In Loving Memory of Kenney Hegland

By Barbara Sattler

On May 30, 2020, Kenney Hegland, my husband of 38 years died at age 78, eight days after being diagnosed with lung cancer. He had some medical issues, but nothing serious. He’d quit smoking more than 40 years ago.

Kenney was a law professor at the University of Arizona for more than 35 years. He mostly taught Contracts although toward the end of his career he both taught and wrote about Elder Law. He had just finished, Why Did I Walk into This Room?, A Thinking Person’s Guide to Growing Older.

My husband was a prolific writer, mostly non-fiction although he wrote a prize-winning novel, Law Prof.  He criticized most legal writing as too wordy, hard to understand and pompous. Worse, it was humorless. His writing style was always easy to read and humorous. His publishers called him, “Yoda, sage of the law.”

His new book, Why Did I Walk into This Room?, covers issues you’ll have to deal with as you grow older:  estate planning, home safety, depression, retirement angst, paying for health care, senior moments, hospice, financial scams and elder abuse. While the coverage is encyclopedic, the book is filled with down-home philosophy, existential musings and humor.

Kenney’s book is available at Carolina Academic Press (paperback and ebook) and Amazon (ebook). All the proceeds go to the Kenney Hegland scholarship fund at the University of Arizona.  This fund was set up by the law school after Kenney died and will provide money to students who can’t afford law school and have an interest in practicing public interest law, such as public defenders or legal aide lawyers. Kenney began his legal career working as a legal aide lawyer.

Kenney was the most generous man I knew. He volunteered at and donated to a variety of local and national organizations and tried to instill this value in his children and students. He believed we all have a responsibility to help others and to make the world a better place.

Recently, I made a donation to SRNA in memory of Kenney. Although this is the first donation I made in honor of Kenney, I donate to SRNA every year.

I was diagnosed with transverse myelitis (TM) in 2001 after six weeks of going from doctor to doctor, having test after test, and wrong diagnosis after wrong diagnosis. I was partially paralyzed, in pain, depressed and wondering if I’d ever get my life back. A friend sent me information about SRNA (TMA at that time).  I went to their website. Just hearing about someone else who had TM gave me hope. Reading the materials on the website gave me knowledge and allowed me to meet a woman in the town I lived in who had TM.

I immediately joined SRNA.  It was free then and remains free. Over the years, I participated in a support group, went to educational symposiums, listened to podcasts, and met wonderful people who are life-long friends. I’ve had a chance to get advice from some of the docs who specialize in our diseases.

SRNA gives us so much. Family camp for families with children who have one of our diseases. Paying for fellowships so doctors can specialize in treating us. The SRNA website has a comprehensive library of articles about our diseases. SRNA funds research to find a cure. They have patient advocates and much more. No one is ever charged for any of these services.

There is no better gift I can give to Kenney’s memory than to donate to this organization who has given so much to thousands of people and their families across the world.

Barbara Sattler is on the Board of the Siegel Rare Neuroimmune 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 four novels and has committed all her publications’ proceeds to SRNA. Barbara’s books are available for purchase on Amazon.com.  Barbara also has a blog.

SRNA Care Socks: Remembering His Sitte

By Sandy Siegel, President and Founder of SRNA

Nancy and I went with our family to a farm to pick apples and pumpkins for Halloween. On a cloudy and cool fall Sunday morning, we drove out to the farm about a half hour from home. We drove separately to keep social distance, and we wore masks in the apple orchard and pumpkin fields. We are grateful to be with family, even if we can’t hug them.

As we got out of our cars and headed toward the orchard, I noticed that Leo had on his care socks. If you aren’t familiar with the socks, SRNA created these as an awareness and fundraising program in 2018. Everyone in my family has care socks.

Our grandchildren called Pauline, Sitte. This is Lebanese for grandmother. Of all the grandchildren, Leo was closest to his Sitte, and he has the most vivid memories of her. Stella has memories, but she was very young when Pauline died.

We spent so much more time with Leo and Stella than with our grandsons in Cleveland. We used to live less than a five-minute drive from them. They moved, and now it is a ten-minute drive. We regularly watched the kids for David and Kat. Pauline spent hours playing with the kids on the floor, reading to them, giving them baths, and giving them meals.

