Saturday, September 17, 2011

On Guard!

 One thing that I’ve learned since Dad went on ahead is that there are lots of similarities across the board in people who are grieving.  And, although every person, every family, and every situation is unique, every death is a personal catastrophe for those who loved the one who died.  Every person who dies leaves a gaping hole in the lives of those left behind.  And, though we all deal with things in different ways, there are some patterns, emotions, and reactions that are commonly seen when a loss has been experienced.

I’ve read a lot about these similarities, part of my quest for information about grief, a.k.a. “Is this normal or am I losing my mind?” (I still haven’t figured out why there isn’t a “What to Expect” book for grief like there is for pregnancy and childhood!)  I’ve learned that grief can result in physical pain as well as emotional, that it can affect appetite and sleep patterns/energy levels, and that it can interfere with concentration and decision-making abilities. 

But one thing I haven’t heard much about in relation to grief is something clinically called Nosophobia, an irrational fear of contracting a disease or illness.  I’ve heard of this type of thing being common in medical students and others in this type of training; in fact, sometimes this is referred to as Medical Students’ Disease.  It should also be called Survivors' Disease; it leaves those of us left behind waiting for the other shoe to drop.  To me, it feels like constantly being "On guard," waiting for something to go wrong, feeling a sense of some danger that is lurking just around the corner from wherever I am.

In the case of grief, I think this fear is related to several things – a feeling of vulnerability, having experienced the worst kind of being out-of-control during the illness/death of our loved one, seeing first-hand that tragedy and serious illness can come out of nowhere, and the physical pain and other physical issues that sometimes occur with grief like insomnia and weight loss.  I don’t think it’s irrational.  For me, it’s like a nagging headache or a splinter in my foot that I just can’t quite get rid of, no matter what I do. 

Besides my dad, something else that I have lost this year is a sense of security, my faith that everything will truly be ok, that with love and effort always come good results.  Now I feel like I should be preparing for disaster or devastation, because I know first-hand that it happens.

If a person who does everything right can get so sick so fast, that means anyone can.  That precarious balance of things can be upset and forever altered in the blink of an eye.  If we did everything just right to get Dad better and he didn’t, that means either we didn’t do it right or anything could happen.  If he could be terminally ill without a single sign, anyone could. With that realization, I am fluctuating between thoughts of living a completely reckless, carefree life  (Base jumping, anyone?  Hell YES I will have dessert at every meal every day and hell NO I’m not going to worry about saving a dime, ever!)  and holing up to try to avoid anything bad. 

Although I do know even something as extreme as never leaving my house won’t prevent the worst from happening.  Or even delay it.  It’s like that movie, Final Destination.  We can do whatever the hell we think is right to keep ourselves healthy, but when it’s our time, boom!  And that’s terrifying.  Not why me or why my dad but WHY??   If my dad’s illness and death were part of some Plan, why did that Plan include so much suffering?  Couldn’t he (we) at least have skipped that part?  I’ve heard it said that we are not given more than we are strong enough to handle – does that mean if I were a weaker person, Dad would still be here?  (Please note, this question is rhetorical – this is me grieving OUT LOUD, not asking for input.)

We take so many things for granted -- as we should, to go on with our lives. We don't ever stop to wonder, standing at the kitchen door, if the hug or kiss goodbye, before each of us leave to go about our day, will be the last.  How could we ask such questions and get through the day?  And really, that’s what most of life is – the little things, the moments, the shared tears and laughter, our perspective and appreciation (or lack thereof) that all add up to memories and relationships and impact.

Anyone who has suffered a loss would give almost anything to go back to experience those everyday kinds of things again, before their world and their reality were interrupted by loss and all those feelings that come along with it.  I think about the last time I saw my dad before he was diagnosed, the last email he sent to me, the last text, the last voice mail he left me, the last birthday card he signed.  Obviously I did not know those would be the last of anything at the time.  So how do I keep from tormenting myself by thinking that any of these things from anyone else I know and love will be the last?  I don’t know, but I do know that I have to figure it out, to re-engage, to push forward, to wash the dishes and make the bed, again and again, for as long as I am so lucky to be able to do it.  Because I guess the only guarantee, the only thing that is for sure as far as I can tell, is that choosing to make the best of all we are fortunate enough to have in this moment will make things seem brighter, will enrich our lives and those of others, and will help us to strengthen us, so that we can make it through the hard times when we are called to battle.  The gratitude that we can choose to see in everyday events, routine jobs, and simple moments can transform common days into thanksgivings and ordinary opportunities into blessings, as long as we keep our perspective.

