One More Conversation

I recently read about how sometimes people who are going through the grief process think about what it would be like to have one more conversation with their loved one.

Thinking about that is complex for me, because, as far as I knew, my dad didn't think that he wasn’t going to survive his cancer diagnosis, and so the things that I'm guessing typically come up in those one-more-conversation type of exchanges weren't on the table for us to talk about when he was sick.  We didn't talk about end-of-life kinds of things during the ten weeks we had after his diagnosis; honestly, I don't know that any of us could have withstood that type of emotional wrenching, including my dad.  He knew that we loved him, and we knew that he loved us, and I think we thought there was still time to talk about everything else.

Part of me wonders now if we should have been straight up with him about what was going on medically; after all, he was an adult and maybe it was underestimating him or overprotecting him to keep that information from him.  He knew his diagnosis, but he didn't know the prognosis.  The bottom line, though, is that my family and I did what we truly believed was in Dad's best interests at the time, given what we knew and the resources we had.  We didn't LIE to him, but we did skirt around the truth about his prognosis and the severity of his illness on the few occasions he asked us about it, when he said things like "What if the chemo doesn't work?" and then we said things like, "It will, Dad! We just have to get through it."  He asked one of his doctors a few times about the usual prognosis of someone with his same diagnosis, and they told him the truth, but all of us, Dad included, discounted what they said because Dad wasn't "usual" - he was extraordinary.  Towards the end, he asked me a few questions like, "What's it like to die?" and "Do you think it’s cold in heaven?" (he hated to be cold), and I am so very glad that I answered him truthfully then.  Most of the things I said to him though, when I realized how very limited our time together was going to be were part of a one-sided conversation - when he couldn't talk back, and when I'm wasn't sure he heard me.  Looking back, I think it would have been so hard for us to say goodbye to him and then to have him say it back; the pain and sorrow that I see on his face when I picture this scene in my mind are heartbreaking, sending a stream of tears down my face, and that's when the vision is only in my imagination.  I think Dad might have viewed his own farewell message as quitting, and I am glad he was spared that, at least.  

So when I think about what our conversation would be like had he gotten an extra few minutes tacked on at the end of his life, it’s hard for me to picture anything other that what we did talk about when he was so sick.  Given that, I want to respond to the question of what would I say to him now - not as if he is still alive but as though he and I are able to communicate now, with him being wherever he is in the afterlife and with me being here on earth:

Dad,

There are a few things that I want to be sure you know, and if I can be assured that you realize and understand these things it will help me to better deal with my grief:

I miss you so much, every day.  You had such a big impact on my life and on making me into the person I am today, and the things you taught me and the lessons I learned as a result of having you for a dad are carrying forwards, still affecting me every day.  So much bigger than that, though, was your impact on the hundreds of other people you knew and even on the thousands of other people you came into contact with over the course of your life.  What you left all of us with – and all of the people with whom WE will come into contact with in the time to come – is your perspective, your view on kindness, and your joy and gratitude in all kinds of situations.  Because of you, I know that I am lucky, no matter what is happening around me.  Because of you, I know that I can decide to be happy, if I choose.  And because of you, I know that family comes first but that every person is important and that being kind and giving to others is a privilege, not a duty.   I wish you could realize how many people admired and loved you; I think while you were sick that you might have gotten confused on just how many friends you had because we discouraged people from visiting you then because we were so worried about you catching their germs.  I’m sorry that we didn’t find a way for you to see how cherished you were by so many.  Finally, I want you to know that we will be forever grateful to you for the way you fought so hard to hang in there through so much over those last ten weeks, I want you to understand how we are so appreciative of every bit of light you brought to us over the years, and I want you to know that I will think about you and try to make you proud every single day, for the rest of my life.  

Sliding Doors

I recently had a conversation with a friend of mine about both of our parents' battles with cancer, his mom and my dad.  Both were diagnosed at an age when they appeared to be in the prime of their lives, on the cusp of retirement, in seemingly good health.  My friend's mom was a long-time smoker but at his insistence had quit smoking a few months before she was diagnosed with the lung cancer that took her life a short time later.  As he was talking about her illness, he told me that he will always wonder if by encouraging his mom to quit smoking he had somehow caused her to get cancer.  He said he knew it wasn't really rational to think that but that he couldn't shake the thought that somehow the thing that had changed in her life before the diagnosis was made was not fortuitous, that there was a link.  I think in the greater scheme of things, human beings tend to want to believe that cancer (or anything else) happens for a reason, that where there's an effect, there must be a cause.  That's what our logical minds often tell us, and it's our way of allowing ourselves to feel like we have some sort of control over, well, anything, when in many cases we just don't.  No matter what the case is, no matter what the cause - if any - cancer is always unfair, and that's really the bottom line. 

Hearing my friend say that he felt on some level responsible for his mother's death made me think about the way that in any death, in any circumstance, there is always room to wonder: what could I have done differently, how could the outcome have been avoided, WHERE DID I LOSE CONTROL?

That conversation also started me thinking about the difference between guilt and regret, two emotions that are different from each other yet are often confused, especially when people are grieving.  In my opinion, the term "guilt" is frequently misused; the term actually refers to something that one feels he shouldn't have done because it was wrong.  In many ways, guilt can be a disabling affliction, just like Cancer.  And, also like Cancer, guilt is something that can happen to anyone at any time, no matter the circumstances.

