Changes

Since the moment my dad went on ahead, I've noticed a pattern of paradoxes that has emerged: as he took his last breath, I was simultaneously glad he wasn't suffering anymore but so sad for so many other reasons. I was grateful to have had him in my life for as long as I did, but I felt (and still feel) angry, resentful, and desolate about the fact that I didn't have more time with him.  And after spending time helping to care for him around the clock during the ten weeks he was sick, with his passing I suddenly felt restless and fidgety - but at the same time I felt wearier than I had ever felt in my life, with the dull ache of grief settling into my bones from the first day I had to spend without him.  

Over the course of the past 22 months since my dad died, I've gotten better at some things and worse at others. The dichotomies of these changes in me have been very unexpected, unfamiliar, and sometimes even unexplainable; all of them, however, came as a result of the impact of loss and have caused me to have to reorganize my thinking and my patterns of actions in many ways.

When my dad got sick and throughout the duration of his illness, I felt like I had been forced to take off my rose-colored glasses; from that point on, I couldn't avoid thinking that Karma was essentially bullshit and that there's no such thing as justice.  That was nothing, though, compared to the thoughts that came after his death; at that point, those same glasses were shattered, in pieces, smashed on the ground.  I know now that there's not much - if any - control to be had over bad things happening to anyone, including me, at any time.  I guess I always thought that real insurance (and assurance) came from the kind of cause-and-effect relationship that I believed in before my dad got sick: if you live a good life, both in terms of being kind and giving and in taking good care of yourself, then you will live for a long time.  How can one NOT see the logic behind that?  But, as I came to see, that is absolutely not true.  

The realization of such randomness has effected two contrasting feelings in me - a sense of fearlessness, because, really, carefulness doesn't matter, and also a sense of terror, because, really, carefulness doesn't matter.  I don't know if that even makes sense - but I do know that the fluctuation between those two things can be exhausting and confusing, and I haven't yet been able to figure out how to reason away either of them.  I can see myself walking on a tightrope suspended high over the ground - and I can picture myself cowering in the corner.  Both with blaring vulnerability, and not at all the way I want to be.

Since my dad's diagnosis, I've done a lot of reading about cancer.  Every time I read something or hear something about risk factors and early warning signs, I feel a knot in my gut.  I want to yell a warning of my own to people who may also be reading the same information: Nothing is for sure.  No one is safe.  You can try to live clean, you can do all the right things, you can deprive yourself, you can avoid risks, you can live on a deserted island with no radiation, no cell phones, no microwaves, and you can eat whatever kind of diet you think is best, but YOU ARE STILL NOT SAFE.  And so there is the anger - and the fear that fuels it.  For like C.S. Lewis wrote, "No one ever told me that grief felt so like fear." 

And it does; it really does.  Fear brings out so many things that I just don't believe were present in me before this tragedy - fear that there is something lurking, fear that I have no control over anything, fear that I am messing something up along the way that cannot be taken back, fear that time may be limited for me or for someone else I love, fear that I may go off into the deep end, fear that I am too indentured in grief and loss to do what I am supposed to be doing, physically and philosophically.    

One thing that continues to shock me about grief is how draining it is, both physically and emotionally, even this far out.  It's such an assault to the system on so many levels.  But, with as tired as I feel most of the time now, here's another irony: I often can't sleep.  Many nights a memory involving my dad plays over and over in my mind.  Sometimes that thought is a happy one; other times it isn't.  Regardless, though, and even when I'm not thinking about him, the insomnia seems to have set up camp on a permanent basis, further adding to my weariness.  That tiredness affects my health, as expected, and also, I'm sure, my attention span and my short-term memory, which haven't been at their best either for quite some time. 

The way things are now, I have to work to see the magic in things much of the time.  It's still there; at least I am aware of that - it's just that I have to remind myself of it, and I know I am at risk for not seeing it as I used to do so easily.

Sometimes all I want to do is to be by myself, to regroup or to cry or at times just to keep from spreading my sadness any more than I have to.  At other times, though, I can hardly stand to be alone; I recognize that I need to be around people, especially those who care about me and - even better - those who know what's going on with me and those who try to understand.  

I am, I think, much better at being supportive to others in difficult situations and more empathetic or, in some cases, sympathetic towards others these days.  Don't get me wrong: I cared when I heard about people going through hard times before my dad got sick; I just didn't GET IT on the level that I do now.  I now realize that it's a blessing to me to be in a position to help someone else who needs support, and I think I'm more in tune with what to say or do in certain situations because of my own experiences over the past couple of years. 

At the same time,though,  I am less tolerant of what I have come to see as drivel and drama.  I have a hard time nodding in complacent agreement when I hear someone say they just had the worst day of their lives – really?  Did you hear that someone you love has a death sentence coming down the pipe?  Did you watch a loved one die?  Did you bury a family member today?  Then your day wasn’t all that bad.  OR – when people say “I almost died!” when they’re talking in superlatives like “I was so shocked” or “It was so hot” – really?  From listening to complaining to watching someone make a big deal out of what is essentially nothing, I guess I am just more intolerant of certain things these days, which admittedly isn't fair of me, considering I certainly need more than my fair share of tolerance and understanding from those around me much of the time.  

I read several blogs written by fellow grievers, each with their own set of circumstances, story, and timeline, and each with lessons for me along the way. One thing I am more aware of now is that constant talk about sadness and anger and unfairness aren't necessarily the most pleasant to read, and more to the point aren't the most productive.  I think we as a society see something that is broken, and we try to fix it; when we are sick, we do what it takes to get well.  And I think as such our tendency is to want to hurry up and heal or to get over our grief as quickly as we can, but I'm not sure that's the right thing to do.  Most people who are actively grieving seem to be doing it in private for the most part, and maybe that's not the right idea either. 

And so then there's the guilt, and the shame, and the secrecy of the sadness of it all, which is a point of sadness within itself.  I realize this may seem a bit sensationalized, or repetitive, or self-centered, as if I think I am the only person who has ever suffered a loss.  I don't mean for it to be like that - I guess I am just searching for some kind of answers, and, oddly I know, I also realize that those answers really don't exist.  There is no pattern to grief; there is no to-do list that will ease the pain of the loss.  It truly is what it is, because, as Dad would say, what else would it be?

Some of the changes I think are positive though ... I am much more observant of the Silver Linings in my life; I don't go a day without recognizing how lucky I am, even on my worst days of grieving.

I take more pictures.

I appreciate the positive in my life - and the people, even more than I did before.

I write more - because it helps me to sort out my feelings, and because one of the things that hurts the most about having lost my dad is realizing that some of his stories are gone, too, and I want to try to save as many of those as I can.

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.