Cancer, COVID-19, Game On

The Surprise

I woke up with a big lump in my neck the Wednesday before Easter in 2018. My wife was on her way back from a business trip. That night I went to the hospital because it was getting worse. She met me at the hospital, I had emergency surgery that Friday because they didn’t know what it was. I got the call from the doctor that Tuesday. He wanted me to come in, I asked him for the news over the phone. Stage Two Hodgkins Lymphoma. It was in my neck and a node behind my heart. Close friends came over that night. I wanted a second opinion for the course of treatment, and my father who’s worked in the health care industry many years got me an appointment at City of Hope for a week later. They confirmed the diagnosis. We didn’t cancel the trip we had planned to DC. The doctor said we could take it. We went on the trip with the boys, thinking it might be our last vacation. We had a great time but my wife got upset with me when I kept stepping away from the family at times. She wanted me to be more present, didn’t know I was having my moments, passing by these monuments, looking at the three of them, feeling like a ghost.

The Journey

August 2018: With Family During Chemotherapy

We came home, I started treatment end of April, which went through Sept 2018. I started eight rounds of chemo. My wife wondered how I was going to handle it ‘cuz I hate needles. Thirty-seven pokes. I documented my journey on Facebook, calling the day we got the diagnosis Day Zero. Highs and lows. I wanted to show people that God had this under control. We were not going to be fearful. We were going to be fearless. I didn’t paint a pretty picture but a realistic one. I told people the days I felt like absolute junk. I wanted my boys, who were nine and seven at the time, to know that whatever happened to me, God had a plan and it really made an impact, I think. Their class, their school, their teachers, our Little League, my CrossFit gym, our church, my dad’s church, the whole community was behind me.

Fear

When you get cancer, it’s what everybody feels right now with COVID-19. Keep social distance. What everybody is concerned with right now is what a cancer patient deals with on a daily basis while they’re going through treatment. We’re told that if we have a common cold, a fever of 99+, we gotta go to the hospital. So I’ve lived this. My family has lived this. So what people are concerned about – welcome to the cancer world. At the same time, everybody’s cancer journey is personal. And you can’t tell a cancer patient how to act and react. But I chose to be proactive, use common sense. I never stopped working and working out. I stopped traveling because I didn’t want to get on a plane. But I still met with customers. I practiced good hygiene, washing my hands. I would still shake people’s hands when I was sick, though I would do a lot more fist-bumping. because I had a great God. I was not going to let the cancer dictate my situation. Was I scared? Yeah, but as a believer in Jesus how can I be so scared that I was gonna stay tucked away in my house? No matter what happened, God had it under control. I used the strength of the community to give me that guide. Text messaging, phone calls, video calls, what people are doing right now I did a lot. But I’d still go out in public, I’d still go to gyms and still work out, but I’d use common sense and listen to my body. I exercised, ate the right foods.

Making a Difference

We started a company called Move through Motivation with the people that actually came to my house the night I found out I had cancer. I’ve known these people for 15 years. We have a Youtube channel, a podcast about my mission and the story behind the story. The podcast shares people who’re going through struggles and what their life is looking like right now. Feel free to go on. I wanted to start a company that got people even just walking, exercising in an encouraging environment to show them how that would keep them healthy. And so Pray and Move is a small group we started in 2017 with some guys from our baseball group and friends from church, and we meet every Sunday morning at 5:15. We’re still meeting every Sunday. Because the parks are closed, we’re practicing safe social distance running on the streets in our neighborhood. This past week there were six people that came. I’m a military man, served in the US army, I deployed in 2003, was in a severe accident, landed in the hospital. I’ve been through many tragic experiences that have set me up for this and to encourage people in this current situation. But further than what’s going on with COVID-19, my goal is to help people with health. So if you’re sitting on your couch all day, I want to be the encouraging voice that says let’s get up and go for a twenty-minute walk. If you need an encouraging group, I can find people you can be accountable to and I will be that motivation, although I can’t be the driver. The drive has to come from you day in, day out. I want my company to inspire people. Before COVID-19 hit, we were about to start a Just Move campaign with our two neighboring cities to help families come out and move, provide fun activities. If I can change the mind of just one person to walk just twenty minutes everyday, to do something more than what they were doing months ago and start them on a track to health and wellness, normal and healthy people will be able to fight a pandemic like this. The cancer didn’t define me. It just motivated me to help others any way I can, whether they’re going through cancer or just struggling to move more.

