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

Ready for His New Wife and What Men Really Mean

Mrs: How did you get me to marry you again?
Mr: Deception.
Mrs: Ah

***

Mr: I’m getting a dog when Tennyson goes to college.
Mrs: NO. It’s me or the dog.
Mr: (No comment)

***

Took over 10 years, friends, but I finally did it. Decoded Malespeak:

You look pretty, honey. (I want to have sex with you.)
Mmm. You smell nice, honey. (I want to have sex with you.)
That’s a nice outfit, honey. (I want to have sex with you.)
What a great dish, honey. (I want to have sex with you.)

***

Mr: Here, let me take a picture of you.
Mrs: No. I’m chunk-a–munk.
Mr: Oh, no you’re not. I want a photo for when you die.
Mrs: ?????

***

Man’s own words

***

Mom: Remember it takes a year for the Earth to revolve around the Sun?
Boy: So that means the Earth’s revolved around it ten times since I was born?
Mom: Yes. As I have around you these ten years.

***

Mrs: It kills me that one day he will grow up and know heartache, that he’ll suffer at the hands of a girl. Pause. Women are powerful.
Mr: Yeah. It sucks. They take your HEART, they take your MONEY, your self-ESTEEM. They take EvErything.

***

[Speaking of postpartum depression]
Mrs: Actually, I haven’t been depressed since I met you. Pause. I’ve been pissed off like hell, but not depressed.
Mr: You’ve been too pissed to be depressed, ha ha ha.

***

On her last birthday:
*Taking wife’s hand, sentimental* Oh honey, when you were born, the angels…
the angels…laughed. Detour. They laughed…at me.

***

9 Years Old, bedtime:
Boy: Can you see me?
Mom: Yes.
Boy: Even in the dark?
Mom: Always. Even in the dark.

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.

Our Final Day and a Deal With God

I wonder if she woke feeling any different that day, if she’d had any telltale dreams. We women have our sixth sense about things. But she probably had no inkling that it was her last dawn, at least on this earth. It was a sudden heart attack. Who did she greet on the way out of her building? Who got the last of her smiling gift? Who gave her her last hug, reminded her that she was loved? Susan Irene Fox is not the first blogger I’d known to have passed – she is, actually, the fourth on WordPress – but her death hits close to home. She reached out to me, put me on her prayer list three years ago, in response to a difficult post I put out. I just revisited our emails, the comments and the guest post Single At Sixty she left on this blog, a brave, humble confession of loneliness and the peace she claimed. She was a kind, giving person, one who had nothing to prove but the truth that had transformed her life.

I think of people hungry for life who dance on the edge of death. Adrenaline junkies, athletes, addicts of all stripes who run to meet Goliath and nearly die so they can live again. I am not so brazen. I have felt a generosity upon my life, knowing the ground can slip from under me any moment. I imagine that Susan, had she known, would’ve wanted more time. More time to do the many little wonderful things we choose to leave undone: forgive, hold, kiss, dance, linger. For me, I feel a greater urgency in the writing as I wonder how many hours remain in my ledger. I could travel more, see more of people and the world to say I’ve lived, but I would be just a consumer in the enterprise. I would rather leave something behind, namely, more poetry, which though I am just a vapor will endure until the sun should die. That is a marvelous thought. My breath on the page, a legible love and memories – a great honor.

Honey, if my brain ever ends up sustained by a machine, if you don’t see the tears and recognition in my eyes, if I can’t make your amaranth and tell Tennyson to do his math, you have lost me already. It’ll be just a ghost of me on that bed and I want you to pull the plug. Don’t extend me beyond my time only to leave me a burden, neither living nor dead, without my words. I pick my lane, the freeway stretching North. But in exchange for the Mexican wife you’ve said you would get, I ask for one final gift: my own little pine box. You are so good with your hands. I know, I know. I put you to work to the end. But you’ll be a free man after that. It should be perfectly within the rights of a man to dignify his wife with a final custom home and tuck her away in the mountains. While you’re at it, bury me with a book. I won’t be needing the Bible anymore. I’ll be in it, getting it 3D! It’s not like I can take this blog. How freaked out will my readers be if I wrote them from the Other Side? But I won’t disturb anyone, buried with my nose in a book. I’ll pick it out and put it in the master where you can grab it easily in the whirlwind preparations.

Dear God,

It’s me again. Remember, I’m the one who sends back her plate when it’s not done right. And though I know the cooking will be just right for Goldilocks there, I’m also the one who’ll be bothering all your best writers and asking that you not room me with a fellow Type A. Don’t forget that I’ll be looking for Eve. What a MESS that girl’s got us all into! So how about we make a deal? Give me just twenty more years so I might hold my grandchildren and make sure their mother doesn’t feed them junk, and I will turn my keys in, no questions asked. You are juggling so much at the moment: our presidency, North Korea, the refugees, not to mention the missionaries who’ve been asking for you. Why don’t you take a break from my small affairs, drop me from your radar for a bit. A thousand years is like a day unto the Lord. Why, I’ll be there in no time. And one last thing. Please tell Susan I said hi and bye, that I miss her – and she doesn’t need to save me that seat.