terminal illness of family member/spouse


Hypnotically Pink for the Cure (1488505615)

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Last week’s uproar over the Susan G. Komen Foundation’s anti-choice antics led me to want to know more about the young woman for whom the breast cancer awareness behemoth is named. But after  a couple of days of Googling, it became clear that after 32 years, poor Suzy Komen is little more than a name on corporate letterhead. Her story is forever lost, filtered through her sister, Nancy Brinker’s, perceptions of the events and how she has decided that the story of the real Susan Komen should be presented.

If you google Susan G. Komen, you will be rewarded with links that speak only of the foundation. Aside from Brinker’s memoir, which is really more about her than her sister, precious little information on Suzy Komen exists.

The poor thing doesn’t even have her own Wikipedia entry. Her namesake fundraising corportion, however, does and so, unsurprisingly, does her sister, Nancy.

One thing I did find, and it’s also not a shock because the Internet is stuffed with all manner of griefy culture things, was a picture of Suzy’s grave. And it immediately occurred to me after reading the inscription that Suzy isn’t the only one left out in cold as far as her story goes. So was her husband.

She is listed as daughter, mother and sister. Presumably the children had a father so at some point, she was a wife. Why isn’t that mentioned? A quick peek at the “official” Komen Foundation historical record on her mentions a husband, Stan, her high school sweetheart, but then it drones on with barely a mention of him or their two children again. Judging from the Foundation’s biography of Suzy, the only people who truly counted in her life were her parents and, of course, her sister.

Knowing what I do about the widow world and the odd notions that extended family and the non-widowed have about the whole “til do you part” and the general scorn there is for widowed who move on at an “unseemly” pace, I came to three possible conclusions.

Stan Komen, Suzy’s husband:

  1. bailed on her while she was ill and therefore earned his exile.
  2. remarried too soon for her family’s liking
  3. doesn’t care much for the happy, happy, joy, joy Disney Princess pink face that Komen’s spin has slathered all over the disease that killed his wife and so he declines to be a part of it.

Stan Komen owned a wine and spirits store in Peoria, Illinois. He still does. You can google him and it. I even found a few news articles that refer to him as a successful business owner and a person who offers advice to others in his industry. There is no mention of a second marriage, but I would guess he has moved on. He was a young man with young children, and it’s doubtful that he remained single (though I wouldn’t rule it out).

But no explanation of his, or his children’s, absence from the Pink juggernaut’s publicity machine. Cuz, let’s be real, run, walk , jump and knit bras for the cure owes its existence to bereaved spouses, children and extended family and friends.  Widowed who involve themselves in the cause to eliminate what killed their spouses is cliché.

So, did he piss his in-law’s off while his wife lay dying?

“A lot of guys bugger off when their wives fall ill,” Rob reminded me.

And that is true. Breast cancer victims especially find themselves alone quite often although I bet the reverse isn’t true with men who find themselves physically altered by prostate cancer.

However, I managed to find a preview of Nancy Brinker’s book about … herself mostly … and the origins of the foundation via Google books. According to Nancy, her brother-in-law was pretty much a Hollywood stereotype of devotion and sacrifice during his wife’s illness. He loved her very much and was devastated by her death.

Colour me confused then by his absence from his wife’s final legacy on the place where she rests. Even if he did remarry that doesn’t make her less of a wife to him. That was part of who she was and should be included regardless of what he moved on to.

I found the whole thing rather sad. Suzy asked her sister to “find a cure” for the disease that killed her. Komen donates very little really to research. The bulk of what they collect from the husbands, children, family and friends of women dead or dying is funneled to pay salaries of Komen employees (Nancy herself makes over $400 thousand a year as CEO) or is used to lobby Congress on behalf of insurance pharmaceutical companies or promote Pink ribbon products that often contain chemicals that are thought/known to cause breast cancer and to promote events to promote breast cancer “awareness”.

The last is funny because women in North America are so aware of breast cancer that they don’t know that they are actually more likely to die of cardiovascular disease. Fear-mongering has paid off so well for Komen that the latest research on the  risks of overscreening via mammograms are ignored or treated like junk science.

Suzy would be proud, I am sure, of the fact that 32 years after her sister promised to find a cure for breast cancer, a woman with stage four of the disease has nearly an identical survival rate as she would have had 50 years ago.

I am still left wondering who Suzy and Stan Komen were. Her silence on last week’s events and her sister’s efforts over the last three decades is understandable given that she is dead and all, but his? Telling? Maybe.


Terry Fox statue in Ottawa

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Terry Fox Day, week, month, millennium – take your pick – is upon us again. Being a Canadian hero/icon, it’s hard to get away from the fundraising done in his honor/memory during the month of September, but Dee continues to be unsettled by the nation’s adoration and determination to carry on the fight against cancer – via money – in his name.

