Juxtaposition

It was a cold morning, and I was alone in the car when the call came the first time.  It was my mom calling, telling me that I needed to come as quickly as possible because my dad’s condition was getting worse.

It was on another cold morning just over two years later when the call came the second time, and I was alone in the kitchen of my house when I answered the phone and heard that I needed to come.  But this time it was my brother-in-law David, calling to tell me that my sister Nancy was in labor, news that I was so happy and excited to hear.

Looking back to the time just before the first call, I was expecting the call to come at some point, although on some level I believed that there could be another outcome, better news coming instead or at least the bad news being delayed for a long time.  The second time, though, I knew the call was coming soon, and I had been eagerly awaiting hearing the words at the other end of the line.  We would be gaining a new member of the family this time.

Both times when the calls came, I dropped what I was doing and frantically packed a suitcase.  Both times, as I backed out of the driveway, I promised to my husband that I would keep him posted about what was going on after I’d gotten there.  Both times as soon as I'd gotten on the road, I called my sister Jennifer to talk to her about her plans for travel from where she was in California, and then I drove in silence while so many thoughts and emotions ran through my head that I finally had to turn on some music.  When Jennifer gave me her flight information after the second call, we both realized that the departure and arrival times of her flight that day were identical to those after the first time the call had come.  And we both knew that she would again be racing the clock to get there in time, with none of us having any control over whether or not she would make it there soon enough.

Both times after I’d started my drive along the same route, I struggled to control the panic I felt rising up in my chest.  Both times, I felt desperate to talk to the person about whom the call had been made: the first time, my dad, and the second time, Nancy. I wanted to call one of the people already there but knew my call would be intrusive in the midst of what was happening there.  Both times I knew that there would be little to nothing I could do to make things any better, and yet both times I felt an almost indescribably pressing need to get there, a magnetic force pulling me east along the interstate.  As I drove, I thought about how odd it was that that particular day was just a regular day for the people in other vehicles I was passing along the road. 

I stopped for gas along the way both times, and, as the fuel pumped into the car, I texted others in my family to see what was going on and to report on my estimated time of arrival.  Both times I called Jennifer again once I got back on the road, and we talked about what we thought would be the quickest way for her to get from the airport to where I would be when she arrived.  Both times I heard the rising panic in her voice when she talked about having to be cut off from communication with the rest of us while she was in the air, and both times I assured her that I would take care of things until she could get there and that transportation would be arranged for her by the time her flight had landed.  Both times I told her that I believed she would make it there in time, and both times I could only hope that that prediction would hold true.

The first time when the call had come, my destination was my parents’ house, but the second time it was the hospital, one chosen by Nancy for her delivery because it was a different hospital from where we had been both times during my dad’s inpatient stays.  Both times when I arrived, I turned the car off and made myself take a few deep breaths before I hit the ground running.  Both times I was acutely aware that life for everyone in my family was about to change.

On both of those days, there was a flurry of text messages and emails being sent between family members across the country.  Both times, I knew my mom and my brother-in-law David were keeping things under control as I traveled, but I wanted to be there to see what was going on for myself.  After I had arrived and had checked things out, both times I reported in to the rest of the family, and only then did I feel like I could breathe. 

On both of those days, I considered driving to the airport to pick up Jennifer when her flight came in but was afraid to leave, and so both times I asked my aunt to get Jennifer to us as quickly as possible.  Both times I remember feeling relieved to be there but at the same time feeling restless, as if I needed to have something to do in the chaos of what was going on around me.  On both occasions, there was an air of surrealism in the knowledge of what was about to occur, and both times the room was filled with emotion.

Jennifer swept in with a sense of purpose like I’d seldom seen before in both cases.  Both times I watched her hug Nancy, David, and my mom, and then when she hugged me I felt such a sense of relief that she was there with us.  There was an intimacy in the room that is difficult to describe, one that created an odd sense of control in a situation that we knew could not be controlled.

The second time, the tears we cried were of joy and excitement and relief; the happiness in the room was like a salve.  Again, those of us in the room made phone calls and sent messages to others who weren’t there, this time with the news of a new beginning.

