Gordon Reid - TM Warrior & Global Wheelchair Tennis Champion

Gordon Reid, Grand Slam singles champion and Paralympic gold medalist serves up an inspirational message explaining how he overcame adversity at a young age to become a global star. A week before his 13th birthday he succumbed to Transverse Myelitis, leaving him paralyzed from the waist down. By 16 he joined TEAM GB to compete in the Paralympic Games in Beijing. Since then, Gordon’s won at Wimbledon, the US Open, and both the French and Australian Opens. Listen to his inspiring story.

Young TM Basketball Star Competes with team usa

From the Original Article by Jennifer Rios, May 6, 2019


Holy Family High School senior Riley Ljungdahl, who will be competing in Thailand with Team USA’s wheelchair basketball team while her classmates will be walking the stage, on Wednesday celebrated graduation a few weeks early.

The U.S. team leaves Wednesday for a week of training followed by a week of International Wheelchair Basketball Federation competition, which meant she would have to miss Holy Family’s commencement ceremony on May 23.

Over the past four years, Principal Matt Hauptly said he has seen Riley balance academics, basketball and occasionally medical issues while setting an example for other students. Students genuinely like her because she’s a nice person, he said, and see her as more than her story.

Riley lettered in basketball because the school accepted her wheelchair games as qualifying. Riley also has served as a student ambassador and member of National Honor Society.

When she was 11, Riley was diagnosed with a rare neurological disorder called transverse myelitis, caused by inflammation of the spinal cord. During a softball practice in October 2011, she felt a twinge in her right shoulder blade that quickly turned into a shooting pain in her back. Her mother, who was a nursing intern at the time, thought it could be a pinched nerve. After the pain didn’t subside, Riley ended up in The Children’s Hospital in Aurora.

An MRI revealed transverse myelitis. She spent two months in the hospital as doctors tried several treatments to reverse the paralysis, but when none had an immediate effect, she returned home in December 2013.

Riley, who wasn’t ready to stop playing sports, immediately began searching for those she could play from her wheelchair. Since then she has traveled the world playing wheelchair basketball and has met all kinds of people, including someone who offered her an internship with Dell while she is a student at the University of Illinois, one of only six colleges in the US that offers a wheelchair basketball program.

Riley plans to study international business and communications while continuing to train with the U.S. team. 

Riley’s paralysis is most likely permanent, and doctors are still not 100% sure what caused it. Scientists are working on an experimental treatment in which a neuron patch connects the uninjured upper back to the uninjured lower back to transfer signals, she said, but she wants more testing to be done before opting for the procedure.

Transverse myelitis does not define her: Riley believes her disability has made her a better person. “I honestly feel blessed,” she said, that her life has taken such a positive turn. “I just always have to think on the bright side.”


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

By Sue Lamoree - Reprinted from the TMA Blog

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 l

Living with a Disability."

Watch for More from Sue

Sue and her husband have a deep love of horses. She has introduced us to Equine Therapy for Transverse Myelitis. Will bring this story to you soon along with a great video.

Find out more

A man's courageous fight with city hall while on ventilator


We all know folks suffering from transverse myelitis that simply refuse to let this disease ruin their lives. They maintain a positive attitude, they continue to pursue their dreams, they won’t give in. Here’s a wonderful story about a true TM Warrior.

Andrew Swidzinski has trouble walking. He can barely hold his head steady for any length of time. Even the ability to swallow has become arduous.

The 33-year-old notary and community activist is now considered disabled, his body ravaged by a rare disease — Acute transverse myelitis — that attacked his spinal cord last August and left him clinging to life on a hospital ventilator for six months.

Swidzinski became disabled seven months ago after he was stricken with a polio-like illness, virtually overnight. “I woke up Aug. 19 and I felt very tired. The next day I couldn’t move my arms. I was rushed from the Lakeshore to the Neuro. Then I was in intensive care for four months and on a ventilator.” 

