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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Brayden’s Journey

By Natalie Arabie

Brayden, a very athletic 12-year-old boy, was diagnosed with Transverse Myelitis from the T-5 through T-7 level on February 1, 2018. His symptom onset began the evening of January 31, 2018. He felt like his foot was sleeping as he began baseball practice. He started jumping and running, trying to wake it up. When he bent down for a baseball, the feeling traveled up his leg to his waist, and down the other leg, causing his legs to collapse on the field.

Once at the emergency room (ER), Brayden was misdiagnosed by the ER doctor and was ready to be released. His father and I insisted that it was much more, and that he be admitted for further observation. The following morning, a neurologist made contact with me discussing his symptoms and the status of his diagnosis. Basically, the neurologist diagnosed him by phone with TM. That’s where the MRI and spinal tap came in and discussion of treatment and transport to another hospital.

After 5 days of steroid treatment in Lafayette, Louisiana, Brayden was moved to Texas Children’s Hospital (TCH) in Houston to further his treatment and look at other treatment options since there had been no change in his status. TCH decided on continuing the IV steroid treatment along with intense physical therapy and occupational therapy.

After a little over a week, Brayden, one determined young man, was released to go home with continued medications and therapy. After just three months, he was released to go back to school and sports. With some weakness in the ankles and knees, he refused to let it overcome him. He still has times of back pain and bad headaches but always pushes through and keeps a smile. The support of his friends, family, coaches and community has been a big part of his healing.

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My Journey with TM

By Jessica Gilmore

It was early in the morning of October 7th of 2007 when I was awakened by severe pain shooting down my right arm. As I tried to stand, thinking it was simply a nerve irritated by the way I had been sleeping, a sensation washed through my entire body from the shoulders down and I could no longer support my own weight. A very defined band circumscribed a line around my shoulders, directly over the center of my sternum. Above that line, pure normalcy. Below that line, zero appropriate sensation accompanied by severe, electric-shock type reaction to touch. I could no longer lift my arms, could not sit up on my own, and had no ability to contract a single muscle below my shoulders. I was convinced that I was experiencing a side effect of a very low dose muscle relaxant (occupational hazard of being a pharmacist!) and asked my husband to drive me to our community ER at the hospital where I worked. This ride was the single most painful experience of my life, including childbirth. A short helicopter ride to the university hospital an hour away, and I began to understand something was very seriously wrong. In the ER, the debate between a neurology versus orthopedic admission began after results of the four-hour MRI showed swelling of the spinal cord between the C6 and T2 vertebrae. Finally, neurology won out and I was transferred to the medical Intensive Care Unit (ICU) under the care of the neurology team. IV steroids were started along with precautionary antibiotics and antivirals (to rule out meningitis). Slowly, after a few hours then days, my arms began to cooperate again, and I began to regain some feeling in my hands. My legs were still like lead and my skin screamed at any touch or temperature extremes.

I cried three times during my ordeal, the first being in ICU. Anxious for answers, I asked a nurse if there had been any word of a conclusive diagnosis to which the nurse very clinically replied, “Oh it could be anything. They’re considering Lou Gehrig’s disease, among other things”. The possibility of developing a progressive musculoskeletal disease at age 26 was terrifying. After a few days, I was transferred to the regular neurology floor for further testing though all things seemed to point to transverse myelitis. Large academic groups came from several specialties and stages in education to study my case. At times some learners and teachers (mostly physicians) would forget there was a person connected to this disease and insist on demonstrating my painful reaction to touch for their groups. I could only support academia so much before I had to end the lessons permanently. It was here in the neurology unit that, after not seeing my 16-month-old daughter for days, my family was able to bring her in. She climbed up in my hospital bed, smiled her tiny face up at me, and laid her head on my chest. This was the second time I cried.

After 10 total days as a hospital inpatient, I was transferred to an inpatient rehabilitation facility. This was one of the most awful and degrading experiences. I didn’t have the ability to defend myself or run from harm, should it arise (e.g., fire or, God forbid, assault), which caused me great anxiety and panic. I begged anyone in my family to stay with me through the nights.

I began to relearn the muscle movement for walking again in a huge Transformer-looking machine called an auto-ambulator. After two weeks as an inpatient and several more as an outpatient with this facility, I started physical therapy back at my community hospital where I felt the most at home. After three months, I regained enough mobility to walk with the minimal assistance of a cane and was able to return to work.