I Think The Myth Is A Myth

I spent a lot of time on the road during the ten weeks that my dad was sick, driving between my house and my parents' house and between my house and the hospital or the rehab center.  During much of the time, I listened to talk shows on radio stations like "NYU Docs."  Early one morning when I was on my way back home after having spent the night with my dad in the rehab center, I happened upon a talk show on the topic of the emotional aspects associated with aging.  The conversation broached the subject of terminal illness, and, before I really realized what I was doing, I had called in to the show and was on the air.  

"Stephanie from Tennessee is interested in finding out how to help her father who has recently been diagnosed with brain cancer," the host said as a way of introduction, and somehow I found myself on the air telling the short version of my dad's illness and asking for advice on how to address the emotional issues that were coming along with the changes and the challenges he was experiencing.  Right away, the host started talking about how we should be helping my dad to identify the legacy that he would be leaving behind.  As I listened to her talk, I felt a burning sensation in my gut for which I could not immediately identify the source; as the host made a few more statements and then closed the conversation, though, it hit me: she thought I was asking how to help him cope with his impending death.  I wanted to call back to tell her that my question was aimed at helping him have the best life he could, not the best death, but at that point I was crying so hard I knew my words would not be able to be understood.  I wasn't nearly ready to go to the depths of that subject yet, not for even a second, not on any level.  

Several days later I thought back to the words of the radio show host and thought that maybe I should remind my dad about some of the important things that he had done in his life so far - and also talk to him about his goals for the future related to accomplishment.  We'd had lots of conversations since he'd gotten sick about things he wanted to do (his Revised Bucket List), but maybe it was a good idea to broach the subject of what he felt he needed to get done, in whatever time he had left.

Looking back, that seems kind of ridiculous; knowing my dad as I did, I should have known that he would see that type of thinking as way too philosophical.  He was much more of the "just do it" mentality than the "talk about it/plan it out" type.  And he would probably never have been done; he would never have allowed himself to run out of items on his "to-do" list.  I can not at all picture him kicked back, thinking, "Well, I've done all that needs to be done in life; I'm just going to relax and do nothing for the rest of the time I have."  There would always have been one more challenge that he would have assigned to himself; that's just who he was.

The thing that made me remember back to that radio show and the conversations and thoughts that followed was an article that I read this week called The Myth of Finding Your Purpose.  I was expecting the article, written by a woman who had gone through cancer treatment, to be thought-provoking, and it was - just not in the way that I expected.

"Your purpose has nothing to do with what you do," the author says, and she goes on to explain that she thinks one's life purpose "is about discovering and nurturing who you truly are, to know and to love yourself at the deepest level and to guide yourself back home when you lose your way."  Reading these words, I feel that same burning sensation in my gut that I felt from the response of the talk show host on my interstate drive that day nearly three years ago. This time I can identify the source of that burning easily, though: it's anger, annoyance, and aggravation.  It's a fervent desire to dispute what she is saying, because I feel to the depth of my being that she is wrong.  She is wrong.

The purpose of life is connection; it's doing good, in whatever way and on whatever level works for each person.  It's erring on the side of kindness; it's experiencing gratitude; and it's doing what we can to leave the world a little better place when it's our time to go on ahead.  

The point she makes about the danger of only being able to feel worthy based on the feedback from others isn't new: that's called codependence.  Reading back through her article makes me want to get out my red pen and write in my own comments and corrections: for example, when she says, "When our purpose is external, we may never find it. If we tie our purpose or meaning to our vocation, goal or an activity, we're more than likely setting ourselves up for suffering down the line," I want to draw a little caret symbol in between the words "is" and "external" in the first sentence and insert the word "only," and I want to do the same thing in between the words "tie" and "our" in the second sentence and insert the words "all of."  While I'm at it, I'd like to do the same thing just before the word "goal" and squeeze in the words "or to the achievement of a specific" so that the declaration becomes "When our purpose is [only] external, we may never find it. If we tie [all of] our purpose or meaning to our vocation, [or to the achievement of a specific] goal or an activity, we're more than likely setting ourselves up for suffering down the line."  My point is this: despite the fact that people are going to disappoint us, that there will be times when we will feel that our efforts have gone unrecognized, and that sometimes we won't be able to do what we set out to do, in my opinion we need to do our best to, well, do our best to leave a positive mark - yes, an external one, because when we're gone, that's all that will be left of us.