His recovery has been slow and, so far, without miracle.

Despite the debilitating ordeal, Swidzinski has remained engaged — from the confines of his hospital bed — in a feisty, citizens-led movement to halt the demolition of the Pioneer bar and preserve the heritage of the iconic Pointe-Claire Village.

In fact, even in his darkest hour at the intensive care unit of the Montreal Neurological Institute, with much of his upper body paralyzed, Swidzinski still found the strength to pen a speech that was delivered by his mother, Linda Proulx-Swidzinski, at a demolition appeal meeting in September. The moving proxy speech brought the crowd to its feet.

“I wrote the speech with one hand, when I didn’t have the ability to talk.  There was a period where I was not able to talk or swallow,” Swidzinski recounted. “It took five hours because I could only write for so long.”

TM Warrior Virginia Vuentura uses music ti get herself back on track

Music helping Bealeton TM Warrior beat depression

By Cassandra Brown, Staff Journalist

 After 10 years of chronic depression, the Bealeton resident and TM Warrior has found renewed hope through music and faith.

A paraplegic since age 6 because of Transverse Myelitis, Virginia Ventura has suffered from severe depression since middle school.

Transverse Myelitis “was pretty much an overnight thing,” said Ms. Ventura, 25. “I went to sleep, and I woke up and couldn’t move my legs. I remember my parents crying all the time when this happened. You don’t get it when you’re 6, and you don’t think this is going to change your life,” she said. “I guess it wasn’t until my teenage years when it affected me more.”

Before her depression, Ms. Ventura played viola for two years in school and took piano lessons.  “When I picked up an instrument, it felt natural to me,” she said. “It’s something that never left my mind. I remember how proud and happy I would feel playing.” 

Determined, Ms. Ventura turned to the Internet and searched for a studio where she could rekindle her love of music. She found Passion Academy in Henrico County and decided to email the staff about possible scholarships.

“I honestly wasn’t expecting a response, but, I said a little prayer to God before I sent the email,” Ms. Ventura said. A few days later she heard from Passion Academy founder and President Derek Smith, who had chosen her as the foundation’s first scholarship recipient.

Over the next year, Virginia will learn to play the violin, drums, piano, electric guitar and how to produce music. Lessons take place on Mondays for about 90 minutes.  Virginia even has to drive 90 miles to get to the school.

“My music makes me feel like I have some sort of purpose,” she said. “Thanks to Passion Academy, it will allow me to live my dreams.  It’s very calming and peaceful. It gets my mind off things.”

With newfound determination and hope, Ms. Ventura plans to enter the 2018 Ms. Wheelchair Virginia pageant and raise enough money through a GoFundMe page to purchase a wheelchair-accessible vehicle.

“I think that’s another cause for my depression is being held down by other people’s schedules or staying home because it’s too difficult to go out,” she said. “Me getting a car, I see that as being another catalyst. It’s going to open so many other opportunities for me.”

One day she hopes to compete in the Paralympic Games.

Ms. Ventura strives to inspire others with depression – whether transverse myelitis sufferers or not -  to pursue their passions and dreams.

“I feel like a lot of people get so caught up in their sickness that they forget to work on themselves, on their hearts,” Ms. Ventura said. “If you have a passion, just don’t put excuses up. Go ahead and do it. The reward is going to be so much better than the risk you think will happen.”


What I wished My Loved Ones Knew About Life & Disabilities

By Adina Burke - Writer, Poet, Pure Spirit

My name is Adina, and I have cerebral palsy, PTSD and major depressive disorder. Often times when it comes to my way of life, even those who know me may be at a loss for words. I wrote this article in the hopes that it will make our dinner conversations a lot less awkward. Starting a dialogue is and always will be an important step in advocacy. Here’s a list of seven things I’d like my friends and family to know about living with disabilities.

