One More To Go

I can only think of a few times in my life that I witnessed my dad reacting to a situation in fury: one of those times was on Halloween night when I was about 11 years old.  

That night, for the first time, my parents had allowed me to go trick-or-treating with my friends, without an adult.  When we had knocked on enough doors to fill our pillowcases with enough candy that we were ready to call it a night, we went back to my friend Curt's house about a quarter of a mile away from my house, and then we all left from there to go home for the night.

I think some kids' parents picked them up and other kids walked or rode their bikes in a different direction than the way I went.  I hopped on my bike and headed off toward my house under the patchy beams of the streetlights. When I was about eight houses away from my own, I saw my dog trotting towards me; when she saw me, she turned and ran alongside my bike.  We continued along that way until suddenly from out of the shadows came two people wearing costumes and masks.  Both had a can of shaving cream, which they squirted into their hands and threw at my dog and me, chasing after us and doing the same thing over and over again until both my dog and I were covered in soapy foam.

By the time we'd made it to my driveway, I was crying, both out of shock and anger and because the shaving cream that was running into my eyes was stinging.  My dad was in the kitchen when I came in.  He looked up and saw me crying, and I saw his jaw clench as he stood up.  After I had told him what had happened, he told my mom to get a towel for me and my dog, and then he stepped outside and slammed the door behind him.  I wasn't sure what he was planning to do: it wasn't too often that he saw me crying or that he slammed a door like that.

I was still trying to get the shaving cream out of my hair a little bit later when the front doorbell rang.  When my mom and I answered the door, we saw two boys standing on the front porch just in front of my dad. After they sheepishly looked in my direction and told me they were sorry, my dad quietly said, "You still have one more to go" and then he marched them around to the side of the house and my mom and I heard them apologize to my dog.

I'm not sure what has made this event stick out in my memory for so many years: it wasn't the first time that I had seen my dad stick up for someone who needed help, and it wasn't the last.  It was one of a handful of times that I can remember him jumping in and fighting a battle for me, though, instead of encouraging me to handle it myself, and, although I don't think I ever told him, I appreciated the way he handled it because it somehow didn't leave me feeling ashamed or afraid.  

The good old days, when kids created their own costumes out of old clothes and scraps of material - or, as in my sister Nancy's case, they just wore their superhero underwear

The Sweetness of Life

There are some things that so easily serve to bring us joy in life, to make us remember that we are lucky to be wherever we are, to show us perspective if only we are willing to see it:

A ray of sunshine breaking through the clouds after a storm

The sound of shells tinkling that can only be heard in the stillness underneath the ocean

The sweet surprise on a newborn baby's face when his eyes focus on something for the first time

The taste of too-strong kool aid

The sound of a grandparent singing a made-up song to a grandchild

The sound of siblings laughing at something only they recognize as funny

The drop of one's stomach on that first downhill of a roller coaster

The sight of a loved one's face in a photograph

The sound of crickets on a summer night with no curfew

The tears of pride that come from witnessing your child show kindness to another person

The pride felt as the National Anthem is played during an Olympic medal ceremony

Hearing a song on the radio that holds special meaning

Seeing the color of a flower as it's just begun to bloom

Seeing a baby smile in his sleep

Smelling honeysuckle, wisteria, or hyacinths at the start of a new season

Opening a new book, full of anticipation for the words ahead, and

Closing it later with the swell of satisfaction from the read.

Mustering up the courage to set a goal, to try something different and new, 

With a parachute of surrounding support from friends and family.

The Hitchhiker, Part 1: The Gift of the Story

As I have learned since my dad went on ahead, one of the greatest gifts that can be given to someone in grief is talking to him or her about their loved one: telling a story that involves the person who has died, sharing something you remember about that person, or talking about a quality that person had or a deed he did that you appreciated can be a priceless treasure.  It doesn't have to be a significant account; sometimes something funny or unique that person did is just what the person who is grieving needs to hear.

Not long after my dad died, my mom, my husband, and I went to the Mid-South Grain Association meeting in New Orleans, or simply "Mid-South," as my dad called it in general conversation.  Dad was in charge of organizing the convention there every February, and we went after he died to represent him in a way.  My mom kept up with the administrative duties that she had assisted Dad with for many years, but, as I came to find out, it was as helpful for us to be there amongst many people who had known Dad for years - some for decades - as it was for them to have Mom filling in at the registration desk.

The highlight of the trip for me was listening to one of my dad's long-time friends and previous coworker talk about some of Dad's antics from "back in the day."  Some of the tales I had heard before, mostly from Dad himself, but others I had never heard, and I felt comforted by all of them; it felt almost as if I was getting a piece of my dad back for just a little while.

