Turning 37 as a Terminally Ill Patient

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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:

  1. 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.”

  1. 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.

26 Comments

  1. Emotional, yet great read.

    I’ve only recently “discovered” you on Twitter, and I’m continually amazed at your positivity, which is infectious. I admire your outlook on life and I hope you keep proving them wrong.

  2. I am a very recent friend. I have tough days that are brightened by reading your posts. Recently began working on some of my list. I have never been able to drive because of a genetic condition. Today I assembled my new ebike. It may not be a car, but it’s as close as I can get. I will think of you as I ride. It took me years to get around to doing this. I am working on changing careers. Another thing on my list. Hang in there. I respect your courage and will honor your wish by fulfilling more of my own.
    Happy birthday xx.

    • Thank you for the birthday wishes. I’m glad you’re getting out there. Fulfilling wishes is never an easy thing to do. Take pride in the ones you do accomplish. Keep striving for the ones that need accomplished still.

  3. You are a very special man. I am so touched by your story thank you so much for sharing. I will start my list tonight and share with you when I have completed your birthday wish. The best of Birthdays to you I wish you more time
    to bring your wisdom to more of us.

  4. On a family trip abroad a few years ago my mother became seriously ill and probably should’ve died. One day she was fine and the next we had no idea whether she’d be alive when we went back to the hospital to visit. It was a reminder that life is fragile and we are promised nothing. It’s a good philosophy to live by. Thanks for sharing this!

    • Living for today has almost become a cliché. It seems to take more and more to remind people that it’s not just the saying; we really do need to live now because you don’t know what tomorrow will bring.

  5. Can someone “Have sex with The Rock” my number 11? Not me… #AskingForAFriend
    I’ll make my list, it’s a wonderful idea. Thank you 🙂

  6. Hey thanks for sharing. I’m really glad that you’re still kicking! I can’t imagine the bullshit that you’ve been through and the constant worry that you’ve got to live with. Even with relatively minor health scares that I’ve had, I know how bad it can throw you for a loop. I hope you continue to defy the odds man. Peace.

  7. Thank you for this most beautiful, inspirational piece. A very Happy Birthday and many more! You remind me so much of my beloved sister, Ellen, who, as you are, was simply extraordinary. I will make my list and follow your prescription!

  8. Inspiring YES! Consider it done Steven! Wishing YOU Happiness as You have given me Words to live by now. I have a chronic illness which I have lived for almost 44 years now defying the odds. I have often spoken of a list but only partially completed it. For YOU I will complete my list and pass these words of strength and wisdom along! On another note, my Dear Husband had passed suddenly the last year, he was my Best Friend and helped me to live a happy life after a 23 year marriage failed because of my 1st husbands I believe could not handle my complications from my illness causing partial blindness which ended my career prematurely. When he passed I wondered how I could go on without him. But he like you was a very upbeat realistic thinker who I know how what he would be saying to me every day, You can do this Linda I know you can. So for You and for him, I will make you both proud of me. Thank You and Happy Birthday Steven!

  9. You’re an incredible person, Steve. I’m always inspired by your words, wisdom, and your ability to stay positive. Your posts have often made me smile or chuckle during times that I didn’t know I needed it. Thank you for being you and opening your life up to us.

  10. My mother-in-law (born—1930) was diagnosed with a then inoperable heart defect. Her parents were told she would not reach her 5th birthday. She was the 5th of 5 children and the whole family helped her in living the best she could, fighting that spectre of death daily. After reaching her 10th birthday, she continued to enjoy her life with lots of rest periods at home and regular activities at church and school. (Surgery was developed around 1960 to correct this still-present defect, but her body had compensated and shifted basic functions for so long that surgeons wouldn’t consider it.) When she reached adulthood, she was advised never to have children—she had 6. Kathleen lived her life like every day could be her last. She never let anything go till tomorrow what she could finish immediately, and NEVER let the day end with anger or hurt feelings. She died at age 55, cheating death for 50 years, living to see 4 grandchildren, and never was there a life better lived. For those who live with the looming shadow of death, thank you for sharing your story, your anger, fear, tears, and wishes, for you know what most of us deny—Tomorrow is promised to no one.

  11. LISTS. Yes. Took my grown sons to Japan last year because I didn’t want “Aw damn— I’ve never been to Japan” to be my dying thought.

  12. I’ve made a list. Thank you for being so inspiring.
    And an early Happy Birthday!

  13. Thanks Steve, I started making my list a long time ago. The funny thing is when you are being told you might die, you are so busy trying to live, you don’t think about dying, but then when you get a grace period to live, you start thinking about dying again. The story of my life. I think it is so with all of us, it becomes a coping reflex. By the way I’ve tried to do all my dying in Japan for the past forty years. It was the very first thing on my bucket list, “to go to Japan and live there”. I achieved it and so much more. See you somewhere next year.

  14. I understand everything you said, because I’m there. My heart failed about five years ago. Spent several months in the hospital. Doctors tell me to take it *real* easy now. Don’t work, don’t push yourself, avoid stress. I take a cocktail of medications that made my grandparent’s meds look like aspirin. I need a heart transplant, but the odds are stacked against me. Every year that I survive is a good one. And so on.

    I know what death feels like. It’s cold, and lonely. But once you’ve been there. you *know* waht death is. You stop being afraid. Fear of death vanishes. You become accustomed to it being just around the corner (maybe not this corner, or the next, but some corner, and soon). In fact, a lot of the things you were afraid of? They stop bothering you, too.

    I’m told I’m stubborn and tenacious. I love life. It’s tough sometimes, but I hang on to it just the same. I’m an atheist, and I know that this is the only life I have, and some I’m going to hang on to it as long as I can.

    I suppose I wrote this to let you know that there are people like me that walk a similar road, and understand. Keep fighting and keep strong.

  15. Making my list now. A little sobering that it’s difficult to write 10 things, knowing I want them to be 10 things I’m brave/willing enough to stick to. But obviously inspired by your words. Thank you to the moon and back for taking the time to share. xx

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