1. When I say “I’m tired,” I mean I’m exhausted. 

There’s a chance I’ve canceled plans because of this, but it means the world to me when you continue to invite me out, because there will be days where the disabilities don’t win. Asking me out to do things is a way of rooting for me more than you know, and I appreciate it very much.

2. I’m glad your health regime is working for you, but that’s your health. 

This is my health, and what works for me might be different.

Listen, it’s super cool that you feel as though your yoga instructor and detoxifying waters would really benefit me, and I’m stoked you found something that works for you, but my body is different, and I need my medications like I need oxygen. Please understand and be respectful of this. My body, my existence. My choice. Your body, your existence. Your choice.

3. I am allowed to hate my disabilities.

I am allowed to have bad days. I am allowed to have days where the disabilities win, and I toss up a white flag of surrender in a way that Dido adamantly refuses. I am allowed to hate my cerebral palsy. I am allowed to hate my PTSD. I am allowed to hate my major depressive disorder. Do not mistake my bad days for self-loathing, and for the love of all that is holy, please don’t toss up your complaints about my disabilities in terms of our dynamic. I know being a loved one has its difficulties, but if you think having me in your life is burdensome, you should try living as me sometime. I’m just sayin’.

4. Inclusivity is far more than introducing me to your other friends.

It is making sure I get ample notice to schedule my rides in time, and knowing you don’t mind picking me up before we go somewhere. It is making sure the place we’re going is accessible, or a phone call and a game plan in regards to the new venture. If you forget about my wheelchair, you are forgetting a part of me. Don’t take offense when I shut down plans due to inaccessibility. If I feel as though my wheelchair is going to speak for me the majority of our outing when all I really want to do is spend time with you, it’s not going to be a good time. If you don’t show care of my basic needs, you are showing me that my needs aren’t that important to you. 

That said, sometimes sh*t happens, and I may need help parking my chair in order to take a piss, or I may need attractive gentlemen to assist me in getting my chair up a set of stairs like the Queen of Sheba. So long as you’re ready for a little bump in the road and don’t regard it as that big of a deal, neither will I.

5. Sometimes I feel like a burden to you.

And I will want to talk about it. These conversations are awkward, painful and awfully important. Chances are, I will say something off-handedly. Like, maybe I heard you talk about how you used to help me get my shoes on in the morning, or maybe my wheelchair was a really big pain to get out of your truck. Perhaps I drunkenly ran over your foot? Who knows? But it’s important. I do not want to be anyone’s obligation. I do not want to be anyone’s path to redemption. I want to be your friend. I want to be a part of this family. I want to know there are pieces in my life bigger and louder than the ones that society has deemed unlovable. I want to know I should not say thank you for loving me. That I am worthy of love and a place within this home, this social circle, this life. So let’s talk about it. Please. 

6.  My disabilities do define me (in some aspects of my life). 

I am an artist. I am your friend. I am your sister. I am your daughter. I also happen to have four disabilities that stop me from doing certain things. I do not have the same rights you do. I cannot do everything you can do “just in a different way.” I am disabled, and not because my needs are different, but because society at large deems these needs as not important enough to meet. I cannot have spontaneity in the way that I yearn to as a typical 20-something. I go through doctors the way you swipe left on your Tinder profile. 

I am not ashamed in living this life of difference. When you say you don’t see my disabilities, I know you actually mean, “I see the person you are with these disabilities,” but when you use phrases like, “You’re just differently abled” or “I don’t see the wheelchair,” it kind of makes me want to throw up in my mouth a bit. You’re basically saying, “I don’t see the discrimination you face every day.” Even though you and I know you mean differently. 

7. Know that I’m ready to roll over some toes and kick some a*s whenever you need. 

Seriously. Just call me up. I’ve got this.       Originally published on www.themighty.com  

Adina's Button Poetry

Adina Burke may not suffer from Transverse Myelitis or one of it's related rare diseases, but she is an extraordinary talent proving each day that her artistry trumps her own disabilities.  To listen to her perform her poetry, click below . . . 

