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.

The Marker

Before my dad went on ahead, I’d never really considered the way that the birthday of a loved one can transform from something that fills you with anticipation and excitement to something that seems so sad.  It seems so odd to me the way that happens; certainly I still want to recognize and celebrate the birth of one of the most important people in my life, even when he isn’t still here to celebrate himself.  I think for my family, the sense of enhanced sorrow and grief that comes with this week is exacerbated by the fact that it was the same week that he was diagnosed with the brain cancer that took his life only ten short weeks later.  That, as much as his absence, makes it seem counterintuitive to celebrate.

For me, in fact, it feels like salt is being rubbed into a wound, and a lot of the emotions that are usually just hanging out beneath the surface on a typical day seem to be bubbling up and threatening to erupt with the week when everything changed for my dad, for my family, and for me.  The annual marker, which I prefer to avoid thinking of as an anniversary since I tend to think of anniversaries as happy and worthy of celebration, approaches without hesitation and haunts us without regard to our ongoing pain. The week represents such a major shift - an ending of things as they were and an awareness of what should have been.

I long for just one more hour, one more conversation, one more hug, one more anything with him.  I want to push through the pain and focus on the importance of the day of the year on which the man who means so much to me came into this world; the challenge to do so is far greater than I ever imagined it would be. There are so many things that my dad will not get to experience now, things he would so love to be a part of or to know about or to see.  His presence in my life continues to shape me on a daily basis, and I do celebrate that fact as much as the grief will allow. Sometimes though, especially when I can’t avoid the what if, the should have, or the should be kind of thinking pattern, I am overwhelmed by it all, missing him so much that I struggle to move through the ache. The only thing that seems to be of comfort to me when I think about those things is to remember the life that he led that I know he considered to be a great one, to recall the way he was filled with such joy and gratitude, and to recognize the fact that I know if he knew anything at all for certain during the days of his illness it was that he was loved.  Happy birthday, Dad; you are loved and you are missed.

Water Marks

I've heard it said that within two generations after a person is gone from the earth that it will be as if he was never there. This is a statement with which I completely disagree, though; I think people who think like that have not considered the rippling of a person's presence, the mark that is left behind forever by association on generations to come. If something about a person affects me in any way at all, there is a shift in my actions, in my perspective, in my words, or in some other area, and those around me are likely then to be impacted to some extent, which then affects others in their path in the future.  That's how the rippling effect works; that's how our presence is maintained long after each of us is gone. This is something that has become very clear to me since my dad's death, and it is a truth in which I find comfort.

Once when I was in college, I heard someone make an off-hand comment about how it drove her crazy when my dad put a glass of water down on her coffee table without using a coaster. "It's like he doesn't even think about the water marks he's going to leave," she complained. I didn't really see her point at the time and I still don't; like my dad, I guess, it's never been something that I've thought was worth adding to my Worry List. 

In fact, I noticed a water mark on a piece of furniture in my house just the other day and thought, "Damn, what I wouldn't give if I knew that mark had been left there by my dad."

I don't think my dad went through life thinking about the water marks that he was going to leave behind; he wasn't that self-centered or that existential in his philosophy.  I wish he could know now, though, about at least some of the ripples he created; certainly his presence and the waves of his existence continue far beyond what he was able to see.

Knock, Knock!

On the next to the last day that my dad was on this Earth, I promised him that I would take care of my mom and my grandmother and my siblings, and I told him that we were so thankful to have had him to pull all of us together as a family.  And then, as I knew I needed to say for him, after all he had done for me all of my life, I said to him, "You can go. But you have to come back to me!" Dad, who had lain still for more than a day except for the slow rise and fall of his chest from rhythmic breathing, started stirring in the bed, moving around and kicking the covers in an agitated fashion.  Instantly I realized that he had heard me, and I was ashamed of the selfishness behind what I knew he thought I was asking him to do.  "Oh, Dad," I cried. "I know your body can't do it anymore. I know you are doing everything you can to stay here with us, but it's ok if you can't. You've finished the race: you've done everything you needed to do, and we will be ok."  He immediately settled down again, and I just sat there beside him, quietly crying, biting my lip to keep from wailing because I knew if I did that he would hear and be upset by that too.  I wanted to tell him that what I'd meant was that I hoped he could try to send me a sign, after he'd gone on ahead, and that he could come and be with me and the rest of the family later, in spirit.  I didn't tell him that, though, because I didn't want to risk causing him any more distress, and so I told myself that he would do it anyway, without having been asked, if he could find a way.

