writing is sorrow; having had written is sublime
Hey! How about that?!
Our good friends over at COPING With Cancer magazine featured an excerpt from my little book HOW NOT TO DIE: In 13 Easy Steps in their recent edition.
Pretty cool, no?
Yes, indeed.
You can learn more about the magazine and all the good folks there doing God’s work here.
You can learn more about my book here.
You can check out the post the book was inspired by here.
And you can learn how I feel about pink as the color of cancer here.
#cancerisjustastateofmind
#peace
So, I was thinking (yes, I understand the risks)…
But, I was thinking, just imagine if each of the 25,109 and growing followers of this humble site were to donate just $1.00 to help me fund my film LEAVE…
Just imagine how much that would be!
Keep in mind that I am a product of the United States public school system, and that, by design, my higher level degrees have absolutely nothing to do with math, so my calculations may be a bit suspect…
But I believe that if every one of the 25,109 followers were to donate $1.00 to help me fund my film, that would come to the heavenly financial figure of… [finger cipher]…
$25,109.00!
Now that there would be a whole lotta of cheeze and it would help me in a whole lotta ways in realizing my cinematic dream called LEAVE.
Now, I’m a practical man (not!), and I know all 25,109 of you donating $1.00 each to support my dream is an impossible expectation…
But, let’s consider what you get here for free 24-hours a day, 7-days a week, 365-days a year non-stop and in perpetuity for as long as our pretty yet petulant planet revolves around the sun that may help motivate you towards donating that $1.00…
You get to publish your work to the RELATING TO HUMANS feature…
You get the IABS&R…
You get occasional “PRO-TIPS”…
You get LITERARY ZEN…
You get ARTWORK?…
You get HUMOR…
You get HEALTH advice…
You get MOTIVATIONAL ADVICE…
And you get so much more.
But, even with all this free stuff created just for you forever floating around here, I understand that my hope of everyone donating even just $1.00 is an impossible expectation.
But then again…
AND SO IS THE TRIBE WINNING THE WORLD SERIES!
BUT IT’S THE YEAR OF “BELIEVELAND” BABY!
THIS YEAR, ANYTHING IS POSSIBLE!
WHICH MEANS, WITH YOUR HELP
LEAVE IS POSSIBLE!
…
Uhm…
Too much, right?
Yeah.
Sorry ’bout that…
Anyway…
Please donate what you can, if you can, my friends >> BELIEVE IN LEAVE.
Thank you.
So… based on your very kind, honest, and funny feedback to my last post, it appears that Cards Against Humanity, while being fun and completely aligned with my temperament, may not be the game best suited for building up my brain muscle.
I know there are several companies out there now that say they have games and apps that will improve one’s cognitive function and may hold diseases like Alzheimer’s at bay. However, those companies were pretty much debunked by a group of neuroscientists with this.
The good news is that there may actually be one game out there that does improve brain function.
From the LA Times:
If you’re intent on keeping dementia at bay, new research suggests you’ll need more than crossword puzzles, aerobic exercise and an active social life. In a study released Sunday, researchers found that older adults who did exercises to shore up the speed at which they processed visual information could cut by nearly half their likelihood of cognitive decline or dementia over a 10-year period…
The data that the LA Times is reporting from was presented at the Alzheimer’s Assn.’s International Conference.
The study the data was drawn from was conducted by the National Institutes of Health’s National Institute on Aging.
The game used in the study found to be effective is called Double Decision.
Of course you have to become a paid subscriber to play the game. If you pay monthly, it costs $14.00. If you pay annually, it costs $8.00.
A monthly membership to Golds Gym costs around $25.00 a month.
I am not yet sure if I am going to subscribe to play the game but I am sure, based upon your feedback and my research, that muscles, brains or otherwise, are expensive to build and maintain.
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:
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.
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.
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.
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.
Inspired by the reception the HOW NOT TO DIE article received, I have now made it available as an ebook edition which is now available, for the time being, exclusively at Amazon.
While staying true to form of the original article, I have updated the content for clarity and completeness. Additionally, I have included with the edition, relevant poetry from my newly released book of poetry Short Verses & Other Curses: Haiku, Senryū, Tanka & Other Poetic, Artistic, & Photographic Miscellany
Links to all the health-related articles that I have written and posted here can be found near the end of the book.
Finally, a portion of the proceeds from the sale of HOW NOT TO DIE: In 13 Easy Steps will be donated monthly to my wife’s and my favorite charities and organizations committed to the curing and caring of those suffering from cancer and lung diseases.
I hope you enjoy the book.
Note: Even if you don’t have a Amazon Kindle or Fire, you can still read all Kindle products on your computer, tablet, or phone by downloading one of their free reading apps here.
We are all familiar with the term “The Emperor Wears No Clothes.” An expression arising from a tale told of a young boy who in his innocence declared aloud during a parade by the ruling King of the Realm, where everyone had to bow down to the King’s will.
“The Emperor Wears No Clothes!” as all around him bowed low and refused to see the obvious, much less name it.
The ruled had been indoctrinated into believing the King was dressed in full regalia and no-one dared to challenge his nakedness except this young innocent.
