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. 

Circling the Drain

One of the many things that caught me off-guard about the grief process is how completely exhausting it is.  At first, I thought my fatigue was the culmination of the sleeplessness that came from caring for a critically ill person who, as in our case, almost never slept.  My mom, my sisters, and I were so far in the red on sleep it would have been understandable if that alone caused us to sleep for a week solid after my dad went on ahead.

But in researching and in learning first-hand about the grief process, I've found that grief itself is a cause of exhaustion, both physical and emotional.  Grief is hard work, whether we realize it or not; it's taxing in so many ways and on so many levels, even while we are sleeping or doing routine things like showering or driving to work.  

Probably the most physically taxing thing I've ever done in my life, besides coping with grief, has been running a marathon. Each time I've done that, I've trained for months in advance, I've read about what I should be doing to make it to the finish line, I've put effort into visualizing myself completing the event, and I've been in very good condition going into the race.  None of those things were true going into my dad's illness or his death - or being plunged into the quicksand of grief that followed.  In fact, another thing I've realized that actually contributes to the fatigue and the sense of overwhelm is that, in grief, there is no finish line.  The emotions that come with grief may seem as if they are easier to take or even fading over time, but what's actually happening is that the person who is grieving is becoming more adept at tolerating the assault as they become more seasoned or even more hardened.  

For the first six months or so after my dad died, I tried my damnedest to dream about him; I felt (and still feel) such a desperate need to have any kind of contact with him.  I had a few dreams about him, which I wrote about here and here, but then I went quite awhile with nothing.  My conjuring powers were apparently shot, at least for that time period. What ended up happening after that instead was that I started dreaming that someone was trying to kill me, obviously a very disturbing and terrifying experience, one that easily reminded me - not so coincidentally - of how I felt in Real Life starting the second my dad got sick.

I've heard it said that dreams are often the mind's way of helping us to work through our troubles; I'm not sure that applies to this situation, though: I wanted to lose the feelings of powerlessness and terror and injustice, not to experience them again and again as I did each time a dream like that came to me.  I sometimes wonder if my brain was trying to desensitize me to that feeling - because, as I've learned from what happened with my dad - that's life, it's going to happen, and no amount of training or learning or otherwise preparing can actually help when things happen that cause the grief to bear down on us; I think the best we can do is to accept that it's going to happen and to have enough hope and faith that we will get through it, somehow.  

The Smell of Colors

I once worked with a child who said that he could smell colors; I was intrigued by his claim and asked him to tell me more about it – how he’d first noticed it (“I just did,” he said) and what each color smelled like to him (interestingly, I thought, white smelled like flowers, whereas I thought it would smell like the “fresh cotton” scent of an air freshener).  Some of the other people who worked with this child seemed to think his behavior was bizarre, but I thought it was fascinating.

Obviously I can’t tell other people how a certain color smells, but what I can do is to describe what certain emotions sound like. 

On the first night after we’d gotten to Durham when we took my dad to the Brain Tumor Clinic at Duke, my sister Jennifer and I lied down to try to sleep on the pull-out couch in the little room that adjoined with the bedroom where my parents were. Dad, who was both exhausted and wound up from the very long, tedious drive there that day and somewhat disoriented about what was going to happen the following day, had finally gotten to sleep, and Jennifer and I had only then realized that all of the pillows and blankets were in the closet of the bedroom.  We didn’t dare go in there for fear of waking Dad up.  We lay there on the thin, spring-violated mattress with a threadbare sheet over us, without pillows for our heads, and suddenly we both started laughing.  Punch-drunk is what I guess it’s called: laughing when essentially nothing is funny - out of fatigue so thick we could hardly think – and stress and terror and so many more things that felt so much more powerful than we were at that moment in time.  We had to keep shushing each other until we finally giggled ourselves to sleep that night, with the laughter somehow helping us to steel ourselves for the next day, which was both Jennifer’s birthday and the first day Dad got chemo.

The metaphor that comes to mind most often when I think about my emotional state during the time Dad was sick is a glass that’s completely full: whenever anything additional was added to what was already in there, the overflow was out of my control, and I was completely incapable of handling it.  One of the many things that happened during those ten weeks that threatened to put me over the edge was the car trouble that mysteriously started happening just after Dad’s diagnosis.  Just days after his surgery, I remember hearing a faint buzzing noise coming from under the car hood after I'd parked and taken the key out of the ignition.  My husband checked it out and said that it seemed like the battery was still running, despite the fact that the car wasn’t.  He took it to the repair shop, but they couldn’t get the problem to reoccur while it was there.  It didn’t happen again for about a week; the next time I heard the buzzing noise, I was in the parking lot at the rehab hospital, about to go inside and take an overnight shift with Dad. 

