HOW NOT TO DIE: In 13 Easy Steps

by

On this day five years ago, I received the news that a recent lung biopsy showed that my lungs were inflicted with a severe form of graft versus host disease (GVHD) called bronchiolitis obliterans syndrome (BOS). BOS, I came to find out, was a known but uncommon side-effect resulting from a bone marrow transplant (for leukemia) that I had had earlier in the year. And by severe I was told it meant the BOS was incurable, non-reversible, and, in most cases, aggressively fatal. I was also told — because I had asked and insisted on an answer — that, according to a National Institutes of Health (NIH) study of the time, BOS had only a 13%, five-year survival rate. In other words, there was an 87% chance that within five years I would be dead.

Well, it’s been five years and here I am – a newly minted Thirteen Percenter.

Can a brother get a “Hell yeah?”

Hell yeah!

Anyway… at my most recent appointment with my oncologist, in addition to his standard declaration whenever he sees me of, “So, I see you’re still alive,” he also declared that my present condition may just be a miracle of sorts because it appears that my incurable BOS may have actually been cured… somehow.

I don’t think I would be overstating if I said that, because of all my goings on these past five years – goings on such as leukemia, GVHD (and not just of the lungs, but also of the eyes, liver, and intestines), prednisone side-effects, cytomegalovirus (CMV), and heart failure to name a few – I think I’ve learned a thing or two about life in general and living it in particular.

Now, if you search around this site, I’m pretty sure you will find that much of my writing, mostly encapsulated in my haiku, reflects a lot of the insights and learning I’ve garnered from these goings on. However, just because I like you all so much and don’t want you to have try to sift through this site for days on end in an effort to discover these insights and learning, and because short, pithy lists are all the rage these days, I will identify for you the top thirteen things I learned about how to not only not die, but mostly about how to best live your life filled with happiness and meaning, regardless whether death is looking you directly in the face or not.

Cool?

Okay, so here we go…

1. Love someone even if no one loves you.
I was and am very fortunate for I love and I am loved. Love, I have learned, is the most important substance of life, and I was happy to find that when it came time for me to face the consequences and challenges that my diseases posed to me, I had many people around me whom I love and who in turn love me to help me meet these challenges. First and foremost among them is my lovely and loving wife. As I say in my bio, without her I am certain I would not have made it. However, I am just as certain that without her I wouldn’t have wanted to have made it nearly as much, if at all. If you don’t have someone to love, or if you in your present state are simply not a loving person, you have to find some way to change this. Support and religious groups and volunteers of other sorts can bring a form of love into your life if you are all alone in your efforts at living, but only you can change your own ability to love others. You must learn to truly love in order to truly reap the healing benefits that the love of others can bring.

2. Be someone even if you feel you are no one worth being.
Disease has the power to change not just how we feel but also how we look and, if we let it, how we behave. It can be painful and depressing and enervating and emasculating to the point where it has us thinking, what is the point? All this power over us that disease may have is sadly true. But, no matter how much disease can negatively impact our lives, we cannot let it take away the essence of who we are… of who we choose to be. No matter the prison we find ourselves in, as long as we have control over our own faculties, we have the ability to transcend the boundaries that may physically hold us back and find freedom in our mind and how we choose to think of ourselves.

3. Achieve something daily.
Even if it’s nothing more than making a bed (which at various points throughout my journey was impossible) or, if that’s too much, pulling up your socks by yourself (which at various points throughout my journey was near impossible), if it’s a challenge and you are able to do it, do it daily and congratulate yourself when you’ve accomplished it. And if you cannot do anything physical, challenge yourself mentally by reading as many pages of a book as possible or memorizing a new poem. The point is, find something challenging for you to do and do it daily.

4. Exercise daily.
Even if it’s nothing more than raising your feet off the floor as many times as you can, do it daily and congratulate yourself when you’re done. And, again, if you cannot do anything physical, exercise yourself the best you can mentally each day.

5. Be happy even when you’re not.
Only you can decide your emotion, not any other person in this world or any situation that this world may throw at you. Our existence is very existential. Choose your emotions wisely and always err on the side of happiness.

6. Be kind even when you’re not.
It is much easier to be a jerk than not, especially when you are sick. Still, just as in #5, the choice to be unkind or not when faced with an unkind situation or person is totally yours. Choose kindness.

