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.
I want to go out and audition for musicals and plays and pursue the passion that I have for acting.
I want to begin streaming and making more and more friends on the internet, all while having the confidence to show my face and voice while doing it.
I want to become an amazing role model with my little brother and show him how to love people unconditionally and without any barriers.
I promise that I will begin starting my attempts to accomplish these three things. I will not let you down.