Adina Takes The Mic

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Once paralyzed, 3 men take steps again with spinal implant

By Benedict Carey, New York Times, 10/31/18

An experimental, pacemaker-like device offers hope for treating spinal injuries.

David Mzee broke his neck in 2010. He was a college student in Zurich at the time. Now 33, David is one of three men who lost the use of their legs years ago after severe spinal injuries, but who now are able to walk without any supports, if briefly and awkwardly, with the help of a pacemaker-like implant.

The breakthrough is the latest achievement in the scientific effort to understand and treat such life-changing injuries. Several recent studies have restored motion to paralyzed or partially paralyzed patients by applying continuous electrical stimulation to the spinal cord.

The new report, described in the journal Nature, is the first demonstration of so-called patterned stimulation: an implant sends bursts of targeted stimulation to the muscles that intend to move. In effect, the stimulation occurs on an as-needed basis, roughly mimicking the body’s own signaling mechanism.

The treatment is still experimental, and its effectiveness for others with complete or partial paralysis is yet to be worked out. The three men had some sensation in their legs before the trial began, and they needed months of intensive training to achieve their first awkward steps. They still rely on wheelchairs; two can walk out in the community, using walkers.

Click here to read the entire article:   


David Mzee Walking with Implant & Walker

Watch David Mzee walking with his spinal implant and a walker.   Video by Ecole Polytechnique Fédéral de Lausanne and Centre Hospitalier Universitaire Vaudois

David Mzee Video

Words Stick

By Carrie-Anne Farnell

Words stick! Things that people say about us stick! They stay with us for a long time. They go deep. 

This is also true about the things we say to ourselves! These words affect the way we are and the way we see ourselves, they affect who we are. We can start to believe the words that we hear. When we tell ourselves that we’re fat and ugly and worthless and no good, we really start to believe these things. Even more so if other people are telling us these things too. It has a negative impact on us and we end up limited, tied up, weighed down and heavy because of these words. 

Wouldn’t it be great if those words were actually positive instead of negative? The difference it could have would be huge. If we started to tell ourselves that we are beautiful no matter what and that we are clever instead of stupid, then maybe we would start to believe these things instead. Then we would start to feel more free and lighter. We wouldn’t feel so bound up by all of the negativity in our lives. 

So, the next time you are talking to someone, remember that you can’t take your words back once you’ve said them. Remember that words stick and it can take years to get over some of the things that get said to us…sometimes we never get over them!

Try to see how many times a day you tell yourself something negative…I did this and was gobsmacked at how many times I was putting myself down. Now I’m trying to stop it and I’m trying to replace some of it with positives instead. 

There would have been a time in my life not so long ago when I wouldn’t have posted these pictures just because I think I look fat and ugly and that people will laugh at me…now however, I don’t care, because I am who I am and I’m proud of it!

So be proud of who you are…no matter what!

For more from Carrie-Anne, visit her website at


After Transverse Myelitis Came MS

Carrie-Anne was first diagnosed with Transverse Myelitis in May 2016. In April 2018, Multiple Sclerosis was added to her life. Visit our Video Gallery to watch her talk about this new development.

Carrie-Anne Video

Jake Burton Couldn’t Walk or Talk - But He . . .

Beat Back a Life-Threatening Illness & Got Back On His Snowboard

Despite some early missteps, Jake Burton's snowboarding company became a household name. But a mysterious disease almost took him off the slopes for good. --As told to Liz Welch for Inc. Magazine 

When I started Burton Snowboards, it was a get-rich-quick scheme. I thought, "If I can make 50 snowboards a day, I can make $100,000 a year." I hired two relatives and a friend--classic mistakes. I sold only 300 boards that first year. I laid off everybody and started over. Eventually, I was like, "F@&k the money. I just want to be right about my vision." When I started living just for the sport, everything fell into place.