Leo was keenly aware that his Sitte was different. It broke her heart that she couldn’t walk around the house holding them and wasn’t able to dance with them. Sitte loved to dance. They understood that Kazu wasn’t just a dog, like their Luchiana. They saw Kazu pick up things for their Sitte off the floor, open doors, carry things, and get the laundry out of the dryer. They knew that Kazu was a very special kind of dog. When we had the walk-run-and roll awareness events in Columbus, the kids were always there to participate. They understood the work we were doing and why we were doing it.

When we were at the zoo or at a park, their Sitte would ride around on her scooter or was in her wheelchair. Leo and Stella often rode around on their Sitte’s lap. We called her devices, the Sitte-mobiles.

On a beautiful Sunday morning in the summer just before Pauline died, we went to a park near our homes. The kids took off their shoes and waded around in a creek and had such a good time. Their Sitte managed to get into the creek with them. That place is now known in our family as Sitte’s Creek.

Leo is a really sensitive person. He’s very much aware of his Zadie’s sadness. (Zadie is what my grandchildren call me and is Yiddish for grandfather.) I go to the cemetery on holidays and special occasions, and the kids sometimes come with me. They’ve seen their Zadie’s sadness.

Pauline loved being with these kids more than anything in her life. Regardless of how she was feeling, if we were asked to spend time with them, she excitedly accepted every invitation. Sharing the kids became our favorite thing. After Pauline died, being with the kids became difficult for me because her absence was most painful while I was with them. It is easier for me today, but that sadness is always there. The kids can feel it.

When Leo puts on those care socks, he is remembering his Sitte. He is honoring her memory and he is opening his heart to his Zadie; such big thoughts and feelings from a beautiful little boy wearing a pair of special socks.

Her memory should be for a blessing. Ana hubik, Sitte.

If you would like to join Leo in honoring his Sitte’s memory and recognizing the decades of work she did for the Siegel Rare Neuroimmune Association, you can make a donation to SRNA and receive a pair of care socks. Doing so is a mitzvah.

Donate $25 or more using this form, and you will receive a pair of care socks as a thank you gift from SRNA! (Valid only in the United States.)

Our TM Journey

By Brian Harrison

It’s so hard to remember a time when things in our lives were not affected by transverse myelitis. Sixteen years ago, I woke up and went to work like I always did. Kim was out in Dallas, Texas on a business trip and was looking forward to returning back to Atlanta in a couple days. A few hours into my day, I received a call from Kim telling me she was in the hospital for what we believed was a pinched nerve or something like that. Unfortunately it wasn’t something so simple as that. Kim went from walking that morning at 6am to being paralyzed from her waist down. The doctors worked for hours and hours trying to figure out what was happening to her body. The one thing they could all agree on was pumping her with massive doses of steroids to stop the progression of the paralysis.

Kim and I were able to talk a little bit during those first several hours. I know she was scared and so was I, being over 800 miles away and not being able to be by her side to provide the support she needed. It took the doctors over 5 days to finally come up with a diagnosis. They told her she was lucky and didn’t have multiple sclerosis (MS), but that she did have TM (transverse myelitis), then got up and left her room. If I could have come through the phone lines, I could have strangled that doctor. No explanation as to what in the world this disease was or if could be treated.

Over the next week or so of being in the hospital, we started trying to come to grips with this new pathway which had been laid out in front of us. Knowing Kim would never be able to walk again and would have a wheelchair for her mobility was hard, I’m not going to lie. But we supported each other in learning what TM was and what she could do after this attack.

Over the last 16 years, October 6th is not one of those anniversaries you want to go celebrate. No, but it’s either sit there in despair and cry about it or get up and learn how to face the trials given to you and move forward. That is the path Kim took. She has never stopped getting out and enjoying life. Kim has done so many different types of sports and began to become an advocate for the wheelchair community. If she’s not going to Washington DC to work on helping to change the laws regarding Americans with Disabilities Act (ADA) requirements, she is out doing something just as exciting.

It’s funny, before she got sick, sports were just one of those things she didn’t really participate in. Nowadays there isn’t much of anything she will not try. If Kim doesn’t like it, she just finds something else to do. Her positive attitude has provided her and so many others with the courage to get out and enjoy life. Our big joke between us is the last thing we would ever hear from her mouth is the word WEEEE!!! Kim loves to go fast and live life to the fullest.

