I Think The Myth Is A Myth

I spent a lot of time on the road during the ten weeks that my dad was sick, driving between my house and my parents' house and between my house and the hospital or the rehab center.  During much of the time, I listened to talk shows on radio stations like "NYU Docs."  Early one morning when I was on my way back home after having spent the night with my dad in the rehab center, I happened upon a talk show on the topic of the emotional aspects associated with aging.  The conversation broached the subject of terminal illness, and, before I really realized what I was doing, I had called in to the show and was on the air.  

"Stephanie from Tennessee is interested in finding out how to help her father who has recently been diagnosed with brain cancer," the host said as a way of introduction, and somehow I found myself on the air telling the short version of my dad's illness and asking for advice on how to address the emotional issues that were coming along with the changes and the challenges he was experiencing.  Right away, the host started talking about how we should be helping my dad to identify the legacy that he would be leaving behind.  As I listened to her talk, I felt a burning sensation in my gut for which I could not immediately identify the source; as the host made a few more statements and then closed the conversation, though, it hit me: she thought I was asking how to help him cope with his impending death.  I wanted to call back to tell her that my question was aimed at helping him have the best life he could, not the best death, but at that point I was crying so hard I knew my words would not be able to be understood.  I wasn't nearly ready to go to the depths of that subject yet, not for even a second, not on any level.  

Several days later I thought back to the words of the radio show host and thought that maybe I should remind my dad about some of the important things that he had done in his life so far - and also talk to him about his goals for the future related to accomplishment.  We'd had lots of conversations since he'd gotten sick about things he wanted to do (his Revised Bucket List), but maybe it was a good idea to broach the subject of what he felt he needed to get done, in whatever time he had left.

Looking back, that seems kind of ridiculous; knowing my dad as I did, I should have known that he would see that type of thinking as way too philosophical.  He was much more of the "just do it" mentality than the "talk about it/plan it out" type.  And he would probably never have been done; he would never have allowed himself to run out of items on his "to-do" list.  I can not at all picture him kicked back, thinking, "Well, I've done all that needs to be done in life; I'm just going to relax and do nothing for the rest of the time I have."  There would always have been one more challenge that he would have assigned to himself; that's just who he was.

The thing that made me remember back to that radio show and the conversations and thoughts that followed was an article that I read this week called The Myth of Finding Your Purpose.  I was expecting the article, written by a woman who had gone through cancer treatment, to be thought-provoking, and it was - just not in the way that I expected.

"Your purpose has nothing to do with what you do," the author says, and she goes on to explain that she thinks one's life purpose "is about discovering and nurturing who you truly are, to know and to love yourself at the deepest level and to guide yourself back home when you lose your way."  Reading these words, I feel that same burning sensation in my gut that I felt from the response of the talk show host on my interstate drive that day nearly three years ago. This time I can identify the source of that burning easily, though: it's anger, annoyance, and aggravation.  It's a fervent desire to dispute what she is saying, because I feel to the depth of my being that she is wrong.  She is wrong.

The purpose of life is connection; it's doing good, in whatever way and on whatever level works for each person.  It's erring on the side of kindness; it's experiencing gratitude; and it's doing what we can to leave the world a little better place when it's our time to go on ahead.  

The point she makes about the danger of only being able to feel worthy based on the feedback from others isn't new: that's called codependence.  Reading back through her article makes me want to get out my red pen and write in my own comments and corrections: for example, when she says, "When our purpose is external, we may never find it. If we tie our purpose or meaning to our vocation, goal or an activity, we're more than likely setting ourselves up for suffering down the line," I want to draw a little caret symbol in between the words "is" and "external" in the first sentence and insert the word "only," and I want to do the same thing in between the words "tie" and "our" in the second sentence and insert the words "all of."  While I'm at it, I'd like to do the same thing just before the word "goal" and squeeze in the words "or to the achievement of a specific" so that the declaration becomes "When our purpose is [only] external, we may never find it. If we tie [all of] our purpose or meaning to our vocation, [or to the achievement of a specific] goal or an activity, we're more than likely setting ourselves up for suffering down the line."  My point is this: despite the fact that people are going to disappoint us, that there will be times when we will feel that our efforts have gone unrecognized, and that sometimes we won't be able to do what we set out to do, in my opinion we need to do our best to, well, do our best to leave a positive mark - yes, an external one, because when we're gone, that's all that will be left of us.