What happened at the end of your treatment?

The chemo killed the cancer cells. I’m in remission. We get a five-year window. So far after a year and five months, I’m clear. I scan every six months.

What was the greatest lesson you learned?

Spread love and positivity in dark times. When you go through something trying, you have a different perspective on what life’s really about. Spread love.

 

A big thanks to Matt for this conversation, his strength, love, and service. He roves the church (when we gather) looking for ways to lighten the load for everyone. Be sure to catch the awesome Youtube he filmed the day he got his diagnosis, and plug into his podcast and adaptable daily regimens on his Facebook page.

Please address comments to the blog host.

 

Autistic Genius

Being alone was one of the bitterest disappointments of my young life. People made fun of my stilted manner, my pedantic speech, and my detachment from other people.

I walked through the scenes of my life like an outside observer, stepping carefully over the rubble and staying out of trouble. There was very little happiness in my world. Luckily, I had a natural gift for understanding machines and making things work. But people were a complete mystery to me.

– Switched On: A Memoir of Brain Change and Emotional Awakening

Smoking Guitar John E. Robison Designed for KISS. Pinterest.

You may have brought John Elder Robison into your home in the 70s if you watched TV or played with an electronic toy. His was the brilliant mind behind the guitars that breathed fire and launched rockets and drove the KISS fans wild from the stage. The sound equipment he built for Pink Floyd’s sound company played before millions across North America. But he left the world of rock and roll thinking himself a fraud and failure, unable to see his value in the social fabric because he couldn’t read social cues. John didn’t know he was successful because he didn’t feel successful. So he moved into the corporate world, engineering electronic toys and games for Milton Bradley until he climbed the ladder where at the peak he found himself managing engineers, and social skills became more important than technical expertise. Although he remained troubled by people’s response to the differences that were evident in him, John didn’t know he was autistic for 40 years until he picked up Asperger’s Syndrome by Tony Attwood. Nor does he consider himself a genius, but Malcolm Gladwell will disagree because by the time John was 20 years old, he had spent well over 10,000 hours studying music and taking apart electronics, beginning with repair and eventually creating circuits of his own design. John made full use of the laser focus and prodigious capacity for knowledge that was characteristic of Aspergians alongside his commitment to hard work to carve for himself a fulfilling life. His first book, New York Times bestseller Look Me in the Eye, opens the door into the mind of autistic children and those who seem disconnected from the world. I was deeply touched by the testimony that takes us past the struggles of the autistic to the hopes of connection and belonging that embody the human spirit. Our celebrated guest, who has appeared on the Today Show and given countless interviews and talks throughout the country, has graciously taken the time to share some of his discoveries and triumphs with us.

Can you take us through the various points of your journey where you successfully applied your gifts in the face of obstacles?

With a drunk, violent father and a mother who was often manic and sometimes out-and-out crazy, my home life was chaotic and unpleasant. Teachers sometimes saw flashes of exceptionality in me, but that was overshadowed by the many deficiencies kids and adults loved to point out. With no support at school, I dropped out at 15 by which point my parents were in states of collapse, both of them having been committed to the state hospital numerous times.

There were no disability supports for kids back then, at least ones like me. I still managed to have a lot of fun as an emergent adult, playing music, riding my motorcycle, and tinkering with cars and machines. Musicians and car enthusiasts welcomed me because I could do things they valued. Knowing my social limitations, I realized I would never be the guy on stage playing the guitar or the driver racing a rally car to victory. But I could be the guy behind the scenes with the technical skills to help make those things happen. I also became good at fixing cars and between those things, I made enough money to get my own apartment.