Like a lot of people, Dad was a work hard/play hard kind of guy.   But the thing that I think made him unique in that area - at least from what I have gathered from seeing him interact with people professionally and from listening to what others have said about him in a business context over the years - is that he was often able to make the work environment fun for himself and for others.  For starters, he never hesitated to laugh at himself, and his interest in everyone around him was genuine.  Never did he miss an opportunity to say hello to or to compliment or express interest in someone else; the way he assumed that pretty much everybody had good intentions somehow seemed to result in that becoming a self-fulfilling prophecy.  He delighted in clowning around when time and the situation allowed; I don't know that he learned about the benefits of fostering a positive work environment in a formal setting, but he certainly applied the principles all the same and always seemed very popular with his employees because of it.

"Cotton Row" on Front Street in Memphis, Tennessee

Here's the story that my dad's friend told us from back in the early 70's, when my dad worked at a company with an office that was located in downtown Memphis:

One Friday, some of Dad's clients had come to Memphis from out of state, and he was in charge of entertaining them that night.  My mom had driven with my sisters and me to her parents' in Nashville for the weekend, and Dad was planning to drive to meet us there late that night after he had taken the customers out on the town.  He worked until closing time and then met them at a restaurant down the street from his office.  As the story goes, the dinner turned into more of a party than Dad had expected, and when it was over he returned to the office since he had parked nearby.  Evidently, he was trying to ward off the headache he thought he'd be getting the next morning and so he walked over to his desk to get to his bottle of aspirin.  Unfortunately, though, the floors were in the process of being redone, and Dad left footprints on the adhesive backing that had been laid down in preparation for the tile that was going to be installed the next day.  Apparently there was much laughter the next morning and later some friendly ribbing about the fact that everyone could tell who the culprit had been since the tracks lead straight to his desk, where several aspirin tablets were spilled on the desk, and then back to the exit door.  

As Dad himself later told the story to his friends and coworkers, after he'd gotten into his car and then started driving on the interstate headed towards Nashville, he realized that he'd had too much to drink to be driving.  As luck would have it, soon after that he saw a hitchhiker on the side of the road. Necessity being the mother of invention (and of innovation), Dad pulled over and rolled down the passenger-side window to ask the guy if he could drive and where he was trying to go.  "Sure, I can drive," the guy said, and then he added, "I'm hoping to get to Nashville tonight."

"Well, get in, then," Dad told him, probably smiling from ear to ear and thinking he had struck gold. "I'll be asleep in the back; wake me up when we get there!"

I doubt he told my mom about the details of that trip for quite some time after it happened, and it wasn't until after his death that my sisters and I heard the story.  I could picture it happening though, and hearing the tale was a much-appreciated gift, one that I will always treasure.  And it wasn't Dad's last interaction with a hitchhiker either, ...

To be continued ... 

Measuring the Course

As far back as I can remember, one of my dad's routines after he got home from a long run was to immediately jump into the car to drive the route he had run to measure the exact distance of the course.  (This was WAY before GPS systems existed.) Most people would probably choose to sit down to rest as soon as they could after a strenuous workout, but Dad was the kind of person who couldn't stand to let grass grow under his feet.  He taught us to have honor and priorities, to set goals, to set our mind to doing things and then to follow through. WAY before Nike said it, he used to say “Just Do It” whenever he heard someone make an excuse for not doing something they should have been doing; I remember so many tough runs when he would tell me to tuck in behind him so that he could block the wind for me after he'd said “Put your head down and let's just do it.”

If Dad could have “driven the course” at the end of his life, if he could have had the opportunity to examine what he had done and the choices that he had made along the way – I wonder to what he would’ve made adjustments.  Not much, I would venture to guess, and I think that’s pretty damn remarkable.  I'm not sure there are many people in this world who would be able to say the same.

Here's a question with some Food for Thought: What would your biggest regret be if today was your last day of life, and how can you attempt to right that regret?

Bronnie Ware is an Australian nurse who spent several years working in palliative care, caring for patients in the last few weeks or months of their lives. She recorded their dying epiphanies in a blog called Inspiration and Chai, and later she put her observations into a book called The Top Five Regrets of the Dying.  Ware writes of the clarity of vision that people often acquire towards the end of their lives and of how others can learn from their wisdom. "When questioned about any regrets they had or anything they would do differently," she says, "common themes surfaced again and again."

Here are the top five end-of-life regrets, according to Ware:

"I wish I'd had the courage to live a life true to myself, not the life others expected of me."  Looking back over the course of their lives (measuring the course), people often recognize that certain dreams they've had that have not been fulfilled, making this the most common regret of the dying.  And, as we learned when my dad got sick, by the time a person realizes that he needs to hurry to try to realize those remaining dreams, his health (and sometimes other obstacles) often restricts those goals from being attainable.

"I wish I didn't work so hard." Ware says that this was a regret shared by every male patient she cared for (and some of the women too).  What they wished they had done instead of staying late at the office so many times was to have gone to their children's ball games or school programs or to have spent more time with their spouse or other loved ones.  