Reading the rest of the article really only exasperates me even more.  To me, the platitudinal (not sure that's a real word, but if not it should be) bullet points about mindfulness of one's self, releasing all shame, and elevating one's own energy sound empty, or made-up, or both.  "To remember your holiness and treat yourself accordingly ... "  REALLY??  If I were buying what she's selling, I'd spend the rest of my days sipping a cold drink on a sunny beach and nothing more.  I'd be full of inter-connectness with myself, all right, but that's about it.

And to her last point: "What if your purpose is to bear witness to your suffering?"  As my dad would sometimes say in a Scooby Do voice, "HUH??" 

CLICK HERE FOR THE SOUND EFFECT I'M TALKING ABOUT!

Unlike the author of this article, I don't think that suffering is "essential;" I think it's most likely unavoidable, but those things aren't the same.  As I've said before, my family didn't need my dad to have to suffer in order to appreciate our lives or to love each other fiercely; we already had that going.  I'm not disputing her point that a person who feels fulfilled and loved is much more likely to be in a position to give back to others, but I just can't agree that a person's purpose is "about finding and nurturing yourself ... not an external ... accomplishment ... even if that ... is the most important discovery of all time."  I don't like the way she refers to some of the people she's met ("brilliant and effective activists," at that) as "messes;" my god, aren't we all in some way or another??  

As anyone who has read pretty much any of this blog or talked to me for any amount of time about perspective probably knows, I don't dispute the fact that inner peace is an important goal, one that can often be reached through having a certain perspective and by making choices about how our circumstances are viewed; I just don't think it's the most important goal in life, and I certainly don't think it's my only true life purpose.

For more food for thought, here's a video of a presentation by a speaker I think is very insightful and interesting:

Dr. Brené Brown at TEDxHouston

So Far Still To Go

One day last week I was driving home after a stressful day at work, and I started thinking about how I wish that I could call my dad.  There is so much going on in my life that I feel like I need to share with him, and the fact that I can't call him and ask his advice about some of it is still so hard to bear.  I could hardly finish the drive home through my tears.

I talk a lot about perspective, but I still have so far to go on this road.  I wish that I could feel that my time with my dad was enough; not feeling that way makes me feel like I'm not grateful or appreciative of the time I had with him or that I had him for a dad at all.  

Sometimes I still can't believe that what happened happened - and I can't believe that he's gone.  Damn I miss him so much.

"There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, deep contrition, and of unspeakable love." ~Washington Irving

Two Years Ago

Today I am remembering my family's Journey of Hope exactly two years ago, when we took my dad to The Preston Robert Tisch Brain Tumor Center at Duke University Medical Center in search of a treatment - or maybe even a cure - for brain cancer.

After Dad had gotten his first round of chemo and the "Magic Bullet" drug Avastin there, we spent the night in Durham, as we'd been told by the doctors that we had to do after the treatment in case Dad had any side effects after the first round that required medical attention.

We hadn't planned on staying that night originally; we had been told that we could get to Durham on the Monday before Thanksgiving, go to the first day of appointments at Duke on Tuesday, meet with the advisory team of neuro-oncologists on Wednesday morning, and then hit the road to travel the 500 miles back to my parents' house, in time to make it home that night so we could be there for Thanksgiving.  Our Back-up Plan was to drive part of the way back on Wednesday, spending the night at a hotel along the way and then getting up early on Thanksgiving Day to drive the rest of the way home.

But we also hadn't expected for the team to recommend that Dad start treatment there at Duke, right then.  And, since part of the deal for his doing that was that we stay in the area overnight, we agreed to stick around.  While I sat with Dad in the clinic as the medicine dripped into his veins, my mom and my sister Jennifer met with a hospital social worker to go over insurance coverage issues and other things; the staff at the Brain Tumor Center seemed much more well versed on several important matters like that than did the people with whom we had been dealing at the local oncologist's office.  My brother-in-law, Peter, who had taken a red-eye flight from California the night before to be with us in Durham, hastily searched the city for a hotel that had a suite-style room or two adjoining rooms - one of which we needed to be wheelchair accessible - available for that night.  Evidently, the night before Thanksgiving is a big night for hotels in that area, though, and the only hotel with enough available space for all of us to be in close proximity was not set up for handicapped access.  It was what it was, though, and so after a flurry of text messages back and forth between all of us, Peter booked the rooms and drove back to the hospital to pick up Dad and me, as Mom and Jennifer will still in a meeting there.