Reading the rest of the article really only exasperates me even more.  To me, the platitudinal (not sure that's a real word, but if not it should be) bullet points about mindfulness of one's self, releasing all shame, and elevating one's own energy sound empty, or made-up, or both.  "To remember your holiness and treat yourself accordingly ... "  REALLY??  If I were buying what she's selling, I'd spend the rest of my days sipping a cold drink on a sunny beach and nothing more.  I'd be full of inter-connectness with myself, all right, but that's about it.

And to her last point: "What if your purpose is to bear witness to your suffering?"  As my dad would sometimes say in a Scooby Do voice, "HUH??" 

CLICK HERE FOR THE SOUND EFFECT I'M TALKING ABOUT!

Unlike the author of this article, I don't think that suffering is "essential;" I think it's most likely unavoidable, but those things aren't the same.  As I've said before, my family didn't need my dad to have to suffer in order to appreciate our lives or to love each other fiercely; we already had that going.  I'm not disputing her point that a person who feels fulfilled and loved is much more likely to be in a position to give back to others, but I just can't agree that a person's purpose is "about finding and nurturing yourself ... not an external ... accomplishment ... even if that ... is the most important discovery of all time."  I don't like the way she refers to some of the people she's met ("brilliant and effective activists," at that) as "messes;" my god, aren't we all in some way or another??  

As anyone who has read pretty much any of this blog or talked to me for any amount of time about perspective probably knows, I don't dispute the fact that inner peace is an important goal, one that can often be reached through having a certain perspective and by making choices about how our circumstances are viewed; I just don't think it's the most important goal in life, and I certainly don't think it's my only true life purpose.

For more food for thought, here's a video of a presentation by a speaker I think is very insightful and interesting:

Dr. Brené Brown at TEDxHouston

Bittersweet

Following is a guest post written by my sister Nancy:

Bittersweet...

I've often heard that word but have never felt that I had an appropriate time in my life to use it, until 6 weeks ago. 

Giving birth on March 24, 2013, to my firstborn was hands down both the most amazing and the scariest thing I have ever experienced.  I had envisioned the moment of his birth in my head many times over the previous 9 months and it always played out perfectly, except for one crucial part ... my dad wasn't present.

The day I found out I was pregnant, even with as much excitement as I felt, I remember thinking to myself, "This sucks - it's so unfair that my dad won't be here or ever know his 7th grandchild."  I tried not to let myself dwell too much on that fact over the months ahead, but always in the back of my thoughts I felt very bitter.

On the day of my son's birth, I tried to keep it together so as not to make the special day sad, even though Dad wasn't there, but to make sure it was memorable.  I grasped tightly to one of my dad's handkerchiefs (or "hankies," as he called them) during my entire labor process.  I kept hearing my oldest sister saying to me "Remember this, remember this!" and I wanted to focus on especially that.  My whole life I strived to make my dad proud of me and he always told me that he was, and I know without a doubt that he was with all of us in that delivery room that day at the exact moment of my child's birth and that he was so proud of me, my mom, and my sisters knowing that life really does go on - just not always the way we envisioned that it would.  There was complete joy and happiness, and there were big smiles again in our lives and yet another legacy to carry on the family name. 

The nurses allowed Nancy to wear her Brain Cancer Awareness bracelet during the entire labor and delivery process.

I look forward to having Crosby's aunts, uncles, cousins, and Gran-Gran telling detailed stories in honor of his Gramps so that my son will know my dad.  I've decided that I'm not going to waste precious time being mad or even bitter that Dad wasn't physically there for that big moment in my life; instead I will embrace the fact of all the people I love most on this earth were by my side. 

Bittersweet...

Happiness and Perspective

I heard a line from the AMC TV show "Mad Men" quoted the other day on the radio.  The commentators were discussing the topic of materialism and how they feel it has affected our children's generation as a whole.  On the TV show, which is about an advertising agency in NYC, the agency's Creative Director Don Draper is disturbed by his observations of the actions of people whom he feels were motivated by their greed for money and success.  Don starts to reconsider his own definition of happiness and in the process comes up with the line from the episode that was being quoted on the radio:  

"What is happiness? It's a moment before you need more happiness."

lippsisters.com

That quote got me started thinking about the way so many of us set up happiness to be something that isn't really obtainable - or at least that isn't sustainable.  Maybe that's what makes some people feel like rats running on a wheel, as if they are "caught up in the Rat Race," always chasing after one more thing instead of taking the time to appreciate what is already in their possession or what has already been achieved.  