These last 16 years have been hard on both of us, but I’m not sure we would want it any different. Kim, you amaze me each and every day with that “go get ‘em” attitude. When you get down or worn out, I will always be right there for you to help lift you up. Yeah, 16 years seems like a lifetime ago, but I wouldn’t want our lives to be any less fulfilling than they are now.

I love you Kimmer.

Qi Gong for Energy and Vitality

By Mindie Flamholz

Yesterday, I had the opportunity to watch the flow of water in the Gunpowder River outside of Baltimore, Maryland. It was a beautiful, sunny Fall day, and the reflection of the trees on the water revealed subtle changes in the colors of the leaves. The soft yellows, the gentle oranges sparkled on the water.

I gave myself time to be aware, to be curious, to notice, observe and to wonder. And, I felt grateful for the present moment.

As a Qi Gong instructor, I continue to learn how important it is for me to encourage my students (and myself) to be with the present moment. And, that is not easy in a world that moves so fast, in the middle of the COVID-19 pandemic, and with all each of us has in our own lives that can compromise how we wish to enjoy our lives.

I teach my students how to breathe – which sounds crazy when we breathe all the time. In the SRNA Ask the Expert Podcast on Helping Children and Families Manage and Cope with Stress During COVID-19, the presenter talks about the importance of abdominal breathing for our health. I love teaching my students how to take belly breaths (just watch babies), how to inhale softly, gently, and deeply, and to exhale and release tension and stress from our bodies and even to release negative emotions. Think of how we sigh, we cry, we may even scream – all ways of releasing tension and emotions. Why, even yawning can release stored up emotions!

I think of the river, its gentle flow. Our breath, its gentle flow when we are feeling relaxed, at ease, centered, grounded, and balanced.

However, when I looked down from the bridge yesterday, I realized that there are large trees that had fallen into the river. The flow of the river was obstructed. In some areas, the water flowed through uneasily. In other places, the water was stagnant, fallen leaves and debris (yes, plastic!) accumulating, unresponsive to the water coming from upstream, blocking its abundant flow, blocking its nourishing of life downstream.

Just as in the river, the flow of our Energy in our bodies can be slowed, can be blocked, or can flow abundantly and easily. In Qi Gong, we work with our bodies’ Energy to help prevent blockages, to help remove stagnation, and always to help support the smooth flow of our Qi.

Our Qi – our Life Force Energy – the Energy that nourishes our cells, our Organ Systems, our health, and our vitality. The river may need a storm to move stagnation, to shake the fallen trees loose, to restore the abundant flow of water. For us, we need the Gong, the practice and skills of working with our Qi to keep it moving, to shake loose and to clear (moving our bodies or even imagining it in our minds) negative energy or negative feelings that accumulate – feelings such as sadness, grief, fear, insecurity, anxiety, lack of trust, anger, disappointment, frustrations, jealousy, hatred, hastiness, impatience, lack of joy, lack of love, worry, and overthinking.

When we let go, when we release these negative energies and emotions, we make SPACE for the more positive energy and positive emotions – for confidence, strength and courage, for trust, especially in ourselves, for kindness, for ourselves and others, and generosity and support, for love, patience, and peace, for feeling grounded, centered, and balanced within our own bodies, within our own being.

So, how can Qi Gong help do that? Through focused breathing, gentle shaking, and clearing movements, through healing sounds and healing colors, and through gentle, mindful, meditative movements, we can shift our energies. Think of the river. Not all parts of the river are as “stuck” as what I reflected on. Some areas flow freely, some need a gentle stirring of rains, a gust of wind to keep the flow abundant and free. With us, it’s the same.

Our intention, our attention can focus on feeling “good”. The river has no control over its flow.  We can control our energies. To whatever extent we can change our flow of energy, we can choose to do so. As one of my instructors suggests, “This is simple. Simple isn’t always easy.”

Time, perseverance, attitude, and Space to let ourselves be in the moment are always part of who we are. Just as all the positive attributes I mentioned above, these are always inside of us.  It is up to us to be curious, to be aware, to notice, to wonder, and to be who we are so capable of being.