When anything unseen and hidden is causing problems either within a society at large or as is often the case within the immediate family, first you have to name it. Until something is named there is no possibility of resolving it. Whilst people around the “hidden issue or situation” pretend there is nothing wrong, the hidden gets power.
Naming a problem that everyone around is trying to cover up takes courage. Whistle Blowers often do this, as well as the family “scapegoat.” Child abusers rely on the hidden, look what has happened within many establishments in the UK over endemic child sexual abuse, torture and in a couple of cases murder; and widespread cover up from leading establishment figures, currently being revealed through a major enquiry, some of which goes back 40 years and beyond.
How many of those in authority in the Concentration camps knew inherently what was happening was heinous yet never had the courage to speak out?
It takes courage to name something when everyone around you is accepting something as being “normal” or “O.K.” There is tremendous psychic pressure to keep the status quo, to not upset the apple cart. More so when one’s livelihood depends on such silence or in the case of family, one’s sense of belonging is at stake.
But we remain silent at the cost of the Soul’s Integrity. Do we want to spend our years racked with guilt or denial because we did not speak when we needed to?
By our silence we are complicit.
We remain silent sometimes within a bad marriage. We know things are going terribly wrong but the prospect of our whole world shattering and the pain and suffering that ensues causes many to put up with years of unhappiness.
Fear of being alone causes many to remain in stagnating relationships with an apathetic resignation because they do not believe that no relationship is better than a bad one.
It is the same with any involvement. Becoming a member of an organisation, whether paid or unpaid, if we start to see our own personal values and ethics being compromised and at odds with the organisations goals we may have life changing choices to make.
I have been personally challenged with this in two mental health charities and a meditation group I am affiliated to. Those of you who have read
or been following my work on this and other websites will know that I sustained a seven-year period of altered realities when undergoing an awakening, which is described in the book. This was followed by fifteen years of world wide travel, volunteering, learning from Buddhism, Hinduism, Quakers and some Shamanic beliefs. I was led to research Mental Health both through personal connection with someone who has and still does suffer from a range of issues and has had periodic placements in secure units for their own safety; and through my own short time need for counselling, following returning from a stressful volunteer project in India.
As my involvement with these organisations deepened, I saw that despite their ethos to de-stigmatise mental health issues and to not label many conditions as an illness, they stopped far short of opening their minds to an Holisitc approach.
But there is something else going on here apart from an inability to address the more Holistic aspects of the Mental Health process, and that is many of these and other organisations are reliant on funding, if the funding sources and committees of these organisations have little or no awareness of an Holisitc Approach to Mental health then would they also decide that something they cannot easily see or relate to as being “Wacky” thus undeserving? I have attended enough meetings to see clearly where these concerns influence decisions.
Everyone is entitled to their views and free to believe what they want to believe, but when those same people become rigid in those views and categorically refuse to consider other perspectives on Mental Health, because it involves a major shift in their comfort zones then do we wonder how the Mental Health Paradigm is still stuck in the Psychiatric/Medical Model? Which causes in many cases worse side effects and long term problems than the original episodes of psychosis – read altered realities.
It may sound as if I am being pedantic here but I am attempting to convey an overall picture of how much minds are still closed, despite the information age of one-line Internet. There is no excuse for not being informed in today’s climate.
The question is “Do we want to be informed if it disturbs our reality?”
No one grew or evolved without touching the darkness within themselves or came to conclude that you cannot have a Universe made up of positive experiences only, it would lack substance and be completely out of balance. We need an amount of negativity in order to move and create time and space. The problem is because we collectively have not evolved to this understanding we are stuck in this Earth Reality where we allow our need for comfortable untruths to rule our minds.
It perhaps sums it up when a Committee Member commented when I said
“You do a lot of work for this Charity don’t you?” They responded “Well it gets me out of the house.”
We all have different reasons for volunteering but I guess meeting and interacting with someone like me who is convinced she has a “soul’s mission” to reveal all, including her own dark journey into a trail blazing brilliance of light, and refuses to shut up about it, would invite the comment, “She’s wacky!”
I speak of Psychic Attack and I speak of Possession. I also speak of life changing 500 mile pilgrimages, of Oneness and the need for discernment in these accelerated times. Reading or hearing the words Psychic Attack or Possession can cause a reaction of repugnance, well I have been there and discovered traumatically that…
There are more things in heaven and earth, Horatio,
Than are dreamt of in your philosophy.
– Hamlet (1.5.167-8), Hamlet to Horatio ~
Sadly the hidden does have power, it’s only by shedding light on the darkest of realities that we have any hope of raising it into a space where it may be seen, understood and dealt with, thus opening the gateways of higher Universal Consciousness.
“All that is necessary for the triumph of evil is for good men to do nothing.”
~ Edmund Burke ~
Avril Meyler, author of A New Human and A Multidimensional Paradigm, is a qualified counsellor, hypnotherapist and holistic practitioner. She is now retired and a full-time writer and volunteer for a Mental Health Charity. For more about the author visit her website at
multidimensionalreality.wordpress.com
(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…