I was torn; I needed the car because I had to drive back home to go to work the next day, but I needed to be with Dad.  In a move that seems totally uncharacteristic for me, I threw caution not just to the wind but completely into outer space and left the car – and the buzzing – in the parking lot and went into the hospital.  Since my dad’s diagnosis, my priorities had never been clearer.

The next day when I went outside to the parking lot after Mom had come back to be with Dad, I unlocked my car door and tried to start the engine.  Nothing.  The battery was obviously dead.  Luckily for me, my aunt, who was at the hospital too, offered to help; we called AAA and they sent a repair guy to check it out.  He replaced the battery, and, when the same incessant buzzing sound started up again as soon as he connected the new one, he told me to get the problem checked out to be sure it wouldn’t happen again.  I took the car straight to the dealership near the hospital, but they couldn’t find a problem; they said they’d disconnected and then reconnected the battery and the buzzing noise had stopped. 

Looking back and remembering the amount of stress I was under at the time, I’m a little surprised that I didn’t just tell the people at the dealership to keep the old car and bring out a new one for me; having to deal with car trouble on top of everything else was definitely an overflow of the stress with which I was equipped to cope.  Instead, though, I drove the three hours home and told my husband what had happened (again), and he showed me how to disconnect the battery under my hood and gave me a yellow-handled wrench to keep in the side pocket of my car door, just in case. 

Just in case was a language in which I was fluent by that time.  I’ve always felt the need to have plans and back-up plans, and, since Dad had gotten sick and had begun to need around-the-clock care, I knew that careful strategies and consideration of all the variables was essential to my entire family.  Having to tote a yellow-handled wrench around did not at all – pun intended – put a wrench in the plans we had laid.

A couple of days later I drove back to where my parents lived and parked my car in front of their house.  I heard the buzzing again after I’d turned off the engine, and I inexpertly used the wrench to disconnect the battery. I became much smoother at the process over the next couple of weeks, even performing the procedure later in snow and in the dark.  On the day when I was driving home from my parents’ house on icy roads and had to turn back due to the route being impassable, I pulled up in my parents’ driveway, stepped out of the car, and heard the buzzing again.  In the snow and ice, I hurriedly used the wrench to disconnect the battery and then closed the hood of the car and went inside, wet from the snow and shaken from the precariousness of the road conditions.  Dad, who was sitting in his red leather recliner chair in the den, looked up from reading the newspaper when I walked in and noticed the wrench that I’d forgotten to put back in the car in my hand.  When he asked and then I explained why I’d needed the tool, he laughed and said, “Well, if the whole OT thing doesn’t work out for you, I guess you could always be a mechanic.”

When Dad was in the hospital the last time and my family was having to deal with getting to and from the hospital on icy roads at all hours of the day and night, I got so adept at disconnecting and reconnecting the battery that I could do it in the hospital garage in under ten seconds each time.  I ignored the stares of the people around me in the garage and declined the help of the security guard who saw me with the yellow-handled wrench and my car hood propped open.  The battery hookup/unhook became part of my commute routine, just like defrosting the windows and driving through Sonic on the way to the hospital to get Dad a Diet Coke.

I still sometimes think about the boy who said he could identify colors by their smell, and it makes me think that maybe part of the reason I made it through the difficulty of the time when my dad was sick and since then is that I somehow recognized that, because my family is lucky, we had the sound of laughter to remind us of the love and hope and devotion we shared even through the most challenging times.

At Least A Thousand Times More

Today is the fifth of the month, and, like the fifth of all the other months that have marked the time since I last spent time with my dad on this earth, it's not an easy day for me.

Every month I wonder if there will ever come the fifth of a month on which I won't feel this way.  I don't think so, at least not for at least a thousand times more or so.

I thought I could make it through the day this time around without writing about my dad or my grief, a new kind of milestone that I feel a weird kind of obligation to reach towards, even though it seems unnatural - and, truth be told, so sad and disrespectful I can't really allow myself to think about it much.  