Qi Gong breathing and movements have been around for over 3,000 years. At a time when there was no technology, no Googling info, no turning on the TV or even the radio. No cell phones. There was time to observe Nature – the movement of the water in rivers, the weather, the strategies of animals, the growth and decay of plants, the giving of fruits and seeds, the regeneration of the seasons. In “practicing” Qi Gong, we notice and acknowledge the wonders of Nature in each of us. Our ability to be resilient like trees, to be playful like monkeys, to shake off stress like animals, to change like the seasons, and, yes, to flow gently like water.

Importantly, Qi Gong breathing and movements are available to everyone. They can be done seated, standing, in wheelchairs, and in bed. Movements can be modified and adapted to our own bodies’ abilities and even can be imagined. We can hear the breeze without being outside. We can feel the warmth of the Sun on our bodies while we are inside on a cold day. We can close our eyes and smile at the playfulness of monkeys while we are stuck inside during quarantine. We can breathe like a wave with the ocean only in our minds.

Our practice of Qi Gong moves into our everyday lives, in how we breathe, in how we shift our emotions, in how we choose to respond in place of reacting, in how we are gentle with ourselves and with others, aware, present in the moment. Building the next moments breath by relaxing breath.

Thank you for allowing me to share this information with you. I discovered Qi Gong while watching a fundraising program on Maryland Public Television. The breathing, movements, and information shared by Lee Holden, the Qi Gong Master, held my interest so much that I sprung for it and bought the complete DVD and CD set!

A couple of years later, I became certified through Chan Zhang and through Lee, have studied with other Masters, and have been teaching ever since. I teach children, seniors, people with aphasia, those who have suffered strokes, women who have been abused, individuals with dementia/Alzheimer’s, caregivers, and all who want to improve their health and wellbeing – just as I have.

And, please remember, just 3 Belly Breaths, in through your nose and out through your nose or mouth, can shift how you feel any time of day. I invite you to try it for yourself in this present moment.

Contact Mindie: mindie@enerqiinhealthandhealing.com

Opening of the US Olympic and Paralympic Museum

By Amanda McGrory

On June 20th, 2019, the Board of Directors of the United States Olympic Committee (USOC) voted unanimously to change the name of the USOC to include their commitment to representing, supporting, and uplifting Paralympic sport within the United States. The United States Olympic and Paralympic Committee (USOPC) became just one of four national Olympic committees around the world reflecting their dedication to Paralympic athletes in the name of their organization. Within minutes, visible changes started to occur – employee email addresses were updated from “.usoc” to “.usopc”, social media channels were merged into one “@TeamUSA” handle, and the US Paralympics website disappeared as its athletes, sports, and competitions were officially integrated into teamusa.org.

As soon as the decision was announced, the still-under-construction US Olympic Museum chose to follow suit and immediately change its name as well. The brand-new US Olympic and Paralympic Museum had already made their commitment to supporting athletes and visitors with disabilities a major focus during the planning process; including “Paralympic” in the title was just the final step. Slightly over a year after the name change, the US Olympic and Paralympic Museum celebrated their grand opening in July of 2020. As the archivist and collections curator for Team USA, I was fortunate enough to be invited to a soft opening and taken on a private tour by a group of the designers and the CEO, Chris Liedel.

The planning committee of the Museum set a lofty goal to be the most accessible facility of its kind in the world, and their commitment to that goal is evident from the moment you enter the front doors. Each guest receives a personalized key card upon registration, which is then activated at an accessible kiosk inside the Museum or by scanning the card’s QR code with any smart phone. Guests are given the opportunity to enter personal information, select their favorite Olympic and Paralympic sports, and note any accessibility needs – including mobility and hearing impairments, and sensory sensitivities. As guests move throughout the Museum, sensors read the key card’s embedded RFID, and use that information to personally welcome you to different exhibits, display information related to your favorite sports on the different interactive screens, and even automatically reduce lights and sounds in certain areas to create sensory-reduced environments.

