Saturday, March 9, 2013


I have a confession to make, one that may surprise people who really know me, especially those who are aware of my love of having things organized and my love for preparedness and for planning.

I am not fully prepared for death or catastrophic accident.  

I don't mean emotionally, or spiritually, ... those are entirely different conversations ... what I am referring to now, though, is legally.

Here's what I think legal preparedness looks like:

*Researching and discussing various life and death and related financial issues so that legal paperwork including a will and a living will have been prepared to detail health care decisions, transfer financial assets, and to put thoughts and arrangements into writing. 
*Having had this paperwork reviewed and finalized by an attorney who also provides advice on issues such as creating a trust and custody of minor children.
*Having organized all of the above as well as information on assets (bank account numbers, documentation of property ownership, etc.), insurance policies, and contact information for key people and having informed several key people that such an in-case-of-emergency file exists and where it can be located. 

One of the many things I learned first-hand from going through the experiences that came as a result of my dad's illness and death is the need for legal preparedness.  While my dad wasn't young, per se, he wasn't nearly old enough to think that there was an urgent need for him to be fully prepared from a legal standpoint for his death or for an illness so devastating that he would be left unable to finish preparing.  He, like all of us, thought that there was still time left to do things like that.

There are other things in life that are different versions of preparedness, things you hear that you should do "just in case" but that you put off for one reason or another.  Sometimes that turns out ok, like if you don't buy the extended warranty on a new refrigerator and either it doesn't break or it does and the repair costs aren't too bad, but here's the truth about end-of-life legal decisions and planning: at some point, it will matter if you haven't gotten your affairs in order.  Unlike other things that can technically be put off forever, this is one thing that will cause great problems if it's left undone.

There are odd terms for doing this kind of thing, really: getting your affairs in order,  making final arrangements, pre-planning (isn't all planning "pre-planning"?).  But it is perhaps one of the most important tasks you can accomplish as an adult, if not for your sake (in case you go on ahead right away instead of hanging in the balance for awhile like my dad did), then for that of those you will leave behind.

People talk about their Bucket List items, things they want accomplish before they die.  But what about what they NEED to get done?  I didn't realize the complexity of what needs to be prepared before I was one of the people needing access to that information for my dad, and I hadn't really considered the implications that could ensue if that type of information wasn't organized and at-the-ready.  It's difficult enough, I'm sure, to pull those documents out and to go through them to see what needs to be done when a death has occurred suddenly and/or unexpectedly.  What we didn't know before, what we couldn't have know until we had experienced it ourselves, was just how tough it was to put all of that together while we were caring for my dad and trying to cope with our own grief during the ten weeks he was so sick.  Not only did we need access to the information that would normally be needed in case of a death, but we also needed to know about other things on Dad's behalf during his illness like long-term disability coverage, health care insurance benefits (Medicare and private insurance), and long-term care insurance.  It took a lot of time and effort from all of us to gather that information and to decipher what needed to be done to make any of it available for Dad's care.  It's something that I'm sure my dad wouldn't have left undone had he been aware of the implications of not being complete in organizing the necessary information.

Now that I've experienced the difficulty of it first-hand during his illness, I KNOW better.  Still, for a variety of reasons (excuses?), I am not prepared, but I have set a goal to get my things in order; I've started the process, and hopefully I can finish it in the next month or two.

It's a depressing and tedious and stressful thing to do; that's for sure.  Nobody likes thinking about the type of what-if's that are involved in this process, but I can only imagine what a gift it would be to have it all together, should a crisis occur.

Here are some resources, in case you aren't complete in your preparedness either:

A website with info about attorney Alexis Martin Neely's book "Wear Clean Underwear" - a great resource about legal planning, especially for parents (Here's a shout-out to my sister JB for finding this one!)

"Getting Your Affairs In Order," - a free Penn State reference guide

Thursday, March 7, 2013

Kindness and a "Beef"

I can't remember when I first started hearing about "random acts of kindness," but it was many years ago.  As the story goes, a woman named Anne Herbert is said to have written the words "Practice random acts of kindness and senseless acts of beauty" on a placemat in a restaurant back in 1982, which reportedly started the movement as her words were seen by a fellow diner and then began to be shared, the momentum of which eventually gave rise to a book called Random Acts of Kindness, which was published in 1993.  The book quickly became an international bestseller and has inspired many conversations as well as the writing of numerous articles, posts on social media, and other books, all based on the simple concept of demonstrating kindness to strangers.  

The original book gives examples of random acts of kindness and provides many quotes about kindness, all of which are generally inspiring, thought-provoking, and uplifting.

It's impossible, I think, to imagine that there is a person alive who wouldn't agree that the concept of performing acts of kindness as the book describes is anything other than a good thing to do.  However, after years of hearing people talk about the random acts of kindness they have done, I have a beef about the way this idea is often being put into practice.

I think it stems from the fact that I work with a group of behavior specialists who talk a lot about the fact that every behavior has a motivator; in other words, everything a person does is done because he is motivated by something to do it.  Of course, that motivation - the dangling carrot, if you will - varies from person to person and from situation to situation.  Sometimes it's money, sometimes it's power, sometimes it's recognition, sometimes it's just plain fun, but the reason people do things is that they hope to get something they want in return.  

