Steven Spohn: Your Last Good Day

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Steven Spohn is COO of AbleGamers, a charity dedicated to helping gamers with disabilities. He’s also a hella good dude and a nice guy and a champion for a lot of people, and last week he wrote a post on his Facebook that connected with me in a really big way. Please to check it out, and if you are willing and able, consider supporting AbleGamers.

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34 days ago, I lost the ability to drive my wheelchair and with it… my independence.

You see, my disease, SMA (Spinal Muscular Atrophy), is deteriorating my muscles at a very slow pace. Over time, my abilities are being torn away due to the atrophy that sets in from not using groups of muscles. The same thing would happen to you if you were to stay in bed for months or years without moving. Astronauts experience some of what SMA does to the body after being in space for long periods of time where you don’t have to fight gravity to lift your body weight.

Basically, if you don’t use your muscles, you lose them. Keep that in mind the next time you decide to skip out on leg day at the gym.

John Green captured the disturbing truth of living with a progressive disease in The Fault in Our Stars. The main protagonist, Hazel, riffs about life “There’s no way of knowing that your last good day is Your Last Good Day. At the time, it is just another good day.”

Your Last Good Day is a day like any other day. The limitations in your life have stayed the same for some time. There’s nothing different about that particular day. Until all of a sudden, like a dump truck crashing through your front door, everything changes in an instant.

For someone with a progressive disease like mine, you get many, many Last Good Days.

My Last Good Day of breathing, right before I was put on a ventilator, was when I was nine years old.

My Last Good Day of driving a wheelchair with a standard joystick controller was right after high school.

My Last Good Day of using a computer keyboard was a decade ago.

My Last Good Day of driving with a tiny joystick using my thumb was a Friday in late February.

The thing about this concept is that it’s not limited to people with disabilities. In fact, like many subjects, the real difference is that they’re amplified for me. But you’ve had your own set of Last Good Days. Maybe you just haven’t thought about it that way.

Your Last Good Days look entirely different than mine and entirely different than everyone else’s. Yours might be something like your Last Good Day of seeing without glasses, walking without pain, lifting without discomfort, or eating a piece of cake without it going straight to your hips.

Each of our lives are full of Last Good Days.

Truth is, you and I have an invisible clock above our heads. It began the second you were born, counting the number of days, hours, minutes and seconds you still have on this Earth. Even with a terminal illness, you don’t think about the clock. You’re busy living your life. The best life you can. The best way you know how.

But every once in a while life has a way of reminding you that the clock is still ticking.

On that random Friday, I was doing the same things I do every day before getting a harsh muscle spasm in my thumb that would take away my freedom. Eventually, I’ll figure out another way of operating my wheelchair, but it will never be the same. That portion of my life is done.

Rather than let it get me down, I’m choosing to use this as a reminder to live life. And I am officially inviting you to join me.

Since that day, I’ve started living life as an active participant, beginning to go after goals and reach milestones–things I’ve put off for far too long.

Okay. That’s a lie. For the first couple of days, I ate a ridiculous amount of pizza and ice cream because everything is made better by pizza and ice cream. EVERYTHING.

After THAT I started living life as an active participant, beginning to go after goals and reach milestones:

I reached out to 3 of my biggest idols and asked them to be a part of AbleGamers.

I entered a contest to co-write a novel with James Patterson.

I took a phone call with the White House.

I started learning Japanese, again and have continued the lessons every day for a month.

I emailed 3 celebrities sharing my story and hopefully beginning my inspirational, Tony Robbins wannabe career.

What do all of those things have in common? They were all scary and they were all things that I have wanted to do for a long time, but I either “never had the time” or would “do it tomorrow.”

And this is where you come in. I know your first reaction is going to feel sad for me and want to offer your support. While I appreciate the gesture, I have an alternate request.

We all have things that we have wanted to do for a long time but there’s always an excuse, a reason something doesn’t get done. Instead of posting sadness for my derelict thumb, I want you to do the following:

Post TWO (2) things you always wanted to do but never got around to starting, and promise me you’re going to start now.

Did you always want to learn how to be a better cook? Great. Look up and sign up for a class.

Have you always wanted to write? Fantastic. Open a word document tonight and begin.

Maybe it’s learning another language, emailing a celebrity you wish you could interact with, reaching out to an old friend to tell them you appreciate what they did for you, or whatever is in your heart. The point is to start TODAY.

