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” 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, or through the girls’ website:*

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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.


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

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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.


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.


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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A Father’s Love for his Daughter: Finding Hope at TMA Family Camp

By Nate Budington

On the fourth night of my daughter’s sudden hospitalization, when the diagnosis of transverse myelitis seemed pretty definitive, I was sitting in a spare wheelchair at the end of the corridor of Boston Children’s Hospital, staring out of a large plate glass window as a blizzard flew into the city. My wife and a nurse were attending to Ella and I was sent out of the room. In that seat, by the window, hearing the beeps and alarms of all that medical equipment in all those children’s rooms, I wondered how I–how we–were ever going to survive this emerging catastrophe. On Thursday, she and her brother ran out the door to catch the school bus, and by Sunday my wife and I were alternating between panic and despondency, hanging onto every small piece of hope we were offered. I acknowledged that some parents on our wing were facing something far more profound than paralysis, but at that moment, alone by myself, in tears, and at the mercy of an immune system gone haywire, I had never felt so completely isolated and untethered. One day all is good, the next day you’re falling from 36,000’.

We returned home to a welcoming and loving community of friends who made us meals, and had helped with my son while we were two hours away in Boston. They made it very clear they were there for us in any way they could be. The ramp had been built while we were at the hospital, the stair machine installed, the middle school was busily fixing desks and bathrooms, and by the time Ella wheeled into the house for the first time in two months, everything seemed sort of…normal – even if it was a new kind of normal. She transitioned into school amazingly well, and we all settled into life in a way that was oddly not too different than prior to her attack. The fear my wife and I had been battered by for weeks had morphed into a kind of bland acceptance.

But at unexpected moments, with or without Ella at my side, the isolation returned with a vengeance: when I saw teenage girls skipping down the street; when parents from her old swim team would post pictures from swim meets on Facebook; the day I gave her old bike to a friend with a young girl. That’s when I’d say to myself “No one knows what this is like.” I knew that somewhere out there someone did, but not in my life, not in my social orbit.

When we first heard about the TMA Family Camp, I was intrigued but skeptical. We were secular New Englanders and this was the Bible Belt. Would Ella fit in? Would camp rub her condition in her face or help her find a community? Would we click with the parents? Would we be barraged by zealots offering sketchy “alternative” treatments? I don’t think we ever considered not going, but being a part of a “medical condition community” was new territory for us and we were unsure what camp was going to provide or whether it was worth the effort.

But a community was waiting for us. On the first night, sitting at a picnic table with two parents sharing stories and laughing in the face of this awful thing we are a part of, I felt like I could finally breathe. These people had been in the Transverse Myelitis world for years (for us it was just months) and they were OK. They could laugh. They had perspective. They were living their lives fully. The world wasn’t over. Over the course of four days, that kind of talk happened continually. And when we met with Dr. Greenberg and his colleagues in the afternoons, I realized the value of this community, medically and emotionally.

I’m still not at peace with what’s happened to my daughter, or any of these wonderful kids. I still have my moments of sadness and anger. But we’re much better off because of the TMA Family Camp. My daughter has a family of fellow TMers, and my wife and I know that all the wonderful people we met in Kentucky have our backs as we have theirs.

Enduring your child’s illness is a brutal journey, but the human connections we make along the way–the kinship and support we get from those who are along for the ride–somehow makes things work when you think nothing will. For me, that is the essence of the TMA Family Camp. It’s inspiring to watch these kids face TM with courage. And to believe that you can carry on as a parent with the same humor, balance and wisdom as before–that’s a gift.

With Father’s Day fast approaching, thank the dads who have made a difference in your life.

Support children and families diagnosed with rare neuro-immune disorders by giving them a chance to attend our Annual TMA Quality of Life Family Camp; we will honor your loved one by sending them a Father’s Day Card on your behalf.