I am really lucky to have the ability to fix and create things that others value. Repairing a car or a broken electronic device is a skill that is useful everywhere. Creating stories also has universal value. At first, I wrote reports and proposals for clients. Then I wrote articles in car magazines. After learning about my autism, I decided to write a book and then wrote three more. Now I am back to writing car articles and stories on neurodiversity while running a business that restores, sells, and services high-end cars.

My parents had their share of problems, but despite alcoholism and mental illness they were both successful teachers. I think they would be proud to see that I’ve followed in their footsteps. I enjoy learning and sharing my ideas as the neurodiversity scholar at William and Mary and the neurodiversity advisor for Landmark College. I get to speak on autism and neurodiversity at other colleges every year. As my father did as a professor of philosophy, I grapple with difficult ethical issues in various settings like government autism committees.

Creating pictures, also something I enjoy, too has helped me find success. I earned the down payment on the garage complex of my car company from concert and carnival photo royalties. Today I am proud to see hundreds of musicians and circus performers using my images, which have been widely published, from the pages of the Wall Street Journal to billboards along the highway.

Patch.com

What compelled you to reach for success over against your difficult upbringing and social disability?

Looking back at what I’ve achieved, I guess one thing is how important it was to me that I produce good work. The absence of security in my childhood also gave me a very strong drive to make it. I made myself successful as I learned how to minimize my disabilities to the point of acceptability and how to build up my gifts and find people like those musicians who could appreciate what I could do and whose minds were flexible enough to excuse what I couldn’t do.

I believe knowledge of autism at an earlier age would have changed the course of my life. Without the understanding of what made me different, I grew up thinking I was a second-rate human being. Today, with a large number of extremely successful clients in the auto restoration field, I look at myself and them and see how much social disability had held me back. At the same time, I see how far logic, reasoning power, and technical skill have brought me. These things gave me a strong desire to prove I was good and drove me to my various accomplishments.

You’ve cited studies that measured the internal physiological response of autistic people in the face of emotional prompts like watching someone get poked or hurt. Turns out autistic people sustain a stronger response of empathy than nonautistic folks for longer, at that. Could you talk about autistic people’s capacity to love?

Autistic people have the same capacity for love or any other emotion as anyone else. We just don’t always show our emotions in the expected ways, or to the expected degrees. And our emotional responses may not be the same as those of a person who is not autistic for a given triggering event.

How did you manage discouragement?

I just kept working. I failed at things, lost jobs, made and lost friends, but through it all I just kept going because I had no other choice. The weight of that mantle of sadness was very heavy for a long, long time. It’s much less so today. I have always wrestled with anxiety and depression.

Who inspired you in your journey?

In whatever field I worked there were always older engineers and technicians who seemed to be better at everything I could do. They challenged me to improve my skills. Looking back, I am not so sure they could actually do everything better than me, but being older they certainly possessed more wisdom and experience, and many had families and lives outside work, which I hoped to have one day (and eventually did).

For the longest time I internalized my failure in school and saw myself as just a high school dropout, an uneducated failure. I wish I had models who succeeded outside the mainstream but self-educated people are rare today, although they were quite common before the rise of “big education” in the 20th century.

I may look and act pretty strange at times, but deep down I just want to be loved and understood for who and what I am. I want to be accepted as part of society, not an outcast or outsider. I don’t want to be a genius or a freak or something on display. I wish for empathy and compassion from those around me, and I appreciate sincerity, clarity, and logicality in other people.

– Look Me in the Eye

Hit by a Train

I was crossing a rough set of tracks in a 28-wheel diesel truck in October of 2013 when to my astonishment and fear, the crossing gates suddenly dropped, the reds lights began flashing, and the warning bells rang. With not even time to think, all I could do was tighten my grip on the steering wheel. I watched the train come at me before I heard the metal on metal and felt the impact. Everything slowed to a deafening silence and darkness.

