This story seeks to increase awareness and understanding of the unique needs of individuals diagnosed with life-changing illness or injury and their families by providing insight into the life of a man as he went through diagnosis and treatment of brain cancer (Glioblastoma Multiforme - or GBM).
Life, for the most part, is full of the mundane, the predictable, the obvious, the day-in/day-out routine. We get up each morning, get dressed, eat breakfast, go to work or school, run
errands, take care of the kids, make dinner, clean up, and go to bed. Repeat. It is easy to become complacent, to take it for granted, and even to sometimes complain about the little things without realizing what a blessing thingsaround us really are.
And then, in the blink of an eye, everything
changes. We are jolted out of our reverie, forced to refocus and to reevaluate pretty much everything.And even as much as we might
wish that things would go back to the way they were, things are changed.We are changed.And, for better or for worse, so is our
perspective.
In a way, the holiday season was part of the
repeating loop for me over the years.Certainly the joy and the excitement were
there, especially seeing the wonder and the happiness in the faces of the children in
the family.Looking back from this
vantage point, though, I can see that I spent too much time worrying leading up to and during the holiday season each year.I worried about when and how the Christmas
decorations got put up, I worried about having the “perfect” gift for everyone
on my list, I worried about what I would prepare for holiday get-togethers, I worried about getting a photo for the annual Christmas card and getting the cards addressed and mailed out in a timely manner, and
I worried about making sure that my kids had an action-packed, memorable
(at least what I thought was memorable at the time) holiday season.A lot of the stress I felt during the season
was admittedly self-inflicted.And, as I
see it now, a lot of it was unnecessary and unproductive.
As I got out the Christmas decorations this year,
I thought about years past when I did the same thing and I thought about when my dad was sick. The hustle and bustle was still present that year - it was just focused on a different set of priorities. My kids did
most of the decorating at my house that year; I was out of town helping to care for my dad
a good bit during that the time.I did 100% of my
Christmas shopping online, much of it late at night in between conversations
with Dad.Some of the gifts did not get
wrapped, and a few even got left behind in the transport between my house and my parents’ house, where my extended family gathered on Christmas Eve and Christmas Day, taking
shifts being with Dad who was in the hospital in the ICU at that point.
I will never forget how awful it was being in the
hospital that Christmas. The hospital
cafeteria closed after lunch on Christmas Eve, and families of patients in the hospital had to fend for themselves for food for the next day and a half
after that. The roads were icy and travel was precarious, and
everyone in my family was so, so sleep deprived and concerned about Dad and about each other. None of us cared about opening gifts or celebrating; the only thing we really wanted to do was to spend time together
and to do whatever we could to try to help Dad.
I thought about that a lot as I lifted each string of lights and each
ornament out of the boxes again this year, and here’s what I realized: As tough as
things were that Christmas, not for one second did any of us lose sight of the value
of being there together. No one in the family ever said anything like this isn't fair or I'd rather be somewhere else or doing something else. Together we
struggled through my dad’s illness and death and together we have struggled through the grief since then, the day-to-day routines as well as the holidays that have come since then now colored in a very different way. The lessons
I learned from all that we went through that holiday season are things that
I am certain will never leave me – things like how it’s more important to focus
on the joy and togetherness of today than to worry about the details of
tomorrow, especially when much of tomorrow is out of our control. Like how it’s important to ask for help when
help is needed and how stuff is just stuff. Like how when one of us is sad or exhausted or discouraged or sick or hurt,
we are strong as a whole. And like how, even in
the midst of the everyday, it's possible for perspective to reflect the riches that we are
fortunate enough to hold in the moment.
"The true meaning of life is to plant trees, under whose shade you do not expect to sit." ~Nelson Henderson
GENEROSITY is central to the practice of many religions and cultures and manifests in many ways. It is a practice - and a concept - that we continue to learn about and to consider as individuals and as groups of people.
Before my dad got sick, I viewed generosity mainly in terms of giving money, material goods, time, and/or attention to those in need; honestly, donating was something I did because I felt it was something that I should do. Maybe, in some ways, I even thought that being charitable would bring about some good karma to me, give me a pass on hardships, and other things in this vein.
Growing up in a church, I’d heard all about giving and was very familiar with lessons from Sunday School about how it’s better to give than to receive, laboring to support the weak, and refreshing others through generosity so that we ourselves may prosper. I’d done some reading about the idea of giving in general and knew that Buddhist principals of generosity, Jewish beliefs about the way of giving, and philanthropic views of Hinduism and other religions as well as various cultures like the Native Americans who believe in the circle of life - all seem to be based on similar ideas, mainly that meritorious effects come from being generous. All in all, from my viewpoint at the time, I generally considered myself to be a person who gave to others in a generous, unselfish manner.
