Jay Armstrong

@jay-armstrong | contributor
Jay Armstrong is a writer, teacher and father. Since being diagnosed with sarcoidosis, Jay has created the website writeonfighton.org as a forum for sharing his stories and struggles with others.
Community Voices

A Therapy Story

VRT ( Vestibular Rehabilitation Therapy) is a form of therapy that uses exercise to improve gaze (eye movement) and gait (walking/movement).

My vestibular disorders, which are a result of cerebellar atrophy, vertigo (dizziness) and #Nystagmus ( involuntary rapid eye movement) are permanent conditions. VRT and medication is the only way to hope to improve such conditions.Since the initial diagnosis, over 5 years ago, my relationship with my body has been well—strange. Sometimes my fingers feel like they belong to someone else.

Sometimes my joints and muscles ache for seemingly no reason. Sometimes my legs seem disconnected from my body and I have to think about them, make peace with them, before they work.

Sometimes I’m scared to move.

Sometimes I feel like I’m moving even when I still.

Sometimes my eyes see black dots and floaters and finite things often lose their edges.

But sometimes, my joints and limbs and muscles and eyes act like they should, the important circuits inside are connected, and nothing hurts and I’m reminded of the person I use to be.

And sometimes those are the hardest moments.

A Therapy Story

My therapist, a young guy, shows me how it’s done.

“You sit upright on a Swiss ball, knees bent, with your feet firmly planted on the floor. Lift one foot 6 inches off the ground, hold 1,2,3 then slowly lower your foot to the floor. Alternate between each foot. 30 reps each foot.”

He’s wearing blue khakis and shiny brown loafers and does one rep with seamless ease.We trade places. I sit on the blue Swiss ball. Feet firmly planted on the floor. Upright, knees bent.

He stands behind me and says he’ll catch me if I fall.

I start with the right foot. The right foot abides. I lift and hold. 1,2,3. Then bring it down to the floor.

“Good.” he says.

I stare at the left foot and the left foot stares back at me like we knew each other from a past life.

My mind commands, “Move.” “Now.”

The left foot remains still, defiant, and planted as if it had suddenly grown roots.

“Move.”

Nothing happens until I pull the left foot up. But it’s slow and forced and unnaturally hard.

The left foot throws shadow to the floor but before I can begin to count, my left foot chases the shadow and slams the ground.

29 more reps.

“Try again,” my therapist encourages.

Across the room there’s a woman with a black brace hugging her left knee. She’s walking on a treadmill. She’s staring at me. Her eyes are heavy. Her gaze is real.

Since my diagnosis, 5 years ago, I’ve developed a skill. I can read her mind. “No cast. No brace. No crutches. A secret wound,” she thinks.

Yes ma’am, it’s a secret wound that brings me to this blue Swiss ball.

A secret wound I’m obsessed with.A secret wound that I keep writing about, hoping that maybe all these stories can somehow fill the holes in my brain and correct my eyes and soothe my pain.

A secret wound that you can’t see but I absolutely, positively feel.

And I guess, in some selfish way, I want you to feel it too.