Something I've learned over the last couple of years is that happiness is a feeling that is often easy to attain in the moment but difficult to maintain over time.  Happy moments can be both big and small; happiness can come when its arrival has been anticipated, or it can come by unexpectedly, as a welcome surprise.  For most people, happiness is transient; it ebbs and flows depending on so many other factors.  The way one feels going into a situation or even at the start of the day does not necessarily determine the way one feels at the end; in the same way that you can start off on a run feeling great and end up limping home, you can wake up happy and end the day feeling miserable.  Happiness is unpredictable and oftentimes completely out of our control, which is exactly what makes it a defective goal.  In many cases, it's nothing more than perspective.  

It also strikes me that happiness isn't something that translates into goodness; a bank robber or even a serial killer can feel happy with what they have done.  A life can be full of happy moments but be lacking in meaning and impact, yet another reason that in my opinion happiness isn't a suitable goal.

Another lesson that I have gotten from life over the past couple of years is that during those times when happiness is in my grasp, when I am fortunate enough to be in the midst of joy, pleasure, or contentment, I need to breathe it in, to savor it and to remember it, because life is nothing if not uncertain, and we need all the reserves we can get.  

Happiness

Sometimes happiness is really just as simple as making a choice to appreciate and be grateful for what one has, instead of thinking about would have/could have/should have been, instead of worrying, instead of comparing what one has to what someone else has, and instead of wishing for something more or something different.  To me, it seems that happiness comes much more from perspective than from reality.

"Happiness is in the heart, not in the circumstances." ~Anonymous

One of the things that has brought me the most meaning in my life has been motherhood.  It has also brought me considerable happiness, even though not every moment of every day is filled with sunshine and singing.  In the words of an extended family member of mine, "Mothering is the hardest and the best thing that you will ever do."  I'm sure this extends to fathering, too.  Parenting is difficult, but it's an investment, a legacy that will continue far longer than the days we have left on this earth.


When I think back on some of the biggest moments of my life - graduations, weddings, vacations, things like that - so much of what happened then is a blur, and I don't think that the only thing that plays a factor in that is my increasing age and decreasing capacity for remembering things.  I wonder if I was present enough in those moments; I wonder if I took the time during those events to breathe in the happiness and the joy that I was experiencing.  If I did, maybe I should have done even more of that, enough to make more of what I felt in those moments carry over to my memory. If I didn't, I am regretful that I might have been thinking more about things that I perceived as being not just right, or about things that were bothering me or stressing me out in the moment, or about what came before or what was to come afterwards.  In either case, one thing I have learned is that sometimes all I can do is try to learn from the past - and try to do better in the future.

I thought about happiness and memories and perspective a lot during my sister Nancy's labor and delivery a couple of weeks ago.  "Remember this," I said to her several times during those hours before and just after she became a mother: "Remember this; be sure to remember this."  I hope she remembers it all -  and I know I will, because it was nothing short of wondrous.   As the newest member of our family was born, everyone in the room knew what happiness was: it's being together with the people you love, it's the warmth that comes from working together for a common goal, it's the promise of good.

"Remember this."//

As Lao Tzu said, "Be content with what you have; rejoice in the way things are.  When you realize there is nothing lacking, the whole world belongs to you."

Exercises in Perspective

I talk a lot about perspective, but I think about it even more often.  It's one of the few things that keeps me from coming apart at the seams during the Mad Tea Party of life.  

I like to read about things that give me perspective and about the impact that different people and experiences have had on others.  One thing I have realized in thinking about the legacy that my dad left behind is that little things can make a big difference - little things we say, little things we do, and even little things we think.  Each of these can serve to shape each of us into a person with a bigger heart, a better outlook, and a broader perspective.  As Mother Teresa once said, "None of us, including me, ever do great things.  But we can all do small things, with great love, and together we can do something wonderful."

