The Purpose of Pain

Kurt receiving acupuncture treatment for his many ailments

When it comes to physical pain, it’s purpose is hardly in question: It focuses us to where our immediate attention and action is required.

We accidentally rest our hand on a hot, stove top burner and, without our sense of pain, our hand, if it weren’t for our sense of smell, would become cooked well enough to serve up at the next meal.

We could laugh at this, but sadly and horrifically there are some who do not experience the sense of physical pain due to a rare condition known as congenital analgesia.

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My Chemo Brain Counter-Offensive

So… yeah. I’ve been having some chemo brain issues for quite a while now and I’m in search of interesting ways to build up my brain muscle to counter these “cognitive disorder” side-effects, as my neurologist so neatly calls them.

I’ve never been a board game – or any game for that matter – kind of guy, but I’ve read and I’ve heard anecdotal evidence that board games do help with one’s focus and clarity issues.

With this anecdotal evidence as my impetus, of course I went to Amazon, the event horizon of the internet, and searched around for what the best board game for my particular interests would be.

And I found this:

Cards Against Humanity
 
As you can see, it tags itself as “A party game for horrible people.” And while I don’t feel that I’m all that horrible, after reading a few of the many thousands of reviews, it does seem like a game that would appeal to my interests.

Does that make me so horrible?

That was rhetorical.

Anyway…

Which brings me to the point of this pointy post…

Research, with you being my source information.

Have you played the game? And if so, what do you think of it? Is it fun? Challenging? Stoopid? Do you feel you have a stronger brain because of your playing it?

And don’t worry, just because you played the game doesn’t mean I will judge you as a horrible person.

Necessarily…

I will, however, admire your courage for admitting it.


If you’re not familiar with the game, you can learn more about it here.

 
 

The Power of About

I may be mistaken, but it is my belief that we’ve all been to that dark, lonely place at least once or twice in our lives where we, and the lives we have led, seem…

Insignificant.

Less than.

Pointless.

power-of-about

It’s a scary place and one which I suspect, and hope, the majority of us visit only infrequently and fleetingly because our lives are fulfilling and rewarding enough to steer us clear from the depression that can lead us there.

However, I also suspect that there is a significant minority of us who visit this dark, lonely place more often and for longer periods than most since, according to NAMI, the National Alliance on Mental Illness, nearly 19% of the United States’ adult population experience some degree of mental illness throughout the year [1]. And, according to the National Institute of Mental Health, major depression is one of the most common mental disorders in the United States [2].

I, myself, became a frequent visitor of this dark, lonely place not long after I began taking high doses of the steroid prednisone to combat a deadly disease that was destroying my lungs, and one which I was given little chance of surviving.

It was a hard enough to mentally process that my life may soon be ended by an aggressively fatal disease — pretty tough for anyone to process, I would imagine — but couple that bummer news with a steroid that induces psychosis-like side-effects and, yeah… double bummer.

Consequently, it wasn’t long before I found myself spending nearly as much time in that dark, lonely place as I was out of it.

It’s hard to explain what I and my mind were going through whenever I visited there. I’m not sure there is a way to describe it wholly in just a few words. It is both a tangible and intangible feeling. A cold feeling sometimes. A heavy feeling other times. But it was almost always a feeling of pointlessness. A feeling of… Why bother?

I was dying. My body had failed me and I had failed my family. The only thing I felt I was good for now were my less than adequate disability checks. Were I gone, my life insurance payout would have been much more rewarding and helpful for those whom my absence would release from the burdens my illness had placed upon them.

Yeah… I was down there in that indelible darkness of depression pretty deep.

Fortunately for me I had a saving grace — several of them, in fact.

One, the primary one, was a support network of family and friends who loved me, cared for me, and prayed for me.

Another, was that I like to write.

The Writing Hand
The Writing Hand

I began blogging shortly after my leukemia diagnosis. Nothing too deep or introspective — though scared, I was completely confident I was going survive — just updates to keep my friends and family informed of my health and happenings during my treatment.

But months later after learning my lungs were slowly dying away as a side-effect result from my bone marrow transplant, and having to begin a hefty prednisone regiment in an effort to slow the dying process down, my positive perspective on things changed significantly.

Though the drug-induced and drastic mood swings made it difficult to focus, I began to blog more often and about more personal matters. And while I regard my blogging experience during this difficult time as a very beneficial, therapeutic activity — an activity I presume many others regard beneficial as well, for a simple Google search of the term “writing therapy” resulted in around 259,000,000 results — it wasn’t helping me to shake the persistent feeling of irrelevance; of feeling that I others would better off if I were dead.

Fortunately for me, since I was spending more time thinking deeply about my life for my blog, I eventually began tinkering with my blog’s “About” page.

And this tinkering proved to be yet one more saving grace; for it led me on a path to try to discover things about myself that others might find interesting enough to inspire them to read more of my writing.

And once I began thinking in more of a self-promotional, third-person kind of way about my life, I began realizing and rediscovering things about myself that I found to be very special and unique.

For the next week or so, I stopped blogging altogether and, like a gold digger after finding his first valuable nugget, I worked passionately on mining through my past to dig up and write down all the meaningful nuggets I could find.

And when I was finally satisfied that my life was properly represented on the page, I began to craft the long, meaningful list of me into a voice that, when others read it, would be heard distinctly as mine.

When I was finished*, my “About” page was more than just being about me… it was me.

And even now when reading this long and winding written documentary of me, I am filled with a sense of gratitude and purpose so powerful that, even if I were to once again visit that dark, lonely place, I could never do so feeling as if my life were pointless and without meaning.



1. https://www.nami.org/Learn-More/Mental-Health-By-the-Numbers
2. http://www.nimh.nih.gov/health/statistics/prevalence/major-depression-among-adults.shtml


*As I live and grow, so too does my “About” page. It will never be finished completely… until I am.

On why I choose to refer to those who help fund my film as “Donors”…

Admittedly, with these newfangled campaign funding sites such as Indiegogo and Kickstarter, where they have their “Backers” or “FUNders” or whatever else they call those who give money to a money-raising campaign, me referring to my supporters as “Donors” seems a bit anachronistic.

However, there is a very important reason as to why I do.

It is, perhaps, a term the most near and dear to my heart…

For, it wasn’t a “Backer” who was willing to sacrifice her time, effort, and self for someone she didn’t even know…

It wasn’t a “Backer” who had to take off work, find her way to the hospital, prepare herself mentally for an operation, sign all the forms, wear the silly patient outfit…

It wasn’t a “Backer” who had to endure the days of pain and discomfort caused by the operation…

And it wasn’t a “Backer” who blessed me with her bone marrow.

She was a Donor.

A Bone Marrow Donor.

And she saved my life.
 

Please consider becoming such a selfless and life-giving Donor as is mine.


 

BONE MARROW DONATION FAQS

 
 

HOW NOT TO DIE: In 13 Easy Steps

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…

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