Jay Armstrong

Celebrating the Anniversary of Discovering My Brain Damage on an MRI

When I decided to celebrate my worst day, I had romantic dreams of baking a chocolate cake, coating it with vanilla icing and beautifully decorating it with some unabashed inspirational quote. Here’s what happened. It’s OK to laugh. Seriously. I know, it’s a high-fructose, high-caloric train wreck. Just in case you can’t read it, beneath the scattered sprinkles, squiggled in red gel is the iconic line from Bruce Springsteen’s song “Badlands”  –  “ Ain’t no sin to be glad you’re alive.” Here’s why. This past September 4th was a big day for me. An anniversary of sorts. So I baked and decorated a cake to commemorate the day. On September 4th, 2013 I had my first MRI revealing my brain damage – a large chunk of my cerebellum had degenerated. The date has now become a personal milestone. In the days and weeks following September 4th, 2013 there was, as you could imagine, a quiet tension. The kind of quiet tension that lingers between the pages of hospital waiting room magazines. With every test, with every confused doctor I grew more desperate, more convinced I was going to die a young man. Four years later my brain damage is still unaccounted for. However, 18 months after the MRI, a muscle biopsy revealed an autoimmune disorder, sarcoidosis, that causes inflammation, not degeneration. Four years later doctors are still nosing through medical journals searching for precedent. They are still hypothesizing. I say, let them hypothesize. For the only fact that matters today is  – I’m still alive. And according to the Boss, that ain’t no sin. If the September 4th picture marks my worst day, a day which initiated the worst stretch of days I have ever experienced, I’ve learned that celebrating your worst day is an important step toward healing. Though I’m not physically healed, and may never be, mentally, emotionally and spiritually I’m stronger for having endured my worst day. “Everything can be taken from a man but one thing: the last of the human freedoms  – to choose one’s attitude in any given circumstances, to choose one’s own way.” – Victor Frankl (author, psychologist, neurologist) Struggling is lonely work. Often, when we struggle we alienate the very people who take us to our appointments, who hold our hand, who cry alongside us. It’s understandable that when we struggle we become selfish. We fall into ourselves. Yet by doing so we fail to recognize the anguish others may be in because of our struggling. Cutting cake (even a poorly decorated one) and celebrating your worst day is an important step toward healing. A sugary reminder of how resilient the human spirit can be and how our lives, whether we want the responsibility or not, are the models that others will follow. We want to hear your story. Become a Mighty contributor here.

