writing is sorrow; having had written is sublime
Kurt What the fuck is going on in Russia?
Note: not much of a curser, but after reading this felt the strong desire to express my freedom of…expression, however cursed it may be; and also to express my solidarity with our overly suppressed and oppressed and newly vulgarless Russian brothers and sisters. Curse on…
Let him think that I am more than I am and I will be so
“Dumb”
I’m not like them
But I can pretend
The sun is gone
But I have a light
The day is done
But I’m having fun
I think I’m dumb
Or maybe just happy
Think I’m just happy [x3]
My heart is broke
But I have some glue
Help me inhale
And mend it with you
We’ll float around
And hang out on clouds
Then we’ll come down
And have a hangover
Have a hangover [x3]
Skin the sun
Fall asleep
Wish away
The soul is cheap
Lesson learned
Wish me luck
Soothe the burn
Wake me up
I’m not like them
But I can pretend
The sun is gone
But I have a light
My day is done
But I’m having fun
I think I’m dumb
Maybe just happy
Think I’m just happy [x3]
I think I’m dumb [x12]
(OR CARE FOR SOMEONE WHO IS)
I’d like to think that one or two of my three regular visitors (one of whom is me) come to this site to gain a deeper understanding of my creative writing by exploring my short stories, and poetry, and my insightful and sometimes witty flash fiction, and, most importantly, to buy my books.
Yeah, that’s what I’d like to think.
However, the reality is far from it.
The unfortunate truth is that, by far, most people who visit this site do so because they are seeking out information about my diseases, past and present.
The most common search terms that lead these seekers, or anyone for that matter, to my site are:
gvhd lungs
bone marrow biopsy
hickman line
graft versus host disease lungs
bone marrow needle (the article these terms lead to provide for some interesting pictures (viewer discretion advised))
prednisone and caffeine
prednisone and coffee
The most popular article on this site, which has nearly triple the amount of views of the second most popular article, is Lung GVHD By Any Other Name, where I discuss my frustration about finding out I have the incurable disease.
I say the truth is unfortunate not because I’m upset that people are not here to read my creative writings (although I confess my ego is a bit miffed), I say it is unfortunate because I know that if someone is here to learn about my experiences with leukemia and graft versus host disease, then he or she probably is in for some challenging times.
And that is unfortunate.
About a month after I was informed I had leukemia, I started blogging about it at a site I called Marrowish. And I blogged there regularly for two years. For two years I was consumed with wanting to know as much about my diseases (first leukemia and then GVHD…of the lungs…and eyes…and liver) as I could find, and I wanted to share this knowledge with as many people as possible.
But eventually I got sick of being sick…and of having my thoughts and actions being consumed by it.
So I stopped thinking about it (the best I could) and writing about it.
That was over a year-and-a-half ago…
But, seeing how “popular” all my sick-related articles are, perhaps it’s time I began providing updates on my health again from time to time.
I’m still certainly sick of being sick, but the good news is I haven’t really gotten much sicker since my last update (which was more like a major whine-fest than a health update).
In fact, I’ve been pretty stable and have even improved in some regards. This stability and improvement may be because I have been doing some pretty cool health-related things lately (I say “may” because during the past four years of my involvement with the medical community, one thing I’ve learned is that there are not many certitudes when it comes to healthcare).
I’ll try to expand on these in later articles, but here is what I have been up to health-wise the past year-and-a-half:
– April 2011, I began a five-year Bronchiolitis Obliterans Syndrome (BOS) study at the National Institute of Health. This study’s goal is to get FDA approval to use Montelukast (commercially known as Singulair and typically prescribed for asthma) as an authorized treatment for BOS. Since I began taking the drug I have been able to stop taking the steroid called prednisone—which is a major victory—and my lung condition has remained stable, as proven by regular pulmonary function testing.
– January 2012, I began twice weekly Extracorporeal Photopheresis (ECP) treatments at Johns Hopkins Dermatology Center. While there is no conclusive evidence as of yet, it is thought that this blood treatment may be effective in bringing calm to all those crazy outta control T-cells (affectionately called GVHD) that we post-transplant patients tend to get. I cannot say for sure that these treatments have helped; but I can most definitely say that they haven’t hurt — except for the fact that they take a big painful bite of time out of my life. Each treatment is about three-hours long; add to that the drive time coming and going plus the system prep time and it comes close to being a five-hour-per-treatment bite of time. Ouch. But, if you’re looking for options to treat your GVHD, you surely want to consider ECP as one of them.
– May 2012, I was fitted for Prose lenses at Johns Hopkins Wilmer Eye Institute. These scleral-type lenses used to be referred to as Boston Lenses, since Boston is where they were invented and was the only place where one could get them. Fortunately, Johns Hopkins now also provides the service. These vision-saving lenses have drastically changed and improved my quality of life.
– August 2012, I had cataract surgery in both eyes. Yeah, prednisone may have saved my life, but it definitely took a toll on my body. However, after I had the surgery and once my Prose lenses were readjusted for my new vision, my eyes are now bionic.