Remember, although life is long, time is short– you never know how many Last Good Days you have left.

* * *

Steven Spohn is the COO of AbleGamers charity, award-winning author, and advocate for people with disabilities. Featured on CNN, NBC and other mainstream news outlets as an assistive technology and game accessibility expert, Steven brings all his knowledge and much more to championing for people with disabilities in the video game space as a means of defeating social isolation. When not writing or doing charity work, you can find him reading the latest sci-fi novels or cracking jokes on social media — @StevenSpohn or Facebook.com/StevenSpohn. He currently resides outside of Pittsburgh, Pennsylvania with his two cats.

61 comments

  • Thank you, Chuck, for posting Steven’s message. Weird the way the universe works… but I needed to hear this – today, right now.

  • I second what PW said above, thank you, Chuck, this is exactly what I needed to hear today. And thank you, Steven for writing this piece, you blew me away with your positive attitude.

  • What an incredible human being.

    Something I’ve been wanting to do–learn another language.
    I’m not sure how learning Spanish in Korea will go, but Duolingo’s pretty cool.

  • Wow Steven, what an inspiration you are! Thank you Chuck and Steven–I’m another person who needed to hear this today. I’m going to save to read again and again.

    I’ve been wanting to redo my website for 3 years. I think today’s the day I start!
    I’ve wanted to learn to paint (art–not walls:). Time to find a class and sign up.

    Thank you!!!

  • That’s real clever, telling me to go do something I’ve wanted to do when what I really want to do is make a donation to AbleGamers. And is that a Pokeman on his shoulder? Love it.

  • While reading this gorgeous post I remembered My Last Good Day as a mom of four little boys (before I transitioned completely into the mom of boys and adolescents). It was an entire day in the car, driving from Texas to California. Singing silly songs and limiting soda and purchasing a bag of plastic army men. Thank you for bringing me back!

    Two things I want to do to but have been avoiding:

    1) Grow a Wild Garden (I started two weeks ago).

    2) Pitch my screenplay to a producer via Skype. (I’m really really really nervous about this one! I have so many creative justifications for avoiding it. I promise to start, today, using that creativity to practice my pitch out loud and to say “yes” the next time I’m offered the opportunity.Oh, my, I feel so many butterflies in my stomach just typing those words!)

    Thank you!!
    ~Tsara

    • I remember vividly the day my daughter realized there had been a last time she’d ever crawled in my lap, and neither of had known at the time that it was the last time. She was sixteen or seventeen when she had this realization.

      Everything is change.

  • Great post!
    I recently was in a bad car accident that totaled my vehicle, but I was able to walk away with only minor injuries. Steven’s story is perfect for my mindset right now. Despite the accident, I count myself lucky to be alive and the day of the accident a GOOD day filled with hugs and laughter.
    It’s hard to slim my list down to two things, but I’ll just go with what pops into mind this moment.
    1. Teach someone how to play the guitar
    2. Reach out and meet other writers

    Jack

  • Thank you for sharing this. One of the things I have always wanted to do, I am working on right now; being a writer. The other thing I want to do is be my own boss. I was a classroom teacher for too long and I want to be the one who calls the shots. Much love and light coming to you, Stephen.

  • April 6, 2016 at 10:36 AM // Reply

    Thank you for this beautiful piece of wisdom, Steven – and Chuck, for sharing it. I have a list of things I’ve been putting off. One is to learn German, which is my mother’s language. And another is to get out and actively promote my children’s book – which I haven’t done out of a combination of fear and laziness. Thank you for reminding me that the time to do these things is NOW.

  • Steven, your words are more inspirational than Tony Robbins. I am going to pick up my paint brush and get outside my comfort zone (like here) and learn to Tweet.

  • April 6, 2016 at 11:04 AM // Reply

    You’re an amazing human being, Steven. Thank you for that much needed reminder. I’m going to write today because I want to and because it’s a good day. You, sir, will be my inspiration.

    Thanks, Chuck, for posting Steven’s thoughts and allowing him to give me the shot I needed in the very moment I needed it.

  • I’m about to do something scary: acting. I’ve been in rehearsals for the last few weeks to play in a political satire play that happens in my city every year. They accept everyone, from experienced actors to someone like me, who hasn’t acted in his life. I’ll be playing Captain Obvious, and I’ll have one line for each of five skits. Should be easy enough for a stage virgin.