-‎"Enjoy the little things, for one day you may look back and realize they were the big things."
 - Robert Brault

Thursday, September 15, 2011

Just maybe …

Just maybe – whenever there is a rainbow, those who have gone on ahead have had to work together to send to it to us on Earth.  Maybe it’s like getting a petition signed and one angel has to lobby to get support from the others to be sure a certain location is worthy of a rainbow at a certain point in time.

The day after Dad went on ahead, I waited with my siblings and my mom for the rest of our family members to convene at my parents’ house.  It was very cold and cloudy outside that day, which corresponded to our mood.  We stood on the front porch, and, just as our spouses and our children arrived, a beautiful rainbow appeared in the sky. 

I bet Dad had been busy campaigning!

Monday, September 12, 2011

Anger and Planting Flowers

Here’s what I’ve learned about the Anger that is so commonly part of the process of grieving: it’s not always logical and even logic doesn’t make it go away.

Even when part of my brain knows that what the other part is thinking is somewhat Crazy, I can’t help myself from being really pissed off about my dad’s illness and subsequent death.  Some of the Anger is based on confusion and the fact that I know there are no answers to many of the questions we have.  It’s based on the unfairness and the unjustness of what happened to my dad and to my family.  It comes from my devastation at how things went as well as my extreme disappointment in people who did not live up to my expectations, who didn’t help my siblings or my mom, who didn’t show respect or concern for my dad or my family as I felt they should have.  Maybe it’s unreasonable and maybe it’s illogical; I realize that definitely it’s my problem and my issue and my grief and Anger coming into play here. 

In Elisabeth Kubler-Ross’s final book, “On Grief and Grieving,” she says, “Anger surfaces once you are feeling safe enough to know that you will probably survive whatever comes.  At first, the fact that you lived through the loss is surprising to you.  Then more feelings hit, and anger is usually at the front of the line as feelings of sadness, panic, hurt, and loneliness also appear, stronger than ever.”  She talks about how in this stage the grieving person is often angry that he or she couldn’t stop what happened from happening, despite how badly that person wanted to be able to stop it.  She says, “The will to save a life is not the power to stop a death.”  How poignant, and how very true. 

I think a lot about both what is at the root of my anger and what the effects of that anger are.  I’m mad that I have to live in a world where I can’t talk to or see my dad. I’m angry on Dad’s behalf – it’s unfair that he didn't get to retire, to finish the Ironman, to feel proud of how he provided financially for my mom. He was only 67!  I expected to have him for at least another 20 years, and I am sure he expected to be around for at least that long too.

Kubler-Ross says, “Anger is a necessary stage for the healing process.  The more you truly feel it, the more it will begin to dissipate and the more you will heal.”  Well, if that’s true, I ought to be a regular freaking Red Cross Truck.

Some of my fury is directed at people who say they know how I feel (not just how it feels to lose a loved one, but how I in particular am feeling!), at those who committed to helping and didn't, or at those whom I think should have done something but who did not.  I am so very angry at the doctors for not figuring it out and even at those people who are unaffected and seem to be living as if this tragedy didn't occur. 

 On some level, I don't want to let go of the anger because I'm afraid that I will either plunge into depression and not come out or that I will transition through the last two stages of grief and be done with grieving and thus with remembering - and I need to remember, to be sure I keep Dad with me.

From this Anger, I can so easily spiral into thinking about things like What’s the point?  Why bother doing things like going to work each day?  Who cares about saving money?  Why make the bed?  WHY BOTHER PLANTING FLOWERS, if we don’t know what tomorrow will bring?  I know what Dad would say to this:  “Because you don’t know that tomorrow won’t go your way!”  And that’s true, but I’m still so incensed that I can hardly breathe sometimes.

