I often wonder what my mom went through. The sheer terror that must have infected her soul as the doctors told her I wouldn’t live past age two. How it would feel to be told your son won’t survive to see his fifth Birthday. The dread she somehow endured when her only child left the hospital at the age of nine, only to be told that he would be back to die “comfortably” within a matter of months.
On September 15, 2017, despite the doctors warning me annually that my impending doom was just around the corner, I will turn 37 years old.
It’s the ironic part of living with a long-term terminal illness. The elephant in the room, as it were, is that you’re going to die soon, you just don’t know when it will happen. I don’t talk about the fact that I’m terminally ill with my mom or my friends. I’ll have the conversation once with a girlfriend that gets serious but then we also never speak of it again. For those people who are closest to me, the subject of my guaranteed expiration date is nearly taboo.
After all, we’re all going to die one day.
“Why do you think that makes you so damn special?” “Kara” asked, angry, fighting back the tears. “I’m going to die one day. You’re going to die one day. We are all going to die one day. You aren’t special. We all die.”
My girlfriend sobbed into my chest for a good hour. She was mad at the disease, not me. I had just explained that I am considered terminally ill, even if we don’t speak about it. She cried and yelled because the pain inside her soul was too much. Her desire was simply to face the same mortal reality that we all face, knowing that we COULD die any day, BUT the odds are that we will survive the day and live until we are old and gray. What she didn’t want to face was Death already knows my name. She didn’t want to hear that the Grim Reaper will come for me sooner rather than later.
Most of us don’t think about death every day. For a majority of people, it’s a final destination. It’s somewhere that we know we will eventually end up but the journey to get there is really, really long and too many things happen along the way for us to think about our ultimate ending all the time.
Sure, every once in a while when we get a Facebook notification that someone we used to know from high school passed away, we’ll think about death. As you get older, people that you know and love start encountering death more often. You start thinking about what that means and if you have all the preparations made, and maybe you contemplate what you’d like to do with your remaining days. But even then, life gets in the way, and suddenly you’re back to thinking about the deadline that’s looming and the kids that need lunch.
And perhaps that’s what sets people with terminal illnesses apart from the rest. We think about death. Maybe not every day in some dramatic flair–most of us with terminal illnesses are not planning out our funerals or picking out a casket–but it’s there.
Every time I get a cold I think about the way that someone with my disease dies. For most people with Spinal Muscular Atrophy (SMA) who are lucky enough to live as long as I have, the end comes in the form of pneumonia or infection. After years of fighting, the body becomes tired. Every time I get a cold I know that I’m rolling the dice. The cold could easily turn into the flu or bronchitis, and that can quickly turn into pneumonia or sepsis. Thanks to diminished lung capacity and a compromised immune system, from the moment I catch a cold, I could be dead within a matter of days.
Sounds morbid. Doesn’t it?
See, I can bear the pain of living this life because I know that when you cut through it all, my struggles are not all that more troublesome than the pain many others feel. My life is no better or worse than the person who loses their parents in an accident before they turn 10 or losing a child at any age or going through a divorce or a number of other fucked up things life has to offer.
I’ve done my fair share of crying, yelling at the gods–old and new, reasoning with death, and ignoring my mortality. Sadly, all the bargaining in the world won’t change reality for me, which is something that I accepted long ago.
I will die sooner than most and most likely from complications of a terrible disease that I didn’t ask for or do anything to deserve. I will die from a disease that I hate. But knowing that I’m going to die far earlier than I would have had I been born without this accursed disease doesn’t cause me the most pain; it’s watching the fear in the eyes of those who love me.
The most vicious part of this illness hasn’t been the genetic mutation itself but how some people choose to react to it. Losing family because they don’t want to remember me getting sicker, losing friends because they can’t imagine watching me die, losing potential love interests because they don’t want to fall in love with someone who will most likely die before they do.
The thing that has always hurt the most is when people choose to walk away because they can’t bear to witness the reality that I face.
For the average American, I’m now at the halfway point. For the average disabled American with SMA, I am far beyond the halfway point. But what the people who walk away don’t understand is that there’s so much more that I want to do in this life. So many things that I’m still trying to accomplish. And although I know I’m running out of time, I’m not done yet.
My then girlfriend wasn’t wrong, you know? We will all die. It’s the only non-negotiable thing in life.
Apologies if you bought that cryogenic pod. Spoiler alert: It won’t save you. Good luck getting a refund.
Like everyone else, birthdays remind me of my mortality even more than usual. I start thinking about those things that are still on my lists. Things I still want to accomplish.
It’s not death but time that is our greatest enemy. Time steals our very existence. Washing us away like sands on the beach. I don’t fear death because I already know that death is coming for me. There’s nothing I can do about it. What I fear is wasting the time that I still have.
Before the last of the sand falls through my hourglass, I want to know that I made the biggest difference I possibly could. I need to know that I didn’t squander any opportunities to make life better for someone else.
Which brings me to what I want from you.
As I mentioned, in a few days I will be turning 37. While neither of us knows if we’ll be around for my 38th birthday, I prefer to operate under the theory that I will not be around. Live for today and all of that T-shirt slogan business stuff.
So, I’m asking you to do two things for me for my birthday:
- Make a list of the top 10 things you still want to do in this life.
And I don’t mean goals such as “Get a kiss from Jessica Alba” or “Have sex with The Rock” — While both of those goals are admirable (and if you manage to do either, please tell me), I’m looking for specific things you can accomplish in the foreseeable future.
Ex. “Lose 5lbs” “Call Jen at least once a month” “Write 5000 words on my next novel.”
- Promise me you will do your best to begin tackling that list and then ASK TWO friends to write their list and promise you the same thing.
Share this post on Facebook. Twitter, Tumblr, or MySpace. Tag people on this post. Email them a link. Text a gif of a kitten with this post to a friend, or your enemy. I don’t care. How ever you choose to involve other people in your life, just ask them to do this one little favor for you and me.
You don’t have to make your list public. You don’t have to share your list with your spouse, your doctor, your psychologist, Aunt Gertrude, your dog or anyone else. What you want to do with your life and your list is your business. If you want to show it to me, I would be honored. But simply telling me in a comment or private message that you made your list is the best thing I could ever ask for after my 37th time around the sun.
Whether we know each other well or you just stumbled across this post, I want you to know that I care about you and that’s why making this list will make me happy. I believe that we should all care about each other and want the best for one another; it’s what makes us human. What makes facing death bearable, whether you have a terminal illness or not, is using the time you have to live and help others. Your gift to me is taking another step towards happiness for yourself.
Make your list. Grab happiness. Achieve everything you possibly can as soon as you can. Trust me when I say, time is running out.