As I do every fall, I sent numerous email reminders to the school asking that Dee be allowed to opt out of all the assemblies and/or information sessions about Terry. They nearly all include some sort of visual representation of Terry, and she simply can’t see the guy without it conjuring up negative emotions. I have told her that someday it won’t bother her as much to which she replied,

“It will always bother me.”

Perhaps this is due to the fact that her first encounter with him occurred shortly after our moving up to Canada from the U.S. when she was dealing with all sorts of adjustments and readjustments, and poor Terry was swept up into the emotional stew never to be released. Whatever the reason, neither Rob nor I feel that Dee’s participation in Terry Fox Day is important enough to force it on her. It’s just another made up holy day. She is happy to take her toonie and walk with the other kids during the walk/run in his name and that’s fine with us.

Inadvertently, however, one of the staff showed her class a video about Terry last Friday. When she informed me, all I could do was sigh. I can’t run interference 24/7 and I told her that. Sometimes these things will happen and she is going to have to open her mouth to object herself or suck it up and deal.

“It couldn’t have been that upsetting,” I told her.

“It was,” she insisted. “It makes my tummy feel uncomfortable.”

“Not that much,” I countered, “or you would have spoken up, and you would have said something as soon as you got home from school.”

She couldn’t refute that because she didn’t mention it until later that evening as we were on our way to shop for birthday presents for upcoming parties to which she has been invited.

“I still didn’t like it,” she replied.

And I don’t imagine she did. I can’t stand watching movies or television shows that depict death or grieving. It’s just not entertaining.When you haven’t experienced something, seeing it is enlightening and gives you a chance to mentally try it on and live it, but once you can call an event your own through first hand experience, the vicarious thrill isn’t so thrilling anymore.

Terry Fox reminded me though that although Dee is a bit over experienced in the dealing with death department for someone her age. She still needs to be prepped in advance of  incoming where death is concerned.

Rob and the older girls have another funeral up north to attend, and as I was explaining to Dee why were weren’t going (Rob and I are agreed on no more funerals for Dee unless she had a relationship with the deceased), she inquired as to whether or not she and I would be taking care of Edie’s dog, Loki.

The dog is getting on in years and has been suffering with diminished mobility that’s gotten worse over the past year. He can’t be left home alone even if it’s just overnight, and he is getting to be too much work to ask someone to take him in for a couple of days here or there. Still, we’ve taken Loki before, soDee’s question was a logical one.

“No, honey, ” I said, “Loki is a lot of work now, and he is more comfortable being with Edie anyway.”

“Because of his legs?” Dee said.

“Yes, his legs aren’t getting better, and Edie knows best what to do for him.”

“They aren’t getting better?” the tone and not the words contained the actual question.

“No,” I said, choosing my words very carefully. “Sometimes, doctors can’t do anything, and they can’t do anything for Loki. His legs will get worse, and then he will not be able to use them.”

She nodded thoughtfully and said, “That’s why Edie is getting the wheelchair thing.”

I nodded, “But that’s just to make things a bit easier. Loki isn’t going to get well.”

“Animals don’t live forever,” she agreed, “and neither do humans.”

And that’s where the conversation was left. Later on, as I retold it to Rob, I pointed out that it was only in the moment I realized that Dee needed advance preparation for the inevitable where her sister’s dog is concerned.

The dog, in a twist of ironic fate that makes me dislike the universe’s odd sense of interconnectedness, is suffering from a demyelinating illness that is slowly paralyzing him. Once it’s done its dirty work on his lower half, it will travel up the spine and leave him essentially trapped in a useless body. It’s very similar in effect to the disease that killed my late husband, Will. It’s not consciously painful, but the collateral issues can cause discomfort and anxiety. There isn’t much that can be done because science just hasn’t found a way to replace the damaged myelin sheath that covers nerves in people or animals. Once the protective covering is gone that’s it. What’s left is no more or less than a prison made of flesh. To say that I am not eager to bear witness to that, or to the pain it will cause Edie, is understating and understatement.

Though Loki’s issues are not new, the diagnosis is and the game plan is in early days. Progressive degenerative illnesses vary from according to the individual, and so everyone waits, watches and hopes – but it’s never to early to begin to prepare. I am a Boy Scout in this matters, and so I laid a bit of the groundwork for Dee.

Tomorrow, she will hang out in the library while her classmates watch yet another inspirational video about Terry Fox, and then she will join them as they run or walk to raise money to beat a disease that will never be beaten. Death comes to all things and cancer or degenerative illness are but two of its avenues.

I wonder if the organizers picked the last month of summer on purpose? With its fading, falling retreat to pre-winter here, it’s a fitting season for such an event.

 


Republican campaign poster from 1896 attacking...