The TMA Quality of Life Family Camp is a unique and life changing experience that provides children and families living with rare neuro-immune disorders (ADEMAFMNMOSD and TM) a chance to experience the joys of a completely accessible camp and engage with leading medical practitioners so they can be better advocates for their own health. At camp, these children can be themselves, free of fear and stigma and not be reminded of their daily challenges.

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My Superhero. My Son.

Anthony’s Fight with an inexplicable “polio-like” illness-  Acute Flaccid Myelitis.

By Lisa DeCristoforo

To my Children; Giavanna, Angelina, and Anthony- “Don’t ever stop reaching for the stars! Fight for what you believe in, and never give up hope that you can one day make this world a better place.”

I wanted to get an update out there about what’s going on with my son Anthony… It has taken me forever to find the courage to even get an announcement out, but I just wasn’t ready. To accept something like this happening to your child is near impossible. I still haven’t accepted it and I don’t think I ever will. I don’t want my son to just accept it either. I want him to fight. I want him to have hope

My four-year-old has been in the hospital for the past 65 days. The most heart-wrenching 65 days of my life. You may have heard of it on the news… Acute Flaccid Myelitis. An extremely rare complication from an otherwise common respiratory virus, that’s paralyzing (and now killing) children. So far, this year there have been less than 100 AFM cases… My son Anthony is one of those children. He is now paralyzed. The inflammation of the spinal cord damaged his nerves, leaving him paralyzed below the hips. But just like the other thousands of questions we have, nothing is certain, little can be answered, and his future is unknown.

What I can tell you is that through all of this, Anthony is still Anthony. He’s still himself, and I didn’t lose him… He is still his happy, goofy, selfless, caring, loving self. He’s still him… he’s still my son… and for THAT, I am forever grateful! At first I only looked at what he had lost, what I had lost. I went through a period of mourning. Anthony’s neurologist at Children’s Hospital of Philadelphia (CHOP), Dr. Szperka, had said to me, “You didn’t lose him but you will still mourn. You are mourning the death of who your child once was.” And I was. It was the worst experience of my life. From being told he might not live, and if he did there was a good chance he would be paralyzed from the neck down. Possibly unable to talk, eat or breathe on his own. I felt like I myself was dying. I wanted to rip my skin off and jump out of my body. It’s a feeling like none other… Similar to the feeling I had when my brother passed away. Not the same, but just as horrific. Just as sad. An un-calming and inconsolable anger heating me to my core. An unexplainable whirlwind of emotions, followed by an unbearable amount of grief.

I couldn’t look at my son without crying. He’d cry, I’d cry… he’d smile, I’d cry. He’d say, “look mom I’m fine,” and force a smile on his face as an attempt to ease my sadness… and I’d cry. I had no control over it, I had no control over anything around me. I had literally watched as my son’s body had slowly paralyzed before my eyes with not a thing I could do to stop it. Completely helpless. All control gone. I was a wreck. How was this even happening?! You tell yourself this isn’t real, it’s just a cruel nightmare. But I never woke up. My completely healthy, athletic, energetic, beautiful baby boy had the innocence of his childhood ripped from him with no rhyme or reason as to why. His life was caught in the grasps of this wicked illness… taking its course through his body while leaving a wake of destruction in its path. That’s when guilt struck. Backtracking everywhere we went, everything I did, who we were near, where we ate. Hating myself for not protecting him. If I only would have done things differently a year ago, a month ago, five days ago… the events leading up to this day would be different and he wouldn’t have gotten sick. Every wrong decision I made was a series of events that led me to this moment… That led to my child getting sick. It didn’t matter what anyone said, this was my fault. I was being punished. I kept yelling at God to take MY legs! Take MY life! Just give my son’s back. I pleaded and bargained in every way possible…

I went mad.