Once we got to the hotel, we got Dad situated in the wheelchair, and then I pushed him and Peter carried the luggage up to the room.  Dad wanted to sit in an armchair by the window in our room and watch TV ("It's way too early for bed," he said, as much to himself as to anyone.).  Peter went to the vending machine and got Dad a big bag of peanut M&M's and a Diet Coke, which he poured over ice into a styrofoam cup.  He put the goods on the table next to Dad, and then he and I took a look at the set up in the hotel room bathroom; I was very apprehensive about the fact that there were no grab bars (and essentially nothing else for Dad to hold onto) by the toilet, and, to make matters worse, the toilet seat was low, which would make it even harder (and more dangerous) for Dad to get up and down.  Peter and I decided that he would go to a drug store to try to find grab bars that could be installed temporarily; that seemed to be our only option at the time.

In the midst of our conference by the bathroom door, we heard a noise from the bedroom area where Dad was.  We hurried in and saw Dad nonchalantly sitting in the chair watching TV, with most of his drink and the majority of the M&M's spilled all over the floor.  "What happened?" I asked him.  "I didn't try to get up," he responded, which made me think that either he did and didn't want to admit that he couldn't do it, or he had no idea that I was referring to the fact that there was stuff spilled all over the floor next to his chair.  Peter grabbed towels from the bathroom, and, as he and I cleaned up the mess, I noticed that the table where the drink and candy had been was on Dad's left side, the side that was his dominant but in which he had impairment in sensation and strength because of the tumor.  It was evident that he had either accidentally knocked over the stuff on the table by just moving his arm, or he had reached for something on the table and knocked it over, or he had tried to get up out of the chair by pressing down on the only thing around him - the table- and then the table had tipped slightly, causing him to have to sit back down and the stuff on it to spill.   In any case, he seemed to have forgotten that anything had happened.  When he saw us cleaning up the spill, though, he started asking questions: "Did I do that?" and "Where is Vicki [my mom]?" and "When are we going home?" - and - the one that I thought was the most alarming - "Am I going to get chemo today?"  Shit, I thought.  I had been so hopeful over the last few hours as we heard from the Duke team about the benefits of their treatment protocol and then as I sat beside Dad in the Chemo Room watching him get the Magic Bullet treatment.  Now I was just scared, because with him not noticing or not remembering how he'd spilled and then with those questions, it seemed like he was getting worse.

But, as we had been doing during that time, Peter and I exchanged a look of concern, but we held it together and moved on to the next task at hand: while I sat with Dad in the hotel room, Peter drove to pick up my mom and Jennifer at the clinic.  He dropped off my mom back at the hotel and then he and Jennifer went on a quest for the safety rails, which, as seemed to be par for the course for us, turned out to be not nearly as easy as we'd thought it would be.  Traffic was nightmarish, and none of the drug stores in the area had what we needed in stock.  My sister tried to look up medical supply companies on her cell phone as Peter fought the traffic, but cell phone signal was sketchy.  Finally, they found a little hospital supply store that had the rails; they paid for their purchase and made their way back to the hotel.

Once back in the room, Peter and I looked at the directions for installing the grab bars and realized we needed a screwdriver.  He called the front desk and got connected to the hotel maintenance guy, who agreed to let us borrow one.  Peter handily removed the toilet seat, fastened the frame that was connected to the grab bar to the toilet, and replaced the seat.  Good to go.

The sun was just going down by that time, and Dad was already fighting sleep.  Like every night, he talked us into helping him into the bed and then talked about how he wasn't hungry but would try to eat something for supper and how he knew it would make for an odd sleep schedule to go to sleep that early but he was so tired he didn't think he could help it.

We let him sit up in bed watching TV as we came up with a game plan for what to do for supper. Peter volunteered to sit with him while Mom, Jennifer, and I went downstairs to the hotel restaurant, and we said we would bring food back to the room for the two of them.