Those are the major things that I’ve been involved with that I feel could benefit others who are dealing with similar challenges as me. Of course, there are other things I have done and continue to do (like my countertop calisthenics, for instance) that may be of use, too, and of which I will write about at a later date.
Who knows, maybe someday I might even coral all this health stuff into an easy-to-read ebook, or something…
We’ll see.
Until then please remember that whatever it is you’re seeking, or regardless your reason for visiting, I hope you find at least a little bit of solace from the words that have accumulated here over the years.
Thanks for stopping by.
~~~~
PS… Please take the time to read my Disclaimer for this site.
Imagine how miserable life would be if we were constantly aware of our own mortality; if each day we awoke wondering if it would be our last; if each step we took worried us that it was bringing us one step closer to our end.
How stressful would that be?
If that were so, if we couldn’t help but be aware of our limited time on earth, would life even be worth living?
Hardly.
I mean, if that were the case, if we did lead lives in constant fear of death, then why even try?
To live a miserable life like that couldn’t possibly be healthy.
I mean, if we were constantly in fear of death, our life expectancy would surely suffer as a result, right?
A self-fulfilling prophecy.
The Universal Law of Attraction.
I mean, it only seems natural that if we think negative things then we attract negative things and if we attract negative things then negative things are bound to happen to us, right?
Right?
Well… maybe.
Maybe not.
A recent study suggests otherwise:
Lead author Frieder R.Lang said: ‘Our findings revealed that being overly optimistic in predicting a better future was associated with a greater risk of disability and death within the following decade.
‘Pessimism about the future may encourage people to live more carefully, taking health and safety precautions.’
If true, if pessimists do live longer lives than optimists, that should make even the most miserable among us a little happier, no?
Who knows?
Still, my gut tells me that negativity breeds negativity and, in the long run, that can’t be healthy.
Again, who knows?
But maybe if put within a different context, this live-longer-through-pessimism way of thinking might make a bit more sense.
For instance, today we celebrate Earth Day.
For one day out of the year, we are kind of forced to consider the life of our planet.
Kind of.
But what if we were constantly aware of it, and constantly at worry over it?
Our planet’s health.
And its mortality.
Would it matter?
Would our awareness and worry result in a healthier, longer-living planet?
How many of us worry about the future of the Earth?
I mean really worry.
How many of us stop to think and to fret that each time we start our car, each time we let the faucet run while brushing our teeth, each time we toss those spent batteries into the trash, each time we crank up the A/C, that we may in fact be facilitating the death of our planet?
I know I don’t.
I try…sometimes.
But it’s hard to worry about the planet.
It’s hard to be constantly conscientious of my environmental impact.
It really is inconvenient.
Which is why I’m not an environmentalist, I guess.
But maybe, if the study that says pessimists live longer than optimists is even a little bit true, then maybe, at least in regards to the life of our planet, we all should worry about our Earth just a little bit more and be a bit less optimistic about its future.
We should be concerned.
And a little scared.
Activism through Pessimism.
Sustainment through Worriment.
Have a Happy Earth Day.
But not too happy…
Does anyone else see the irony in the fact that the remains of Richard III — the English king remembered mostly — courtesy of the chronicler of kings, Shakespeare, of course — for his unrequited request for a means of transportation to help him escape his impending doom — were found buried beneath a parking lot?
The skeletal remains believed to be those of the King, who died in the Battle of Bosworth in 1485 but had been missing ever since, were uncovered last September in the remains of the Grey Friars Church, in Leicester, over which had been built a social services car park.
FILM | TELEVISION | DRAMA | ACTION
SONS OF ANARCHY
RATING: ★ ★ ★ ★
Today is Thanksgiving Day in the United States, and since I am American I must, like all Americans are doing across the nation and all over facebook, offer my thanks.
There are many things for which I am thankful: my family, my health, my freedom, football (football, the real kind, not soccer), you know, all the standard things a standard American is standardly thankful for.
But in addition to those standards, I am also thankful for the miracle of technology, for it allows me to experience right from my easy chair such wonderful, and cheap, mind melting joys like this and this and Netflix.
And I am especially thankful for Netflix, for it allows me to watch movies and television shows and documentaries and even some cartoons “on demand” (which is a very American way of putting it, no?).
And, of course I’m thankful for Hollywood, too, for without Hollywood, how else would I and the rest of the world know what it truly means to be an American?
And because of Hollywood, and Netflix, and technology, and my health (and all the free time it affords me), I just spent the past three or fours days (I’m not exactly sure how many it was because by the second day it all became a blur) watching a delightful, family show called Sons of Anarchy.
Well, it may not necessarily be a show you would want to watch as a family, but it is undeniably a show about family and the many challenges a typical — and non-typical — family faces.
Yeah, I know, as usual I’m late to the party. Four seasons late, to be exact. Season Five is already close to a wrap. Unfortunately, I will not be able to see it until sometime next year, probably right before Season Six kicks off; that is, if Netflix graciously makes it available for me to watch.
So much for “on demand” I guess.