Regret, on the other hand, is what is felt when when something has happened that has resulted in a loss or a missed opportunity, despite the fact that the person had no control over the result.  Regret occurs when there were circumstances beyond one's control; in short, regret can arise when one makes a mistake. The difference is that what was done in the case of regret wasn't wrong, even though what happened as a result was undesired.  

Many times I've heard people say they feel guilty when a loved one gets cancer, even when that loved one becomes a "Survivor."  I've heard people say they feel guilty for not doing more or for not being there for a friend or family member who has Cancer.   What they more likely mean in both cases is that they regret what happened, even though it wasn't an outcome of their actions.  

I know personally how cumbersome it is to harbor feelings of guilt and/or regret; it is, in a word, awful.  But the most awful thing of all is when the person who is sick feels guilty: They may feel guilty that those who are caring for them are missing work and other things, they may worry about the money involved in the treatment of Cancer, they may feel that they are a burden on others.  They may wonder if they did something to have caused the Cancer or if they didn't do what they should have done to prevent it.  One of my friends who battled Cancer years ago once told me that while she was sick she felt guilty for feeling jealous of people she knew who were healthy, and she said that after she was done with treatment she felt guilty for getting better when so many with Cancer don't.   And although "regret" is the better word to use here, we tend to say "guilt" much more often.

Why does that distinction matter?  Maybe because feeling guilty is, in a sense, blaming ourselves for something that was in no way under our control and/or for something that occurred as a result of an innocent action.  If someone is justifiably guilty for something, they should take responsibility for what they did and then make an effort to make amends whenever possible.  Inaccurately labeling regret as guilt can serve as a huge barrier in the grief process; when one feels responsible for a loss when in fact that person had only the best intentions and had no control over what ended up going wrong, it's easy for him or her to get "stuck" because their perception of what happened isn't based in reality.

All of this reminds me of the concept of the movie “Sliding Doors” (If you haven’t seen it I recommend that you do **Caution: not for kids!**), which is that it is possible for even a small decision to forever change the course of a life.  Surely the vast majority of adults have done some things in their past that they wished they’d done differently.  And when someone you love dies of a terminal illness (or maybe when they die from ANYTHING), it doesn't seem like it would be that unusual to feel at least a little bit of regret, and in some cases some guilt may play a role as well.

Looking back to the time when my dad was sick, part of me wonders – and will always wonder – if I did enough.  If I could’ve done more.  If I should’ve played something differently.  And if I had, would it have made a difference?  

Sometimes I think about the Sliding Doors concept, about different ways that things might or might not have been done as we tried to cope with his illness.  I guess technically mixed in with that wondering are some blame and some anger, both of which I feel are completely justifiably directed towards the health care professionals who in my opinion didn't do what they should have done.  (More on that later ... )  But I also find myself thinking about what-ifs from other time periods in my dad's life - both from before he got sick and whenever I imagine how things would be if he were still here, either having been miraculously cured or still fighting.

As I've mentioned, my dad was involved in lots of accidents during his life, most of which occurred out on the road during his physical pursuits.  Although I can't for the life of me figure out why I do this, I sometimes think about how things would have been had he sustained an injury with long-term effects in one of these accidents.  I always thought Dad had somehow ended up with nine lives (Maybe that's why he considered himself a cat person more than a dog person.)  Now I am left to wonder if he did but I somehow lost count along the way.  To some people, I guess it might seem like my family should have discouraged him from doing things like the running and the biking and the adventure races that sometimes resulted in serious injuries for him, but we always protected and defended his right to continue despite the risks because he loved it and, to be really honest, maybe because we caught a little bit of his "I'm too lucky for anything really bad to ever happen" fever along the way.  

When Dad talked about people he knew whom he thought had "gone downhill" over the years, he always said he hoped that didn't happen to him.  In fact, I distinctly remember several times hearing him say that he hoped when his time came that he went out running.  In a way, I guess he got his wish.

Why is it that "If games" are so common with grief: If only _____, things would be different. If I'd encouraged him to go to the doctor.  If we'd found out sooner.  If we'd chosen a different hospital or different doctors.  I guess it's because whenever our minds create these alternative scenarios, we can imagine an alternate reality to the one that we just don’t want to accept. These counterfactuals allow us to hide the truth, to conceal the reality of pain, if only for a little while.  

"I’ll Be in the Boat"

As anyone who ever knew him would attest, my dad was an exceptional athlete.  One of the goals he set for himself several summers was to swim across Lake George in upstate New York, a distance of about 2 miles, a swim that involved identifying a location on the shore across the lake and “siting” on that specific point while also watching out for ski boats, jet skiers, and sail boaters.


Because of the distance of the swim and the other traffic in the fairly rough water, each time Dad and any other family members or friends set out to do this swim, others of us provided a boat escort to keep the swimmers pointed in the right direction and to call the attention of other boaters to them in the water.

Dad loved doing this swim.  He liked the feeling of accomplishment and the bragging rights that came after he did it each time.  The fact that everyone else who ever completed the swim with him was half his age was icing on the cake for him.  

Following is an exchange that occurred during one of the many late night conversations that Dad wanted to have while he was sick as he mulled things over in his head:

“Girls?” Dad called out in the dark of the ICU room to be sure that my sister Jennifer and I, his Night Shift Crew that night, were listening.

“Yeah, Dad?”

“You know how I usually swim across the Lake George with Peter and Lee and Kristen while you are in the boat?”

“Yeah, Dad?”

“I’m pretty sure I may not make it across again, but I’ll be in the boat.”