My total progress since that year has been about 90%. I have significant sensory deficits in my hands, legs, and feet and still cannot feel the activation of a few major muscle groups. I can walk and even run a little but with a gait disturbance that tends to be more predominant in extreme cold. I worked with a personal trainer for regaining strength and took up yoga for balance in the first years following the illness. Both of these things I cannot recommend enough. I have found some of the biggest rewards, however, in Brazilian jiujitsu (Uha, Gracie Barra!!). TM left me lacking speed, balance, muscle mass, and coordination, and this grappling-based sport has helped me feel safer when I am out on my own or with my children (who also train). Best of all, jiujitsu is almost entirely ground-based so falling down is actually part of it! I humbly and gratefully received my blue belt in May of 2018, the biggest physical accomplishment I’d made in 10 years.

I’ve left out many of the painful details of this story, including the third time I cried, in the name of brevity. I am happy to share if anyone would like to hear it individually. In closing, I will share my most heartfelt thought from this experience: I never once asked “why me”. Because if not me, who then? My daughter? My husband? My mom or dad? No way. I was and still am happy to carry the burden if, somehow, it meant that someone else I loved did not. Additionally, my determination and resolve for challenges has grown indomitable and I chose to thank my TM for giving me a more grateful perspective of life.

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Ashlee’s NMO Story: A Fighter for her Family

By Ashlee Olsen

My name is Ashlee. Thank you for taking the time to read my story.

In 2004, about six weeks after giving birth to my son, I developed my first symptom. One morning, I woke up and couldn’t see out of my right eye. I visited all the local emergency rooms trying to figure out what was wrong. I was constantly told by all the ER doctors that I was a 21-year-old looking for attention. Fast forward one year later – it happened again but this time in the left eye. I ended up going to an ophthalmologist who informed me that I was probably going to be diagnosed with Multiple Sclerosis within the next ten years.

In November of 2005, I woke up completely blind! I begged and pleaded with my ophthalmologist to get a steroid treatment but unfortunately, he chose not to do that because he felt the treatment wouldn’t work. In a desperate attempt to salvage my vision, I ended up finding a doctor who would give me a steroid treatment, but at that point, it was too late. Additionally, in December 2005, my mother became very sick. In order to be by her bedside, I put my health on hold. Sadly, I lost her the following month.

I decided to visit the University of Florida Health Shands Hospital. Here, I saw an ophthalmologist who was 99% sure I had Neuromyelitis Optica. He immediately admitted me so I could undergo intravenous immunoglobulin (IVIG) but as my luck would have it, it was once again, too late. I will never forget the day my doctor sat down on my bed and told me that I had tested positive for NMO. I vividly remember looking at him, pleading, saying, “I’m too young to die.”

Soon after, I started a drug called Imuran. Even while on the new drug, I relapsed. This relapse was different. During this relapse, I couldn’t feel my right leg. It moved, but I didn’t feel it. I was rushed to the hospital where I underwent a procedure called plasmapheresis, also known as plasma exchange (PLEX).

In December 2008, on top of dealing with the stressful nature of my debilitating disease, I decided to leave my son’s father; he was becoming verbally abusive and I could no longer bear it. I won’t lie, I was considerably stressed wondering how I would make it in life while being legally blind and caring for a 4-year-old child all on my own, but I’m a survivor and I was determined to make it.

Here comes the good news – I finally met the love of my life in 2009. In November 2011, I stopped my medication and attempted to have another child. I was nervous, but it was worth it. In October 2012, we were blessed with a beautiful baby girl and in May of 2014, my husband and I exchanged vows.

NMO has changed my life in so many ways; I’ve overcome some very difficult, unforeseeable obstacles. Even though I’ve lost my eyesight, which so many take for granted, I’ve never allowed this disease to hold me back. Despite all my struggles, I feel truly blessed with my two beautiful, healthy children and doting husband. I’m also happy to share that, in spite of losing a significant amount of vision, I’ve started my own photography business. Photography is one of my greatest passions and I’m so grateful that I am able to do what I love. Lastly, it is with great joy that I announce I have been relapse-free for 10 years! Let’s work together, find a cure, and help illuminate the darkness of Neuromyelitis Optica!

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