Waiting for Disaster

So much has been written about the stages of grief over the years.  It’s interesting to me, and I have found some comfort reading about generic Grief because the information sometimes serves at times to let me know what may be coming down the pike emotionally for me and at other times to reassure me that what I am feeling/thinking/doing is Normal (whatever Normal is). 

One of the many things that I did not know about before we were in the thick of things ourselves after my dad’s illness was Anticipatory Grief.  Somewhat ironically, I actually learned about it after we’d been launched into full-blown Grief after my dad’s death, but even in that context I was able to recognize the accuracy of what I was reading about it in terms of what my family went through while my dad was sick.

Something related to Grief that I haven’t heard anything about, though, is the watchdog mentality of a person who is caring for someone with a catastrophic illness, an emotional state that can even extend into the time period after the death of their loved one.  It’s an odd habit that can easily find footing, morphing into almost an addiction of sorts, the waiting for something bad to happen, the unwelcome sense of dread and fear, the impending sense of doom. That Waiting for Disaster kind of thinking makes sense when a person is caring for someone who is critically ill; what doesn’t add up, though, is when that feeling lasts even when the sick person isn’t around to need help anymore.

I don't think there's a term for that extended expectation of catastrophe; perhaps Foredoom is a good way to label it. From talking to so many people who have gone through similar situations like my family did after my dad's diagnosis, I can tell you that it's real - and that it's not that uncommon.

At times, when that Foredoom takes hold, it can feel almost shocking when things go well, and what’s even stranger than that is the way it feels disconcerting, maybe even reckless, to try to drop the Worst-Case Scenario kind of thinking, the sleeping with one eye open, the constant monitoring of the cell phone just in case someone needs me for something critical.  The thing about it that hooks us, I think, while we are caregivers in a critical situation, is the feeling of being needed, perhaps even in a life-or-death type of way, and of feeling like we have some control over things that without us, we imagine, would go spinning out of control. 

When that caregiver role is gone for us, it’s a loss that adds to the chaos, the directionlessness, and the grief of the loss of our loved one.  The sting of the realization that we did our best and still weren’t able to FIX things weighs so heavily on us and makes us wonder “What next?”  It makes us question whom we are, what we are supposed to be doing, and how we are going to cope with the changes that have been forced upon us.

Sometimes, I’m learning, that sense of vigilance remains, long after it makes sense.  Maybe we've become so accustomed to the noise that we don't know how to cope with the quiet. Maybe it’s our psyche’s way of punishing ourselves for not being able to save the person we loved - or for living still when he isn’t.  Maybe it’s a result of clinging on to the idea that we have any control over anything in life, even long after we should have realized how crazy and misdirected that thought is.  It’s like being “on call” was the thing that gave us direction and meaning, and, now that that’s gone, those of us still here are left adrift, unable to relax or unwind but so, so exhausted and confused and disoriented.

Worrying

For as many things as I like to think that I got from my dad, whether by nature or by nurture, we had one core difference: I am a worrier and, simply put, he wasn’t.

I, like others with tendencies similar to mine, call it planning, organizing, taking care of the details.  I consider it a necessary part of life and, truth be told, I do it pretty often; his philosophy was that whether or not one worries is a personal choice.  He and I had many conversations about this topic over the years, including several during the weeks that he was sick, and he told me many times that from his perspective there were alternatives to worrying, like “just doing it,” or “going with the flow.”  He was a great list-maker, often leaving sticky notes and legal pad pages of reminders for himself around the house, on his desk at work, and even in his car.  That, he said, was a way to get worry off his mind.

That stuff doesn't work for me, though.  I don't feel like it's my choice to worry or not to worry, and making lists (as I do as often as my dad did) lessens the worry but doesn't turn it off. 