The Museum’s commitment to inclusion is demonstrated in the design of their exhibits as well. Instead of dividing the different galleries to separate out the different histories of the Olympic and Paralympic Games, the two are presented together. The historical exhibit begins thousands of years ago with the ancient Olympic Games, moves forward to the birth of the modern Olympics, and finally, in the 1960s introduces adapted sports and the first Paralympics. Winter and Summer galleries display artifacts from well-known Olympians (such as Serena Williams and Peggy Fleming) alongside their equally illustrious Paralympic counterparts (such as Jean Driscoll and Oksana Masters). The “Lab” shows technological improvements and advancements in running prosthetics for athletes with amputations, alongside the evolution of the running shoe, and how synthetic materials replaced leather and suede for reduced weight and increased durability.

As a veteran athlete of Team USA and Paralympian, it’s been an incredible experience to have the opportunity to play a role, however small, in the advancement of Paralympic sport in the United States and around the world. I’m so proud of the US Olympic and Paralympic Committee, and the Museum, for their increased commitment to the Paralympic movement and the visible changes that have occurred thus far – as well as those on the horizon. There’s still room for growth within the greater disability rights movement in the United States, but representation does matter, and inclusion is powerful. This is a big step that will hopefully serve as an example to be followed by other organizations as we continue to move forward on this journey.

For those interested in visiting, the Museum is located in downtown Colorado Springs, CO and open daily from 10am – 5pm, with extended hours on Saturday. You can find more information about the Museum and plan your visit at their website: usopm.org

Amanda McGrory contracted Transverse Myelitis in 1991 at the age of five. After struggling for years to adjust to her new life with a disability, she was introduced to wheelchair sports through the Variety Club of Philadelphia. Amanda continued with sports through high school, securing an athletic scholarship to the University of Illinois at Urbana-Champaign. Amanda is a three-time Paralympian in Track and Field. In July of this year, she accepted a position as the new Team USA Archivist and Collections Curator and made the move to Colorado Springs, Colorado where she works at the US Olympic and Paralympic Committee headquarters building.

Looking for Your Stories and Experiences

By Elizabeth Chatelain

My name is Elizabeth Chatelain, and I’m a filmmaker and writer from North Dakota, now living in Brooklyn. My background has mostly been in documentary films, such as My Sister Sarah, which was about my sister’s struggle with drug addiction and recovery. I have also worked as a documentary editor on programs for PBS Frontline, HBO, and most recently Disney+.

As I’ve moved into writing screenplays, I find myself always drawn to stories of women on the margins. Whether the issue is homelessness, health care, addiction, mental illness, disability, or simply being from a working class background, I feel women’s stories are so rarely portrayed accurately in film. With my background in documentaries, I know the importance of interviewing for research. While many filmmakers rely on books or Wikipedia, I find it absolutely crucial to interview people face to face (or now via Zoom) to begin to understand other perspectives before portraying them on a page or on screen.

A few years ago, a family friend living in Minneapolis suddenly lost all feeling in her body. After days in intensive care, she was finally diagnosed with transverse myelitis. It took a lot of time and physical therapy, but she was able to regain the strength to operate a motorized wheelchair, has gone back to work part-time, and takes care of her young son. I am currently working on a film script where the main character is diagnosed with transverse myelitis, and it is my hope that I can interview as many people with TM as possible, because I know everyone’s story is different. My goal is to present the everyday life of a person with TM. To confront the stigma. To confront the stereotypes. Stereotypes about disability and beauty, strength, sexuality, and things that are uncomfortable for able-bodied people. I am looking for anyone willing to share their experience of TM with me, so that I can begin to better understand the condition and present that experience as truthfully as possible.

If you are interested in contacting Elizabeth, please email us at info@wearesrna.org, and we will put you in touch with her.

Wheelchair Accessible Landscape Photography

Lewis Carlyle is a self-taught landscape photographer and documentary filmmaker. He has recently introduced a series on accessible photography for individuals with disabilities. Below is an excerpt from his first article in the series. You can find the full article here. For more photography adventures you can visit his website, or find him on YouTube and Facebook.

By Lewis Carlyle

If you or someone you know is living with a disability, rest assured that America offers a huge variety of opportunities to experience the great outdoors. Furthermore, photographing stellar destinations is actually much easier than you might think, so long as you know where to go. Whether you’re sporting a pair of crutches, a prosthetic limb, a wheelchair, a rascal, or whatever you use to get around, this guide will get you started on the path to discovery.