"I wish I'd had the courage to express my feelings."  Ware says that many people reported that they had suppressed their emotions in order to keep peace with others.  They regretted not having told someone that they were angry with them - or that they loved them.  Sometimes this is a regret that can be addressed in the final stages of life, but many times the years that have passed since the issue began make it impossible to right on down the road.

"I wish I had stayed in touch with my friends."  In the midst of our hectic daily lives, it's easy to lose track of people who have meant so much to you and whose impact you may not realize until it's too late.  Again, sometimes when the person who is dying expresses this regret, loved ones from the past can be contacted, but many times it isn't possible.  

"I wish that I had let myself be happier."   The realization that death is near can give a person new perspective on things, and one of the things that is commonly realized is that happiness is a choice.  The clarity that often comes at this stage of life helps people to see the good in their lives much more clearly than they did before.  Other things like material goods no longer seem important.  People do want to get their financial affairs in order if possible, but it is not money or status that hold true value for them as they near the finish line - it's love, both given and received.  

Open to Hope

Last fall, a blog entry that I wrote got published on a website called Open to Hope.

Click HERE to read the article.

A couple of days ago, I received an email from someone who had read the entry and had left the following comment:

I was so touched by your article and the statements from the other readers.  I am writing because my husband has a brain tumor, glioblastoma, perhaps what your father had.  This is heartbreaking for our twins age 19, away at college, and I am wondering if there are some things we should be doing now to prepare us for the special occasions, holidays and even just the really sad times when he is no longer here.  He is still fairly lucid and would be willing to do something to make it less painful for all of us but I would need to help him as his vision is very poor and he can no longer write legibly or use the computer.  We have come up with some gifts to give the kids from him when they graduate from college, get married have children etc, but there are so many other times in between the highlights of their life when they will miss them.  We had him with us this Xmas but it is unlikely he will be here for the next one.  We still have some time and I don't want to regret missing opportunities while we still have him with us. If you have any suggestions I would really appreciate it.  Thank you.

Wow, that's a tough situation and a difficult question to answer.  Knowing what a tough experience her family is having to go through is heartbreaking; it brings back so many memories and brings forth so many emotions from my own family's experience.  I want to help, but I'm far from an expert on the subject of coping; all I can do is to offer suggestions based on my personal experience and my perspective at this point on the timeline.  

I will tell her that my dad did have the same kind of brain cancer, glioblastoma, or "GBM" for short, an awful combination of three letters that brings devastation to people in a matter of seconds.  I will say that what I've figured out since my dad's death is that it is possible to pull out the silver linings of a terminal diagnosis; in no way does doing so diminish the pain and the hardship of going through it, but it does allow for opportunities to do some things that are very valuable, things like making memories, even just in the midst of everyday things, so that you can hold onto those (hoarding memories, as I have called it), things like helping the person who is sick tie up loose ends, and things like saying things such as I love you and I am a better person for having known you and thank you - and, eventually, goodbye.

A few books that may be of use in such a situation are Dying Well by Ira Byock, Final Gifts by Maggie Callanan and Patricia Kelley, and On Death and Dying by Elisabeth Kubler Ross.  I wish I'd read them in time to help my dad; written from a perspective of those who have done hospice work for decades, these books are full of information about what often happens when a terminal diagnosis is handed down.  

Something that I was surprised to learn after my dad's death is that there is a natural process that occurs as an individual nears death, and, while each person is unique, the dying process is nearly universal.  Many people find it helpful to know what to expect during a typical dying process. She can tell her husband that she is willing to discuss any concerns he may have or that, if he would rather have those conversations with someone else, she will find a person for him to talk to.  My dad asked me what I thought it was like to die, and, when I answered him, I tried to focus my answer on what I thought his main fears about the process were, which, for him, were related to pain and worries he had about leaving my mother and my siblings and me behind.  I don't know if what I said was right or not; I just knew that his distress needed to be addressed.  I can't imagine how scary it must be to have all those fears about dying and, even more so, to feel like you might inflict even more distress on your loved ones by voicing those fears.

But more than how to handle the logistics of her situation and the anticipatory grief and the emotions that come along with it in such a situation, this person is really asking two things: first, how can she help her husband emotionally as he prepares to leave this world, and, second, how can she help her children and herself, especially with regards to after he is gone?

First, let me say that, while the diagnosis of both her husband and my dad were the same, my family's situation was different from what it sounds like hers is.  My dad was "lucid," in that he could speak clearly and could understand the words that were being said to him, but he had fairly severe problems with his short-term memory and his attention span.  He was told by doctors that the prognosis was two years at best, but he was also told by them (and by us) that it wasn't unreasonable to believe that he could beat those odds, at least to buy more time.  There was a lot of denial by all of us, I think by the medical team too, about the fact that his time might actually be as limited as that general 1-2 year time frame, so much so that, coupled with the frantic pattern of caring for him 24 hours a day and the decline that happened so much faster than anyone would have ever believed, we didn't think much about those two questions while he was sick.  I wish we had; I wish we had had the time to figure some of that out.  All that to say, though, that what I have to offer in terms of ideas to address her concerns is from my hindsight type of perspective, not from what we actually did.  What we did do related to those two areas happened quite by accident.