I remember sitting in the restaurant thinking about just how surreal the whole situation was, from the fact that my dad had brain cancer, to the way his treatment had been started much more quickly than we'd anticipated, to how we'd been directed to stay in the area for an extra night, which meant we wouldn't make it back in time to join in on the Thanksgiving feast with the rest of my large extended family who had been expecting to celebrate with us after our trip.  As we ate, we talked about what a whirlwind the trip had been, how grateful we were that the Duke team seemed to be in our corner, and how hopeful we were that the treatment would help.

After we'd gotten back to the room and Peter and Dad had eaten, Dad announced that he was going to sleep, which was a cue for Peter, Jennifer, and me to retreat to the hotel room next door.  We positioned the door between the adjoining rooms so that it was almost closed, so we could hear if we were needed in my parents' room but so that we could whisper in our room and not disturb my parents.

As usual, Dad had to get up a few times during the night to go to the bathroom, and we were glad for the grab bars each time.  Because he had been started on the chemo pill just after he had the IV treatment that day, we had been instructed to be sure that the lid of the toilet was closed each time before he flushed and to make sure he thoroughly washed his hands after using the bathroom to protect him against toxic chemicals (Doesn't it seem weird that they were having him ingest the chemicals but he had to take extra precaution to avoid being exposed to them externally?).  We tried prompting him through the bathroom door to remind him, but, because he didn't always listen to us before he did something like flush or try to stand up by himself, eventually my mom just started going in there with him to be sure that he was following the safety procedures.

The next morning, on Thanksgiving Day, everyone but Dad woke up early and packed up our gear; we were eager to get started on the drive home.  We had a hard time getting Dad up and getting him ready; he wanted to have his face shaved, and it took major negotiating to skip it so we could just load up and go.  It was quite the antithesis to his usual tendency when it came to starting out on a road trip; every other time, he was the one getting up early and urging the rest of us to hurry.

Many restaurants and even some gas stations were closed along the way on the long drive home, and, by the time we finally made it back to my parents' house that night, we were hungry and exhausted.  We ate leftover Thanksgiving food that had been packaged up and put in the refrigerator for us after the big family meal that we'd missed.  Dad ate a little turkey and dressing and then went to bed; as usual, though, even with as tired as he said he was at the beginning of the night, he had a hard time sleeping and battled a headache all night, finally falling into a medicated sleep just before the sun came up.

The ringing of my parents' telephone woke us up early the next morning; it was a nurse from the nursing home where my grandmother was calling to tell us that Grandmom had taken a turn for the worse.  My siblings and I hurriedly got dressed and drove to the nursing home to be with Grandmom, and the challenges continued all day long.  A cold front had come through overnight, and it was very cold and windy outside, which added to our problems, especially during the family photo shoot.  

When I think back to that day, one of the most difficult days of my life, I remember the brutal cold, the confusion, the fatigue, and the extreme concern about Grandmom, but what I remember most is how hard Dad worked to take part in what was going on around him - and the feeling of love between all of us.  I remember noticing how difficult it was for Dad to tolerate the cold weather as he was helped out of the car, as he sat in the wheelchair for pictures to be taken, and as he was helped back into the car so he could get back home.  Like a lot of things going on then, the photo shoot seemed almost dreamlike: for as much as I was in denial about the prognosis of the brain cancer, I guess some of the reality had sunken in because not long after the news of his diagnosis had been given to us I scheduled a family photo shoot for the day after Thanksgiving, knowing (desperately hoping?) that the whole family would be together then so that we could have our picture taken, all together.  

We made it through the photo shoot and through the next couple of days, trying to keep all of our spirits up as we watched over Dad and Grandmom.  

I don't remember a lot from the time my dad was sick, including the details of what else we did over that weekend, but I do remember that I felt a sense of unease (even more than usual) when I left my parents' house that Sunday.  I really wanted to be present when the "magic" we had been promised happened; I envisioned Dad suddenly standing up from the bed or his recliner, steady on his feet and with clarity in his eyes and a smile on his face.  But more than I wanted to be there to witness first-hand the miracle, I just wanted one to happen.  I wanted to see the fulfillment of the cause-and-effect; I wanted the promise of the hope that we had to be realized.  It had been a whirlwind past few weeks, especially the one leading up to Thanksgiving, and I was exhausted both mentally and physically, but I was so very thankful for the love and the time together that we had.