There are so many times these days that I feel him right here with me, and my sisters and my mom feel the same thing at times, too.  Sometimes I feel his spirit when I look up into the sky and see big white clouds contrasted against a blue sky - or when I see a beautiful sunset or sunrise.  Sometimes it's when I see or hear or even smell something that reminds me of him in such a strong way that it's impossible to ignore or overlook.  And sometimes the thing that makes me feel a connection with my dad is seeing a redbird, something that often happens at times when I need comfort or encouragement or when I just need something to make me smile and think more positively.  

My sister Nancy was the one who first commented that she had been noticing a redbird around her house and in other locations on a frequent basis.  After she said that, I started thinking about it and realized that I'd seen one around more often that I usually did, too. Other people in the family began to comment that they had seen redbirds in certain locations at different times, and over time it has evolved as a symbol of comfort and positivity whenever any of us sees a redbird.  

I sometimes think that Dad's spirit takes turns spending time now with each person he loved and watched over while he was here in this world.  If one or more of us are on the road, I think he's probably traveling along with us; if one of us is having a particularly difficult day, he's likely there to comfort us, often in redbird form.  

Yesterday morning, not long after I'd gotten to work, I checked my email and saw one in my Inbox from my sister Nancy's friend Suzanne, who, along with her family, has been having to make some very difficult decisions and plans as her dad enters into hospice care.  In the email, which Suzanne had sent to me and both of my sisters, she told us about something that had happened that morning as she was getting ready for the day.  Suzanne knew my dad and has heard us talk about the significance that redbirds have to us, and she has given me permission to share her words and a that photo she took:

I was getting ready in my dad's bathroom for a meeting at the hospice home. I was thinking about you girls and what you went through and how tough this all is. When I hear one knock at the window.  I think it's something to do with the storm. 

Knock again.  So I look, and this determined cardinal is there.  Going back and forth on the window.  Making sure I see him.  He only delivers one knock at a time .... but they are forceful.

Notice me!  I run to get my iPad to get the photo and capture the moment.  He knocks while I run away.  I take the photo and return to getting ready.  KNOCK.  

I turn around and say out loud, "Yes, I see you. And I know everything will be ok."

He knocks one last time and then is gone.  

And I have chills and an unbelievable sense of peace at the road we are about to travel.//

~Suzanne

Here is the photo she took - the redbird is in the bottom right corner of the window, looking in at her.

Memories on April Fool's Day

Twenty years ago today, my then-fiance and I went to the County Courthouse during our lunch break and got our marriage license.  We had intentionally planned to get our license that day: I've always loved April Fool's Day - even if I don't have a good idea or an opportunity to pull a prank on someone, I love the idea that I COULD - and also it was the only day that we could coordinate our schedules to make it downtown during business hours before our wedding date less than three weeks later.  

It's a good thing we did it that day, because, as it turned out, on April 2, the next day, my grandmother died.  

My maternal grandmother was the grandparent to whom I was the closest at the time; I saw or tried to see some of myself in her - or I guess I should say I tried to see some of her in me.  Anyway, even though she had been sick for awhile as she struggled through a relapse of breast cancer, I was shocked by the news.  I was grateful that my grandmother had hung on long enough to meet my husband-to-be and to hear about my wedding plans - and most importantly to meet her youngest grandchild, whom she held in her arms not long before she went on ahead, but I was so saddened by the loss that I could hardly put one foot in front of the other.  It was the first death that I had experienced of someone to whom I was close, and I was at a loss of how to even try to cope.  

Needless to say, the next few days were a blur as we made our way to the city where she lived and gathered together as an extended family to pay our respects.  I remember that I didn't think I would be able to sit through the service in the church without bolting for the door because I was afraid my cries would be too loud.  I remember hardly being able to bear the pain of looking at my mom, at my two aunts - one of whom had a two year-old and a two-week-old baby - and most especially at my grandfather, whose sky-blue eyes held such endless sadness that there seemed to be no possibility of ever being able to comfort him.  I remember that I stood with one of my cousins and my fiance long after the rest of the people had gone back to their cars at the cemetery; the funeral director had dismissed us after they'd lowered the casket into the ground, but I just couldn't bring myself to walk away before I'd seen her body buried, one final thing I felt I could do, if not for her than in her honor.  We stood there by the headstones of the other graves around her plot, and I looked for four-leaf clovers while the dirt was placed over her beautiful silver casket, adorned with beautiful tiny daisies.  I remember that I was a little bit comforted by wearing one of my grandmother's sweaters to the funeral; it was the only thing I had of hers besides the opal ring she had given me - "October birthday girl to October birthday girl,"she'd said - when I celebrated my sixteenth birthday.  Years later, I pulled that sweater from the back of my closet and wore it to the funeral of a friend, and in the pocket I found the handkerchief that my dad had given to me at my grandmother's funeral, a reminder of both the tears I had shed and of the love my family shared as we tried to support each other through those rough days.  