In keeping with that theme, I have decided to compile of list of things that can bring perspective and post those ideas periodically as challenges to myself and to others.  Some will be fun, some will be thought-provoking, some will be service oriented or otherwise actionable.  All will be targeted at contributing to the perspective of anyone who participates.

Here's the first one:

Let someone know the impact he or she has had on your life.

This idea came to me from a message that I got from a person who knew my dad many years ago.  The person had heard that my dad was sick but didn't know that he had died. In reading some of the entries in this blog, he recognized himself as one of the guys in the story that I told here:

The Spirit - Not The Spirit of Competition

When he read that story, he said, "I tell the story of that race in Mississippi all the time to people. I learned a life lesson that day. A great story was told through his life. I can recall all those runs and races and his smile that seemed too broad for his little body."

When I told him that Dad had gone on ahead, he expressed sadness and regret that he had not been able to tell my dad how he had been impacted by him.  He said, "I wanted to tell him how his life story connected to mine. He was largely responsible for my love of running and in many ways responsible for my future."

Thinking about his words and the words he said he wished he had told my dad made he think about the fact that there are many people in my life to whom I haven't reached out in some way over the years to let them know how they influenced me. 

What he said made me realize that end-of-life regrets are not only for people who are nearing the end but also for those left behind who haven't delivered a message that we wish we had.  

In doing this first Exercise in Perspective, you may choose to communicate with a person from your past or from your present, someone younger or older, someone who served as a mentor or a teacher to you or just a person who caused you to think or act differently than you might have otherwise.  Your message can be delivered in writing or verbally, and it can even be as basic as something like, "Thank you; knowing you has helped make me the person I am today."  The only criterion to this challenge is that you reach out to a person who has left a mark on you in some way, and the point is this: don't wait.  Do it now; the person to whom you deliver your message will be glad, and so will you.

Open to Hope

Last fall, a blog entry that I wrote got published on a website called Open to Hope.

Click HERE to read the article.

A couple of days ago, I received an email from someone who had read the entry and had left the following comment:

I was so touched by your article and the statements from the other readers.  I am writing because my husband has a brain tumor, glioblastoma, perhaps what your father had.  This is heartbreaking for our twins age 19, away at college, and I am wondering if there are some things we should be doing now to prepare us for the special occasions, holidays and even just the really sad times when he is no longer here.  He is still fairly lucid and would be willing to do something to make it less painful for all of us but I would need to help him as his vision is very poor and he can no longer write legibly or use the computer.  We have come up with some gifts to give the kids from him when they graduate from college, get married have children etc, but there are so many other times in between the highlights of their life when they will miss them.  We had him with us this Xmas but it is unlikely he will be here for the next one.  We still have some time and I don't want to regret missing opportunities while we still have him with us. If you have any suggestions I would really appreciate it.  Thank you.

Wow, that's a tough situation and a difficult question to answer.  Knowing what a tough experience her family is having to go through is heartbreaking; it brings back so many memories and brings forth so many emotions from my own family's experience.  I want to help, but I'm far from an expert on the subject of coping; all I can do is to offer suggestions based on my personal experience and my perspective at this point on the timeline.  

I will tell her that my dad did have the same kind of brain cancer, glioblastoma, or "GBM" for short, an awful combination of three letters that brings devastation to people in a matter of seconds.  I will say that what I've figured out since my dad's death is that it is possible to pull out the silver linings of a terminal diagnosis; in no way does doing so diminish the pain and the hardship of going through it, but it does allow for opportunities to do some things that are very valuable, things like making memories, even just in the midst of everyday things, so that you can hold onto those (hoarding memories, as I have called it), things like helping the person who is sick tie up loose ends, and things like saying things such as I love you and I am a better person for having known you and thank you - and, eventually, goodbye.

A few books that may be of use in such a situation are Dying Well by Ira Byock, Final Gifts by Maggie Callanan and Patricia Kelley, and On Death and Dying by Elisabeth Kubler Ross.  I wish I'd read them in time to help my dad; written from a perspective of those who have done hospice work for decades, these books are full of information about what often happens when a terminal diagnosis is handed down.  