I think it would be a good idea for her to talk to her husband about what his goals are from this point forward.  Like I've said in telling the story about my dad's illness, though, that Bucket List type of discussion is probably going be vastly different than it would be for a healthy person; the best you can do in such a situation is to come up with a Modified Bucket List to work towards.  Like my dad did, her husband is probably having to deal with medication schedules, doctor's appointments, and possibly some treatment plans.  Hopefully, though, unlike my dad, he has had less of a change in his physical abilities and his cognitive abilities, which may allow him to do some things like travel or even just socialize with friends and family without it being a major source of stress or a logistical impossibilty. Each person's goals are likely to be different, but clarifying them and putting them into some sort of order by priority and feasibility are important in any case.

There’s such a feeling of urgency when we are aware that time is short, and it can be overwhelming and stressful for a caregiver to feel like you need to fulfill every desire and help your loved one cross off everything on his to-do list in that limited time.  It's natural to want to make every day into a special event, but, as I have learned, very often the wishes of those who are very ill are much more simple than big vacations and major events.  I've heard of people hoping to be able to go to a family reunion, or to go camping, or to go horseback riding, or, like my dad, to go to a beach or even just to see a movie.  Sometimes even things like that require planning, and sometimes family members have to ask for help from others to make these things happen, but thinking in terms of lower key type of arrangements can give everyone something to look forward to and can serve as an opportunity for memories to be created.

That said, though, so many special memories can be created in everyday moments that sometimes it isn't necessary to plan something like a trip or a Bucket List type of adventure.  I have found that I am comforted by thinking back on the times my dad and I just sat around talking about the past or current events or funny things during the time he was sick; sometimes it's ok just to sit in silence and hold the person's hand too.  The everyday moments can be just as important as the big-deal moments; many times, just being present with the person who is sick can be comforting and meaningful for both of you.

In my dad's case, when he first got sick, we tried to view a day as A GOOD DAY as one during which he was able to do at least one thing he NEEDED to do and one thing he WANTED to do; later, when he was even sicker, in some ways I think we struggled to consider a day as a good day when he didn't have an overwhelming amount of pain (mostly headaches) and/or anxiety.  As we learned in a crash course, it's all about perspective.

People often seem to think that talking to someone with a catastrophic illness about their diagnosis or their impending death will upset that person more; however, from what I've been told and from what I've read, the opposite is actually true.  In fact, sometimes the person who is sick may be hesitant to bring up difficult topics like those with their family members for fear of upsetting their loved ones more.  But there are bound to be questions, and thoughts, and emotions that need to be shared, and sometimes a certain degree of peace can come from talking about those hard things or to admitting one's feelings about what is going on and what's going to happen.  The books I mentioned address how to broach those tough subjects in the most compassionate ways.  

In his book The Four Things That Matter Most, Dr. Ira Byock discusses what most people define as being the most important things to say before they die: "Thank you," "I forgive you," "Will you forgive me?" and "I love you." Two of the four phrases are about forgiveness, emphasizing how important it is to offer and receive it before we die.

I have heard that men and women have different types of end of life concerns.  Men seem to focus on finances ("Have I provided for my family adequately?") and things that are physically left undone at work and/or at home.  This was certainly true for my dad, and it caused him a lot of anxiety during the time that he was sick that only got worse as his condition did the same.  Women, on the other hand, seem to tend to worry about the emotions of their loved ones and the logistics of things, especially those things that they have taken care of for their loved ones, like gift giving and planning events.  I wish we had been able to address my dad's concerns directly in such a way that he could have understood and been comforted by that information, and I hope that is something that this woman is able to accomplish in her situation.

I love the idea of helping the person who is sick to buy gifts for people to be given at certain points in the future when he is not likely to be around.  I think that is likely to be therapeutic for both the giver and the receiver, and it's a very touching gesture that will comfort those left behind.

I also think she should have conversations with her husband about his goals for his legacy.  I think most people want to leave some sort of legacy in life; we all want to be remembered because being remembered means that our lives had meaning and significance to someone other than ourselves.  Maybe it's something he accomplished professionally, maybe it's something he did that will continue to impact people long after he's gone, maybe it's a character trait that he has that others can try to emulate, or maybe it's something else that he will be remembered for.  She should talk to him about how his legacy will be carried on in the future, even by people he doesn't know who have come into contact with the people who have known him (the "rippling" concept).  I suggest that she ask others in his life to tell stories about things they enjoyed doing with him, things they admire about him, things they will remember, and/or how he has affected them; as we found out after my dad died from comments made by many people who had known him, sometimes one's legacy is different than they or people who knew them in a different context may think.