Before we begin, let us first dispel the rather hilarious misconception that all landscape photographers are super-human athletes who casually crush triathlons while munching on kale. In fact, this bit of mythology could not be farther from the truth. Most landscape photographers actually go to great lengths to avoid physical activity (unless it involves reaching a destination which serves pizza and beer).

Ultimately, the point we’re trying to make is that landscape photography is not just reserved for elite hikers. Landscape photography is accessible to everyone. This means that people with disabilities can be very successful at creating stellar images of the world’s most beautiful destinations. All you need is a little ambition and a good roadmap to point you in the right direction. And with this, we arrive conveniently at our first wheelchair accessible destination.

MAROON BELLS

ASPEN, COLORADO

GPS Coordinates: 39.098658, -106.940169

For our first stop, we find ourselves in central Colorado under the towering peaks of the legendary Maroon Bells. Now, pretty much everyone on the landscape photography scene has marked the Bells as a bucket list destination. There’s a reason why artists flock to this destination—it offers the ultimate Iron Chef recipe for landscape photography.

Situated at the end of a Maroon Creek Road, the Bells are just a short drive from the nearby town of Aspen, Colorado. Driving to the Maroon Bells requires a park pass which can be purchased from the ranger station located on Maroon Creek Road. You’ll want to make sure to arrive very early in the morning. This is a popular destination and once the parking area is full, the only way to access the Maroon Bells is by catching a bus at the visitor center. The bus system is also wheelchair accessible, but it does get a little crowded.

Maroon Creek Road ends in a large, paved parking area which offers plenty of maneuverability for vehicles of all sizes. From the parking area, a flat, wide, compacted dirt trail leads a mere 40 yards to the shoreline of Maroon Lake.

Now, as long as the area is not covered in deep snow, this trail should be a piece of cake for both manual and electric wheelchairs. This is the optimal location for capturing one of the most stunning scenes in all of America.

Snow-capped mountains rise above a brilliant aspen forest which provides excellent views in both summer and fall. And, given the right conditions, the entire scene is reflected perfectly in the clear waters of Maroon Lake. This gives you two landscapes for the price of one and seals the deal on yet another dazzling destination for your photo portfolio.

GARDEN OF THE GODS

COLORADO SPRINGS

GPS Coordinates: 38.881396, -104.879518

The next stop in our little Colorado adventure is one of my personal favorites. Garden of the Gods is conveniently located inside the city of Colorado Springs. This park is dominated by its signature red rock towers which rise from the earth like otherworldly crimson stalagmite.

Garden of the Gods is a highly accessible destination with several large parking areas and an intricate network of wide, flat, paved trails. The primary parking area has a generous allotment of handicapped parking spots. Additionally, the parking lot transitions smoothly to the paved trail system. Virtually every aspect of this park is easily passable by wheelchair.

The new pavilion overlook is directly connected to the primary parking area. It offers a large, curving ramp which provides visitors with an elevated vantage of one of the best views in the entire park.

Garden of the Gods also features a paved road which circles the entire perimeter of the park. This road offers excellent views of the towers; and if I’m being perfectly honest, I have definitely captured my all-time best images from the road. Show up in the summertime and the setting sun may even spark up a nice rainbow.

Evenings in Garden of the Gods are a great time to watch Mother Nature send up the fireworks, making this one of the best wheelchair accessible destinations in all of Colorado.

DALLAS DIVIDE

SAN JUAN MOUNTAINS

GPS Coordinates: 38.099462, -107.871468

Situated in western Colorado, these mighty rock giants are a part of the greater Rocky Mountains which span from the central United States up into Canada. Known as the Switzerland of America, these jagged peaks rise above endless aspen forests.

The San Juan Mountains are crisscrossed with all kinds of quaint country roads which offer spectacular views of the local landscapes. One of the best examples of this can be found on the Dallas Divide, where Highway 62 spans between Ridgeway and Placerville.

MORE GREAT LOCATIONS COMING SOON

When you hit the road as much as I have, it soon becomes clear that the United States offers excellent travel provisions to people with disabilities. From the fast-paced interstate highways to the quaint country backroads, our nation is a vast network of overlooks and vistas which will keep any landscape photographer busy for years on end.

The three destinations we visited in this guide represent a mere handful of the fantastic locations that are fully wheelchair accessible. If you are a person who believes that landscape photography is beyond your reach, now might be a good time to reconsider, and watch as a whole new world of opportunity opens up.