I’m not sure exactly when or where, but somewhere along the line as part of what my family went through with my dad’s illness and subsequent death, I have come to have a different perspective about having a charitable spirit.
I no longer think it’s right just to use The Golden Rule (interestingly also sometimes referred to as “the rule of reciprocity”), to do unto others as you would have them do onto you, as a guide. From my perspective, people should show kindness and generosity to other living beings just because we can, and that’s what we should be teaching younger generations. Not because we want others to help us when we are in need, not because we think that will be our ticket into heaven, not to make someone proud or to impress somebody, and not because doing something for someone else may get us a mention in the newspaper or even as having been "a good person” in our obituaries.
Our spectrum of motivation should not be linked to a reward for doing what we know should be done, nor should it be done to avoid a consequence for not. Self-interest should in no way enter the equation, only the interests of others and of humanity in general.Regard for others is ingrained in the majority of us (or it should be), and thus benevolence should also be part of our nature and should not require a burden of guilt, a threat of exile, or a reward of attention, power, popularity, or anything else.There should be no cost-benefit analysis in doing what we know is right.In short, we should help others because we can, not because we feel we should.
A few years ago, before my dad got sick, I had a friend who became very sick. Those of us who knew her felt terrible about what she was going through, and we desperately wanted to be able to do something to help her as she struggled through treatment and relapse. The woman was very humble and really did not like attention, and she said it embarrassed her when other people gave her things or did things for her. Each time I saw her, she thanked me profusely for whatever relatively small thing I had done for her or her family last, and many times she blushed and stammered around in an effort to convey her appreciation. In turn, when she would do this, it would make me feel uncomfortable, and I often left feeling guilty and sad that she felt that she had to shower me with thanks. It felt as if I had burdened her instead of giving her a gift. No matter how hard I tried to stop her from lavishing me with praise and gratitude, she insisted on carrying on, and a couple of times she even said that she didn’t feel worthy of the support being given to her and her family. It became kind of a struggle between us over time, which was obviously not at all the way I intended for our interaction to be. Unfortunately, her health continued to decline, and the last conversation I had with her before she went to the hospital for the last time was a back-and-forth exchange just like the ones we’d been having the whole time she was sick. We didn’t express our feelings for one another or talk about anything meaningful because we were too busy thanking each other, and I think the talk left each of us feeling as if we weren’t really able to get our point across to the other one. Here's what I learned from that experience, though: For someone to feel the gift of giving, one must be willing to receive. And that lesson has fed into my thinking on the whole subject as my personal experience has broadened over the past couple of years.
As I’ve mentioned before, there was much kindness poured onto my dad and my family while he was sick, not just in actions and in materials goods but in messages and thoughts. Throughout my life, I’ve heard much talk about the kindness of close friends and sometimes (I suppose because it’s even more surprising to us when it happens) even about the kindness of strangers. But what about the kindness of those people who exist in between? Those people who we know and see, but not very well or very often. What about these people we call acquaintances?To me, during my dad’s illness and after his death, those are the interactions that surprised and affected me the most because it was obvious to me that those people didn’t help because they felt they should or because of what they were likely to be rewarded for doing but because they could.
Here’s something else that I realized when my dad was sick: to be able to do for others is a true blessing. One who does so out of inner joy instead of outward compulsion or obligation is truly blessed. If I give to someone else for any reason other than simply for the sake of being able to be generous, I am worse off than the person in need, by my own choice. If I choose to take joy in the tasks I am fortunate enough to be able to do and to embrace the opportunity with devotion and gratitude, it is I who is being served and who is receiving a gift.
This new perspective, one that has come partially from being on the receiving end of generosity and partly from looking at things in a different way, as I have done since my dad’s passing, doesn’t necessarily make me want to be more philanthropic than I was before, because I think I was already charitable whenever I could be.However, it makes me look at the opportunities that I have in my life to give to others as a blessing, and, perhaps more importantly, it has helped me to find the words to explain to people whom I have been fortunate enough to be in a position to help in a way that works better to facilitate their understanding of the exchange that goes on between us;it is I that owe them the gratitude for allowing me to help, not the reverse, and denying me the opportunity to do so denies me the chance to receive the blessing of giving.And I know without a doubt that the benefit of the philanthropy is much more to the giver than to the receiver, thus placing the receiver in the position of being a giver himself.It has become clear to me that I am receiving a gift whenever I am in a position to support another living being, and I am completely clear on why I am providing that help and on why I am so grateful to have to chance to do it: because I can.
One person can make a difference, and every person should try. ~John F. Kennedy