This is what a supreme worrier I am: I often read books while thinking about trying not to leave a mark on the book that will affect its condition.  I try my best not to get smudges or water marks or creases on the pages as I read.  My dad, in contrast, concentrated on thoroughly enjoying a book as he read through its pages.  What a joy I have found it to be to look back through the books he read and to see the marks he left behind, the crumpled pages, the sticky notes, the underlined and notated passages, and the dog-eared corners.  What pleasure it brings me to look at those things and to know that my eyes are where his once were and that he so completely basked in the moment when he was there, on that page in that book.  It’s like seeing the scrawled “I was here” written somewhere, and it makes me smile and warms my heart.  It also sometimes makes me think again about the benefits of worrying less, or, as my dad would say, choosing to do something besides worrying. 

Maybe that’s why the anxiety that Dad experienced during his illness, especially during the last two weeks of his life, still haunts me so much.  It was so uncharacteristic of him to be worried, and the rest of my family and I felt so powerless in our ability to quiet his fears and quell his distress.  More than anything during his last days on this earth, I wanted to take away that worry, which I knew would ease his pain. I think back to his last night in the hospital and to the next two nights after that when I took a turn sitting up with him as he struggled to sleep and as we worked to get control of the panic and the pain, and my heart hurts to remember the worry etched in his face.  Sometimes the medicine would help, but more often it was the presence of someone he trusted completely that seemed to help ease his mind.

I remember sitting beside his hospital bed in the semi-darkness of my parents’ den after he’d come home and listening to him worry aloud about things that he could not control.  I tried telling him not to worry, I tried to let him know that we only needed to focus on the really important things, and I tried to convince him that others of us would take care of the things that seemed to be on his mental to-do list, but that just seemed to agitate him more.  Finally, I waited for him to pause to take a breath, and I said, “It’s going to be okay, Dad; I hope you can choose not to worry so much,” and he turned toward the sound of my voice in the darkness as if those words were my arms going around him.  A minute later, the talking stopped and his breathing slowed into the rhythmic pattern of sleep.  I stood up to cover him with an extra blanket and then tucked in beside him, half on the couch and half on his bed, with my head on his shoulder, thinking that maybe I could absorb the burden of the rest of his worries during the remainder of the night.

What Grief Can Look and Feel Like

A friend of mine recently lost her father, and she has asked me about what’s “normal” in grief.  Hmmmm.  First, I will say that I am perhaps not the right person to ask that question of, as I am not only unsure about the answer but also because I think that even my speculation about the answer may be more confusing that it is right.  And next I will say that one of the things I do know about grief is that there really isn’t a “normal” to it. 

Through the reaching out of others with whom I have connected through this blog, I have begun to see that, although grief may have some universal similarities to it, it is not experienced in the same way by any two people.  There’s not a right or a wrong way to do it.  Going through the grieving process often seems to make people feel like they are feeling abnormal – but that’s normal, I think.  Grief is just grief, and, in spite of the things it may cause people to do or say or think or feel, it doesn’t mean that the person who is grieving is flawed, or sick, or selfish, or crazy, or depressed. 

 Grief can look like thousand different things, mostly painful and confusing but some inspiring and strengthening, if one chooses to let them be. I think that the idea of death and dying, the difficulty of grasping such a HUGE concept, as well as the questions that come along with it like WHY and WHAT NEXT sometimes makes our brains think things we wouldn’t ordinarily think.  One thing I have learned by putting my story out there publicly is that whatever’s going on in one’s head in the midst of the grief is very likely to be something someone else has/is also thinking or feeling; maybe knowing that will help someone else not feel quite as alone as they walk the road of grief and mourning. 

Lots of times grief feels like walking in a fog, without any direction at all.  It looks like breaking down into tears in the middle of driving to work or making dinner or taking a shower.  It looks like reading the same passage over and over again and then saying “To hell with it” when the words on the page still don’t seem to make sense.  It looks like waking up in the middle of the night and forgetting what has happened just for a second or two, and then remembering and feeling the slam of the sadness all over again.  Sometimes it feels like a force making you want to stay in bed – even if that means missing a meal or a party or work or the entire holiday season.  Sometimes it feels like a force that won't let you sleep - or that fill the sleep that does come with nightmares and sadness.