Something that I was surprised to learn after my dad's death is that there is a natural process that occurs as an individual nears death, and, while each person is unique, the dying process is nearly universal.  Many people find it helpful to know what to expect during a typical dying process. She can tell her husband that she is willing to discuss any concerns he may have or that, if he would rather have those conversations with someone else, she will find a person for him to talk to.  My dad asked me what I thought it was like to die, and, when I answered him, I tried to focus my answer on what I thought his main fears about the process were, which, for him, were related to pain and worries he had about leaving my mother and my siblings and me behind.  I don't know if what I said was right or not; I just knew that his distress needed to be addressed.  I can't imagine how scary it must be to have all those fears about dying and, even more so, to feel like you might inflict even more distress on your loved ones by voicing those fears.

But more than how to handle the logistics of her situation and the anticipatory grief and the emotions that come along with it in such a situation, this person is really asking two things: first, how can she help her husband emotionally as he prepares to leave this world, and, second, how can she help her children and herself, especially with regards to after he is gone?

First, let me say that, while the diagnosis of both her husband and my dad were the same, my family's situation was different from what it sounds like hers is.  My dad was "lucid," in that he could speak clearly and could understand the words that were being said to him, but he had fairly severe problems with his short-term memory and his attention span.  He was told by doctors that the prognosis was two years at best, but he was also told by them (and by us) that it wasn't unreasonable to believe that he could beat those odds, at least to buy more time.  There was a lot of denial by all of us, I think by the medical team too, about the fact that his time might actually be as limited as that general 1-2 year time frame, so much so that, coupled with the frantic pattern of caring for him 24 hours a day and the decline that happened so much faster than anyone would have ever believed, we didn't think much about those two questions while he was sick.  I wish we had; I wish we had had the time to figure some of that out.  All that to say, though, that what I have to offer in terms of ideas to address her concerns is from my hindsight type of perspective, not from what we actually did.  What we did do related to those two areas happened quite by accident.

I think it would be a good idea for her to talk to her husband about what his goals are from this point forward.  Like I've said in telling the story about my dad's illness, though, that Bucket List type of discussion is probably going be vastly different than it would be for a healthy person; the best you can do in such a situation is to come up with a Modified Bucket List to work towards.  Like my dad did, her husband is probably having to deal with medication schedules, doctor's appointments, and possibly some treatment plans.  Hopefully, though, unlike my dad, he has had less of a change in his physical abilities and his cognitive abilities, which may allow him to do some things like travel or even just socialize with friends and family without it being a major source of stress or a logistical impossibilty. Each person's goals are likely to be different, but clarifying them and putting them into some sort of order by priority and feasibility are important in any case.

There’s such a feeling of urgency when we are aware that time is short, and it can be overwhelming and stressful for a caregiver to feel like you need to fulfill every desire and help your loved one cross off everything on his to-do list in that limited time.  It's natural to want to make every day into a special event, but, as I have learned, very often the wishes of those who are very ill are much more simple than big vacations and major events.  I've heard of people hoping to be able to go to a family reunion, or to go camping, or to go horseback riding, or, like my dad, to go to a beach or even just to see a movie.  Sometimes even things like that require planning, and sometimes family members have to ask for help from others to make these things happen, but thinking in terms of lower key type of arrangements can give everyone something to look forward to and can serve as an opportunity for memories to be created.

That said, though, so many special memories can be created in everyday moments that sometimes it isn't necessary to plan something like a trip or a Bucket List type of adventure.  I have found that I am comforted by thinking back on the times my dad and I just sat around talking about the past or current events or funny things during the time he was sick; sometimes it's ok just to sit in silence and hold the person's hand too.  The everyday moments can be just as important as the big-deal moments; many times, just being present with the person who is sick can be comforting and meaningful for both of you.

In my dad's case, when he first got sick, we tried to view a day as A GOOD DAY as one during which he was able to do at least one thing he NEEDED to do and one thing he WANTED to do; later, when he was even sicker, in some ways I think we struggled to consider a day as a good day when he didn't have an overwhelming amount of pain (mostly headaches) and/or anxiety.  As we learned in a crash course, it's all about perspective.

People often seem to think that talking to someone with a catastrophic illness about their diagnosis or their impending death will upset that person more; however, from what I've been told and from what I've read, the opposite is actually true.  In fact, sometimes the person who is sick may be hesitant to bring up difficult topics like those with their family members for fear of upsetting their loved ones more.  But there are bound to be questions, and thoughts, and emotions that need to be shared, and sometimes a certain degree of peace can come from talking about those hard things or to admitting one's feelings about what is going on and what's going to happen.  The books I mentioned address how to broach those tough subjects in the most compassionate ways.  