I've heard that many people who are at the end of their lives tend to want to talk about their regrets, accomplishments, hopes, and dreams.  Doing a life review is a way to bring closure to the person who is ill, and it can also serve as a legacy of life to the person's loved ones.  There are several ways this can be recorded for posterity: 

*A MEMORY BOOK can be created in one or more different formats.  A simple photo album or a more modern version created online through Shutterfly or a similar website can be a wonderful memento.  A scrapbook can be made by using photos and other items like ticket stubs, menus from special dinners, or personal notes.  A book of memories can be completed by filling in information in a published book like THIS ONE or just by jotting down or dictating memories, thoughts, and ideas in a notebook a little bit at a time. 

*AUDIO TAPES can be a wonderful thing to leave to loved ones and may be able to be produced more easily and more privately than dictating for someone else to write down messages.  Loved ones often miss hearing the voices of their departed friends and family members.  By recording tapes for those they leave behind, terminally ill patients can know that whenever their survivors are missing them, they can simply pop in a tape and hear their voices.  I've heard of people who have recorded themselves reading favourite bedtime stories, singing lullabies, or simply talking for their children or grandchildren (or future grandchildren) to listen to later.  Tapes can be made for friends and family members, individualizing the messages for each recipient.  One thing I will say is that even though we didn't record my dad while he was sick, we have some recordings of his voice from before he got sick that are absolutely priceless to us.  

*VIDEOTAPES may be the ultimate way for the terminally ill to leave their loved ones with little pieces of themselves. Similar to the process for creating audio tapes, a video camera can be set up and turned on for the person who is ill and then the person can be given an opportunity to have his message delivered in private.  Again, different videos can be produced for each loved one, with the emphasis being on making them as personal as possible.  Parents who know that they will miss important milestones in their children’s lives can prepare videos offering the advice they had hoped to deliver in person. For example, a dying parent may prepare videos of themselves talking to their children about the importance education, being true to yourself, finding lasting love, or prioritizing the important things in life. More than anything, these videos should be used for the terminally ill to express themselves and the feelings that they have for those they will be leaving behind.  

*WRITTEN LETTERS (or those that have been dictated and then written on the person's behalf) can be used to offer kind words, to share advice, to provide encouragement, or simply to declare one's love for another person. Such letters are sure to be treasured and kept as special remembrances of a life that ended too soon.

It has been said that as long as one person holds memories of someone, they are not really gone. Losing a close friend or family member is one of life’s difficult realities, but most people keep their departed loved ones forever near by thinking back over the times that they shared. Creating tangible memorabilia can reinforce those memories, helping survivors to keep loved ones a part of their lives.

One more thing I'll share is a link to a website that has great info about how to cope with end-of-life issues for people with brain tumors:  BRAIN TUMOR HOSPICE.

In closing, I will say to the woman that, when faced with the most difficult situation that she has probably ever faced, all she can do is to try her best.  Accept help from others; ask for help when needed.  Keep a Notebook of thoughts, questions, appointments, inspirational quotes, anything that might be something she needs quick access to and/or that might be good to remember in the future.  Take photos of your husband along the way, with other people and by himself, maybe even of things like his hands or him facing away from the camera, to create memories in a visual format.  Make an effort to take note of everyday joys, don't be afraid to just sit silently and enjoy each other's presence, and cut yourself some slack and take a break on a regular basis.   

I am going to wait a couple of days before responding directly to her message, and I'd love to get feedback from others who have opinions about the subject of what else she may want to consider doing.  Please comment below if you have any ideas on anything else I should add!!

The Tears That Followed

When I was growing up, my parents used to tell me that even if you have to have a good reason to cry, at some point you need to stop crying and move on - or you risk running out of tears.  I'm not sure if I totally believed them or not, but regardless I have never been much of a crier, until my dad got sick.  Since the time of his diagnosis and even more so since he went on ahead, I have officially become a crier.  And today, I'm here to say that evidently what my parents told me decades ago about running out of tears isn't really true - the tears do not ever dry up.  

On the night my dad went on ahead, when they took his body away, there was a sense of utter bizarreness, almost of an unearthly quality.  It felt like everything was happening in the midst of a fog.  Afterwards, somehow - probably from sheer exhaustion, both physical and emotional - my mom, my sisters, and I all slept for a few hours that night before we had to get up and start planning for the funeral.  Once we had made it through that, we knew we had to make ourselves eat, even though none of us felt like eating, and so we stopped by a pizza place on the way home from the funeral home.  "This is so surreal," I kept thinking, and it really was.  My brother arrived from out of state not long after we got back to my parents' house after lunch, and, after awhile, we resolved to do something instead of sitting around the house crying or in a daze.  

Someone suggested we go to get our nails done at the nail place near where my parents lived, the same place where my mom usually went and where we had taken my dad just after he'd gotten out of rehab, on the day before we'd left to take him to Duke.  