7. Mind your I ams.
If God has taken the name I Am That I Am, there must be some pretty big consequences whenever we mere mortals use his name during the course of our everyday living. Think about it… whenever we use his name to declare how we feel, as in “I am… sick” or “I am… happy,” the universe must surely take notice and find a way to make it so. I mean, when you say “I am…” you’re essentially saying “God is…” If you ask me, your best bet is to keep your I ams as positive as possible.

8. Embrace modernity.
There are some of us out there who live alternative life styles and who choose to shun modern medicine for a more “holistic” approach to healing, whatever that may be. I’m not saying to compromise your values, but what I am saying is that when it comes to whether you may live or die, don’t just go down the single path of relying solely on alternate healing techniques and putting your trust into our good – but also rather precarious and sometimes a bit spiteful – Mother Earth. You can still go down that hippie path, but as you do, also go down a parallel less-than-hippie path that incorporates modern medicine and technology. I have two words to sum this all up in a sad, unfortunate, but easy to remember way: Steve Jobs.

9. Ask questions.
In other words, trust but verify. Sometimes this can be harder than it sounds, seeing that we, as a society, tend to hold doctors in such high regard, and deservedly so. But no matter how awesome your doctor is, she or he is still, just like you and me, only human. Not everything they say is gospel no matter how much some of them may act as if it is. Now, your default response probably should be to listen to what your doctor has to say, but the bottom line is, doctors are nothing more than highly trained, highly paid medical consultants and service contractors. It is their job to provide you with their best advice and/or service that they can. It is your job to decide whether to accept their advice and/or service or not. You are both their customer and their boss – meaning they work for you – and it is up to you to hold them accountable.

10. Find your guru.
We all need someone we can look up to, someone who can teach us new things, someone who can motivate us to achieve things that we just may not be able to achieve on our own. It may be a guru, or a mentor, or just someone you connect with who can motivate you to live your life better than you were living it without them. It would be awesome if this guru or mentor could be someone we could actually meet in person on a regular basis, but it doesn’t have to be. You can find your guru or mentor in books or on TV or the internet. Dr. Wayne Dyer, may he rest in peace, was and still is my chosen guru. He has an ability so say things, things that I may have heard said many times before by many different people, in a way I can connect with and become motivated to apply to my life. There are other gurus out there I also like to listen to from time to time – Anthony Robbins, Eckhart Tolle, Thích Nhất Hạnh, Oprah, and others – but the one guru and personal pope who I choose to call my own is Dr. Dyer. Do yourself a favor and find your guru.

11. Meditate.
Meditating can mean many different things to many different people, but to me it is finding a way to slow my mind down in an effort to eliminate thought so that I am able to allow myself to fully accept and experience the now of each moment. If you’re not sure what any of that means, see #10.

12. Pray.
If you are a religious person, this goes without saying. Ask and you shall receive. And the more people asking on your behalf the better. Fortunately for me, I had so many loved ones and friends putting in the good word to the I Am That I Am on my behalf that I fear that others out there may have gotten a busy signal. Prayer works and I am living proof of that. But even if you are non-religious and don’t believe in a higher being named I Am That I Am, you can still be putting positive vibes out there. Think of it this way, we are nothing if not electric beings, especially our thoughts. Our brains are mushy lumps of power generating matter. I don’t know about you, but I would rather have positively charged happy thoughts transmitting out throughout the endless infinite universe(s) rather than negatively charged dismal ones. With Pascal’s Wager in mind, my best advice is, assume that both prayer and the Law of Attraction really work and act accordingly.

13. Appreciate that life is relative to the person living it.
Remember, that your best day just may be someone else’s worst day and your worst day just may be someone else’s best day. No matter how sick or crappy you feel, there is someone out there who is much more sick and feeling much more crappy than you. So, you might as well stop your whining right now. Instead, use your relative good fortune to seek out and try and uplift those less fortunate than you. The simple act of a smile from someone in your current condition, whatever it may be, may be just what is needed to help someone else find the strength to meet the consequences and challenges of their current condition, whatever it may be.