Grief can make it feel as if the world is spinning, it can make things look fuzzy, and it can make your legs feel heavy like cement and your heart feel broken and raw.  It can make you feel overly bold or brave … or it can make you feel small and terrified, all the time.  It can sometimes make a simple task or decision feel like climbing a mountain.  It can look like staring into space; it can make you feel like you can’t function, and – here’s the brutal truth – it can make you not really care if you can’t.

Grief can look like laughter – or rage – or avoidance – or more tears that you ever thought your body could manufacture.  It can make the world look like a minefield, full of danger.  It can feel like walking into a room full of strangers who have no idea what you’re thinking or feeling or what you’ve been through – and it can also feel like being all alone in a completely empty room, full of only coldness and hard edges and with an echo.  It can feel like holding onto a secret that has been locked away or supporting a boulder so big that it’s incomprehensible to think about ever doing anything besides struggling under its weight.  It can feel like going on a hunt, looking for a glimpse of any good at all in the world, a desperate search and an endless list of questions and worries and fears.

It can look like an endless road, and, in a way, that’s what I think it is, and I think maybe the secret to getting through it is knowing that there is no secret to getting through it. 

From This Vantage Point

During the ten weeks that my dad was sick, whenever I heard someone use the phrase "at least" in reference to my dad's illness, my gut burned with fury.  I didn't want any at-leasts, or rather I didn't want to have to have any.  I wanted my family to go back to the way it was, and, as I tearfully texted my husband late in the night after we brought Dad home from the Brain Tumor Clinic at Duke, I wanted my dad back.  It seems selfish and childish to me now, but I was in a state of shock and disbelief that that changes that had occurred in such a relatively short period of time had happened.  The doctors at Duke had promised us that the treatment Dad had gotten just after his appointment there was like "magic;" they told us that within 24 hours of getting the medicine we would notice an improvement.  Instead, though, probably due to the toll the stress of the trip had taken on him, he seemed worse.  To me, there certainly didn't seem to be any at-leasts in the picture at the time.

Dad, competing in a half-Ironman triathlon just weeks before his diagnosis

The at-leasts poured in from seemingly everywhere while he was sick and for awhile after he went on ahead; I realized even on my worst days of rage and despair that everyone who said those words did so in an effort to help: "at least he had his family around him the whole time he was sick;" "at least he had good insurance;" "at least you got to spend those extra weeks with him;" and then, the hardest to swallow, "at least you were with him when he died."  We even got a few at-leasts that weren't true ("at least he didn't suffer" being the most blaring untruth).  People were just trying to help, I told myself then and in the months that followed.  I knew it was true; I just hated that I was suddenly on the receiving end of such a phrase. Just having part of what I had or should have had didn't seem good enough.

The flag at half-mast at the cemetery on the day of dad's burial

Over the past six months or so, though, I've been thinking more about those at-leasts, and I've started to see them a little bit differently.  Don't get me wrong: I still long for the whole; it's just that I'm starting to see the value in the in between.

I think the change has come from my reading about the struggles of others - their challenges, illnesses, and grief mostly - and seeing that the people who seem to come out ok (that is, those who don't end up with a completely bitter outlook on life, one that seems so damn disrespectful to the people in their lives including, in the stories of grief, the person for whom they are grieving) are the ones who lean at least a little bit into the at-leasts.  

My dad wasn't a big believer in thinking about Worst Case Scenario; although he like to plan ahead, he frequently said that he thought worrying was a waste of time.  I'm actually not sure what he thought about at-leasts, if he thought about them at all.  I know he was a positive thinker, though, and I can see now that at-leasts fit into to that way of thinking, which is further evidence that it's not a bad idea for me to reconsider my view on that point of reference.

From this vantage point on the road of grief, I can see the value of at-leasts.  Saying "at least" in reference to one's own troubles is a way of keeping perspective; it's a way of reminding ourselves that, while we are powerless to change certain situations and to stop certain things from going wrong, we have a choice in how we view things, even (and maybe especially) in the midst of tragedy and hardship.

And so I have changed my opinion on at-leasts: I believe in the goodness of at-leasts and of positive attitudes; I believe that each of us has the power to take tough circumstances and bad breaks and find the good in those situations.  And that, more than anything, is what gets me through the day now.