I knew my grandmother well enough to know that she would absolutely have wanted "the show to go on," and so, just a couple of weeks after we laid her to rest, my dad walked me down the aisle and I said "I do" to my new husband in front of many of our family and friends, at sunset on the banks of the Mississippi River.  I wore the gerber daisy wrist corsage that was intended for my grandmother during the ceremony; I felt my her absence profoundly that day as I have many days since. 

Wearing the corsage meant for my grandmother

Today, when I think back on that April Fool's Day at the Courthouse, to the days afterwards leading up to the wedding, and to the wedding itself, so many emotions run through me.  I feel lucky, I feel loved, I feel happy for what I have learned and shared and survived.  Twenty years, wow.  Pretty incredible.

My grandfather, at my wedding, just two weeks after he'd lost his wife.
"I'm here for two," he said, and I knew just what he meant.

What I Have Come To Believe - Part 1

There are some things that I've started to think about since my dad died that leave me with feelings of uncertainty; the more I ponder those things, the greater the lack of clarity I experience.

However, there are other things that I have become completely clear about, sometimes because I had never experienced or considered these particular issues before - and some things that I had come across but about which I hadn't had this particular perspective previously.  

Here's one of the things I know for sure:  I know that the world is different without my dad in it, but it's probably not as different as I judge it to be, at least not in a general sense.  Personally, I see the world now in a totally different light than I did before Dad got sick, and I've developed a view that is perhaps less naive, perhaps more jaded, or maybe both.  Every time I hear or read the statement "What doesn't kill you makes you stronger," I want to argue: from my perspective, this could not be further from the truth.  If we can keep from allowing it to break us down completely, we are not left stronger;  if we are lucky and diligent, we are left transformed, metamorphosized, different.

I search for consolation for the rest of my family and for the other people who knew my dad and who still say to me "I just can't believe he's gone," but I am unable to find anything of comfort for them since I have yet to find it for myself.  Time has passed; some of the sharp edges of grief have moved into more of an aching pain, but the sorrow and all of the other emotions that come along with the mourning are still there, with no end in sight.  I am different from the person I was before my dad got sick; I live differently, I think differently, and I believe differently.

I know this grief won’t end. It will only change and lessen. We will not get over it, but we will learn to live beside it, hopefully more efficiently and more gracefully than we have been able to do so far. We will hold our memories in our hearts and rely on the promise that the thoughts that now make us mourn will one day be overshadowed by the ones that make us smile.

In Search of Comfort

In the hours, days, weeks, and months after my dad went on ahead, I became aware of a phenomenon that I hadn't ever been in a position to notice before, and that was one of feeling as if I myself were the source of pain each time I had to tell someone else that my dad had gotten sick and that he didn't make it. I felt guilty and somehow responsible for the shock and the sadness that I witnessed descending upon each person as soon as the words left my mouth.  I felt as if I should be able to comfort them.  I wished I could spare them having to know what had happened and I wished I could explain why, but I couldn't do either.  Instead, I had to stand by and witness their pain, their sadness, and their grief, while I was deep in the midst of those feeling on my own. 

If I'd had to guess before I had any inside knowledge of one who has lost a loved one, I would have said that the worst would be when someone didn't know what had happened and I had to tell them.  But what I discovered was that the hardest thing to get through was when I knew someone knew how sick my dad was or even knew he had died but then they said nothing to me afterwards.  It felt like they didn't care, like it didn't matter to anyone except those of us who were so deep in our grief that we could barely function.  It was like salt in a wound; it was like watching and not be able to stop the waves from washing up on the shore and wiping out a one-of-a-kind sand castle in the process.

About six weeks after Dad went on ahead, my husband, my mom, and I attended a business convention that my dad had been a big part of for decades.  Everyone at the convention knew (had known? Damn I hate having to change that verb tense) my dad; he had known many of the people who were there since I was a child or longer and had served as a mentor for many of them over the years.  