Jay Armstrong

Cerebellar Degeneration: The Day I Learned I Could No Longer Jump

Six months after being diagnosed with cerebellar degeneration, six months after a neurologist examined an MRI of my brain, leveled his eyes, cleared his throat and said to me, “you should be dead or in a hospital bed,” I’m staring at my physical therapist, Denise, and she’s daring me to jump. “Jay, I want you to jump.” ”Like up and down?” ”Yes, like jump up and down.” I smile and look around the St. Lawrence Rehabilitation Center. There are three other patients in the activity center with me. Two women, both walking slow on a treadmill and Bill, a former Navy Captain, who is the proud owner of a new titanium hip. Bill is pedaling a stationary bike, and according St. Lawrence lore, Bill has never smiled. Ever. I’m the youngest one in the activity center by at least 20 years. This is problematic because comparison naturally feeds fiction, and I survey the room and like the true gym class hero I still believe myself to be, I swell with pride knowing, believing I’m the most able-bodied in the room. “Denise, need I remind you that I’m an athlete. A college soccer player. I’ve been jumping my whole life.” Denise playfully rolls her eyes. This is only my third appointment at St. Lawrence, but Denise and I already share a chemistry. It’s December. Football season. I’m an Eagles fan. She’s a Giants fan. In between sets of squats and leg raises I tell her Eli Manning is overrated. She tells me the stereotypes regarding the jerkiness of Eagles fans is apparently true. She is a turtleneck conservative. No earrings, no rings just a silver cross pinned to her sweatshirt. But she is funny and real and in just our few hours together I stake her as the most compassionate person I have ever met. During a set of lunges Denise tells me that Bill just lost his wife of 40 years to breast cancer. Her brown eyes swell, and then she tells me she lost her grandmother to the same disease. Denise and I both look at Bill. We watch him slowly pedal. She tells me it’s her goal to make him smile today. To be honest, I’ve avoided writing this story for some time now. I guess by writing it, by pinning down its facts, I’m forced to further accept certain truths. I assume I did what most of us do when we don’t have the energy, courage, conviction to deal with truth. We tuck it away, like a debt, in the darkness of a desk drawer and do our best to forget about it.  But memories, with just the right stimulus, can resurrect without warning. They sit up, blink, open the drawer and leak into the light and remind you that memories, like debts, can be avoided for only so long before they must be attended to. The stimulus today was a basketball bouncing off the concrete. My son, Chase, is in the backyard, dribbling the length of the patio and shooting on a little net he received for his 4th birthday. He’s 6 now, and he’s getting good. Dribbling, jump shots, layups. And he’s quickly learning about the earthly battle between the human body and gravity. Chase makes a jump shot and celebrates. As it often happens with sons, he feels me – his father’s eyes looming because he looks up, with his own blue eyes and finds me framed in the window. “Come out and play, Dad!” I smile and wave and a trapdoor in my stomach swings open and my heart falls through and keeps falling because but I can’t play. Not now. Not today. Because some days my body aches too much. Because some days my brain does weird things. Like some days it convinces myself I’m trapped on the Tilt-a-Whirl or I’m buckled to the back of a big black bird or I’m a sneaker in the dryer or I’m frat party drunk. Because some days the fixed world spins, glides, tumbles and wobbles off its axis at speeds beyond what my eyes, my undamaged brain can comprehend. And I guess, some days, I just don’t play because… because I simply cannot risk the embarrassment. For this story, I need you need to suspend reality. I need you to believe the unbelievable. But the unbelievable is the truth. Truth that the National Institute of Health, the epicenter of rare and novel diseases, couldn’t believe. Before my diagnosis, I believed I would do physically heroic dad things, like carrying all three children off to bed like footballs, each tucked under my arm, after they fall asleep on the couch. I believed I would be the MVP of father-son baseball games. I believed my children and I would run 5ks together, and I believed on a perfect summer morning, when the sky was veined with golden light we would ride bikes along the New Jersey coastline. But we age and learn that real life always falls incredibly short of the one we imagined, of the one we planned.  And yet despite our protests, it’s the unplanned life that teaches more then our fantasies ever will. “Jay are you ready?” “Eagles are always ready to fly.” “OK, but I’ll be right here, beside you just in case.” Bill rides a stationary bike. He is straight-faced and staring at me. “Hey Denise, can you go make Bill smile? He’s freaking me out.” “Just concentrate on what your doing.” “Denise, I got this. Need I remind you again, I’m an athlete.” Cerebellar degeneration is exactly as it sounds. There is massive cell loss in the cerebellum, known as the little brain. The little brain controls motor skills: coordination, vision, and balance. After examinations from some of the top neurologist in the country, not one knows if I was born with a gaping hole in my cerebellum and had been able to compensate my whole life (remember, I’m an athlete) or if a civil war erupted in my little brain where cells attacked and killed each other. And as I write this, as Chase drills a jump shot, no one knows if the war is over. In the last few months my coordination, vision, balance and motor skills have all deteriorated. Not at breakneck speed, but slowly, methodically. Little things, things I’ve taken for granted – handwriting, climbing stairs, and carrying a few bags of groceries — have become difficult. The doctors are surprise how well I look, speak and still function given the size of the hole in my brain. For a brief time doctors thought I had ALS. Then they thought Huntington’s disease. Then MS. Then, after six months of testing, they simply shrugged their collective shoulders and said they didn’t know. They told me, as if they were riding the Tilt-a-Whirl or the giant bird with me to, “just hold on.” Denise levels her eyes at me. “I want you to jump.” “How high?” “As high as you can.” I bend my knees, swing my arms back and forth and try to jump. I try and try and try and try, but I just can’t do it. I just can’t force my feet to leave the floor. My big brain screams at my little brain, “Jump!” But the message is not delivered as if some internal chord that transmits important messages had been severed. To Denise, Bill and the two ladies on the treadmill I must have looked ridiculous, like a wide-eyed field mouse fixed in a glue trap. I shake my head. “Jump!” “Jump!” “It’s OK, Jay. You don’t have to do it.” “No, Denise. I can jump. I have to jump.” “Relax. Take a seat. Let me check on Bill”. Denise returns, tells me she offered Bill her best joke about a priest, a rabbi and a monk playing Monopoly in Mexico and he didn’t crack. Didn’t even flinch “Denise, I’ve had enough for today.” When you think of your future self you envision your best self. Happy and unblemished. You’re the hero of your own movie. You convince yourself that you, unlike everyone else, won’t end up a tragedy. And in those great moments of fantasy you believe, with a swelled heart, in your own fiction. I limp into the locker room, find a folding chair, stare into my lap and began to digest the fact that I have lost the ability to jump.  It occurred to me, right there in that empty locker room, on that folding chair that I would not be the man, the father I envisioned myself to be. A father running, jumping through life with his children. Afather playing basketball in the backyard with his son. A father who is fast and coordinated and who teaches his boy the aerodynamics of a layup as the evening sun vanishes from the suburban sky. I open the locker room door to find Bill in the hallway, sitting in his wheelchair, as if waiting for me. I offer a little half-smile, and before I can turn Bill speaks, “Hey,” he still has those steely grey Navy captain eyes, eyes that don’t look at you, eyes that look through you. Bill clears his throat, shifts his weight on his God-given hip and says, “Don’t give up, kid.” “Thanks.” And then, in a very subtle, a very unprovoked way, he smiles. We want to hear your story. Become a Mighty contributor here . Stock photo by Wavebreakmedia Ltd