In future guides, we’ll continue our exploration of wheelchair accessible places. It’s a great big world out there and much of it is right at your fingertips. All you need is a good roadmap, a little motivation and a splash of adventure. Follow the light, and the world is your studio.

A Life Forever Changed

By Melanie White

On April 28, 2014, I was at work and waiting to go to my nephew’s baseball game at 4:00pm that afternoon. At about 3:00pm, my arms started to ache really badly from my shoulders down to my fingertips. I thought it was just from being on the computer all day. I went ahead and went to the game. After I got there, I started to feel bad but I wasn’t sure how, exactly, just off. I tried to open my water bottle and could barely get it open. So I got up and tried walking and immediately told my sister something was wrong. She got my husband, and we headed to the hospital.

By the time we got there I was weaker, and my whole body was tingling. I couldn’t keep my legs still and felt pain but wasn’t sure where the pain actually was. The emergency room (ER) doctor just assumed I was there for pain medication and didn’t do anything for me for a while. At one point he came in and I told him I needed something; my body just felt so strange. He asked why my eyes were red. I said, “Uh, from crying!” Then he wanted me to stand up, and I said I didn’t think I could now. He said to try, so I did. He was on one side, my husband was on the other, and a male nurse was in front of me. I went straight down! They caught me before I hit the floor, and he finally started to treat me. I had a CT scan which didn’t show anything, and I was admitted.

By the next morning, I was paralyzed from the chest down. My doctor came in the next morning and said they didn’t know what was wrong, but I needed to be transferred to a hospital that could find out. So I was sent to a hospital two hours away by ambulance. Tests began, things were ruled out, I received IVIG, and finally a diagnosis of transverse myelitis. I went to rehabilitation after about a week and began learning to walk again. I had to do physical therapy (PT) as well as occupational therapy (OT) to be able to use my hands and get them stronger. I had to learn how to make beds, fold clothes, and make a sandwich all from a wheelchair in case I couldn’t walk again. Fortunately, I can walk but with a walker and a very bad limp. I have damaged nerves (C5-7), and my hip flexor will not work so I can barely pick up my leg, plus I have foot drop, so my left leg barely clears the floor. The whole left side is a problem. I have a weak hand and burning nerve pain in my arm, hand, hip and left buttock. It’s really hard to sit most days. My lower leg is numb but feels temperature and is tight all the time. I have lost my balance. My torso has no feeling, my right leg doesn’t feel hot or cold, and my feet think they are cold, all the time!

After about a year and a half, my primary care practitioner (PCP) wanted me to go to Mayo Clinic, as he just wasn’t completely satisfied. I did, because I was sick of the walker by this time and just knew they could fix me. I received tests, bloodwork, and a diagnosis: spinal cord stroke and possible transverse myelitis! So, I will always have the walker and all of the other issues listed as well as bladder problems, fatigue, etc. Oh, did I mentioned my husband divorced me after about two years? He just hadn’t been happy for a long time, supposedly! But as I read in another blog, no one can understand the invisible effects of this disease unless you have it!

It Has Been Ten Years

By Jeff Berger

Ten years ago, I woke up to find my right hand was asleep, but then it just would not wake up. This was the beginning of a walk-through hell. Doctors and tests and more tests. Words tossed around, like multiple sclerosis, cancer, amyotrophic lateral sclerosis (ALS) and prognoses that would send shivers through any poor soul. As each week passed, I would have another appendage affected: left hand, right foot, left foot, lower torso and then upper torso. The pain was 24/7 and a twelve on a ten-point scale. No sleep and no answers, just fear of the unknown.

On April 8th, my body in its weakened state finally gave up and I passed away. I was revived and taken to a hospital where they finally discovered by an MRI that I had a lesion at the level of C2, and I finally had a diagnosis, transverse myelitis (TM). But what the heck is that?

I spent the next five weeks in the hospital and rehab. Initially I heard that I might not be able to walk again, but I resolved to prove them wrong. I had to learn how to walk again with no feeling in my feet. I had to learn how to use my hands again by using my eyesight to replace the feeling that I had lost in my hands. I progressed from a wheelchair to a walker to a cane and finally independent walking… but this took place over years. I wore an attitude that I could not just accept the status quo, I had to fight with every fiber of my being to maximize my remaining skills and learn how to appreciate each day and find joy rather than sadness over the “what ifs.”