So, I guess the question is, if you find yourself in a similar situation where death is lurking right around the corner of your life and there is an 87% chance you will be dead within the next five years, will following these thirteen easy steps keep you from not dying like they did me? My answer is, who knows (see disclaimer). I’m no doctor, lawyer, or Native American Chief. I really have no clue. Maybe they will, maybe they won’t. But I am pretty sure that by following these steps, steps you yourself are probably already well aware of and, for some reason or another, maybe just forgot to follow through on, you will live the remaining life that you do still have yet to live, however long that may be, with a bit more happiness and a bit more meaning than you would have lived it had you not followed them.

Maybe.

Anyway… regardless whether you follow them or not, remember that it is inevitable that at some point in your life you will come face to face with death. And when you do, I recommend, in addition to following these thirteen easy steps, you throw up a middle finger and tell that annoying little buzzkill to Bring it on Bi-atch!

Cancer isn't pink
Kurt in the process of once again kicking Death’s ass

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135 thoughts on “HOW NOT TO DIE: In 13 Easy Steps”

  1. My mother had Leukemia with the highest mortality rate within a year. She went through it all, then was told to do a bone marrow transplant. Being she was clear she was advised to transplant her own bone marrow months before she had it taken out before the transplant to keep any bad reactions. So I know what you went through. She managed to live 15 years and is the third highest on the list of survivors with the deadliest Leukemia. It really was scary but she squandered the gift she was given, sadly.

    Reply

  4. Happy to give you a big HELL, YEAH! And wow, what a great list of things to remember to do — as you say, it may not help us live longer, but any one of those is likely to make you live better in whatever time you have left. Congrats on still being alive and kicking death’s ass.

    Reply

      • I actually had the opposite experience with the odds with my (much less serious) thyroid cancer diagnosis. Through asking a lot of questions and reading all the published medical studies on my treatment options and then conducting a statistical meta-analysis of them (because that’s how I roll), I determined that I had about an 88% chance of doing fine if I chose a less aggressive treatment that would allow me better life quality (i.e., keep the other half of my thyroid and not depend on pills the rest of my life). My doctors recommended the most aggressive treatment possible, because that’s the only speed they understand, but they went along with my decision. Well, turns out I was in the 12% failure category and not the 88% success category. Someone has to be, and this time it was me. So two years later I was back getting the more aggressive treatment. My endocrinologist said this proved that I was “wrong,” but that just shows that he doesn’t understand statistics or predictions. Anyway, I’m fine now, total remission, down to checks only every two years. Can’t complain about that!

        Reply

  5. Hell yeah! And now I don’t feel so bad about my lung biopsy last year. I heard that people have died from what I had/have, but I’m one of the lucky ones. So glad you’re still here with us!

    Reply

  7. Reblogged this on The Recovering Know It All and commented:
    This is an Amazing Story of Living in the Face of Death. Aren’t we all? But this brother is daily Snatching Victory from the Jaws of ‘certain’ Defeat. Life is precious and sweet. Life to the fullest every moment you have. -KIA

    Reply

  8. The inspirational voices that are heard from those people, like you, that look death in the eye and tell it to take a hike (okay sometimes the verbs are a bit stronger) deserve attention. Your attitude, and consistent strength is worth so much to people who hear the results and accept that they will never be the “thirteen percent” that you have claimed as yours. Kudos to you for your ability to love, laugh, and live in the face of choices between faith and giving in.

    I saw that you did not mind another sharing your post on FB, so I have done the same. This is inspirational to me, and I imagine it will be to many more.

    Reply

  10. My mother just got the news that she’ll likely make the 8% 5-year-survival rate for her particular brand of cancer… good to know that there are others out there beating the odds right alongside her! Great to hear the news 🙂

    Reply

  13. So glad to hear your inspiring story Kurt and words of wisdom that we can all live by. Blessings my friend for sharing it with others and giving hope. Take care and be well!

    Reply

  18. Awesome piece — this is very inspiring! I’m definitely making a point to express gratitude and to appreciate everything that life has to offer.

    And yes, at the very least, you definitely deserve a “Hell, yeah!” 🙂

    Reply

  25. Hell Yeah Kurt. Continue loving each day and each person in your life. I’ll look at your list to remind me along the way and try to add to it. Love your positive message but also really like the picture. Here’s to many more days and finding the best in each.

