Category Archives: NY Times

assisted suicide, euthanasia, Life or Death Siutation, loss of sensation, Margaret Pabst Battin, MS outcomes, NY Times, right to die

Are You Strong Enough to Let Go?


The feel of not to feel it,
When there is none to heal it
Nor numbed sense to steel it. – Keats
I have thought of this quote off and on since I first ran across it on an MS World forum.  As I have dealt with loss of sensations and increased pain, as odd a pairing as I ever expect to run across, I have wondered if I would ever want to die.  Thus far, no pain has induced me to consider it, but this article is a scary look at what kind of strength is required for people to follow their loved one’s requests.  Words to paper, even with witnesses, will not allow for seemingly needed release without the strength of those who left behind.
“A Life-or-Death Situation”
After reading the article early in the week, two quotes from the article resonate with me still:
“He still wants to believe the mind is everything. But he has learned that no mind can fly free of a useless body’s incessant neediness.”
and
“Pain eats away at your soul.”
The article was one of the saddest I have read in a long time.  In it, an ardent defender of the right to die, Margaret Pabst Battin (Peggy), deals with her husband after an accident.  Despite his living will, writing of a farewell letter and even an “attempt” to let go, she has kept him alive saying it is not his time.  
In the end, I cannot help but think she is a hypocrite.  For somebody who advocates for so many to have the right to die, she seems to hold control of her husband’s fate despite his previously expressed desires.  In fairness, how many of us have the strength to let our loved ones die?  Maybe it is how the article is written, but she does not seem to believe in allowing him to choose to die.  Maybe she will let him think he has that power, but only for a moment.  Worse in my eyes, is the telling him after that she would have revived him.  Is it not enough to have to live that way without a loved one taking away from him even the appearance of control over his fate?  The control freak in me would hate the life I breath with the loss, one I already fear.
Clearly, he does not want Peggy to suffer.  With that, I suspect she fools herself thinking he would voice his thoughts second-guessing her.  These decisions are hard enough for all involved.  I know I would never voice my second-guessing of J in the same situation…though I would still hope she would follow through with my wishes…With evidence, she had not done so once, twice or even more, still I would hope for a better outcome the next time, especially if she said she would let me go.  In the end, I would hope she comes to recognize my will when she is ready enough to follow it as promised.  To do otherwise would seem a cruelty.  It is a hard enough burden to leave for those behind, the having to choose the hour of passage of a loved one.  The second-guessing of acts done in love and grief would seem a harshness to me, unworthy of the love motivating the acts.
I will always remember the last words I heard my grandma say.
“Please don’t make me cry.”

further interview of author on NPR:  http://www.npr.org/2013/07/25/205455599/for-bioethicist-with-ailing-spouse-end-of-life-issues-hit-home

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depression, NY Times, PML, poverty, Richard Wilkenson, Tysabri

"Statistics are like a bikini. What they reveal is suggestive, but what they conceal is vital"

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Richard Wilkenson cost of inequality:


“Kathryn Edin, a professor of public policy and management at Harvard’s Kennedy School, said in a phone interview and in a series of emails that a major problem with all three attempts to measure poverty ‘is that the poverty level has no real empirical basis — it is not a good measure of how much it takes to survive nor is it a relative measure meant to reflect what is required for social inclusion in the society. The poverty level is most certainly too low. Most people can’t actually live on incomes that hover around the poverty threshold.'”

The second quote was from Aaron Levenstein saying, “Statistics are like a bikini. What they reveal is suggestive, but what they conceal is vital.”
Speaking of suggestive statistics and studies, on Patientslikeme.com, I ran across a reference to a study suggesting antidepressants may be useful in warding off or curing PML, a major risk of taking Tysabri as I have been for the past 6 years.  http://www.jns-journal.com/article

  
Given that Tysabri remains very popular for many making the same calculations my wife and I have on the value of continuing usage despite the risks, it would seem dealing with any signs of depression should be deemed very important.  According to one meta study done a couple decades ago, between 25 and 50% of MS patients become clinically depressed.  Granted, in the past 20 years treatments have come a long way, but everything I read suggests depression is still quite common.  

I guess I now have one more way to guilt trip those who give me a hard time, or at least those who wouldn’t recognize true clinical depression as opposed to situational sadness.  “You’re going to kill me! Don’t you know depression makes me more likely to get PML and die?”  I shouldn’t joke, but… 
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In family notes, we have been battling to get K out of hospital and keep her out as she battles a stomache virus for the past 5 days.  I’ve never seen so much come out of someone so small.  Sometimes one has to smile even in the face of gross:


 I have no idea why this post has such a funky presentation as it was written in word and copied over the same as the past 100 posts. 
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