The last time any of those people had seen my dad was one year ago, ten months before he died and eight months before he got sick.  They still thought of him as being the picture of good health; he was the guy who was the life of the party, working the crowd and cutting up on the dance floor at night and then heading up a meeting after an early morning run the next day.  People asked what had happened, and I didn't know how to respond. I could hardly have finished processing the series of events over the ten weeks.   Most of the people there had heard about Dad's illness and his death, but it was like they couldn't process it or accept it until they showed up at the convention and saw that he wasn't there for the first time in decades. His absence was blaring, to put it mildly.  In the midst of their shock and in what I guess was an awkward attempt to process the news themselves, several people told stories about other people they knew who had gotten some serious kind of cancer and had survived.  That didn't make me feel any better, and I don't think it served that purpose for them, either; actually, I think it only fueled their sense of disbelief.  We heard a lot of "I'm sorry's" but it seemed like mostly what was said was "I just can't believe it."  Yep, me neither, I said.  What I guess I wanted them to say was that sucks and I'll miss him too.  I wished they had something that would comfort me and my family; I wished I had something that could comfort them - or myself.  But there was no protection, and there was no comfort to be had.  

Connections

As a child, I loved nature and the outdoors. When I needed some alone time, I would often grab a plastic milk crate and, with that in hand, climb one of the pecan trees in our backyard.  High up in the tree, I would place the crate upside down in the branches and sit on it so I could relax as I felt the breeze blowing through the limbs and watch what was going on below.

One thing I've found since my dad went on ahead is a renewed feeling of that love for the open air and the peace that it gives me; it makes me feel some of the connection to my dad that I, like many others who have lost loved ones, am seeking - so much so that we often end up noticing, watching for, and even collecting things that remind us of our loved one.  Just like I did up in those tree branches many years ago, these days I find peace in the sight of a rainbow or a particularly magnificent sunset or a bird that seems to be looking right at me for an atypical amount of time.

A few months after my dad died, I mentioned in conversation with a friend that I derived a little bit of comfort in having some of my dad's things with me - an old shirt of his, a pair of his socks, a book of his with the corners of some pages folded over where he had marked his place.  My friend, who had been through the loss of a parent before me, told me that she understood, and she predicted that at some point I wouldn't feel as strong of a need to hold onto my dad's things because I would feel connected to him through my memories instead.  She may be right, but I'm not there yet.

For as long as I can remember, my dad had a favorite pillow.  He was always a little particular about things that affected the quality of his sleep; I guess that came from getting up so early to run for so many years.  For years while I was growing up, he had an orthopedic-type of pillow that he slept on every night; he even took it on road trips so he would have that one instead of having to sleep on a hotel pillow.  There were several instances when he left his pillow behind in a hotel room, and, when he realized his mistake, he called the front desk at the hotel and with his usual friendliness persuaded an employee to mail it back to him at home.

When I went to the hospital to be with my dad when he first got sick, I brought a pillow from my house.  The pillow case was one that my daughters had tie-dyed months before; I thought it would be good to have an extra one at the hospital for Dad or whomever was staying there with him to use, and I knew the original design of that pillow case would differentiate our pillow from one that was hospital property.  That pillow ended up following us along during the whole time Dad was sick, going with us from the hospital, to rehab, to the hotel where we stayed when we took Dad to the Brain Tumor Clinic at Duke, to my parents' house, to the hospital again, and finally back to my parents' house.  When we brought Dad home from the hospital the last time, we bought about a dozen new pillows to use to position him to try to keep him comfortable in the hospital bed; we encased all of them in blue pillow cases which we'd also purchased just for that purpose.  The pillow in the tie-dyed case wasn't needed anymore, and so I took it to sleep on, first at my parents' house and later at my own house.  I sleep on that pillow every night now; it, like the outdoors and like some of Dad's things from when he was healthy, bring me some comfort in an unexplainable way, especially at night when I seem to need it the most. 

The pillow that followed us

I imagine that it is a universal struggle for those of us left behind to decide what to do with the belongings of the person who has gone on ahead.  Dad would tell us to get rid of it all; he'd think we were being silly and sentimental, and he would point out that it's just stuff.  And it is, but his possessions marked his place in the world, and, in a way, I feel like they still do.  

Everything that changes in my parents' house - even in my house and even in the world around us - is something that takes me further away from him.  The first few times I was at my parents' house [I know I should just call it my mom's house, but sometimes I revert back to referring to it as theirs] after Dad died, I found myself looking around for dust - not to check my mother's housekeeping skills but because I had read somewhere a long time ago that household dust is made up of mostly skin cells, and so I reasoned that some of Dad physically was still there.  I felt - and I still do to some extent - desperate to hold onto anything that has the possibility of making me feel connected to him.  

Along the way, we've cleaned out and gotten rid of some of Dad's stuff; we donated some of his suits and most of the many pairs of running shoes that were crowding his closet.  It felt a little like ripping off a band-aid, except for the fact that it still hurts afterwards too.  Again, I am sure he would have wanted us to give those things to someone who will use them, but letting go of any of it is still a really hard thing to do.  I just don't want to lose any more of him.