In his book The Four Things That Matter Most, Dr. Ira Byock discusses what most people define as being the most important things to say before they die: "Thank you," "I forgive you," "Will you forgive me?" and "I love you." Two of the four phrases are about forgiveness, emphasizing how important it is to offer and receive it before we die.

I have heard that men and women have different types of end of life concerns.  Men seem to focus on finances ("Have I provided for my family adequately?") and things that are physically left undone at work and/or at home.  This was certainly true for my dad, and it caused him a lot of anxiety during the time that he was sick that only got worse as his condition did the same.  Women, on the other hand, seem to tend to worry about the emotions of their loved ones and the logistics of things, especially those things that they have taken care of for their loved ones, like gift giving and planning events.  I wish we had been able to address my dad's concerns directly in such a way that he could have understood and been comforted by that information, and I hope that is something that this woman is able to accomplish in her situation.

I love the idea of helping the person who is sick to buy gifts for people to be given at certain points in the future when he is not likely to be around.  I think that is likely to be therapeutic for both the giver and the receiver, and it's a very touching gesture that will comfort those left behind.

I also think she should have conversations with her husband about his goals for his legacy.  I think most people want to leave some sort of legacy in life; we all want to be remembered because being remembered means that our lives had meaning and significance to someone other than ourselves.  Maybe it's something he accomplished professionally, maybe it's something he did that will continue to impact people long after he's gone, maybe it's a character trait that he has that others can try to emulate, or maybe it's something else that he will be remembered for.  She should talk to him about how his legacy will be carried on in the future, even by people he doesn't know who have come into contact with the people who have known him (the "rippling" concept).  I suggest that she ask others in his life to tell stories about things they enjoyed doing with him, things they admire about him, things they will remember, and/or how he has affected them; as we found out after my dad died from comments made by many people who had known him, sometimes one's legacy is different than they or people who knew them in a different context may think.

I've heard that many people who are at the end of their lives tend to want to talk about their regrets, accomplishments, hopes, and dreams.  Doing a life review is a way to bring closure to the person who is ill, and it can also serve as a legacy of life to the person's loved ones.  There are several ways this can be recorded for posterity: 

*A MEMORY BOOK can be created in one or more different formats.  A simple photo album or a more modern version created online through Shutterfly or a similar website can be a wonderful memento.  A scrapbook can be made by using photos and other items like ticket stubs, menus from special dinners, or personal notes.  A book of memories can be completed by filling in information in a published book like THIS ONE or just by jotting down or dictating memories, thoughts, and ideas in a notebook a little bit at a time. 

*AUDIO TAPES can be a wonderful thing to leave to loved ones and may be able to be produced more easily and more privately than dictating for someone else to write down messages.  Loved ones often miss hearing the voices of their departed friends and family members.  By recording tapes for those they leave behind, terminally ill patients can know that whenever their survivors are missing them, they can simply pop in a tape and hear their voices.  I've heard of people who have recorded themselves reading favourite bedtime stories, singing lullabies, or simply talking for their children or grandchildren (or future grandchildren) to listen to later.  Tapes can be made for friends and family members, individualizing the messages for each recipient.  One thing I will say is that even though we didn't record my dad while he was sick, we have some recordings of his voice from before he got sick that are absolutely priceless to us.  

*VIDEOTAPES may be the ultimate way for the terminally ill to leave their loved ones with little pieces of themselves. Similar to the process for creating audio tapes, a video camera can be set up and turned on for the person who is ill and then the person can be given an opportunity to have his message delivered in private.  Again, different videos can be produced for each loved one, with the emphasis being on making them as personal as possible.  Parents who know that they will miss important milestones in their children’s lives can prepare videos offering the advice they had hoped to deliver in person. For example, a dying parent may prepare videos of themselves talking to their children about the importance education, being true to yourself, finding lasting love, or prioritizing the important things in life. More than anything, these videos should be used for the terminally ill to express themselves and the feelings that they have for those they will be leaving behind.  

*WRITTEN LETTERS (or those that have been dictated and then written on the person's behalf) can be used to offer kind words, to share advice, to provide encouragement, or simply to declare one's love for another person. Such letters are sure to be treasured and kept as special remembrances of a life that ended too soon.