It's been 30 months.  My god that's hard to believe.  But not as hard as it is not to be able to talk to him except in the format of a one-sided conversation.  

Today I've been thinking about the last time I saw him before we knew he was sick, which was on an extended family vacation in upstate New York.  My husband, my daughters, and I hugged my dad and my mom goodbye as we headed off towards our respective gates at the airport at the end of the trip; I don't specifically remember hugging my dad then, but I'm sure I did.  And I'm sure I thought I would see him at least a thousand times more, with both of us happy and healthy.

I can't help myself from thinking back to things that happened when he was sick, and sometimes the memories and the visions of those things haunt me - like how I used scissors to cut the hospital bracelet from his wrist both times when he came home from the hospital - and how the way I felt when doing so was so completely different on each of those occasions.  The first time, he was still recovering from brain surgery and we were still reeling from the news of the devastating diagnosis and preparing for him to go to Duke for the treatment that we thought would save him.  The second time, we had brought him home on hospice, to save him from the spiraling misery that was going on in the hospital, with hope of a different brand.  The second time, I saved the bracelet after I'd cut it from his wrist; I put it in my purse as if that made sense or a difference in anything that was going on. 

I think back to the packed-up box of stuff from his office, the contents of which would seem meaningless, perhaps junky even, to a stranger but were of exactly the opposite to us in value. I don't know where most of that stuff is now; I guess it doesn't matter, except for when it feels like it does.

I can clearly remember the moments during which the news of the diagnosis was delivered to us, and I remember so well the feeling of hope that the statistics wouldn't, and didn't, apply to him, or to us.  It was as if that Hope was our magic carpet, our oxygen, our blood; to live, we needed to believe that he would live.  I sometimes wish that I didn't remember some of those moments or the rapid decline and the series of let-downs and failures and disappointments from the second and final time that we spent with him in the hospital; that was like being caught in a fishing net, and it forced us to reconsider what we thought about almost everything.  I try to think back to the full weight of the feelings of helplessness, of guilt, of terror, and of powerlessness that crept in during that time, before they were overtaken by resignation and different shades of the previous emotions. But I'm not sure; I think they just gradually took hold of me over the course of the last three weeks of his life, and I have to say I haven't quite shaken most of them yet.

At the end of that trip to upstate New York, my immediate family ended up being stuck at the airport in Albany because of a delayed flight due to thunderstorms across the country; my parents made it out on their flight on time.  After they's gotten home, Dad texted me to check on us and commiserated with me about the inconvenience of the lateness of our adjusted schedule.  "I hope you make it home ok," he texted when I told him that our plane had finally been cleared for take off, the second-to-last time he would text me, ever.  And only five months later, I said goodbye to my dad for the very last time, and, in the early hours of the morning later that night, I laid my head down on the pillow to try to sleep and found myself crying so hard that tears threatened to fill my ears.  I tried to stop but couldn't, and then I squeezed my eyes shut and felt that same message flash from me to my dad:  "I hope you make it home ok," I thought between sobs, and then I added,  "I miss you, I can't believe this whole thing happened, and I don't think I can make it without you" - thoughts that would run through my head at least a thousand times more between then and now.

Lucid Dreaming

I've recently started sleeping to the sound of a white-noise program called Brain Waves, which is available as an iPhone/iPad app.

The program is supposed to influence one's state of mind according to the setting selected by the user by playing sounds that are perceived by the brain in such a way that normal brain waves that occur in various mental states are simulated to promote those states in the listener.

The setting I've been using is called Lucid Dreaming.  (You can probably see where I'm going with this.)  Since starting to use this program, I have had lots of dreams, many not really that interesting - but also a few about my dad.

Last night I dreamed that he and I were running together along a country road, counting telephone poles that we passed as we ran, and at some point my dad said, "I guess you can just go along thinking about how many more poles you have to pass before you get to the finish, or you can stop counting and enjoy the scenery instead."  The rest of the dream ended up being pretty monotonous,  with just the two of us running together in silence enjoying the run, but I woke up thinking about what he'd said to me in the dream and the application of those words to my life these days: rushing from deadline to deadline, working to get past one event to the next, thinking mostly about how I can pass through the things that bring me stress or that make me focus more on my grief.  The point is clear: I can choose to continue doing things that way, or I can choose to focus on the good and enjoy each day along the way.

                Good run, Dad; thanks //