When I came to, blood was running down my face. It was over half an hour before someone showed up to help me out of my twisted cab. It took that long before the 107-car freight train could stop after pushing my trailer down the tracks more than a mile and a half and the engineer could reach me on foot. I fell limp into his arms. After a grueling ambulance ride to a clinic, I was emergency-evacuated by helicopter to a medical facility an hour away. A priest there told me it was a miracle I was alive.

I suffered a major concussion with loss of consciousness, contusions on my chest and lungs, and open lacerations on my face. Thankfully I had not damaged any organs. A nurse said God was not finished with me yet. After three days of stitches and morphine, I was discharged into the care of my wife who flew to North Dakota from our home in California.

We discovered weeks later that my jaw had broken and my wrists fractured. The right one got a cast and the left was left to heal on its own. Nine weeks after the accident, my jaw had to be rebroken, realigned, and held together with a titanium plate. I drank Christmas and New Year’s dinners through a straw. Even long after the surgery, it hurt too much to chew, and I remained weak, constantly dropping things. I had never known pain like what I had in my neck and back.

Making my way through 24 specialists, I was diagnosed with anxiety, depression, PTSD, nerve damage, and chronic back and neck pain. I went from being healthy and active to depending on a cocktail of sixteen drugs: pain meds, psychiatric meds, muscle relaxers, sleep meds.

The valley of the shadow of death was no metaphor for me. And told by my doctors that the pain and terrors would be forever, I set up camp in that valley. For several years, I could not drive from the trauma and hardly left my room. Most days I hid beneath the covers, hanging thick blankets over the windows because the dark felt safe, although it didn’t relieve the pain as I imagined it did. The nights were the worst with the horrible nightmares. And startled, I bolted up in bed anytime I heard the train pass.

Was this how the rest of my life was going to play out? The anxiety took a serious toll on my family. My uncontrollable bursts of anger was growing too much for my wife and damaging my relationships with my daughters. I was not the husband or the father my family knew.

Something had to change. I needed to change. I had cried out to God for help and heard that whisper, “Are you ready?” in answer. But no, I wasn’t. I had settled for what my life had become instead of fighting the good fight for His best for me. Seeing me in excruciating pain three months ago, my wife prayed, “Lord, I’m not even asking for healing at this point, just mercy and grace,” She heard back, “I have already healed him. The rest is up to him.” She did not know about the book by John Sarno that our blog hostess HW had encouraged me to read. But I was tired of hurting my family, tired of being estranged from caring friends, tired of all the medications, tired of the suffering, tired of living. I told God I was ready and picked up the book.

In Healing Back Pain, Dr. Sarno, who had freed thousands of people crippled from pain, explained the mind-body connection and how emotional pain seizes the opportunity of a physical injury to make its home there. Though he made no spiritual references, I was brought back to Biblical truths I used to teach on the importance of our thought life. I realized I had to see myself healed before I could embrace my healing. I changed my self-talk and stopped coddling myself. I slowly but purposefully started exercising and through very difficult withdrawal symptoms, weaned myself off the meds. I am down from 16 to 2, and am reminded that I need to hold that picture of myself drug-free.

Six years, four months and counting, I am free. No more bone pain throughout my body. No more anxiety and depression. No more PTSD. No more pain killers. I grab a gallon of milk with no thought. I recently drove over six hours from Los Angeles to Las Vegas and back home, my back just fine. I work out regularly and the other week went skydiving for my 60th birthday. Eager to get back to the working life, I am at a new job and excited for what the year holds for me.

God sure isn’t finished with me. I am just beginning.