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The reality show known as the GOP debates produced a lovely but somewhat disingenuous meme the other night. Moderator Wolf Blitzer (who has to be hoping that someday he can escape back to some semblance of his cooler “scud stud” days before he dies a tool of the main stream media) asked candidate Ron Paul one of those delightful beside the point questions that involve hypothetical scenarios from an alternate United States timeline,

Headline meme’s on Facebook and Twitter embellished the lone gunman’s “yes” response to Blitzer’s “should society let him die” to GOP Audiences Cheer as Ron Paul Proclaims that the Uninsured Should be Left to Die. Which is not what the man said at all, and to be more fair, the audience cheered him on his rather wishy-washy “personal responsibility” point and not about letting a man in a coma die because he didn’t have health insurance.

Personal responsibility is a red herring catch-all phrase in the United States that allows people to safely distance themselves from the reality that many people are responsible and are still caught by rock and hard place scenarios from which only a government  safety net can save them. It’s a word we use when we don’t want to acknowledge that we are really heartless fucks who don’t care about anyone outside our personal circles.

Regardless, the meme spoke and it came down on the side of slightly twisting the event to make Ron Paul, the Tea Party and the GOP in general fit the storyline, which is that people on the right are cold, soulless bastards who want to make over the American government in their heartless, bible thumping, Ayn Rand loving images.

The reality, which is that Blitzer’s what if missed by a country mile, is that most uninsured Americans can’t afford health insurance and that Ron Paul lives in a fantasy world where churches and other charities still take care of these people. This, however, wouldn’t have made as compelling of a soundbite. It certainly wouldn’t have fit in a Tweet.

In keeping with their newfound zeal to fight half-truth and blatant lies with more of the same, the energized Left pounced all over The 700 Club’s Pat Robertson yesterday with a similar eye for clever editing and disingenuous headlines.

Robertson does this quaint Q&A during his broadcast. Viewers send in questions, and he plums the depths of his holy man status to advise them.

The Crooks and Liars (and they couldn’t have named themselves better if they tried) website quickly and crudely edited this gem*, which sped about the social media like new gossip in a high school lunchroom.

Pat Robertson Says Divorce Terminally Ill Wife went wild to the point that the mainstream was forced to pick it up and repeat the nonsense.

Nonsense because that’s not really what Robertson said. In a rare compassionate take on his own brand of Christianity, he admitted that wanting to move on from a marriage that has been effectively ended by one spouse’s dementia is an ethically difficult one, but that he would not judge someone who did. In his opinion, a man who wanted to do so should make sure his wife is well-cared for and divorce her though he admitted that perhaps an ethicist  would be the better person to ask.

I have little patience with hypotheticals that aren’t really. People die from lack of health insurance all the time. Spouses are effectively widowed by dementia all the time. Let’s not play with this scenarios as though they aren’t thorny and real. Just because you may have avoided some tragedy or other doesn’t make it just another thought exercise.

Anymore I can’t distinguish between Left, Progressive, Right, Moderate, Conservative, Liberal. It’s all shrill. Or half-lie to “make a point”. Or making light of the very real lives of very real people to make a point like the Robertson meme in particular. It’s mostly bullshit that distracts from the work that needs to be done to solve the actual problems that are crushing the democracy right out of the country.

A Facebook/Twitter friend, who suffers from a life-threatening illness, took understandable exception to the overlaid implication that abandoning sick/terminally ill spouses is okay. She comes at the meme from the opposite side of the equation from myself. In some ways, the sick person has the upper hand because they are, rightly, awarded the lion’s share of the sympathy, but speaking as the former spouse of a man who had dementia, there are two sides to every story regardless of how tragic it is.

She was appalled by Robertson’s stance that dementia leaves essentially a “walking dead person” in its wake, but that’s exactly what it does. And just because it makes you uncomfortable to “go there” doesn’t make it less a fact.

First they become a complete stranger, Then they devolve into a stranger who doesn’t know you. Finally, they become a breathing corpse. A simplified version. There is more, and most of it is sad, lonely and soul-crushing, so I will spare you the finer points.But “walking dead” is a good, if stark, analogy.

Like Robertson, I don’t fault anyone who wants to cut and run. I’d have run a hundred times if I’d had the opportunity. I am not a better person because I didn’t.

Loyal spouses are patted on the head for their exemplary capacity for self-sacrifice just as the terminally ill who fight tooth and nail, even when they and their families would be better off if they didn’t, are given posthumous gold stars for “courage”. It’s textbook. It’s Hollywood. And it’s beside the fucking point.

Sometimes I understand perfectly why Obama always looks like a middle school teacher just after his worst class of the day. Are there any grown-ups left in the room down south anymore?

 

*You can see the clip in its entirety here.