"Was it only six weeks ago that we were here with Dad?" I thought, with tears in my eyes, as we walked into the nail place.  When the woman who worked there and who knew my parents looked up and saw us, she asked, "Where's your dad?"  I couldn't bring myself to say the words "he died," and so I just stood there until my sister Jennifer said, "He didn't make it."  The woman and the other staff members there were very nice; I was grateful that they just expressed their condolences and then moved on to other more casual topics instead of asking for details.

I don't remember much from over the course of the next few days, just bits and pieces and feeling lots of sadness and confusion.  I was grateful that my family was there together and that many of our extended family members and friends had come to the memorial service, but the shroud of despair was so pervasive that it was impossible not to retreat into bouts of stunned silence and driving tears, both at regular intervals.  

It was really tough to leave my parents' house that Sunday; I wasn't sure how I was going to get through walking back into my house, when the last time I was there things were so very different.  I was operating on auto-pilot, I'm sure.  I remember one of my friends from work texting me that Sunday night to express her condolences and to suggest that I take some time off work; no, I told her, it's better if I keep busy.  I couldn't stand the thought of sitting in a quiet house with nothing but my thoughts and my tears.  

Looking back now, I think it's odd that I didn't think I should take any time off from work.  The ten weeks preceeding my dad's death while he was sick and certainly his death itself were the most traumatic experience of my life, and I was exhausted, hurt, and in shock.  So much so that I thought going right back to work was a rational decision.  But, as it turned out, I ended up with two extra days off, and I didn't have to spend them alone, because it snowed enough to warrant two snow days off from school that Monday and Tuesday.  I felt like Dad had sent me a gift, so that I didn't have to go back to work right away and so that I was able to grieve in the comfort of my own home with my kids there with me.  

I have this photo saved on my
computer under "Snow From Dad."

After that, though, I tried to hit the ground running.  I guess I somehow thought it would be back to business as usual, even though nothing felt "normal" at all to me.  In reality, though, I was in a daze much of the time.  The emotional pain, and the physical pain that came along with it, were almost more than I could bear.  The physical effects - the body aches, the back pain, the crazy appetite, the insomnia - were a complete shock to me; I had never heard that those things are part of the grief process, and they all compounded the difficulty of trying to cope with the sadness and the other emotions. 

A far as I can remember, I functioned well enough at work, but it was at a much slower than usual capacity.  Some days it was all I could do to get dressed and drive to work, often while crying, to fake being ok for the duration of the work day, and then to make it back home.  It was as if I was just going through the motions from the time I got out of bed in the morning until the time when I could get back in it in the evening.  At home, for the first time in my life, I let others take care of things like dinner and laundry and paying bills.  I often couldn't sleep at night; I spent a lot of time wishing with all my might that my dad would at least come back to me in a dream, and I was unbelievably tired.  Tired from not sleeping, tired from the grief, tired from crying, and tired from trying to keep it together.  It was beyond my capability to make plans or even very many decisions; I felt like I couldn't think straight or keep track of things, and in some cases I just couldn't make myself care about a lot of things that were going on around me.

If I had to choose one word to describe myself during those first weeks or maybe even months after Dad went on ahead, it would be "depleted." As I had done while my dad was sick, I read about brain cancer; sometimes it made me feel better, but mostly it just made me angry and sad and so I started to read about grief instead.  Eventually, I found my way to a grief counselor, and my sessions with her helped a little in that she told me each time I saw her that what I was feeling was "normal" and in that attending those sessions eventually led me to writing.  Sometimes I still wasn't so sure, though, that I was doing anything right or that I was going to make it through any of the pain, but I just kept plugging away, getting through the days and the nights, one at a time, because that's all I knew to do.

Dr. Albert Schweitzer said that he found there was “a fellowship of those who bear the mark of pain,” and that “sensitivity to human suffering does not stand alone and rootless.” We have all stood over different graves and have had different beliefs as to the fate of our loved ones, but our tears remain a universal constant and need no translation.

Sorrow makes us all children again – destroys all differences of intellect. The wisest know nothing.”

~Ralph Waldo Emerson

One More Conversation

I recently read about how sometimes people who are going through the grief process think about what it would be like to have one more conversation with their loved one.

Thinking about that is complex for me, because, as far as I knew, my dad didn't think that he wasn’t going to survive his cancer diagnosis, and so the things that I'm guessing typically come up in those one-more-conversation type of exchanges weren't on the table for us to talk about when he was sick.  We didn't talk about end-of-life kinds of things during the ten weeks we had after his diagnosis; honestly, I don't know that any of us could have withstood that type of emotional wrenching, including my dad.  He knew that we loved him, and we knew that he loved us, and I think we thought there was still time to talk about everything else.