I couldn’t talk to anyone. Not even my girls. My daughters, Giavanna and Angelina, knew only that their brother was sick and mommy couldn’t leave his side. I went 10 days without seeing or speaking to them. The longest I’ve ever gone by far! I couldn’t speak the words of Anthony being paralyzed without making it reality. So, I spoke to no one and stayed in full tunnel vision. The first few days felt like weeks. Looking back at those first couple days, I still can’t believe how many things had taken place in such a short amount of time. The initial distress stemming from the insane amount of times he was unsuccessfully poked with needles… 14 hours of straight screaming. Poking every inch of him, any vein they thought would suffice. Having six doctors/nurses holding him down while he screamed in pain, begging them to stop hurting him. His weak little body shook while I held him, both of us crying, in between failed attempts at administering the IV. And even through all that, he remained the polite little sweetheart he is. Always politely pleading with them to stop, “please no, please not again.” It took 4-6 male nurses and doctors to hold him down every time. And for that, Anthony became known as the Incredible Hulk!

I could have never imagined it getting any worse than those first hours. There couldn’t be anything worse than your four-year-old getting tortured by a bunch of strangers… Until, I was told he might not live. You can never prepare yourself for that. Ever. Time seemed to stand still in that moment. Then Anthony started to decline and it would become a race against time… The days blended, my body no longer needed food or sleep to keep moving. My mom and I researched everything they threw at as, from Guillain-Barre Syndrome to Lyme’s disease. Test after test, MRI, CAT scan, LP (spinal tap), blood cultures, etc. In the midst of testing, my mom got a call from my sister’s mother-in-law who also works at the pediatrician’s office my children go to. I had texted her when Anthony woke up from his nap and was unable to stand. I let her know everything that had happened.

When she called my mom, she told her about a notice the Pediatrics office had just received from the Center for Disease Control warning physicians to be on the lookout for acute weakness of one or more extremities. Warning that it could be symptoms of a “polio-like” illness affecting children and causing paralysis…. The doctors at St. Chris shrugged it off. They’d been most certain Anthony had meningitis, as did I. He had all the symptoms. The severe headache, light sensitivity, pain, etc. which we discussed could be the possible cause of the weakness due to the swelling of his spinal cord and would resolve once the swelling subsided. But evidence was still needed in order to make a conclusive diagnosis. After hours of imaging and tests… More poking, more needles (Anthony’s I.V. was removed by a nurse accidentally!), test after test… It was now Friday, it had only been three days. My mom stayed with me and neither of us had slept yet. We were now awaiting the final results of the testing. Once back in the room, I was finally able to relax myself and Anthony was starting to settle. It was just me and my son now. Anthony in his hospital bed and me next to him. Soon after, the Neurologist came in with one of her colleagues. The look on her face was immediately unsettling. I was told to sit so I grabbed my notebook and did as she told. Anthony had in fact had Viral Meningitis. His MRI came back showing inflammation of the spinal cord. But what it also showed were lesions on the grey matter of his spinal cord. They had a diagnosis… Acute Flaccid Myelitis.

With this new diagnosis, we immediately transferred Anthony to the Children’s Hospital of Philadelphia (CHOP) with the help of Anthony’s pediatrician at Lower Bucks Pediatrics. I promptly began educating myself as much as I could on my son’s new diagnosis of Acute Flaccid Myelitis. The more I read the more intrigued I became. And no wonder? The suspected virus known as enterovirus D68 is a theoretical factor that is leaving children paralyzed. Some of these children left paralyzed from the neck down, leaving them quadriplegic. What’s most puzzling is the fact that only certain children are affected in such a way. Why it is affecting some children and not all is unknown. The enterovirus D68 is a respiratory virus that affects a substantial number of adults and children worldwide. It is spread like the common cold and more often seen in the fall season. It also presents differently in children than it does in adults. Children can show harsher respiratory symptoms, whereas adults commonly present with mild symptoms or even no symptoms at all. Still unknown is also whether the virus is a direct attack on the spinal cord or post-viral inflammation causing the damage to the nerves leaving these children paralyzed. There is no vaccine and no cure.

