On the heels of a recent discussion on changing the Narrative of Cancer as a means to enable better communication and understanding with regard to the hundreds of cancer variants, I came across a very interesting article on a closely related topic: changing the Narrative of Dying. Far from being a depressing or downbeat approach, the article discusses the need for reevaluating our collective understanding of the “end of life” process in order to facilitate a healthier and happier means for saying our goodbyes without forgetting that, until the last moment, we are all still living and participating in this world. It touches on some important ideas, pivoting about the notion that our system, our society, marginalizes and fears death and, more specifically, the process of dying. Yet, death is as much a part of our existence as birth.
Continue reading Narratives Matter, Beginning to End
Category Archives: Fear
Anger May Be Cathartic, But It Is Still Bad For You
Being honest about our emotions is not always easy. Add a chronic or terminal illness into the mix and things always seem to get tougher. Sadness, self-pity (or loathing), denial, depression and, of course, our friend Anger, all come out to play.
Emotions can bubble up unexpectedly, violently, or simmer beneath the surface. They can trip a person up, derail a perfectly calm and pleasant morning, confuse everybody in the room and change just about any dynamic without a glimmer of grace or sense of appropriate timing. Emotions run counter to that thread of logic that many of us cling to for sanity, bubbling and popping and roiling all over our bodies like some adolescent’s acne. Yet, quite unlike the exquisite release of a properly ripe whitehead, venting our emotions can be done in decent company and in a healthy, scar-free manner — as long as anger does not get the upper hand.
The first thing to realize is that we are not fully in control of how we feel. We can work on our frame of mind constantly, quite successfully, and still not be 100% in charge.
Continue reading Anger May Be Cathartic, But It Is Still Bad For You
Guilt of the Patient
Genuinely, I sometimes wonder when I hear stories of other cancer patients who are suffering so much worse than me with their treatments, whether I should feel guilty about how well I appear to be doing, comparatively. It is an irrational reaction, of course, as I am not responsible for how other people respond to their chosen treatments, nor do I have any level of control over their physical health either before or after their cancer was discovered. Yet it pains me to hear these stories and realize that there is so little I can offer to ease the suffering.
In many of these cases, the patient remains upbeat, even happy, throughout the story. Tougher than I, these characters. Stronger of will, because they endure more by choice, determined to lick their adversary. And lick it they shall, because these are cancers that, even far along, can now be cured or, more practically speaking, be diminished to the point of near eradication. And this, in spite of the heavier toll paid for the intense beat down of the chemo cocktail, makes me feel a little jealous. And that jealousy makes me feel guilty, too.
And then along comes my friend, Carlos. A refuge from El Salvador, Carlos came to California with the hope of finding some treatment for his leukemia. He is a slight fellow, but only on the outside.
Continue reading Guilt of the Patient
Language Is Your Enemy: Why Terminology Matters
Our culture has recently dipped into a new low when it comes to the context of our words. One could blame Twitter or the general dumbing down of literature or reality TV, but the sad implication of our times is that society has largely grown intellectually lazy. This is hugely important to understand, because, like it or not we still communicate predominantly with words. Emoji simply cannot express the full range of our experience, and even if they could, eventually it would be clear that they are still just avatars for words or expressions and our verbal language still matters.
But why does terminology matter so much?
Let us examine one word so often used to describe the cancer patient who is living beyond his or her treatment and consider why it is so insidious: survivor.
Continue reading Language Is Your Enemy: Why Terminology Matters
Getting from Point A to Point B, More Fun than Being Stuck at A
There is a lot to be said for knowing where you are going. And even if you can’t know the destination, at least knowing the path you are on.
When I first began wondering what was going on with my health, I suspected that I was merely dealing with fallout from a steroid treatment that I had taken for a shoulder injury. The steroids had left me wiped out and susceptible to whatever viruses my daughter was bringing home from school…and I spent several weeks fighting off whatever respiratory illness had dripped in my lap. Once the “colds” began clearing up, I had a few small infections that seemed to persist in my nose and finger. At that point, no one suspected that the nose infection was actually a weird little ingrown hair, but I was getting more concerned that the shortness of breath I had begun to experience was a result of walking pneumonia. The initial diagnosis was a probable systemic staph infection, but I was sent for a chest X-ray just to be on the safe side.