Part of me wonders now if we should have been straight up with him about what was going on medically; after all, he was an adult and maybe it was underestimating him or overprotecting him to keep that information from him.  He knew his diagnosis, but he didn't know the prognosis.  The bottom line, though, is that my family and I did what we truly believed was in Dad's best interests at the time, given what we knew and the resources we had.  We didn't LIE to him, but we did skirt around the truth about his prognosis and the severity of his illness on the few occasions he asked us about it, when he said things like "What if the chemo doesn't work?" and then we said things like, "It will, Dad! We just have to get through it."  He asked one of his doctors a few times about the usual prognosis of someone with his same diagnosis, and they told him the truth, but all of us, Dad included, discounted what they said because Dad wasn't "usual" - he was extraordinary.  Towards the end, he asked me a few questions like, "What's it like to die?" and "Do you think it’s cold in heaven?" (he hated to be cold), and I am so very glad that I answered him truthfully then.  Most of the things I said to him though, when I realized how very limited our time together was going to be were part of a one-sided conversation - when he couldn't talk back, and when I'm wasn't sure he heard me.  Looking back, I think it would have been so hard for us to say goodbye to him and then to have him say it back; the pain and sorrow that I see on his face when I picture this scene in my mind are heartbreaking, sending a stream of tears down my face, and that's when the vision is only in my imagination.  I think Dad might have viewed his own farewell message as quitting, and I am glad he was spared that, at least.  

So when I think about what our conversation would be like had he gotten an extra few minutes tacked on at the end of his life, it’s hard for me to picture anything other that what we did talk about when he was so sick.  Given that, I want to respond to the question of what would I say to him now - not as if he is still alive but as though he and I are able to communicate now, with him being wherever he is in the afterlife and with me being here on earth:

Dad,

There are a few things that I want to be sure you know, and if I can be assured that you realize and understand these things it will help me to better deal with my grief:

I miss you so much, every day.  You had such a big impact on my life and on making me into the person I am today, and the things you taught me and the lessons I learned as a result of having you for a dad are carrying forwards, still affecting me every day.  So much bigger than that, though, was your impact on the hundreds of other people you knew and even on the thousands of other people you came into contact with over the course of your life.  What you left all of us with – and all of the people with whom WE will come into contact with in the time to come – is your perspective, your view on kindness, and your joy and gratitude in all kinds of situations.  Because of you, I know that I am lucky, no matter what is happening around me.  Because of you, I know that I can decide to be happy, if I choose.  And because of you, I know that family comes first but that every person is important and that being kind and giving to others is a privilege, not a duty.   I wish you could realize how many people admired and loved you; I think while you were sick that you might have gotten confused on just how many friends you had because we discouraged people from visiting you then because we were so worried about you catching their germs.  I’m sorry that we didn’t find a way for you to see how cherished you were by so many.  Finally, I want you to know that we will be forever grateful to you for the way you fought so hard to hang in there through so much over those last ten weeks, I want you to understand how we are so appreciative of every bit of light you brought to us over the years, and I want you to know that I will think about you and try to make you proud every single day, for the rest of my life.  

The Art of Sportsmanship

One of the things I love about the Olympics is that through watching the Games, we occasionally get to see little glimpses of good sportsmanship that are unlike anything seen in mainstream sports.  Good sportsmanship, to me, comes from having a genuine love of one's sport and can only really be experienced when one has the right perspective; it's about being grateful for having the chance to compete, no matter what the outcome.  

I think perhaps everybody's favorite competitor based on sportsmanship this summer was South African Oscar Pistorius, who advanced to compete in the 400-meter finals despite having two prosthetic legs.  

Another example of an athlete who was a good sport in the face of competition was Sam Mikulak, the U.S. gymnast who was in third place in the men's vaulting event as he openly cheered on the competitors who performed after him and ultimately bumped him out of medal position.

But my favorite moment of sportsmanship was in the mens' 10,000 meter run during track and field; skip ahead to 2:40 on this video clip and you'll see Mo Farah, the British distance runner, cross the finish line first to take the gold, followed by his training buddy and my pick for Best Sport of the 2012 Games, Galen Rupp of the U.S.:

In my years of competitive running while I was growing up, my dad always encouraged me before every race to gut it out and to give it my all, to do the homework (and by that he meant to put in the miles and the training beforehand AND to learn whatever I could about both my competition and the course ahead of time), but to leave it all on the track.  He taught me that when the race was over, my competitors were my friends, that our mutual love of running made us allies in a sense.  Through advice that my dad gave me about running, I learned that how one behaves before, during, and after the event is every bit if not more important that who stands on the awards podium at the finish and that sometimes it's your day to have a good race and sometimes it's someone else's day.  That's how I came to value Sportmanship and all it embodies - respect, fairness, kindness, and honesty.  