Once at CHOP, everything seemed to feel less stressful, it was a much more calming environment and I felt like my voice finally mattered. He started the IVIG (Intravenous Immunoglobulin) treatment in hopes of attenuating the effects of the unconfirmed virus. We were in great hands at CHOP. Even so, Anthony still got worse. We were unable to move him from the curled-up position he was stuck in without him screaming in pain. Physical Therapy came in to help with his ability to move. The Neurology team at CHOP houses some of the only physicians who specialize in Acute Flaccid Myelitis. With expertise in rare neurological disorders and demyelinating diseases of the central nervous system, we were in the best place to get Anthony the help he needs.

Watching my son bereft of his ability to walk has been detrimental enough. But eventually, you get up and you keep moving. You find your strength to overcome that debilitating grief and you find the strength to fight! You’ll be surprised at the strength you have when fighting for the life of your child. Looking back, I really don’t know how I did it. I don’t know how I continue to do it. All I know is that I love my kids. It’s the most powerful force that’s ever driven me. From watching a tiny unknown person emerge from your own self, to cheering them on when taking their first steps… Anthony’s fight with AFM started 65 days ago and since then it’s been a lot of firsts all over again… The first-time Anthony was able be moved without it being excruciating, the first time he could lay flat, the first time I could hold him, the first time he sat up on his own, the first steps he took in his braces, and so on. Every new first is a celebration and he continues to give me a reason to cheer every single day!

Despite everything that’s happened, we still have so much to be Thankful for. But most of all, I am thankful for my amazing kids. I am thankful for life and for all the moments that make life beautiful. The moments that bring you to your feet with tremendous pride! The moments that bring you to tears because you’ve seen hope that tomorrow will be better! The moments that fill your heart with irrepressible joy and gratification amid all your suffering. You can find hope in despair, if you just know where to look. And I look to my son. His courageous achievements brought me back to the light when I was consumed by darkness. Anthony has made a tremendous amount of improvement and continues to amaze me each and every day. He goes to his ”therapies” to “work out” and shows me (and all the nurses) how much bigger his muscles are after each session. He has more courage than anyone I’ve ever met! He never gives up and I know he’ll never quit. He works hard all day and pushes himself till it hurts, pushes himself to tears!! He has his team here to help rehabilitate him… To rally behind him. To root for him. He has a brigade of people here at the Seashore House dedicated to helping him get that one step closer to healing. There are no words to explain how much they mean to me… To our roommates that became our friends and who we now call family, Thank You; for your strength, for your encouragement. To all our wonderful friends here at CHOP, Thank You… from the bottom of our hearts, Thank You!

Anthony has been here with the best of the best, to support and care for him. But he’s also had the support of his family. His daddy, his sisters; Giavanna and Angelina, his Mom-mom, Pop-pop, Mimi, Pap-pap, and his Aunts and uncles. And he’s also had me… His mom- his biggest fan! Here to cheer and scream, and clap and cry with every new obstacle he crushes! To lift him up when he falls down, and wipe his tears when he breaks down. To be his coach. His advocate. To fight for him… The way he fights every single day. Only caring about making the people he loves proud. Never once complaining about not being able to walk or do the things he was able to do just a brief time ago… The only thing he’s ever asked of us, “please teach me how to walk again?” And with that heart-wrenching request, we gave him a promise…

You will walk again!

There are still so many unanswered questions as to why my child must endure a lifetime of hardship because of this unknown illness known as Acute Flaccid Myelitis. But I won’t stop until I have answers… And neither should any other parent. This is not going to just go away. It will continue to tear apart families no matter your ethnicity or the religion you practice. This disorder doesn’t discriminate between the good or the bad, the wealthy or the poor, nor does it care which side of the world you live on. We need to bring awareness to what is happening and we must be vigilant!! When there is something attacking the most innocent of innocent; our children… something MUST be done to stop it.