    Next year, I’d like to expand the roles I could play at the show, by learning to sing. Each skit has at least one song, but I can’t sing, so I’ll start learning.

    Oh, and get my first novel written and published.

    So is that two, or two-and-a-half (since I started one before reading this post), or three? Anyway, great post. Thank you Steven for your inspiring words, and thank you Chuck for sharing his story.

  • Okay, then, challenge accepted. I narrowed it down mostly, except that I just couldn’t get any more Sophie’s Choice about it, so I’ll just call the third one a bonus.

    1- Make my blog happen all the way. You don’t need to know what I mean by that as long as I do.
    2- Write that novel without lollygagging and lolling about and kicking up dust as I circle the computer.
    Bonus- Put together that book of poetry I’m hauling around in a binder to open mic readings.

    Thanks, SS. Very good post.

  • Thank you.
    I’ve wanted to write for, well, ever. So I’ll be doubling down on that.
    But another thing I’ve always wanted to do is sing. Not Kelly-Clarkson-On-A-Stage sing, but as part of a chorus, ya know?
    So I’ll be looking into that.

    Thanks again.

  • What you said. Read and learn, fellow baby boomers! OK. My two things. (I’ve actually been able to start “serious” work on several things because I retired last year, but here’s a couple.)
    1) You know how Gandhi said we should be the change we want to see in the world. I’ve been in and out and on the periphery of the Fat Acceptance movement since 1983, and have never seen my concerns and beliefs articulated accurately. So, I’m finally writing the Fat Book, a collection of essays on the subject. It may well piss of some fat activists, will certainly piss off plenty of thin supremecists, and, if I can write it courageously enough, may help bring a little bit of freedom and justice back to the world.
    2) The Milledgeville Pilgrimage to Flannery O’Connor’s farm in Georgia (including travel on the Old Spanish Highway and other historic named roads.) I may start that trip with a revisit to Salvation Mountain, because Flannery would have loved Leonard.

  • My last good day without crippling depression was too long ago for me to remember.
    I will work on my shitty new book today.
    I will get my drivers license.

  • Thank you for sharing your story and perspective. It is inspirational and your challenge is thought provoking. With that in mind, I’m slowly making progress on goal one, but I’ve let it slip, I will return with renewed focus- I want to sell my photography. And secondly I want to travel somewhere new completely on my own and just experience the time and activities on my own.
    Thank you again!

  • One hundred and forty-two days ago was Veterans’ Day. John and I installed the new washer we’d bought on Saturday. Talked about the wedding we were planning in August, sketched out some deadlines. We went through the few pictures we had, realized his ex-wife still had most of the photo albums. Found a picture of him from USAF tech school, scanned it, made it his Facebook profile picture, laughed at how young he looked, commented on a bunch of posts from vet friends who had also posted service pictures. Promised ourselves we’d call his ex Real Soon Here and get some of those albums back so we could scan photos of him from the years before I knew him. Played with the dogs, made lunch, drank a beer at two in the afternoon. Took a nap. (ahem.) Spent two or three hours kicking around backstory and worldbuilding on one of my writing projects, until he laughingly said, “Enough! More tomorrow.” Ordered pizza, watched Netflix while I worked (I’m a grad student), stayed up too late. It was a very nearly perfect day, in the incredibly ordinary and pleasant way of middle-aged empty-nesters just enjoying each other’s company.

    The next day, he had a doctor’s appointment at the VA 200 miles away. The day after that, he still felt tired from the long drive, and called in sick. By Thursday, he was really feeling off-kilter – not really sick, just run-down. He was sure he’d be better Friday. By Saturday, he wasn’t better. On Sunday, he went into the ER with what turned out to be a gallbladder infection. The ER sent him to ICU.

    He never left ICU. He died six days later.

    I remember every minute of our Last Good Day like it was yesterday. I will, forever.

    I quit my job. I left the house we shared, moved 200 miles, fled to a friend’s basement for a couple of months. Found a new job that I love. Re-homed one of my dogs, fostered the other until I got an apartment, brought her home. Learned, in the course of it, who my good friends are, have made new friends. Stayed in school, by the skin of my teeth. Started a new life. Finished the damned novel. I am putting the pieces back together, slowly. “I’m still here” has become my mantra.