It is now ten years later, and there is not a day that has gone by that pain has not been my constant companion. But… I have a full life. I can work out in my shop creating tables, bird houses and other projects, (currently working on building a 5-level cat tree). I can do the grocery shopping and clean the house. My wife and I have driven cross country three times and traveled to Europe, Hawaii, Mexico and many other points on the map.

I consider myself to be the luckiest guy in the world. My point of writing is not to minimize the horrible after-effects of TM but to express to all who suffer that you can never give up, you have to stay positive and believe. It may not be perfect, it may not be how you envisioned life, but it is your life. Treasure life, and you may just surprise yourself, as well as the doctors. I send this message to all who are affected by these various neuroimmune diseases: I wish you peace, health and good miles before you.

The Way I See It

By Maleah Moskoff

April 19th was the 3rd anniversary of my rare myelitis diagnosis/spinal cord injury. I have heard others call it their “crappiversary”; I choose to see it so differently, and I’ll tell you why. If you knew me prior to April 19, 2017, let me re-introduce myself. My name is Maleah, and three years ago I walked into the University of Wisconsin (UW) emergency room (ER) in pain. After being dismissed by urgent care professionals twice and told I had a virus, I grew progressively worse. A spinal tap confirmed something was not right, and it was neurological. I was beyond scared. I was not familiar with emergency care, and my life up to this point was pretty average in the accident department. Flash forward three weeks—I was in a room somewhere in the UW and paralyzed from the chest down. My neurologist’s note read: “Our best diagnosis has been a monophasic viral infectious encephalomyelitis (brain and spinal cord) vs. a post-infectious encephalomyelitis (the result of the immune system’s reaction to a viral infection).” They told me, “You’re one in a million.” Around day 21, I was discharged to an inpatient rehabilitation hospital where I would live alone, working out three hours a day with Occupational Therapy (OT)/Physical Therapy (PT).

Ok, you’ve heard this story. But what I have to share today, that many more might relate to, is being in crisis. I was isolated for seven weeks from my home, my work, and my life as I knew it. Fortunately, family could visit me. I couldn’t do life for myself. I depended on others for getting me food, bathing me, toileting me, and transferring me from bed to wheelchair. I was vulnerable. My job was to give my all for three hours in the gym with OT/PT. I did my work, sometimes in tears, but I had goals—walk again, regain my independence, re-join my family and my home. It was sad, lonely, and hard. I came home in a wheelchair, adjusted to my surroundings, sometimes felt like I was Jimmy Stewart in “Rear Window”, and I am here today to tell my story. It did not last forever, but my life as I knew it would never be the same. I have chronic pain in my back, the “MS hug”, clonus and neuropathy in my feet, BUT I can walk, and I have hope and lots of love. I have an attitude of gratitude for my crisis. It shifted my perspective on time and what is important. Less FOMO (fear of missing out) and more JOMO (joy of missing out)!

Hope can take you to places you’ve only imagined and there is no “going back.” There is a new path, a new normal. There is adjusting, pivoting, and creative changes. Acceptance is difficult for humans, but the sooner you acknowledge your situation, grieve the old way/old life, the sooner you might see the miracles in the present moment. I have days where “I am over it,” and I am sure you do too, in this present crisis. Cry, scream into a pillow (not at your housemates), draw, write, make music… find your strength in the now. “No storm lasts forever.” I have taken a long pause once before, and I can tell you a thing or two about life after the play button is pressed again. Yes, it will be different, but so are you. Embrace the “Yahtzee shake.” Enjoy the slow-down. You didn’t choose it so maybe it’s hard to be “out of control.” Slowing down feels weird when we’re so used to “go, go, go.” Busy has been glorified for too long. I’ll leave you with this. I wouldn’t change a thing. All the heartache brought me to this place. I like who I am and who I am becoming. 

So next time you think you just can’t handle one more day, let me tell you something, you can and you will! Forward…It’s the way. “Not all storms come to disrupt your life, some come to clear your path.” We’re paving a new road, one that may be smoother and brighter.