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Do I Know You? Finding My Prince Charming

By Sue Lamoree

I met my husband ten years after my TM diagnosis, while attending the annual fundraising auction for Little Bit Therapeutic Riding Center. He’d been checking out a silent auction table when he turned and nearly tripped over me. His cordial apology/introduction was, “I’m glad you could make it.” Caught off guard by his apparent familiarity, I inadequately responded, “do I know you?” That was the start of an awkward, but rewarding courtship.

As a single woman for fifty years, I wasn’t overly comfortable with long term relationships. Add to that the complications of a disability and you have extremely intimidating dating prospects. To my surprise, we managed my special needs creatively and with a great deal of humor. He respected my modest nature and need for privacy. Together we navigated our way through the uncharted waters of girlfriend/boyfriend – disabled/caregiver. Within six months we were married.

I am forever grateful for the circumstances that led me to meet this special man. If I hadn’t been disabled I wouldn’t have been riding at Little Bit where a man named Guy was volunteering.

You can find the full story in the anthology The Healing Touch of Horses under my maiden name Sue Hutchinson:

Check out Sue’s Blog, “Keep Rolling On,” here:

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Option B means realizing that you’re reinventing yourself

By Allen Rucker

Sheryl Sandberg is the COO of Facebook, author of the mega-bestseller, “Lean In,” and one of the most influential women in America (featured in the new issue of Time). Three years ago she walked into a workout room and found her husband dead on the floor. He had had a heart event, slipped on the treadmill, and died instantly. Out of this unspeakable personal tragedy comes her new book, “Option B,” about life after traumatic events like this. It will be released on April 24th.

In writing her book, Sheryl came across my book on life after TM — “The Best Seat In The House” — and it struck a nerve. Her reaction:

“With honesty, humanity and humor, Allen Rucker takes us through the darkness of what he lost and into the light of what he gained. His ability to express all the complicated emotions surrounding loss – and to tap into the resilience necessary to recover — is extraordinary.”

She quoted from “The Best Seat” a number of times in her new book, and in conjunction with that, commissioned a video of my wife and me telling our tale of TM.

If you haven’t read “The Best Seat In The House,” check it out on Amazon. And if you get a chance, read “Option B.” It’s very moving.

For more stories, please visit the website. For Allen’s full story, please click here.

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I was Just Looking at Your Eyes

by Maria Cerio

Dedicated to my supportive family, friends, doctors, physical therapists, and kind strangers. Without you, my progress would not exist. I am forever grateful.

Lift foot, extend leg, toe up, repeat. With every stride I take, these thoughts fly through my mind, at the same speed that I picture myself being able to run when my head rests on my pillow at night.

When I was three years old, Transverse Myelitis (TM) ravaged my spinal cord. In one moment, the rare neurological disease attacked my body, rendering me paralyzed from the neck down.

My case is idiopathic, meaning no cause could be determined at the time of diagnosis or to this date. The prognosis was that I would likely never walk again. However, I defied those odds.

Today, the image of me lying motionless the night of my onset has faded from the foreground. That night, I was propped up just to flop over.

I have written and told this story, my story, time and time again—for school assignments, college essays, to those who are close to me, even to curious strangers. However, this version is different. It is the college edition. For fifteen years and counting, I have endured the penetration of botox shots, countless hours of physical therapy, and staring contests with no winners. I am now a freshman attending the George Washington University in DC—a point in my life I never thought I would reach.

