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?”
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.
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.
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.
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.
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!
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