In my estimation, what Anne Herbert meant when she scribbled those words on that placemat was that she believed in altruism; she believed that people in general could be motivated just by the idea that they could influence the well-being of others and that knowing that would generate a desire to reach out in some way to do something kind.  I think she intended for people who carried out random acts of kindness to be satisfied just by feeling like they'd done something good for someone else.

Martin Luther King talked about the concept of selfless love and said that people should "create redemptive goodwill toward all men ... an overflowing love which seeks nothing in return." 

Of course I agree; of course I recognize that the world would be a better place if we all practiced more kindness.  My concern comes from the way that I've witnessed random acts of kindness being put into practice, with the person or persons performing the kind act telling others about what they have done. 

In my opinion, talking about the fact that one did a good deed turns that act into something of a boast; telling others about the kindness starts to seem more like an opportunity to proclaim one's own goodness and, from the way I see it, the generosity of the act is tainted by such a declaration.

I understand the intended chain reaction, the rippling effect that can come from hearing about a way that someone has helped someone else. I have often said that peer pressure can sometimes be a good thing, and I can see how one could be inspired or could even just glean an idea for a way to try to help another person from hearing about someone else's act of kindness. 

But I think that what the originator of this concept actually meant to inspire is not only the performance of random acts of kindness but also anonymous ones. I think a true act of kindness or generosity bears no witness and has no strings attached.  I think that if any information is to be given out about the exchange of kindness after a random act from a stranger it should actually come from the recipient, not from the giver.  That, to me, preserves the purity of the altruism; that makes an act of kindness what it is really supposed to be: a deed of benevolence that sets up an opportunity for the spread of more of the same, which protects the basis of the original idea and extends the hope that all of mankind may someday, somehow be touched and inspired by kindness, just for the sake of being kind.

So here's the challenge of the second Exercise in Perspective that I want to share:  Do something kind for someone else and don't tell anyone about it.  Don't do it because you think you should and don't expect anything at all in return - not recognition, not thanks, not good karma, not gratitude.  Just enjoy the feeling it gives you - that's really more than enough reward.

Just in case you need help or inspiration to think of an idea for a Random (and Anonmyous) Act of Kindness, here is a link to the Random Acts of Kindness Foundation:

                                        CLICK HERE TO ACCESS THE LINK.

Wednesday, March 6, 2013

Cancer Sucks

Reports came out today about former TV star Valerie Harper having been diagnosed with terminal brain cancer.  

Harper, 73,  played Rhoda on the Mary Tyler Moore Show from 1970 until 1974, after which she had her own spin-off show called "Rhoda" until 1978.  She wrote a tell-all book called "I, Rhoda" that came out in January this year.

She went through treatment for lung cancer in 2009; her diagnosis at this time is Leptomeningeal Carcinomatosis, or LC, which occurs when cancer cells, usually as a relapse from cancer originally in another part of the body, invade the subarachnoid space, enter the cerebrospinal fluid, and are transported throughout the central nervous system.  LC occurs in up to 8% of patients with cancer, most often in cases of lung cancers, breast cancers, GI tract cancers, and melanomas.  

I didn't know all of that about LC until recently.  I follow a blog - Family Bonding Time - about a husband and wife who were both diagnosed with cancer almost simultaneously, and the wife, who has breast cancer, was diagnosed in January with LC as well.  

In reading about it, I was shocked to learn that LC can come from the spread of GBM, the type of primary brain cancer that my dad had.  We had been told by the team of oncologists and neuro-oncologists that GBM almost never spreads and that we shouldn't be concerned about that for Dad.  (Looking back, I wonder if the reason they said that is because they suspected that he wouldn't last long enough for any spreading to occur.) Apparently in cases of LC, often nothing new shows up on scans because the cancer has spread into the spinal fluid rather than through an increase in the number or tumors or in tumor size.  Symptoms of LC, of course, are very similar to those of other types of brain cancer, including GBM, but a couple of the markers for LC listed in the information I read caught my eye: extreme lethargy and severe pain reported diffusely in the top of the head, both of which cannot be explained otherwise, as in they do not seem to be coming from other sources like a side-effect of medication or the location of a tumor.  Both of these things were true for my dad, especially during the last month of his life, when he was so tired he could hardly keep his eyes open (but oddly and torturously for him he couldn't sleep because of the massive doses of steroids he was on - because he kept reporting severe pain on the top of his head!).

I guess it doesn't matter, does it?  I guess they could have done a spinal tap to check for the presence of cancer cells in the spinal fluid - and actually they did consider doing that to check for meningitis at one point, but then they decided just to treat him with antibiotics that would treat any type of infection instead.  If they had found LC, in theory they could possibly have treated it with chemo administered through a catheter into that part of his brain, but honestly I doubt he could have tolerated or withstood that treatment, and I guess I'm glad we didn't have to make the decision of whether or not to put him through such a drastic intervention when it was not very likely to buy him much more time, if any, in his condition.  I will never get over the fact, though, that no one on the team of specialists who were assigned to Dad's case towards the end, could even venture to guess why he was going downhill so rapidly, especially after he had been given transfusions and heavy doses of medications to restore his blood counts to within normal limits.  "On paper, he should be better," his oncologist said, but he wasn't, and I will never forget those words.