It has been said that as long as one person holds memories of someone, they are not really gone. Losing a close friend or family member is one of life’s difficult realities, but most people keep their departed loved ones forever near by thinking back over the times that they shared. Creating tangible memorabilia can reinforce those memories, helping survivors to keep loved ones a part of their lives.

One more thing I'll share is a link to a website that has great info about how to cope with end-of-life issues for people with brain tumors:  BRAIN TUMOR HOSPICE.

In closing, I will say to the woman that, when faced with the most difficult situation that she has probably ever faced, all she can do is to try her best.  Accept help from others; ask for help when needed.  Keep a Notebook of thoughts, questions, appointments, inspirational quotes, anything that might be something she needs quick access to and/or that might be good to remember in the future.  Take photos of your husband along the way, with other people and by himself, maybe even of things like his hands or him facing away from the camera, to create memories in a visual format.  Make an effort to take note of everyday joys, don't be afraid to just sit silently and enjoy each other's presence, and cut yourself some slack and take a break on a regular basis.   

I am going to wait a couple of days before responding directly to her message, and I'd love to get feedback from others who have opinions about the subject of what else she may want to consider doing.  Please comment below if you have any ideas on anything else I should add!!

New Orleans On The Mind

My dad loved New Orleans.  He thoroughly enjoyed the food, appreciated the people, delighted in the music, and, of course, he LOVED the Street Beer!

 

Dad, making a presentation to some of his clients at a meeting

When people asked Dad what he did for a living, he said that he was “in the grain business."  During his career, he managed several grain elevators, supervised the opening of a rice processing plant, and, in 1993, joined an agricultural marketing consulting firm as a principal commodities broker.

Not long after he graduated from college and got his first job in the field, he joined the Mid-South Grain Association, a trade organization for people in the ag-marketing business.

During the course of his career in the grain business, the Mid-South Grain Association was a constant for Dad.  He served as president of the organization for several years and was secretary-treasurer for the past 18 years. He was always so appreciative of the numerous friendships he developed through the group and enjoyed organizing their semi-annual conventions, one of which was always held in February in New Orleans.

My sisters and I and our spouses tagged along several times when my parents went to the convention in New Orleans, always a fun time for all of us and a good opportunity for us to see Dad “in action” with so many people he had known professionally and personally for years and in some cases for decades.

When Dad got sick in late October, he had just begun planning for the convention the following February.  He still had to line up guest speakers, get people registered, and coordinate with the hotel where the meetings were always held, the Royal Sonesta.  He had quite a long To-do list going, and this became one of the things about which he worried while he was sick.

After Dad was admitted to the hospital, while he was in the Neuro-ICU for several days awaiting surgery, he was on several different medicines, including a massive amount of steroids to address the swelling around the tumor in his brain and a type of pain medication that we later learned resulted more in increased anxiety and talkativeness than it did in pain relief for Dad.

My mom, my sisters, and I took shifts, often in pairs, to be with him 24 hours a day, and, as I’ve mentioned, we took careful notes about everything that went on.  One of the things we wrote down was what he said, especially when it related to things about which he was concerned. 

During those long, scary nights in the ICU, he talked endlessly, often about not feeling well, having a bad headache, and being very tired, all of which made sense given what we knew about what was going on with him medically.

Just a few hours before his surgery, he seemed to finally be getting some rest, but he kept talking in his sleep, saying things like “I’m bored,” “I’ve got to know when I can run again,” and “I don’t know why I have to be here.”  He also said some things that weren’t in context, like “I’m going to the oyster bar,” and “I’m going to eat a dozen.”  In between comments, he kept repeating a number that didn’t make sense to us, and, after hearing him say that same number over and over, I decided to use my cell phone to Google it.  It turned out that the number was the telephone number to the Royal Sonesta Hotel in New Orleans.  Apparently, he had New Orleans on The Mind.

Over the course of the next several weeks, we made lots of notes of things that Dad told us to write to complete the Convention-Planning To-Do List, and then we passed it on to someone else in a leadership position with the organization.  Dad still worried about it frequently, but we tried to reassure him each time he brought it up that it was being taken care of. 