    There will be other good days, but they will never again by Our Good Days. The finality of that is stunning. And I don’t have the pictures.

    But I do have that memory. Not every day gets to be a good day, but it is *a day*, damn it, so do something with it.

    • Your story is EXACTLY why I wrote this. There are SO many of us that despite all the clichés about living your best life, carpe diem, etc. etc., still continue to take the time we are given for granted.

      I’m sorry for your loss. I’m thankful that you remember your last good day together and then it was a good one.

      • The thing is – John was a cancer survivor. That doctor’s appointment, the day before he started to get sick? Was his three-year all clear. He lived – we both lived – harder and with more enthusiasm, and made bigger plans and bigger changes, in those three years, even through the chemo and surgery and all that shit, than in many years before that. And carved out the time for those days of quiet joy, too.

        And while the cancer was indescribably horrible, what chills me is the idea that the alternative, to have never had that wakeup call and that three years, would have been differently awful, and we would never have even known.

        So yes. I am in complete agreement with you, every word of it, and thank you.

    • You’re a fabulous person. So earnest and thoughtful and persevering. Grateful that you shared your story.

  • This is an amazing, wonderful post. I’m off to share it all over the place.

    As for my two things….

    First: I want to start supporting other authors by going to their signings whenever I can, so at least they will have someone there and not feel alone or unloved. I start tomorrow AND Friday, because there are two local author signings here.

    Second: I’ve been bad about prioritizing my writing lately–well, ever, really–and tend to put client needs first, even if it means I get very little writing done. From now on, I’m going to be better about setting boundaries so that I get both my client work and an appropriate amount of writing done.

    Thank you so much for your inspiration, and for sharing your story.

  • Thank you, Chuck, for inviting Steven to guest post. And big thanks to you, Steven for living life as it should be: one day at a time and as full as you can.

    One thing I’ve always wanted to do but never got around to starting – check that – made several feeble attempts that never panned out – so, technically it can be classified as new: set up the WordPress site currently lounging in GoDaddy land and begin The Blog.

    The second thing is take pics with my digital camera, then learn Photoshop Elements. I’ve always wanted to get into photography but never delved in deeper than quick shots. My goal is to create photo collage that combines nature shots with off-the-wall images.

  • I am working on starting a writers community for Veterans, based on or in-line with warrior writers. And I am publishing some of my darker, socially conscious poetry soon. I’ve marked this year as my break-out year. Successful or not, I’ll let others decide that. For me, I will make it happen.

  • What an inspirational message, thank you so much for sharing! I have always wanted to (1) Start my own publishing company which I have registered and started this week! YAY ME! And (2) travel to Mauritius to enjoy an island holiday, planning the trip for next year. Life is short, smile while you still have teeth!

    Peace & Love
    Liz

  • Thank you, Steven! I’d like to learn how to sail (beyond that one lesson I took when I was like nine). And I would like to write to my tenth and twelfth grade English teacher and tell her I thought then and still think that she was the bomb.

    p.s. I named the hero of my first published novel Steven (your spelling). He’s a man with a noble mission on behalf of others too. 🙂

  • I have been abusing my body for a long time, food being my medication of choice. As a result, I have very few “good days” any more, as the strain of being overweight is taking a far greater toll on my body and mind that I am willing to admit. My Last Good Day of feeling truly well in mind, body, and spirit was so long ago I can’t remember when that was. From this day forward I vow to make the changes necessary to have good days again. I hope it’s not too late.

    • I can relate to food addiction. It is never too late to start making healthier choices–and even when you struggle, take it one day at a time. On bad days, take it one craving at a time.

  • Thank you for sharing. I am going to appreciate my life more. My wife is struggling medically, has her ups and downs. Right now, things are a struggle, but I am going to be more politically active. Going to start phone banking for #BernieSanders this weekend and sign up to be a district delegate.

  • Great, powerful writing! A mind-bending post. I am finishing the edit on my Sci Fi book and learning Tai Chi Chuan. Thanks Chuck and Steven.