I got hit by a skier once, which broke my leg. I hit a tree and broke my leg again. In February 2015, I got my knee replaced. Three weeks after surgery I took a run - I needed to prove to myself I could do it.

A few days later, I started seeing double. The next day, I felt flulike symptoms and went to the hospital for an MRI. The neurologist thought it might be a stroke. After more tests with a different set of doctors, they said, "If it's what we think it is, tomorrow you won't be able to swallow, then you won't be able to open your eyes, then you won't be able to breathe."

I didn't believe it. But they asked me to blow these stupid little Ping-Pong balls up a tube . . . I couldn't move the ball.


The diagnosis was Miller Fisher, the most gnarly form of Guillain-Barré. The myelin sheath around your nerves gets damaged. No one knows what caused it--a flu shot, the surgery, a bad oyster.

Burton overcame the disease that left him unable to walk or talk.

At first, it was, "OK, I'm sick. I'll be missing this meeting or whatever." But I spiraled down quickly. On the third day, they jammed tubes down my throat. People visited and walked out crying.

Part of the disease is confusion. I couldn't open my eyes, but I also couldn't sleep. When I did sleep, the nightmares were horrific. Breathing was the worst: I could never get enough air. All my life, I had had the lungs of a swimmer. Now. all my energy went into getting my next breath.

I literally talked to my middle kid about suicide. I was just so over it. One day, my doctor asked, "Are you suicidal?" Remember that German plane, where one guy went to take a piss and the other guy locked the door and drove the plane into the mountain and killed 150 people? I was paralyzed except for my right hand, so I scribbled, "Yeah, possibly--but I'm not going to take 150 people with me."

The middle finger is our unofficial signature at Burton. (A snow-boarder did it in one of our catalogs and it stuck.) When my wife, Donna, told the company how sick I was, everyone gathered for a portrait with middle fingers up. That photo hung in my hospital room. It was my guiding light.

After seven weeks in the hospital, I was transferred to rehab. I still had a tracheotomy, and couldn't walk. When I was finally sent home six weeks later, I was 135 pounds, down from 175. I had a speech therapist, an occupational therapist, an acupuncturist, and a trainer--all to start talking and walking again.

Donna became CEO in 2016. I'm still a product manager. I love it. I'm back to snowboarding 100 days a year. We get riders together and go somewhere to test every product in the line. That keeps me in touch.


After seven weeks in the hospital, I was transferred to rehab. I still had a tracheotomy, and couldn't walk. When I was finally sent home six weeks later, I was 135 pounds, down from 175. I had a speech therapist, an occupational therapist, an acupuncturist, and a trainer--all to start talking and walking again.

Donna became CEO in 2016. I'm still a product manager. I love it. I'm back to snowboarding 100 days a year. We get riders together and go somewhere to test every product in the line. That keeps me in touch.

Donna's taught me to think differently, for sure. My tolerance for bullshit is at an all-time low. I can see through it. I've stared down death. I've seen worse than most peoples’ BS."

The company has a sense of irreverence, but we've always been fiscally responsible. Being privately held has been such an incredible edge. Donna and I own 100 percent of the company. We don't have some analyst looking over our shoulder. If we did, I'd be fired, for sure. Gone. And I shouldn't be gone. I should be right where I am.

Victoria Arlen - from tm to "dancing with the stars"


The Paralympian serves up major inspiration

When Paralympic gold medalist and former world record holder Victoria Arlen was just 11 years old, she developed two rare conditions—transverse myelitis and acute disseminated encephalomyelitis—that put her in a coma for two years.

In January 2009, the now-ESPN star came out of the coma in a vegetative state, fully immobilized. She couldn't speak or eat—though she could hear conversations happening around her. She describes her state as feeling like a ghost living in a shell of a human. 

Although many of her doctors believed that she wouldn't pull through—and she'd never regain speech or movement, in November 2009 she was able to signal to her mother, through a blink, that she was cognizant of her surroundings, nearly a year after waking up from her coma.