Jay Armstrong

Sarcoidosis: What a Stranger’s Death Taught Me About My Diagnosis

This wasn’t the article I intended to write. No, I was crafting a breezy piece on the eternal wisdom found in the lyrics of Bruce Springsteen’s “Thunder Road” when a 45-year-old man from Cincinnati, a man I have never met or even knew existed, died. All reports indicate he was an honorable man. A good man with a big heart. He was a Marine who served in Desert Storm. When he returned from duty, he became a firefighter and an EMT. His friends said he loved helping and serving the community. His fire station captain described him as fearless, always the first to rush into the fire, always willing to put his life on the line. But friends say underneath his fearless facade, he was a jokester. A man who pulled pranks. A man who loved to laugh. In 2014, he went out for a jog, developed chest pains, and that big heart of his fluttered and seized. He survived but over the next year his health rapidly declined. He died on January 18, 2016, from complications fueled by sarcoidosis. Even for doctors, understanding sarcoid is often difficult. I think sarcoid is like the tequila of autoimmune disorders. When the cap is twisted loose from its grooves, it’s hard to predict what will happen next. Sarcoid causes inflammation and granulomas (tissue masses) to grow in the body. These granulomas can increase in size and attach to organs, nerves and muscles. According to the Foundation for S arcoidosis Research, sarcoidosis “ most commonly targets the lungs and lymph nodes.” But in his case, as in mine, the sarcoid was considered progressive, since it was found in different regions of his body. Adding to its perplexity, unless the sarcoid attacks the skin (which it can, leaving sores and lesions), most sarcoid patients look normal. There are no outward signs of distress. Since reading his story, I have lost sleep. Between my wife’s little snores and the growling of the oil heater, I have thought greatly about his life. And his sudden death. Before my sarcoid diagnosis, the death discussion would make me squirm. I’d tuck it away like a credit card bill and make feeble attempts to address it later. And when I did, I was just paying the minimum balance. Since my diagnosis, here’s what I’ve learned: Bad things will happen. Things you thought only happened to strangers in places like Cincinnati actually happen to you. I also learned that when bad things do happen, you can accept your lot or you can ignore it, deny it or rail against it. (I think he and I would have agreed that the later three are bad choices.) With much respect to my Fitbit and Rocky Balboa, the prospect of death has been my greatest motivator. Learning about the dangers of my disease and seeing my vital organs projected on an X-ray screen awoke me to the preciousness of life. I don’t believe death is the worst thing that can happen. In fact, it’s a natural part of life. I think a greater tragedy occurs when you live an inauthentic and uninspired life. When you disengage from your own possibilities. For when you live in fear of death, you limit your ability to fully embrace life. And instead of participating in your life, you become a spectator, a benign witness to your own calamities. From what I read, he lived authentically. He scoffed at death and embraced life. He ran full-heartedly into firefights and burning buildings. A man unafraid to die. A man fully engaged in life. So I thank this man from Cincinnati — a friend I never knew — for reminding us all how to live. Follow this journey on Write On Fight On . Lead photo source: Thinkstock Images