Missing Him

A couple of weeks after my dad died, a friend of mine who had lost her mother a couple of years before that told me that the thing that left her with the most sadness since her mom's passing was thinking about the senses associated with her mom.  I didn't really understand what she meant at the time; I wasn't able to isolate what the worst or the most difficult part of all of it was because it all seemed so unbelievable and so horrible at that point.

I know now what she meant.  Thinking about my dad's hands, his legs, his wrinkles, his face, his voice, his laugh, his smile, his eyes - all of his physical presence - and how I'll never be able to be around them again makes me feel so sad, so lonely, and so very desperate.  

Sometimes I get a little glimpse of what I think for a split second is my dad, and in that moment I am like a drowning person struggling to get back to the surface of the water for air.  

About a month after my dad died, I was driving to work and saw a man that resembled him driving a car just like his.  I had to pull over to the side of the road and catch my breath.  

For months after he went on ahead, I woke up in the middle of the night and thought I'd heard him calling my name, just like he did so many nights when he was sick.  

As I sat crying on the night of the six-month anniversary of his death, I picked up my cell phone and impulsively texted "I love you" to the cell phone number by his name in my list of contacts.  A few minutes later, I got a response that read, "Who even is this?"  I felt like I'd been sucker punched.  Part of me wanted to text back, "Dad!! It's me! Are you ok?"  but I just kept sitting there crying, and after a few minutes another message flashed on the screen that said: "I think you have the wrong number."  

Several times when I've heard a group of people singing, I've thought I could pick out the sound of his voice singing above all the rest.  Each time that has happened, I let myself look into the crowd, just to make sure.

About six months ago, I posted the last part of the Behind the Scenes Story on this blog.  The song I chose to link to at the end of that entry was Pink Floyd's "Wish You Were Here."  My husband, who, incidentally, doesn't usually read this blog, invited me to take a spur-of-the-moment trip to Natchez, MS, with him a few days later.  While we were there, we asked around to find out where a cool bar was and ended up in a bizarre little place that was literally built into the side of the levee, a pub called Under The Hill.  

Only a few minutes after we walked in and sat down on our barstools, a guy started playing his acoustic guitar, and his first song was that exact Pink Floyd song.  Luckily, the darkness of the room hid the tears that rolled down my face as I sat there and listened in awe to the music.

This past summer, we had an accidental "iCloud" syncing of all of the Apple devices in my household, and all of our Contact Lists were blended together.  I didn't think too much about it until a few days later when my phone rang and I looked at the screen to see that it was showing up as "Dad" calling.  Evidently, my daughters had my husband's phone number listed under "Dad" in their Contact List, and so the iCloud sync had added that into my phone so that my husband's call showed up that way on my phone.  In the split second it took me to realize what had happened, part of my brain actually believed it was my dad calling me, and I felt my heart sink into my stomach when the reality of what was really happening dawned on me.

On the night before we left to take my older daughter to college for the first time, I was sitting outside on my deck and noticed that the wind was blowing through only some of the branches of one of the many trees in my backyard.  It was kind of eerie, and the words, "Hi, Dad," went through my mind.  About 15 seconds later, an owl hooted from in the woods behind my house.  I couldn't see it, but I exchanged a "Hello?" with the owl several times before the hooting and the isolated wind-blowing stopped.

A couple of weeks ago when my family was in New Orleans, I took my younger daughter and her friends to see the hotel where my parents stayed every February when they went for a business convention.  There, by the fountain in the lobby of the hotel, I thought for a split second that I saw my dad out of the corner of my eye, but, when I turned to look more closely, there was no one there.  

On the surface, it seems like getting a tiny glimpse or feeling a split-second connection to a loved one who has gone on ahead would be soothing, and maybe one day it will be for me - but now it mostly feels like salt (or something even worse) being poured in a wound. 

"Although their physical form is gone, you are not living your life without him or her. To live truly without them would be to never have known them. Instead, you continue to live with them infused in your heart, in your memories, in your spirit. You live with their love etched into your being. They will always, now and forever, be a part of you."