Over time, the now-23 year-old worked tirelessly with speech and physical therapists, went back to school, and ultimately started swimming again. In the London 2012 Paralympic Games, Arlen took home the gold for the 100-meter freestyle.

Arlen, who still has no feelings in her legs, went on to become one of ESPN's youngest reporters and a motivational speaker. And after spending almost 10 years paralyzed from the waist down, she learned how to walk again.

“I am not one to give up the fight that easily.”

To fit in her rehabilitation, workouts, and speaking engagements, Victoria starts her day (really) early.

Watch Victoria & Megyn Kelly Below

4:45 am. 30 min. to Meditate

"I’m a morning person. When I first wake up, I spend some time trying to stay in the moment—to be present and grateful. 

I do a little yoga, too, and then use my Theragun to help with sore muscles to get my legs up and working."

5:15 am: Off to "Soul Cycle"

"I usually work out two to three hours a day, often starting at the SoulCycle right near my new place in West Hollywood.”

"I also love Pure Barre and work out with a trainer three to five times a week. Constantly switching it up and challenging my body is key. Every day, I have to keep reminding my legs that they work."

8 am: I write out my to-do list during breakfast


"I love breakfast. My ‘go to’ is 1/4 cup of oatmeal, three egg whites, a handful of blueberries, and a scoop of almond butter. It’s a perfect combo of everything I need. I’ll pair it with coconut coffee concentrate from Trader Joe’s and almond milk plus stevia."

8:30 a.m. Time to get Glam

"One of the perks of being an ESPN commentator is that almost every day I get my hair and makeup done. But beforehand, I always like to prep my skin with Rose Deep Hydration Face Serum from Fresh. Over the years, I have tried so many products and have finally found a recipe my skin likes."

Display 9 a.m. By now I'm ready to conquer the day

"Depending on what I’m doing—I wear quite a few career hats—my day will vary. But usually by 9 a.m., my 'me' time is wrapped up."

Victoria & Megyn Kelly


When Paralympic gold medalist and former world record holder Victoria Arlen was just 11 years old, she developed two rare conditions—transverse myelitis and acute disseminated encephalomyelitis— that put her in a coma for two years.


Must watch - A day in the life

The Joys of a Handicapped Nigerian "Agbero"

Mr. Abiola (AKA 'Biggie') was born as a normal child, but got infected by polio at three years old. The result - not being able to use his legs since. His story is that of a whole and engaged life.

He hasn't let his condition stop him. "I wash myself, wash my cloths, everything," says Biggie. Although he's confined to a wheelchair, Biggie is a local champion in his area where he works as an “agbero,” or local money collector. "This is my area, i can't beg for money," Biggie explains.

Biggie lives in Isheri Ogun state and goes all the way to Ikeja, Lagos, every day to work so he can feed his family - his father, his wife and his son. "His story is very long, but we thank God he's alive," says Biggie's father.

Biggie doesn't just work, he also finds ways to have fun and unleash his notorious ways - as he hilariously explains: "If i sell you recharge cards and you don't pay me, i must sleep with you" says Biggie. But seriously, you can watch BattaBox interviewer, Yetunde, bring to you the daily motion of Biggie's life in our Video Gallery.

Watch "Biggie" Now

Watch a "day in the live" of Mr. Abiola, aka. Biggie, in our Video Gallery.

Video Gallery

Letter To My 13-Year-Old Self: Find Peace In Chaos & Trauma

Dear 13-Year-Old Self,


Today your life will change forever. Our dad will wake you up at 6 a.m. to tell you to get ready for the third day of 8th grade. You don’t really like school, which is why you have to get up before everyone else, but you get up nonetheless. You’re excited to show off your new beef-and-broccoli Timberland boots. You moan and groan before heading to the bathroom to shower.