And that was when I suddenly no longer had an obvious path.
The X-ray identified a 3cm mass
Continue reading Getting from Point A to Point B, More Fun than Being Stuck at A
Alien Abductions: Not So Healthy
While reading The Skeptics Guide to the Paranormal, I was stunned to find a list of the common indicators that one has been abducted by aliens, only to realize that I could check off virtually every item. Anecdotally, it appears that the aliens have done an extraordinary job of both wiping my memory AND accounting for my lost time. I have also deduced that, by the standards required of numerous historical non-scientists, I am almost certainly the victim of numerous hauntings. And yet a part of me remains wary of either of these near-certainties.
The neglect & trivialization of violence against women is horribly wrong
Native American Women are disproportionately victimized without justice. This is horribly wrong. Domestic issues of victimization through forced prostitution are swept under the rug, with the prostituted frequently being punished when they are often the true victims. Often discussed dispassionately as a “global problem” with the thought that this sort of thing happens only in underdeveloped or backward nations, it is truly happening in every country and in virtually everyone’s backyard. Hyperbolic? Not particularly; it just depends how you define “backyard.” For the sake of this position, I will broaden it to mean “local community,” and challenge you, dear Reader, to find a community in the United States that does not have at least one instance of violence against women. Continue reading The neglect & trivialization of violence against women is horribly wrong
Delays Are Bad For Everybody
By now everyone who is not a complete media hermit knows about the tragic events of yesterday at Sandy Hook. When it takes the murder of 20 elementary school children for politicians to declare that now is the time to work on serious gun control laws, it is a sad statement indeed. The truth is, the time to start would have been any time before this. Now is already too little, too late.
Postponing the opportunity to do the right thing is an unfortunate part of business as usual in Washington DC. Delays of important changes are the norm in all aspects of politics, because money is inevitably involved. And sometimes the delays are just plain due to basic human evils of greed or power. But it does not take much to see that inaction is not merely wrong, but is itself a willful action of its own to maintain an outmoded status quo.
The issues of the Sandy Hook massacre do not end with gun control. This is a mental health issue as well, one which should equally invigorate the push for greater universal access and improved social services, which have for decades been fought against and delayed, delayed, delayed.
This is not a mere issue of procrastination, which is bad enough. But extrapolating the wisdom of “not putting off until tomorrow what you can do today” brings this down to the personal level and hopefully will make everyone realize that there is no escaping our collective culpability. We all had a hand in the death of those children by our very lack of action. Look in the mirror and realize this: if you have not made your voice heard and taken action to prevent this sort of thing, then your lack of action is part of the reason those children are dead. Putting off calling your congressman is a deliberate force in making these things likely to happen again. Not voting against politicians who fail to actively fight to bar automatic weapons or expand social programs is an actionable offense that you are culpable for.
These are black and white issues. We all have levels of guilt here. Do not delay on making things right until tomorrow.
Panic: Very Unhealthy
Fear mongering, as you should know by now, is one of the top ways that people or corporations get you to buy. This is true politically as well as economically, so it is always worth reminding ourselves that panic is a reaction that circumvents intellect. Sometimes it is certainly warranted, but (hopefully) not often. So, when being approached with an idea or a product that is presented from a fear-based perspective, always think twice and look closely.
Here is an interesting example that I came across online: Survival Joe’s Newsletter. It even comes with one of those handy newfangled barcode links for those of you who have a free smartphone in your hand as you read this.
Apathy is Supremely Bad. For Everyone.
Invisible Children | Kony2012.
If you are not aware of who Joseph Kony is, you should be. He is the embodiment of evil in a part of the world that is too often ignored by the rest of us and the fact that he has been allowed to carry on his reign of terror for well over 20 years is a testament to the power of apathy. Continue reading Apathy is Supremely Bad. For Everyone.