Anyway, now, after that marathon of anarchy and mayhem I willingly subjected myself to, I can’t stop thinking, “What the hell just happened?”
You know, I’m not really sure. After four straight days of watching four straight seasons of head bangin’, rock n’ rollin’, face tattin’ motorcycle clubbin’, gun runnin’, drug slingin’, porn flickin’, bombs explodin’, race baitin’, back stabbin’ drama, I’m not sure of anything right now.
Except that the show is good.
Really good.
Once again, Hollywood did what it does best: exploiting, romanticizing, and glamorizing the most extreme of man’s deviant nature.
Hollywood did its job so well and the show is so good I gave it a Netflix rating of 4 out of 5 stars.
I briefly considered giving it 5 of 5, but it does have a few superficial flaws; however, over the entire well thought out and executed arc of the show, those flaws mostly become forgotten.
But for the curious, here are a few of the annoyances I noticed:
— A bizarre Irish Republican Army connection that put a bit of a drag on the pace and feel of the show for one of the seasons, season two, I think.
— A couple of cheezy reveals, especially at the end of season four, that pissed me off.
— Chuck Hunnam’s British accent. Mostly it goes unnoticed, but it is noticeable. It especially gets thick when he is talking with/screaming at Irish dudes.
But other than those minor flaws, the show is a masterpiece, as in Masterpiece Theatre.
Well, perhaps not but speaking of theatre — dammit, I’m American! — speaking of theater, Kurt Sutter, the show’s genius creator, is in no way shy about the show’s obvious draw off of Shakespeare’s Hamlet. For example, we have our conflicted prince (or Motor Cycle Club Vice President), we have our surrogate father king (or MC President and step-father of the VP), we have our ghost of the dead former king and father of the prince (or a manifesto written by the dead former MC President, which is found and read by the son/VP of said dead former MC President, and which conflicts said son/VP even more).
There are more parallels but I think you get the point.
Hey, if you’re gonna rip off someone’s storyline, who’s better to rip off than the Great Bard himself (who, by the way, is also accused of being a first class storyline ripper-offer in his own right).
Yeah indeed, it’s a raunchy, guns/drugs/sex-laden American version of Hamlet (heck, to make sure we slow on the uptake Americans didn’t miss the Hamlet connexion, Mr Sutter even titled the last two episodes of Season Four as “To Be – Act I” and “To Be – Act II” for us).
I haven’t watched such a deviantly fine contemporary adaptation of one of Shakespeare’s plays since My Own Private Idaho (yeah, I know — Keanu Reeves. But hey, his “style” of acting works in this flick and, besides, it also has River Phoenix (MHRIP)).
Yes sir (that would be a non-gender specific “sir”), Sons of Anarchy just about has it all; all, that is, except…anarchy.
Sure there’s all the killing and all the other subversion of societal “norms” one could imagine, but all that is done within the context of maintaining a structured and orderly, albeit somewhat illicit, motorcycle club. And clubs, especially those that are guided via vote and majority rule like the SAMCRO is (if you aren’t an SOA fan, you’re probably just as confused about the meaning of SAMCRO as I initially was when I first started watching the show…if you want to know what it means, ask Mr Google like I had to), represent anything but anarchistic ideals.
Clubs, especially those of the motorcycle variety, do not represent anarchy, they represent democracy and freedom.
And democracy and freedom, damn it, represent America!
Yes, the Sons of Anarchy, with its British leading man, and its British-owned storyline, and its Irish Republican Army and Mexican Drug Cartela dependencies and connexions–er, connections, is about as American as any television series could ever strive to be…
Or not to be.
Uhm, yeah…
Oh well, I tried.
While my dubious and corny conclusion may be in question, there is no question that, with Sons of Anarchy, Hollywood has served up yet another feast of a show for us turkeys to feed upon in our unending quest to fill our insatiable viewing appetites.
And for that, I also am thankful.
~~~~
You may be happy or sad over the reelection of Barack Obama.
I, for one, am happy.
You may be happy or sad over the reelection of the Congressional Incumbents.
I, for one, am sad.
And, you may be happy or sad over the historic legalization of gay marriage in Maryland and other states and the legalization of the limited recreational use of marijuana in Colorado and Washington.
I, for one, am beyond happy; in fact, I am completely and blissfully ecstatic.
Now, since I am happily married and have been so for over two score, and since my lung disease prevents me from inhaling any kind of smoke and my high liver counts discourage me from introducing THC into my system by any other means, I do not foresee me benefiting physically in the least because of the legalization of gay marriage and the decriminalization of marijuana use.
But I do benefit from it.
All Americans benefit from it because it represents a new mind set in our country.
A new hope.
Millions of Americans voted in this election to begin the end of legislating morality.
Yes, there will be legal challenges and set backs to these recent advancements toward the protection of our basic human right to live a life as we choose to live it.
Yes, we still have many states to go and many votes to cast before all Americans’s have the right to be human as each sees fit.
But we have just made a significant advancement, an advancement which sets the momentum toward even further advancement, and which minimizes the chance for significant setback.
And I, for one, am very happy about that.
