate Care Unit) for three days to make sure I didn’t get any worse and afterwards I was transferred to a room. All sorts of laboratory tests had been conducted, and the result to each and every one of them were negative. My doctor concluded this was an idiopathic case of transverse myelitis and discharged me after a week. Therapy has been a part of my life ever since and thanks to it, I was able to stand with support after three weeks and walk again without a walker two months later.

It’s been almost 9 months and I’ve suffered one relapse on my right leg, which still gives me trouble from time to time. Both legs are still weak and I can’t jump or run yet. Sensation is still messed up in every part of my body (inside and outside) that was paralyzed, but my back is the worst part. I get tired easily and struggle with the side effects of prednisone, but I am finally tapering off of it. I had to use pampers for about four months and am still working on my bladder function, which I need to put pressure on in order to empty it completely. I’m still disabled in my hands and unfortunately depend on others to take care of me and my daughter, my motivation, but I haven’t quit therapy and never will until I recover 100%.

TM has been life-changing, but also it has taught me I am stronger than I thought. I have grown so much alongside my family and my husband, who has been a great support, and I definitely wouldn’t be able to fight this disease without them.

I am positive I will recover from this. I have faith in our Lord. TM will always be there, and some side effects may remain, but it will be a daily reminder that I am blessed to be alive and that I am no quitter.

I am glad to have found the Transverse Myelitis Association and met its community. I am hopeful that people will someday be more empathetic to those like us with invisible chronic illnesses as they become aware thanks to this Association. I hope with research we not only find a cure to these autoimmune diseases and better treatments than steroids, but a way to prevent them.

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We All Have Differences

By Elisa Holt

Over the past 4.5 years, I’ve heard these phrases over and over again when it comes to Noah’s Acute Flaccid Myelitis (AFM).

“Your hands must be full.”

“I don’t know how you do it.”

“I’m so sorry.”

“I could never do what you do.”

I know with all my heart the comments above from friends, family and strangers mean well. I know it comes from a place of love, not knowing what to say and support. While I appreciate it, just remember when you hear these phrases over and over again, it gets ingrained in your consciousness. I felt VERY isolated during Noah’s first year being diagnosed with AFM, and to be honest, hearing these comments only pointed out how different my life is because of my son’s physical disability. Please don’t look at my family and be sad for us. Don’t treat Noah differently because he almost ran you over in his wheelchair. Do not avoid coming and taking my child out because you feel inadequate to take a boy out in a wheelchair. At the end of the day, he is still a 5-year-old little boy and I am a mother. Period.

“Your hands must be full.” Yes, they are, but you should see my heart! Thank you to the wonderful friend who taught me that!

“I don’t know how you do it.” I do it because I don’t have a choice.

“I’m so sorry.” Why are you sorry? My life isn’t horrible. Don’t you have moments when things in your life don’t go your way? So do I, but this doesn’t mean I lead a horrible life. It also doesn’t mean my child won’t live every day to the fullest!

“I could never do what you do.” You could and you would! If one day your child woke up with a life-altering disorder that changed their life and yours, you would do what has to be done. You would do anything for your child.

Noah does get around his environment differently than most, but he is still a regular 5-year-old boy. He head butts his brother, tries to run his brother over in his wheelchair, laughs at things that are funny, gives the best hugs, and loves to talk to everyone even if he is shy for the first few moments. You don’t have to treat Noah differently – he is a kid like any other.

Our doctors at our doctors’ appointments and those who don’t know him usually look to me for answers. How is Noah doing? Why is he in a wheelchair? I tell them, “ask him.” He is old enough now and very knowledgeable about his AFM, and he will tell you how he is doing and why he has equipment. No need to ask me, this kid has it handled! If it’s about Noah, ask Noah. He knows himself best.

As for me, I’m just like any other mom. Takes me forever to get out of the house, I have my bad and good days, I keep a potty in the trunk of my car, and I love my kids!

Mitch and I stand firm that we will never let AFM dictate our family’s future, we just find different ways of doing life.

We all have moments when we get sad and mad about AFM. I would be lying if I told you I don’t picture what life would be like without AFM (time to time), but who doesn’t picture life differently sometimes?

We are all one village running the same race just at our own speeds.

Elisa with her sons, Samuel (left) and Noah (right).

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The End of the World as I Knew It (and I feel fine)

By Sue Lamoree

On my fortieth birthday, I was diagnosed with Transverse Myelitis (TM). The life I knew ended that day and a new life began.

The following is an excerpt taken from the first entry of my journal chronicling my experiences with TM over the past twenty-four years. I hope my story encourages people to have courage and faith as they read my humorous, spiritual and sometimes challenging anecdotes about life from a quadriplegic’s perspective.

Unlike most people, my symptoms manifested over a period of months. I noticed I wasn’t able to walk short distances without requiring frequent rest intervals. My immediate reaction was to exercise. I spent weeks walking around my neighborhood and running in place in my 550 sq. ft. apartment, without any noticeable improvements.

Next, I noticed the occasional leg jump and that I was unintentionally walking into plants and walls. I knew something wasn’t right, but I was terrified and surprisingly embarrassed. Eventually, I visited my primary care physician who referred me to a neurologist. Now I know why doctor’s offices are always equipped with boxes of Kleenex. The neurology specialty was probably the LAST area I wanted to consider. And yet it was an underlying fear that haunted me from the onset of my symptoms.

The first order of business was to undergo an MRI of my brain and spinal cord, which confirmed I had a lesion on the C5 level of my spinal cord. Good news—it wasn’t on my brain, which could result in blindness, breathing difficulties and speech impairment among other things. Bad news—the lesion was on my cervical spine which meant my entire body was affected by the damage it was causing to my central nervous system.

Apparently, I was already experiencing a degree of paralysis. My next concern—will it get worse? Neurology is a such an inexact science, so it wasn’t surprising when the doctor was unable to give me a concrete answer. It was, however, devastating. I was completely unfamiliar with the resources available to victims of spinal cord injuries, so I literally imagined myself confined to a bed for the rest of my life. Fortunately, those images quickly faded as I tried to face the reality of my circumstances.

While dealing with the stress of waiting for results from tests and steroid treatments, I continued my routine by pushing this strange, uncooperative body to work each day. With increasingly unsteady steps, I battled the hustle and bustle of downtown Seattle. I dealt with physical obstacles of stairs, uneven walking surfaces, heavy doors and small bathrooms, all new challenges to my once “normal” life.

Without my consent, I was forced to take my life in a new direction. In an instant, the minor concerns that plague us all were no longer relevant. How was I to cope with the everyday requirements of living, while dealing with the unknown future of my health? Fear overwhelmed me as I tried to imagine the life that was unfolding before me.

Please visit my website keeprollingon.co for more of my story – “How to Train Your Demons, finding joy while living with a disability.”

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