Jay Armstrong

My Sarcoidosis Inspired Me to Be Creative Again

After I was diagnosed with sarcoidosis, I spent weeks circling the drain of self-pity. I was convinced my problems were worse then anyone else’s. I blamed myself. I cursed God. When my wife tried to talk to me, I was tight-lipped and curt. I was angry and afraid and spiteful. Why was this happening to me? I believed I was too young, too important and too full of promise to be stricken with such a mysterious disease. As a child, I dreamed of becoming a writer. Sitting on the edge of my bed, I would scratch down stories in a notebook. Stories about a superhero chicken, a baseball-playing iguana and 15-year-old aerospace prodigy named Gunnar, who was chosen to lead a select group of teenage astronauts in a shuttle mission to Mars. But then I grew up. I got my first job flipping hamburgers, bought a car, tried to meet girls and stopped writing. I went to college, became a teacher, met a girl, got married, fathered three children, got sick and, in one of the most important decisions of my life, started writing again. “Creativity is a great motivator because it makes people interested in what they are doing. Creativity gives hope that there can be a worthwhile idea. Creativity gives the possibility of some sort of achievement to everyone. Creativity makes life more fun and interesting.” — Edward de Bono Sarcoidosis inspires me to write every day. Although I can’t predict the course of my disease, I am responsible for every word I write. When my words are fastened and forged together, they energize me with power and strength to fight my fickle disease. If you have a chronic illness, I urge you to return to your childhood and become a creator again. Creating is a profoundly constructive way to distance yourself from your pain and to remind you that you are stronger than you think you are. Paint, draw, sculpt, build a birdhouse, make Christmas ornaments, restore an old car or create a new dish with a Crock-Pot. Create whatever makes you soul sing. Despite popular belief, creating is not about money or fame. It never has been. It’s about totally losing yourself in a process until your self-pity is silenced, your spirit is renewed and you’re afforded needed relief from the pains of living. Follow this journey on Write On Fight On. Lead photo source: Thinkstock Images

Jay Armstrong

Being Diagnosed With Sarcoidosis: What I've Learned

A few days after a muscle biopsy procedure my doctor called and delivered the name of my mysterious internal antagonist: Sar-coy-something. As I scratched down its letters on the back of a Chinese takeout menu, he explained the intimacies of my disease, offered some reassurance and outlined a plan of attack. When the call ended, I did what most modern creatures do — I opened my laptop, summoned Google and misspelled my disease in the search bar. S-a-r-c-o-i-d-o-s-i-s is an autoimmune disorder that inspires little knots of inflammation to gather and break dance in joints, muscles, lymph nodes and vital organs. Steroids are often used to treat the symptoms of sarcoidosis. A ccording to the Cleveland Clinic, 10 to 30 percent of sarcoid patients have my kind of sarcoid: the chronic kind. In my struggles with this often misspelled disease, I’ve learned a few things. In fact, my disease has been (dare I say it…) the best (…and by best I mean most relentless, humbling, homework-on-the-weekend) teacher I’ve ever had. I’ve been a student in the school of sarcoid for a little over a year now. In that time, I’ve experienced anger, confusion, regret and have been so disenfranchised with the entire medical community that I refused to watch “Grey’s Anatomy.” Yet ironically, since my diagnosis I’ve learned to more fully appreciate the value of love, the importance of humor and that sometimes simply getting out of bed is the bravest thing you can do. Please understand — I’m not an expert. I’m a C+ student still struggling to comprehend the curriculum. But since my enrollment, I have learned a few things about coping with a chronic illness that I would like to share… 1. When you’re in pain, it’s OK to be selfish and take care of yourself. 2. Talk openly about your illness. Your advocacy will help others 3. You may need to modify your eating habits. 4. Just because you feel like crap doesn’t give you the right to be a jerk. 5. You may not be able to control your illness, but you can control how you respond to your illness. 6. Keep a journal of your symptoms. 7. Keep your doctor’s appointment. 8. Schedule morning doctor’s appointments and celebrate the appointment with lunch. If possible, have a beer — you deserve it. 9. Be a self-advocate. Ask your doctor questions and demand answers. 10. Network with other patients. 11. Don’t be ashamed of your disease. Everybody is dealing with something. 12. Have your doctor write you a letter detailing your symptoms (and if applicable, give the letter to your employer). 13. Accept your illness. Denial will only compound your pain. 14. Be kind to others. Kindness is a great distraction from your pain. 15. Be patient with your medication — sometimes finding the right medication can be a long, tiring process. 16. You’re tougher than you think. 17. Do something constructive — find an outlet for your pain. 18. Use the internet as a vehicle for seeking support. 19. Read medical journals — even if you don’t understand every word. 20. Continue to hold yourself accountable. Follow this journey on Write On Fight On. The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.