    Reply

  29. “Hell yeah!” and “Hell yeah”
    Amen and Amen also! God is GOOD all the time.

    I like the picture of the invincible Kurt in the baseball cap better. You put a lot of thought into your How Not T o Die In 13 Easy Steps. It should be a must read for everyone. I have been a spinal cord injury survivor for 54 years because I don’t play by the doctors rule book. I have pretty much done what I felt like doing, and control pain without drugs so far. If a person is busy they forget about the pain, and stay half way in shape, that sounds kind of flip but has worked well for me.

    Stephanie Butland said, “Bah To Cancer.” I like your reply better, more meaningful and straightforward.

    Best wishes, My hope is, we will both be blogging till the cows come home.

    PS
    The National Institutes of Health (NIH) told me in 1985, I have a rare spinal cord disorder, Syringomyelia, caused by my spinal fracture in 1964. Still keep on keepin on tho???????????????

    Reply

  42. Hi Kurt How we doing? I love your posts man i really do. I have nominated you for a LIebster Award, i know you may not qualify cause your like way up there lol, but hey change of the times. I hope you will accept dude.
    Be Amazing XxX

    Reply
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  50. I just want to say Thank You for giving me a ray of hope. I was diagnosed with BOS 2 years ago after a bone marrow transplant and was told the same odds of 5 year survival rate. I also have gvhd of the skin, eyes, and mucous membranes and have had a couple near death experiences due to the BOS. I was just recently turned down for a lung transplant because they said that I was not well enough to receive it as of now. I struggle everyday to do the simplest of things. Just as you were saying, it is a struggle to even put on a pair of socks. After reading this I truly feel that there may still be a chance that I can be a 13%er too!! I was wondering if you would be willing to share with me some of the treatments that you tried? I am currently on predinsone, many antibiotics, an inhaler and getting ready to get back on cellcept. Again, thank you for your inspiring words!

    Reply

    • Hello, nickiek16. So sorry to hear about your condition. I was on prednisone for the first year but knew right from the start that I had to get off it as soon as I could. I began taking montelukast (singulair) along with azythromicin and Bactrim for the lungs and about six months after starting that regiment I was able to be weaned off the prednisone. I did go through ECP treatments two times a week for nearly two years but I stopped doing that almost two years ago now. I continue to take the S, A, & B along with gleevac (to prevent the leukemia from returning) and Valtrex (for shingles prevention). I written a lot about my health if you’re interested in searching this site but if you want any further info, please feel free to email me through the contact page. Best of luck to you, friend. Stay positive and try to exercise the best you can and as often as you can. ~ Kurt

      Reply

  51. Your words here are so important for those who have not had to endure or suffer grave illnesses themselves, bestowing upon us wisdom that can only awaken the soul and mind. Thank you. It’s a good wake up, like being splashed with fresh water.

    Reply

  52. This has to be my favorite blog article I have found on WordPress so far!!!! Thank you for sharing your hard-won wisdom. It means a lot to read it. Facing death, and reflecting on life not with romanticism, but with honesty and hope…that takes courage. Honesty is so important; it is easy to romanticize life and healing. “Embracing Modernity” is a form of being honest about healing–some “hippie stuff” works, and it’s on point much of the time, but there have been times in my life when my world has been crashing down and I just needed some modern medicine already. Balance. Thank you!

    Reply

  53. Part of the point of it all is to share our experiences and suffering with others so that they may avoid unnecessary pain and suffering—if possible— themselves. That, to me, is the essence of what sharing is. So, thank you for your generosity.

    Reply

  54. Hi Kurt,

    I just wanted to tell you that having just gotten out of the state hospital yesterday i found that you had followed my blog a month ago, while i was hospitalized. This incredible post of yours is the first of anyone’s i have read since my discharge and it was a needed shot in the arm ( though given the state hospital’s propensity to force medications and use mechanical restraints and locked door seclusion, that may not be the best metaphor under the circumstances). Thank you for your wisdom and having the kindness to follow Wagblog, which must seem seared with bitterness and rage by comparison.

    If i can figure out how to reblog this, i will do so immediately on Wagblog, as my first effort at positive thinking. I cannot thank you enough.

    MTFFGBWYA – or May The Forces For Good Be With You Always. (My subsitute for God Bless you.)