At one point, I said that going through the experience of my dad’s illness and death and the subsequent grief is akin to being burned.  Upon further inspection, though, I’d say it feels much more like a traumatic amputation.  I may adjust to doing things differently.  I may one day be able to function and appear to be doing things just like I used to do them.  But, in reality, I will only be doing those things in an adapted fashion.  I will be forever changed and there will always be a part of me that’s missing. 

I am intolerant of some things and some people now; I just can’t listen to drivel.  If associating with someone brings drama, stress, or turmoil into my life, I cannot be that person’s friend for now.  That sounds so selfish, I know, and I hate to be like that.  But there’s only so much oxygen in this space, and grief and anger take most of it, and the rest goes to just doing what has to be done to get through the day.

I would guess that both surgeons and oncologists usually either get the benefit of deep gratitude or bear the brunt of profound anger in their line of work.  Either they fixed the problem, or they didn’t.  I GET that they can’t cure cancer (yet), but what I can’t seem to get past is the amount of Hope that was dished out by these people, at least for Dad to have gotten some function and quality of life back and for him to have some time (more than the ten weeks he had).  And the lack of follow-through and follow-up.  It seemed like a three-ring circus at certain points when Dad was so sick.  I honestly don’t know how some of the health care workers we dealt with look at themselves in the mirror everyday after what they did or didn’t do in my dad’s care.  A few of them just seemed to be putting their time in, working until the end of their shifts.  Some of the problems might have been due to inexperience with his exact type of cancer or even just plain inexperience, and some might have been from certain medical staff being overwhelmed with the workload, the amount of patients that come through the hospital and the doctor’s office on a daily basis.  BUT THAT IS NO EXCUSE!!

Dad’s anxiety and emotional health was completely skirted over by 99% of those involved in his care, for example.  One of the few really good nurses Dad had on the oncology floor at the hospital told us that she wanted to spend as much time with Dad as she could to learn more about his type of cancer.  She said, “We hardly ever see any GBM’s here, and we need to know what to do when we do see them.”  I admired and appreciated her honesty and directness as well as the extra attention she gave to us during the several shifts she was assigned to our case. 

I have heard that it’s almost universal for anyone who has suffered the loss of a loved one to wonder in retrospect about what else he or she could have done to protect, care for, and/or save that person.  Definitely I think about that on a daily basis, and here is one thing I can think of that I wish I had known to do:  find out the credentials and experience of every health care worker who comes into contact with your loved one.  Especially when his or her type of cancer/diagnosis is relatively rare.  Especially about the surgeons who are going to cut and the others who are going to prescribe and medicate the person who is sick.

Too late, I learned the following: “Of the 5,000 or so neurosurgeons working in the U.S. today, 4,900 concentrate mostly on the spine and deal on average with only five or six brain tumors a year. Of the 100 who routinely work inside the skull, perhaps 50 specialize in blood-vessel repairs rather than tumors. Only the remaining 50 can be considered brain-tumor specialists, averaging 100 surgeries annually.”

This information came from a Time Magazine article written about top neuro-oncologist Dr. Keith Black, who is one of a few neurosurgeons in the country who averages 250 brain tumor operations yearly.  I wish we could have gotten Dad to him.  Of course I don’t know if it would have made any difference at all, but I would have appreciated the option of a second opinion or any options at all. 

Wouldn’t you think a BRAIN SURGEON would be automatically obligated to tell the family of a patient with a brain tumor how much experience he has with such a delicate type of surgery?  Nope.  I’m not saying the surgeon that was assigned to Dad’s case was inexperienced or didn’t do a good job, but I am furious that we weren’t given a choice, or even a choice of having a choice.

We were directly told that the only option was for Dad to have surgery that week to biopsy and resect (try to remove) the tumor.  The neurosurgeon told us that Dad would regain at least some (and hopefully most or all) function after the surgery, but that never happened, and he never bothered to offer an explanation as to why it didn’t.

After the surgery, this neurosurgeon left us waiting for hours for an update after we knew the surgery had ended, and when he did show up to usher us into the Room of Doom, he laid the news on us that, yep, what he had suspected was true, Dad did indeed have the most deadly type of brain cancer and his prognosis was not good at all.  He told us that he had “managed to remove 80% of the tumor" and said the remaining part was “buried too deep in the brain.”  I remember so distinctly how he said “the” brain.  Not “his” or “your husband/dad’s” brain.  How awfully impersonal.  Like he was intentionally trying to stay detached and just couldn’t wait to get Dad the hell off his caseload.