In the shower, with warm water running, you’ll feel the onslaught of Transverse Myelitis, a medical diagnosis you won’t know about for weeks because doctors guess you have everything from HIV (despite telling them countless times that you’re a virgin and don’t use drugs) to a tick bite (despite telling them you don’t even like animals and avoid them like the plague), but you and our parents agree to all sorts of tests. The IV in your arm has become a part of your person. You mask your hurt when each test comes back negative. Negative for HIV and AIDS and other STDs and STIs. Negative for tick bites. Negative for cancer. Negative for diabetes. Negative for everything under the sun. You smile even though you want to scream when doctors tell you that despite this mystery illness, you have an A-1 health report.

It starts with tingling in your toes. You think you have a “Charley horse” so you ignore it. In the span of two minutes, you realize something more sinister is happening. You are scared for your life but you don’t scream. You don’t cry. You’ll begin to pray a prayer you have never heard and it scares you: "God, if you’re real, and I think you are, I need you now."

The tingling has turned into a burning sensation, from the toes creeping upward. You are literally on fire from the inside out. You pray again: God, not like this. Anything but this… 

You exit the shower and once both feet are on solid ground, your knees lock and you become bow legged. You’re a shy and quiet type, so you don’t scream, you won’t panic, but you’re scared. It’s okay to be scared.

You do something you’ll regret for a lifetime, but I want you to know that nothing you could have done would have made your plight any better, I promise. You lie down on the floor and you go back to sleep, never telling the adults in the household just how serious your condition is or just how much pain you’re in. You agree it’s probably a “Charley horse.”

When you wake up, your nightmare is real, and chaos and trauma have set in. You feel like you have two 18-wheeler trucks for legs. It’ll be around noon when our dad arrives. He sees you and asks if you can get up. “No,” you say, “no.” With a look of horror on his face, he whisks you up in his arms and takes you to the car. You tell our mom, “I love you and we’ll see you soon.”  You’re on the way to a hospital.

You’ll never walk again without the aid of some medical equipment. From this moment on, your life is going to be filled with wheelchairs, walkers, and quad canes.

There will be a slue of physical therapists and physicians that you can’t stand - probably an unhealthy disdain - but you smile and suffer through polite indignities.

You’ll feel like the weight of the world is on your shoulders, and you’ll feel like you have to be strong for the family . . . you don’t. It’s one more myth you’ll learn about soon.

When you are finally told what’s happened to your fragile, 13-year-old boy body, you are stoic. You’ve gotten used to the IV in your arm. You’ve gotten used to the shots in the thigh. You’ve gotten used to this new normal and the diet.

And therein is why I’m writing you. You went through Hell so that I could be everything I am today. You didn’t die of a broken heart, which could’ve been a tangible reality.  Because you thought about me instead, I carry that blessing with me each day. I am the man I am because you were the boy who stood down an unknown spinal cord injury with grace and dignity.

Before the world told you that you should be this or you should be that, you were your own soul. When I’m tired, or angry, or frustrated, or hurt, or disappointed, I often try to find that reservoir of strength that you had then, and I borrow from it. 

In hindsight, If I could tell you anything, I’d tell you to show more emotion. You’ll grow up with the reputation of being “no drama Pee”but that’ll cause drama because people will think you have emotions of steel.

Be nicer to our parents, too. They are awesome. They are never going to be the parents you want, but they are the parents you need. Our mom will be your biggest cheerleader. Our dad will be there every step of the way, never missing any of the close to 20 operations or other doctors’ appointments.

Our siblings are also scared, so try to ease their fears. They really do want the best for . . . you will see that in the years to come.

Your passion for social justice and advocacy for those without a microphone is being fostered.I hope this explains all the weird experiences that have come along, so let the uncomfortable experiences happen. Don’t be scared to name the names.

In summation, I could continue writing this letter for a lifetime, and I’ve had to leave a lot out of it because it’s almost too much to bare to write. But, I do want to say that you’ll find peace in the chaos and the medical trauma, and, because you did . . . I am.