The journey that began fifteen years ago with my diagnosis continues. Each day still presents its own challenges: regaining and maintaining my strength, managing chronic fatigue, relearning basic motor skills, and mastering my uncooperative muscles. On top of the obstacles and stresses of a typical college student, exist those of a typical TM patient. My college experience began with setting up physical therapy appointments at the George Washington University Hospital. I did this even before registering for classes. I arrived on campus weakened by the twelve botox shots I had received only three days earlier. The shots are intended to decrease my muscle spasms, while trying not to make me too weak. It is a delicate balance. A crack in the sidewalk could be my demise. Each placement of my foot tests my balance, strength, and muscle memory. When I finally take my seat in lecture, with the walk to class behind me absent of falls, I am elated. With hands that were once paralyzed, writing the answers on an exam makes for cramps and worn-out fingers. Next, comes the difficulty of articulating the ideas that I have struggled to memorize. When I turn in that exam, I am ecstatic. It is a life full of big little triumphs.

Integrating into a college community, which at times seems to value similarity, has been and continues to be difficult. Assimilating is challenging. I have met those who are accepting and those who are the opposite. I have met people who turn their head so far around to gawk at my gait that I think their neck might snap. And, I have met those who respect me more for my challenges and disability.

The moments in which these interactions take place are so significant to me. I oftentimes wonder if these encounters mean half as much to the other person involved. A particular memory lingers. One of the first people I met when I arrived at GW said one of the most meaningful things that I have ever been told and the crazy thing is, he may not even be aware of it.

Several weeks after having met him, my exam testing accommodations came up in conversation. He was perplexed as to why I was a student registered with GW Disability Support Services (DSS) and curious about the nature of my accommodations. In the most polite way possible, he inquired about what my accommodations were for. Now, it was my turn to be baffled. I was unsure if he was just being nice or if he had genuinely never noticed my physical disability, which is obvious in the way I walk. So I bluntly asked, “Are you being serious? I have a physical disability.” He sincerely answered, “I’ve never noticed. What do you mean?” Incredulous, I explained how most people notice that I walk differently and stare at my legs. He responded, “Why would I look at your legs? I was just looking at your eyes.” Those few words have never left my mind. It was beyond my imagination that someone would see me first, before they saw my disability.

One of the biggest reasons that I chose to attend GW was because it seemed to be the most accepting and prepared to address my disability head-on. The DSS office was knowing and sensitive. Despite its incredible resources, I still see room for progress in increasing inclusivity on this campus. I have encountered professors uncomfortable with accommodation plans, I have been involved in school clubs uncomfortable with disability, and I have attended diversity events where the attendance was close to zero.

Even on this forward-moving and diverse campus, there is a need to motivate people, to educate people, and to sensitize people on the topic of disability. I did not invite transverse myelitis into my life, but I have decided to make advocating for people with disability my passion. My goal is to make the college experience and life in general easier for future students with challenges. “Easier” means existing in a community where exclusion is replaced by acceptance.

I will not let my experiences be for naught. I am in the process of forming a new student organization on campus geared towards the inclusivity of students with disabilities, I am an official note-taker for a student with disability, and I was recently accepted to be on the Disability Support Services Speakers Bureau, which is an organization that addresses different crowds on the topic of disability, education, advocating, and spreading awareness. In preparation for the future, I am also involved in an organization which focusses on workforce diversity.

Transverse Myelitis did not leave me unscathed; it robbed me of some of my abilities, but it also left me with a far more important one: the ability to put life in perspective. I know I am fortunate. I defied the odds. Now, I plan to take my journey and do something impactful with it.

I would not change my set of experiences for anything. I am not defined by my diagnosis or my limitations; I am empowered by them.

To those of you who do not stare, I thank you. And to those of you who do, I hope this satisfies your curiosity.

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My Transverse Myelitis Story

By Gracie (age 13)

The summer of 2016 is when my life changed.  Every summer I go to my dad’s house in Memphis, Tennessee for about six weeks, and it was almost time for me to go back to my mom’s in Colorado.  I woke up on Saturday, August 6th, not knowing what was going to happen later on that day. That Saturday afternoon is when my journey with Transverse Myelitis began.