Valuable Advice

Someone asked me recently what the best advice that I was given after my dad went on ahead was.  My answer involves words of wisdom that were imparted to me by three people:

The day after my dad died, one of my friends said, "Stay strong," which was a sentiment several others had also expressed to my family that day and during my dad's illness, but this friend added two more words that gave a whole new meaning: "... or don't."  I'm not sure that I fully grasped the meaning or the astuteness behind those words that day, but since then I have come to understand and appreciate the message more than I can adequately express.  From my perspective, the directive "Stay strong" is given out way too often to people who are going through a difficult time.  These days, when I hear that said to someone, I want to ask the person who says those words, "Why?  What is the point?  And, really, what other choice is there?"  Like the meaning behind the words my friend said to me on one of the hardest days of my life, in my opinion, it's ok not to feel that you have to be strong when things are tough.  That's why you have friends, faith, or whatever else gets you through it.  Sometimes being told to "be strong" can put an undue burden on a person, sometimes it sets a goal that is unattainable, and sometimes it sends a message (albeit inadvertent) that the only thing those around the person want to see is him or her, being "strong."  Sometimes it feels better to fall apart for awhile in the midst of tragedy; sometimes doing so enables a person to regroup and to power on.  In any case, I much prefer my friend's message: "Stay strong, or don't!"

I still think about that advice regularly, and when I see or hear things like THIS ...

... it makes me want to respond by saying, "You can do both: you can smile and cry, hurt that he's gone and be happy that he was here at all, feel pain and sorrow and still cherish his memory.  You don't have to choose just one or the other."

The second piece of advice that I found most helpful was given more as a piece of information than advice, and it was actually said to me by two different people at two different times; the first person said it to me just after my dad had been diagnosed with cancer.  She had been through a cancer diagnosis and treatment with one of her parents and wanted to share her observation about how she and the other adult children in her family had handled things in distinct ways.  I thought back to her words many times while Dad was sick, not just in relation to how differently my siblings and I were trying to cope but to how every person in the family had his or her own role in helping and his or her own way of getting through to the next day.

After Dad went on ahead, the grief counselor that I went to had me do an exercise in which I was to draw a flower with petals on it and then write on each petal a different role that various people were playing to help me get through the grief process.  She gave an example of "This person listens when I talk about my dad," "This person takes some of the work load off me by doing chores I don't feel up to doing," and "This person lets me cry without asking me what's wrong."  Writing it out helped to remind me that people around me cared and were trying to help in their own way and that no one way was "better" than another.  

The Truth

I’ve been thinking a lot lately about the fact that there isn’t a word to describe the role that a child assumes when a parent goes on ahead.  For the spouse, there is “widow” or “widower,” a term that comes from an Indo-European root meaning “to be empty.”  

The truth is that, without my dad, part of me is empty too.  Floating around in that empty space is grief, a state of being in many different emotions, not the least of which is regret.

Several months ago, I read the book House Rules by Jodi Picoult, and a line from the book really stuck with me:  “Living with regrets is like driving a car that only moves in reverse.”   I know in my head that’s true; regret, especially in a situation like this, is an exercise in wheel-spinning.  It certainly isn’t going to help anything, and yet it’s still present, pushing questions and thoughts and other emotions into that empty space on a regular basis.  

Of course, I wish we had found out about the cancer sooner – soon enough to have done something about it!  Even if earlier detection didn’t result in a cure, maybe it would have given him longer to live.  Even if more time wasn’t in the cards, maybe earlier detection would have resulted in less of a loss of function for him so that he could have enjoyed the time he did have left.  

Beyond that, I think the remaining regret is entwined with disappointment, in some cases because of things that happened or had to be done and in others because of things that didn’t or just weren’t possible.  

I wish we’d had time to investigate other options for him and that we could have talked to him about those options, both from a medical standpoint and other choices related to how he wanted to spend the time he did have left.  He said he wanted to go to a beach, but that was when we all thought he was going to get better and so that got added to his Bucket List for when he was feeling better, which of course never happened.  I regret that it just wasn’t to be for him and that, no matter how hard we tried or how much he deserved it, we couldn’t make that happen for him.

Dad on the beach, when he was healthy

I wish it had been possible for us to be sure he knew he had so many friends who loved him.  I will always regret that we didn’t encourage more people to visit him when he was sick.  We didn’t, because we were trying to protect him, but the end result wasn’t what we expected or intended and for that I am so sorry.

The grief counselor has helped me to see that I would still have what-if’s and second thoughts to consider in hindsight if we had gone a different route, though.  For example, if we’d said no to having him go to rehab – then we would have wondered if having he go would have helped him get stronger physically, mentally, and emotionally.  If we’d taken him to the beach in lieu of treatment, we’d have wondered if making another choice would have extended his life or even possibly cured him if we’d sought treatment.  And, in either case, he would have been miserable anyway.  The chance for quality was squashed by the tumor.

"[Y]ou can't connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something -- your gut, destiny, life, karma, whatever. This approach has never let me down, and it has made all the difference in my life."  ~Steve Jobs