    Pamela Spiro Wagner

    Reply

    • Hi Pamela. Thanks so much for sharing this and for emphasizing more clearly how relative life is. Your strength and determination is evident and exemplary. I too have many bitter-written posts littered throughout this blog; though now I am able to regard them less as bitter and more as therapeutic. I really appreciate your kind, encouraging comments. Thank you – Stay well and stay strong.

      Reply

  56. I like your style! Thank you so much for taking the time to look at my blog. Given that you have “kicked Death’s ass” more than once, I expect your time is precious. I appreciate it very much that you spent some of it on me. :o)

    Reply

  58. This is an amazing piece which I am going to ‘reblog’ on my site as it is too important and well written not to share! Although I have yet to truly face death I recently was reminded of my own mortality thanks to a fall that seriously fractured my left radius and ulna. Ultimately I required orthopedic surgery and now have a plate and six bone screws as reminders that I’m no longer ’18 and invincible’! The wisdom in this piece is deep and well crafted; a wonderful blend of experience, philosophy and perspective. I so much concur with much of what was expressed and I keep a three CD set of Dr. Wayne Dyer’s “There’s A Spiritual Solution To Every Problem” in my car for long drives. It certainly ‘feels’ as though you have discovered a simple yet immeasurably powerful secret which I only truly came to embrace a few years back: ‘Attitude is Everything!’. I’d often read about this but until I really came to live it I found it to just be some interesting words. Now it forms the foundation of my existence. Thanks so much for creating this masterpiece!!

    Reply

  59. Reblogged this on Rualli and commented:
    This is a truly memorable piece which contains deep wisdom and amazing perspective. I humbly reblog it because it is so very meaningful and offers a well crafted synopsis of a plan to enhance one’s life that is relatively simple and easy to understand.

    Reply

  60. Firstly I’d like to add to the collection oh Hell Yeah’s and then to say thank you for the list – wise words and good advice that I will try to add to my own list for moving forward in life. Happy and healthy 2016 to you.

    Reply

    • Awesome. Thanks so much for your “Hell Yeah,” Cathy. It really means a lot to me, as do your kind, encouraging feedback and well wishes. I hope for you the best year ever in 2016.

      Reply

      • Your piece is really lighting up my site, Kurt! I’ve shared its existence with a number of folks who do not follow blogs and to a person they were blown away by your perspective, your experience and your wisdom. Just a truly wonderful piece that I suspect will continue to positively impact people’s lives for a long time coming. Thanks again for creating such an inspirational and useful piece!

        Reply

  63. Hell yeah! Your beautiful words of wisdom are my inspiration today. Life is truly a gift every day but it’s incredibly easy to let people or other factors get you down – but not today. Thank you 🙂

    Reply

  64. Hell yeah! I am totally with you. After a stage 4 colon cancer diagnosis last September, I am taking on the WAR with cancer, and I am going to kick butt! Glad there are others out there who picked cancer’s butt!!!! Love the book, will be following your journey too!

    Reply

      • Oops, kicked cancer’s butt. Just another day in my Lucy Riccardo life! So I am starting a new art project today, have been doing smaller projects that I can finish in a few days…first the pastel bird drawings, then the dreamcatchers, now I am starting to draw small drawings for Christmas cards next year, so everyone on my list will get an original instead of a print. Stay tuned, will post on blog.

        Reply

  65. I’ll give you a “Hell Yeah”. My husband also had a sever form of cancer that was not supposed to go away and it has been 6 years without cancer. We attribute the animals and plants for healing him and have spent those years using our gifts and talent to help homeless dogs. Thanks for following The Journey of Phillip, the Forgotten, to Phillip the Fabulous, on wackedoutonweeds.com. Be Well, Ellen

    Reply
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  69. Great insight and wonderful expressions Kurt Brindley. A good reference for people to follow when sick or depressed. A doctor is just a trained person and a knowledgeable doctor knows his/her limitations. Nature is great. As you said we are all connected in this Universe. Positive vibes always result in better life and happiness. When we do not know facts behind some occurrence it is miracle. Unraveled mystery is science. I experienced the benefit of prayers. When my ability to help my clients is limited I always ask them to pray. Some feel it funny. But that is my last resort for a better life.

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