It was a humid day in Memphis. I was playing outside with my miniature schnauzer, Sam. We do everything together. We were running and jumping and having a wonderful time. Then I noticed a dog was looking at us from the other side of the fence. Sam and I went to go say hello. I picked Sam up and he stuck his head over the fence and played peek-a-boo with the other dog. It was time for lunch, so we walked back to the house. While we were heading back to the house, I noticed a little pain in the upper left corner of my back. I didn’t think anything of it, so I just ignored it.

After lunch, we went to the grocery store. On our way there, I noticed that the pain in my back was growing. It was uncomfortable, but it wasn’t horrible. Still thinking nothing of it, I said nothing. Once we were in the grocery store, it was worse. I got in the basket because I didn’t feel like walking. Then out of nowhere it got so bad that I had tears in my eyes. My dad’s girlfriend noticed that I was crying and took me home. I was lying in bed, and I was in severe pain. I was vomiting because it hurt so bad. The pain was going away, but I had a tingling sensation on the bottom of my feet. Soon, I noticed that I could not move my left leg, and my right was very weak. I could not feel anything from my breast-line down. I thought that my legs just fell asleep, so I continued to rest.

About one hour later, my dad asked if I needed to go to the bathroom, and I said yes. He asked me if there was something wrong. I didn’t want to tell him that I couldn’t move my leg, but I had no choice. I tried standing up, but I couldn’t. A rush of fear swept through my body. We drove to the emergency room. They had no answers. The doctor just assumed it was psychological. I knew for one thing that it was not that. I was and still am a very happy, life- loving person. They did MRIs and found nothing. We went back home. I was terrified to eat because I couldn’t control my bladder and bowel movements.

The next day I had another MRI. This time they found something. There was a lesion on my spinal cord from T4-T6.  We called my mom, and she flew to Memphis. The hospital in Memphis wasn’t doing anything for me, so we had to do something else. My aunt’s best friend is a doctor in Phoenix, AZ, and she said I needed to be admitted right away.  We were hurrying to find plane tickets, so my mom and I could fly to Phoenix. Everything was happening so fast. I remember watching everyone, and for a split second everything was going in slow motion. It was like I was in my own little bubble.

Once we got to Phoenix, we stayed at my aunt’s best friend’s house for the first night. The next morning we went to the hospital, and I stayed there for three weeks. They diagnosed me with Transverse Myelitis the first day. They weren’t sure what caused it, but thought it was some kind of autoimmune reaction where my spinal cord attacked itself.   While I was there I received plasmapheresis, IV steroids, and one week of inpatient rehab. I was released from the hospital on September 3rd. School started September 6th. I was so happy because I would make it back to Colorado before school started. All I wanted was to be able to be there when school started.

School started and everyone was happy to see me. My friends were fighting over who got to push my wheelchair!  My friends have been with me every step of the way. I am very thankful for them. I have been stressed about school because I miss a lot of it. I get bad headaches, and sometimes I have a lot of pain. I only go to school half days right now because I get tired, and my back starts to hurt, but I have a tutor that comes to my house. The teachers have been so incredibly helpful.

About half way through the school year, I went to Children’s Hospital Colorado in Denver and received IVIG. I have gone twice to the Kennedy Krieger Institute in Baltimore,  Maryland for physical therapy, and I will be going back again in April. My favorite thing about going there is aqua therapy! I have also been going to physical therapy at home and riding my FES bike. I can still do a lot of the same things as I did before, it just looks different. I can dance, and I am learning how to use a sit ski.

I have gained all my strength in my right leg back. I am slowly getting more movement in my left leg and ankle. I am no longer incontinent. I have been setting goals for rehab, and each time I have reached them. And even though I have not gained any sensation back, I believe I will.

Sometimes I don’t want to do my exercises, but I want to get better, so I just keep on going. The past seven months have been very difficult, but my experiences are making me stronger. I have realized the more important things in life like setting goals and working hard to reach them. I am learning to be more patient, and that it is ok to feel frustrated and sad sometimes.  Someday I want to run again, and I believe that I will.

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