Dino Fulton

It’s All in the Suffering

photy.org

I was going to say no, I didn’t fall off a cliff, but actually, I did. And though I lay on the rocks, wishing nothing more than to be wiped off the planet, I somehow made it back up, half-carried by angels, broken bones and all. The bruises linger, but the bones, to my wonder, have healed and the bleeding stopped. I wasn’t done for. As long as I had breath, as long as I could form my words, the world had a place for me. Like the page in this year’s California’s Best Emerging Poets anthology. And the classroom in the private university where I taught composition this past semester. I had walked past that door many times early this year, wondering why a job at a homeschool center across the street wasn’t working out, when God had my name on that door, His writing on the wall. We launched Drummer Boy this Fall. (After 12 years of indentured servitude coupled with preteen warfare, I was done. I practically threw him over the school fence.) It was time for me to launch, too. I enjoyed the teaching immensely, and although the steep learning curve on school protocols, the grading platform, and the amount of writing to grade made for a ride under a dam that had burst, I didn’t feel mentally challenged. And the impossible hunger pangs for the writing – to do it, not just teach it – didn’t help. I’d been away from the page too long.

In thinking through what the upcoming years might look like for me unchained to my son, I discovered the other night a generous, astonishing opportunity a prestigious institution had extended me on LinkedIn months ago. Two, in fact, when I failed to respond. I glossed over the solicitation before tearing up the golden ticket and tossing it not only because the timing was implausible for me as a mother, but because it was such an amazing invitation I couldn’t wrap my head around it. Then there was my age: my son’s long-awaited self-sufficiency would put me over 50. Yes, I want to build a career with the teaching and writing, but I’m supposed to start tiring after 50, not go pursuing the academic equivalent of a rhino chase on an African safari. But Awesome Friend #1 started taping up the ticket: It seems doable, she wrote. And Awesome Friend #2 pressed it in my hand : Why limit yourself? Who cares how old you will be?

Turns out, I was the only one who cared. I was the one who intended on losing steam after 50. And as the playback on my life revealed, I was the one who’d chosen the classrooms with the low ceiling all these years, afraid to prove I really wasn’t smart or capable. But we won’t find our greatest self where it’s safe or comfortable. Retired Navy SEAL and seemingly superhuman athlete David Goggins says we have to suffer. He named every fear he could before running straight into each one because it was only when he had to decide if he would go on with the broken leg and bloody hands that he met with his highest self, not when he was downing a dozen doughnuts on the couch at 300 pounds. He discovered “that the answers are all in the suffering.” Accustomed to them, I am very good at anguish and affliction. I am less skilled at mapping the endurance into lasting victory beyond survival. Hope is not a plan. And no matter how we might dress it with color on a vision board, hope glorified, called a dream, will remain nothing more than a pretty picture without concrete day-in, day-out goals we move toward both physically and mentally.

I am coming out of a brutal year, one in which I faced the hardest truths about myself. And yet grace has met me in the dungeon, thrown open the doors, and held up a breathtaking life that is mine for the taking if I will shed the self-doubt and get to work. At just a few words from friends who wouldn’t let me shortchange myself, my life took on sudden definition. So I’ve drawn up a game plan that will reorder and fuel my life, the things time and stress had gotten in the way of, but that now tangibly serve a larger purpose, from organizing my house to working out again, studying, and writing. No longer am I sitting and hoping that my writing will be good enough and that the future will favor me. I’m gettin’ up to go git it. I will make my work good enough, silencing the imp on my shoulder that’s whispered all my life: but there are so many writers better than you. I shoved Goggins’ book in her face and refuse to hear her out anymore. I couldn’t care less who’s over me or in front. I will continue to write as though my life depends on it because it does. God has shown me that the works I have published and the classes I have taught are only a prelude to what He has in store if I will reach for the life that is bigger, so much bigger, than my failings and my fears.

Sometimes They Love You, Sometimes They Don’t

I would rather be read than seen, but delivering my poem on that stage to an audience serious about art and beauty was one of the most gratifying experiences of my life. I have watched my favorite poets online present from their book at readings the way I’ve appreciated figure-skating on the Olympics channel. Very cool, and fat chance that’ll ever be me. But there I stood – while part of a collection – sharing my words out of a book. I was just a blade of grass, but had left the desert.