  • I’m lucky. I’m coming back from being struck down by lyme disease. For me, despite the fact that I will probably never be as good as I was physically, I have a second chance to do some of those things I missed trying before I got sick. I’m going for them with great joy. The only one I still want to fit in somewhere is some sort of dance classes with my hubby. I was telling myself there would be time to try them later (and what sort of foible of human nature lets me think that when i know very well from personal experience that there may not be a later?) For you, Steven, I’m going to make sure we go learn how to dance together while we still can. xxx

  • Stephen, DUDE, you are a King! You have what the US Marine Corps calls an ‘internal locus’ of control:

    http://bigthink.com/videos/charles-duhigg-on-self-motivation-and-subversive-instinct

    They have to teach that to so many people, but you have that fire already. And when you share your story, you share that fire. Keep it up!

    I’ve done the Patterson comp thing, and it was a super fun process. I hope you enjoy it. I can also appreciate (only a little!) your description of atrophy: I lost use of a significant portion of leg muscle after some big spinal surgery. It was like all the electricals had been cut. Like being a rubber chicken. The nerves (and muscle) grew back only so slowly and painfully.

    But that healing process also made me wonder a lot about ‘last good days’ of all kinds. And you’ve reminded me again, thanks! You’re a RL model for so many kinds of fictional heroic characters.

  • My last good day using my dominant hand to write was sometime in October 2014; wish now I’d made note of the date. My left hand is going now too, almost too quickly for me to relearn how to write with it. G.B. Miller, I recommend getting used to the idea of voice software now, before it’s needed, because it needs to be trained, and it’s frustrating at first.

    My last good day walking was when we had that blizzard up here in SE Pennsylvania this year. It was already shaky, and I was a falling risk. But I started a new chemo that week, and two days later, I was standing… And then I was on the floor and couldn’t get myself up again. Have required help or wheelchair to get around since then. I’m very much hoping for recovery after chemotherapy ends, as well as the DVT that was also discovered before the second treatment. But they tell me it could take months and it will feel slooow. As for my hands, that’s from nerve damage caused by the tumors on my cervical spine and accompanying inflammation. We don’t know if that’s permanent either, but it sure hurts like hell every day.

    I promised myself I’d keep writing, even if it’s with one finger and the iPad’s predictive text. I use voice software when I have to. I am also something of a fiber artist, and promised myself I’d find ways to keep making things out of string as long as I could. It is highly frustrating at times, but also rewarding when I succeed.

    • Luna, I’m glad you’ve stayed the course in writing in spite of the considerable difficulties—your response here is so beautifully written. I use an iPhone rather than an iPad, but I use an app called Swift Key to “swipe” across the keyboard to type. It incorporates predictive text. Perhaps it’s available for the iPad, too. It’s quite freeing. All the best to you.

      • Thanks Coco. I’d had some trouble with Swift Key on my “Android” phone (it’s just a Tracfone, so that may be the problem, all by itself), but will give it a shot on the iPad to see how it goes.

        And I had a peek at your blog – I think we’d get along well, you and I. 😉

        • Aw, thanks for checking out my blog, Luna. We have even more in common—I used to be a weaver (and of course I was involved in all the other fiber art, too). I started on a 4-harness 50″ counterbalanced loom and moved on to a 16h 45″ jack. I kind of retired a while back, but never say never, ya’ know. Get in touch via my blog if you’d like! 🙂

  • I always wanted to learn to scuba dive. And I want to be better about keeping in touch with the people I care about. Thank you Steven for your inspiration. Thank you Chuck for sharing this post with us.

  • Hi Steven, thanks for your post that I saw shared by Sean Fannon last week. My mom is going through cancer treatment right now and conventional chemo hasn’t worked so now on to experimental treatments and trials, fingers crossed. I have been staying with her in the hospital and she perks up in part because I bring some games that we can play on the bedside table, her favorite right now is a co-op called “The Game” which we play on ultra easy mode (8 cards, open hands) and it is still a challenge to win. I am very thankful for the time I get to spend with her because eventually harder days will come.

    Also, my husband and I just signed up for an intro to drawing class today, should be good. This will be his first art class since probably elementary school, and my first since high school. Thanks again for getting this message out, it is very powerful.

  • Steven, thank you so much for your excellent article. You really are an inspiration. You probably get that a lot. I have recently, FINALLY, joined a local life drawing class. And I am drawing every day. And I am making notes about a book I want to write about everyday kindness. I have also shared this article with a few friends I think it might help. So thank you and good luck with your projects!

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