At the time, we thought that 80% sounded pretty darn good – hey, almost all of it!  But, after I learned what I learned, it hit me full force that 80% in most books is a “C,” average, and not very good at all when it comes to the survival rate of aggressive brain cancer.  My dad was an “A” guy – he deserved at least 93% - why didn’t that guy TRY HARDER?  Did he have a freaking GOLF GAME to get to that afternoon?  At the end of his proclamation that terrible day, he offered us the name of a colleague of his, an oncologist whom he said was active in many clinical trials, and then stood there as if he were waiting on us to thank him. 

I loved the oncologist, for awhile.  He seemed aggressive enough, and he seemed to be a good listener.  But he was a very busy guy.  In the last few weeks of Dad’s illness, he couldn’t seem to return a phone call (he just had a nurse do it), and eventually it was evident that he was missing the Big Picture, even though it was like having an elephant in the room.  I had asked him on several occasions during the time Dad was sick if he would bring up the subject of hospice when the time came so that we would know when to say when, and he totally dropped the ball.  Maybe he was in his own type of Denial – he obviously expected Dad to get better with the treatment protocol he was on – but, from my perspective, it was HIS PRIMARY RESPONSIBILITY to provide whatever care Dad needed, and he did not do that.

We had to bring up the subject of Hospice with the oncologist, and, when we did, he said he wasn’t sure it was time and implied that he thought Dad just needed to get stronger and then the radiation could be started.  At the time, though, Dad couldn’t even turn his head in the bed or suck liquids through a straw.  The oncologist went home that night with the topic of hospice hanging in the balance.  When he came back early the next morning, he said he’d been thinking about about Dad all night, that he could see now that it was the right choice, and that Dad could still get better and if he did then we could revoke hospice and move forward with treatment.  The New Year’s weekend was coming up, and, like he did the weekend before for Christmas, the oncologist was going off duty from Friday morning until Monday morning for the holiday.  He solemnly told my mom that he would call the house and talk to her or one of my sisters or me after the weekend to check in and that he hoped so much that the news then would be that Dad had rallied.

All good, except that he never called.  Not that Monday, or the next day when Dad was declining so rapidly that the hospice nurse told us that we needed to get to his bedside and stay there, or the day after when Dad went on ahead.  Naively, I thought that Dad was a special patient to this guy, because Dad was so exceptional to everyone who knew him.  The realization that he wasn’t cuts me so deep and enrages me so completely that it comes close to making me lose faith in mankind all together.   Yeah, I’m pretty angry.

Through all of this Anger, though, this Fury that is thick like smoke, so thick that I can hardly SEE sometimes, I am trying.  I’m trying to remember that Anger is an emotion, one that needs to be expressed, not bottled up, and one that is from the heart and cannot be explained or wiped away with reasoning or will.  I’m trying to remember the generosity of those who did support us and who did care for Dad, like that nurse who helped us through one of the worst nights when Dad was so very sick in the hospital.  I’m trying to remember to feel lucky, and that, like Dad often said, ”It could have been worse!”  I’m trying to honor my dad and my whole family and put one foot in front of the other in spite of the burn of my Anger. I’m trying to be more like Dad, to be kind and forgiving even when someone may not deserve it.  I’m trying to believe that it’s not stupid to plant flowers.

To read the second entry on thoughts and comments on Anger, click here.

Sunday, September 11, 2011


From what I can tell, it seems like there are three main things that scare people about dying:  physical pain in the present (“Will it hurt?”), emotional pain related to the future (“How will my loved ones and I go on without each other?”), and emotional distress/worrying about the past (“Will I be remembered?”). 

I’m not sure about the first two.  We like to believe that we can control most or all of the physical pain with medication and human touch, and most people think that dying brings a sense of relief to the person who goes on ahead so that he or she is not worrying and does not have a sense of time or of separation from those left behind.  Neither of these two things are really something we can know for sure until it is our time to go on ahead.  The last one, though, is something that I think we can consider as we go about our daily lives.