After Dad went on ahead on January 5, Mom was asked to continue taking part in the convention and with the organization, if she felt up to it.  She had worked side-by-side with Dad for all those years in planning for and putting on the convention, and she definitely knew the ropes.  Because Dad was so concerned that the convention go smoothly, Mom felt that carrying on with that task was a good way to honor his wishes and to uphold his legacy in the professional realm.  She did get the job done, coordinating the planning for the event, and, with my husband and me, attending the convention to represent Dad as he would have expected us to do. 

I’m sure that Dad was watching over us during our time in New Orleans and that, although he might have missed being there, he was proud that we honored his commitment and that the show went on.

"If You Think You're Lucky, Then You Are!"

My dad always said, “If you think you’re lucky, then you are!”  He truly believed that happiness and life satisfaction were based on perspective, not situation. 

I think about this on a daily basis and have always tried to emulate this attitude.  Dad wasn’t really what I would call a philosophical kind of person; he was just wise and practical enough to see that it’s easier to get along with a smile on your face than a chip on your shoulder.
 

But since Dad's diagnosis in October, I have learned that the glass isn’t really always half full … I think if I were viewing the glass as "half full" right now, it would only be because I was in full-blown denial of what has transpired.  I'm not a big fan of at leasts - but at least the glass isn't empty, and, with the legacy Dad has left behind, most notably the gift of perspective, I don't think it ever will be. 

I recently saw a story about a man who was fired from his job because his wife had cancer:
Click here for the story on ABC News

As in every controversial situation, I’m sure there is another side to this story, but, any way you slice it, it sucks that this guy is out of a job and his wife has cancer. 

Maybe things will turn around for them, or maybe not.  Either way, though, I know my dad would say that they should look for any at leasts they can find … in other words, as Dad would say, “It COULD be worse!”

Whether one sees the glass as half-full or half-empty, though, at times the contents of the cup are sloshed around so much that it’s tough to function.  

But as we try to remember recognize the at leasts to keep our perspective, we can hope for a better tomorrow, believe that we'll get it, and, in the meantime, be happy for what we are lucky enough to have, because, after all: "If you think you're lucky, then you are!"

                       

What Went Right

After Dad went on ahead, I read some information about the process of dying.  One thing that I read said that most people die, and react to someone else’s death, in ways reflecting their "usual selves."  I think this was so true for Dad – trying to tie up loose ends, making sure everything was taken care of, sticking it out for as long as he possibly could.

It would be so easy now to look back at what wasn’t handled exactly right while he was sick – but, following Dad’s example, I want to look more at what happened that DID go right:

Things he said and did during that time that we will never forget: the opportunity to create and remember more priceless memories with him

Those who went out of their way to help and support us, many of whom were quite unexpected

Time we got to spend with Dad over those ten weeks, individually and as a group

The pictures we had taken together and the memories of those times

Bringing him home from the hospital – as much or more for us than for him

Letting him know that we would be ok and that he had done all of his “jobs” just right

Finding out that there were SO many people, WAY more than we knew about, who loved and respected him and who benefitted so much from having known him

Getting his cat Foster for him – a different goal than the ones that he had had on his Bucket List but one that brought him and the rest of us joy.  “This cat is the second best thing that’s happened to me since I got sick,” he said.  “The first is that my kids and grandkids are coming to visit a lot more often.”

Recognizing that what drew people to him wasn’t that he was FUN but that he was KIND to every person, even those who didn’t really deserve it and whom he would probably never see again.  That is his legacy – demonstrating the impact of kindness and how far-reaching it can be.

Getting to have a spectacular view of Dad through the eyes of so many others, many of whom we didn’t know well or maybe at all.  I always thought he was so popular because he was so much fun, but I know now that it was because he was kind and respectful to everyone who crossed his path.

Allowing time for the kids – and for us – to adjust a little bit to not having him at 100% capacity:  Allowing us to wade into the deep end instead of just being shoved into the water

Coming together as a family.  During those ten weeks, it seemed like we were all working so hard to provide what Dad needed, but, looking back, it seems much more like HE was working so hard to provide what WE needed – time with him for each of us, seeing with certainty that we can count on each other above everyone else, and perspective – cementing what is REALLY important in life.

The celebration of his life – undeniably the best “going on ahead” ceremony ever!

Thanks, Dad, for the time, memories, for your persistence especially in the home stretch, and for giving us perspective.