Beautiful cover, isn’t it? The SDPA is out on Amazon and Barnes & Noble, and in all the San Diego public and university libraries in California. The 13th edition contains poetry from emerging and established artists in the region along with the international poetry contest winners. Apparently, the honorees from the competition comprised 1/9 of the submissions. We had to have made the final lists of two judges. To be able to read my work among distinguished guests including the Poet Laureate of San Diego, and receive the feedback I did were no small affirmations. I took the gift as a hard-won treat in wrapping up a school year that had revolved around my son.

People back home were so happy for me. It felt like I was finally getting somewhere – not I the mother or educator, but the writer who no longer remembered what she looked like apart from the mirror. And then life spun its crazy turns.

I refrain from the details, partly to keep the bleeding in check. But long sad story short, I found myself misrepresented sorely in the eyes of someone in authority at the hands of someone I had liked and trusted. The roughest of the ride behind me, I stand, shaken but more secure. I was able to move away from the anxious indignation, so bound up in the ego, to the stuff of real consequence, trust in God’s redemptive plans. I am a note in His symphony – a reminder both humbling and exalting. There is much more to my life than…me, and what people think.

The self-help gurus tell me I can be anything, do anything, and success is to be found in strength. In the quietest, deepest places, I know real growth comes by loss. If I am to offer up my God anything, I need to have something to give up. What can I surrender when the sun smiles upon me, when readers throw bouquets of praise, when my child is winning awards? Without struggle, there is no conquering.

When Life Doesn’t Cooperate

JK,

I wish I had the words and muscle to help bear your load. You have borne your distresses with such amazing grace. Caring for the elderly becomes much like the labor over young children and you are pressed on all fronts with little margin to tend to your own needs.

Ariel Levy, staff writer at The New Yorker, recounts in her memoir her traumatic miscarriage out in Mongolia at five months. She speaks of grief, loss, growing up, thinking she had been getting somewhere with her career, love, playing house, motherhood, when it all came crashing on her head and she realized she’d just been driving around. She longs for her lost child in the crushed dream of motherhood, and confesses the fear of being without a companion. I thought of you but also of us all.

She quotes a famed writer, a woman in her ritzy apartment late in life who, when asked about her unfulfilled desire for children, answered simply that everybody cannot have everything. Ariel came to see – slowly – that we can have some things. I would add that every gift, every station in life, comes with a dark side we don’t think too much about in eyeing what we don’t have. This side of heaven, as you know, life is a burden, the burden of our humanity. T’s hobble from a judo injury has tapered to a limp. But I am reminded that we all limp. And joy can be found in all things.

Life here has been too full. I don’t have hands enough for all that needs doing, putting one fire out after another. Preoccupied as I had been with T, it took 36 hours for me to look down and understand that my thumb was (very) mad at me and was shouting up through my shoulder. I had forgotten the freak wrench off the joint after that first scream. In the resentment at being stretched like taffy, at being kept from the writing in life’s madness and the home school, it hit me last night that I have one shot at this. No matter how hard I try in the future, I will not be able to do this day over with T, resurrect his childhood and do motherhood more patiently and sweetly. I will not be able to care for him as I would want to. In a blink these years evaporated, leaving me with the freedom I gasp for some days and the house quiet. What lessons in character that he has learned from me (by watching) will he take into the world, into his own life and family? Faced, in the past, with the choice of alter egos for a life I could relive, I would’ve – so satisfied with my person – chosen my present self. Now, I would jump at the chance to be anyone else. Someone better at happiness, someone who knows worrying saves no one. In all that selflessness of yours, be selfish with the joy, JK. I don’t envy you your sorrows but no need to look this way through frosted windows.

Love always,
D.

Dear God, yes, I’ll take Combo #4. The family free of injuries (could we throw in my parents?), obedient child, antiaging powers, and that book deal we’ve talked about. But on the days that a smile is a workout, I’ll take it à la carte, the grace just to get through and to know You’ve got this.