In Irvin Yalom’s book, “Staring at the Sun: Overcoming the Fear of Death,” the author talks about something he calls “Rippling,” the concept that each of us creates - often without our conscious intent or knowledge - concentric circles of influence that may affect others for years, or even generations.  Rippling refers to leaving behind something from your life experience, some trait, some piece of wisdom, guidance, virtue, or comfort that passes on to others, and then has the possibility of then being passed on by those to still others.
This is Paying It Forward in every sense of the words.  It’s an opportunity we all have.  It happens when an act of kindness has been witnessed or received or even just talked about.  It happens when words of wisdom or even just plain old words are heard, considered, and repeated.  These things can alter the thoughts, behaviors, words, and perspectives of others, which can then create a chain effect. 

Kindness is something that binds human beings together, from individuals and communities to generations and civilizations.  It puts the focus on what we as a society think is right and often on what we hope would be done for us should we be in a less fortunate position ourselves.  It benefits the kindness-giver, the kindness-receiver, and those who bear witness to the kindness.  The point of true kindness is just that … to be kind.  It carries on, long afterwards, and its impact, like that of people who regularly practice it, can be far reaching.

For what do most of us want to be remembered after we go on ahead?  Probably not something like being a good employee, or keeping a tidy house, or have a cool car, or wearing fashionable clothes – probably, hopefully, we want to be remembered for our positive actions, particularly those actions that have positively affected other people.  And when that remembering occurs, that’s Rippling.  And that is proof that actions and words live on long after we do, in the way that the words of our parents somehow end up coming out of our own mouths, in the stories told about us by our children to their children, in the things we have done that our loved ones talk about or think about because they think those things were funny/brave/smart, in the perspective of those who have known us and in those who have known those who have known us. 

When my kids were little, someone I knew asked me once what I wanted them to “be” when they grow up.  I’m sure she meant what did I want for them to have for a career and that she expected me to say something like a teacher, a doctor, or an architect.  Or maybe she thought I’d say that I wanted them to be rich and/or famous.  Regardless, though, what I said was this: “I want them to be kind.” 

She thought for a minute and then she said, “Well, be careful with that, because you don’t want them to always put others in front of themselves.  You don’t want them to change who they are to suit others.”

I think she had kindness confused with nicenessKindness is the quality of being friendly, generous, and considerate, and, to her first point, it can include how one treats oneself as well as how one treats others.  Niceness is being pleasant, agreeable, and satisfactory.   I don’t think it’s always the right choice to be nice, but I do think it’s always best to be kind, to ourselves and to others.  In extreme cases, kindness may mean just considering someone else’s perspective, background, or circumstances; it may mean being a little less harsh in our opinions or a little more cautious in jumping to conclusions.  It may simply mean opening ourselves up to the possibility of having our perspective changed by thinking about someone else’s situation.  That can’t be wrong.  It allows us to take what we know, what we believe, and the experiences of all that has impacted us in our lives and use it as a kind of Kaleidoscope or Viewfinder, something we look through to compose, and in many cases to focus, on the Big Picture. 

We are altered by those we love and those who love us.  We have been changed by many people whom we know and whom we have known.  In fact, we have been impacted in some way by everyone who has crossed our paths.  And crossing paths with us in turn affects others; it is our form of Immortality.  Our choices determine whether that impact is for the better or for the worse, and that is something that we can work on every day of our lives, something we can control in this out-of-control world.

Rippling is not a theory; each person undoubtedly lives on in the effects of our actions, words, thoughts, and perspective, in the memories of others and even in cases when our impact isn’t linked to a memory but to the Ripples we have generated.  Whether we intend to have an effect or not, those Ripples are created, and so the answer to the question we are all likely to ask when our time to go on ahead comes is a resounding YES – we will be remembered. We will have left a mark.  There will be a Rippling as a result of our having been here.  Each of us will have an impact of some sort.  We can do what we think is right, we can practice kindness or whatever else we choose to do, and then we can hope that what we leave behind is for the good and trust that it will then be passed on to others and then others. 

"Be kind whenever possible - and it's always possible." ~Dalai Lama