Room for Improvement

There are several things that have stuck with me from during the time that my dad was sick, things that I perceive as mistakes and missteps that were made in the care and treatment of my dad by others during his illness.

One of the main ones comes from what was done - or rather, what wasn't done - by his oncologist in the last couple of weeks of my dad's life.  

I sometimes read a blog called People I Want To Punch in the Throat.  It's usually entertaining and sometimes even thought-provoking.  Every time I look at the title of it, though, I am tempted to make up a list of my own of people whom I wouldn't mind punching.  Towards the top of that list would go the name of my dad's former oncologist.  

I recently read an article about the subject of doctors who desert patients who are in the end-stages of their disease.  This article made me think again about my dad's oncologist, whom, as I've said in the past, we really liked in the beginning.  So much so that our fondness for and our trust in him, along with the urgency of procuring treatment for the cancer which we understood from Day One to be very aggressive and the logistical challenges in getting Dad in to see other doctors, resulted in our not consulting with other oncologists in the area.  It was a one-and-done scenario.  Our second opinion came from the nationally recognized team of neuro-oncologists at Duke which stemmed from a referral from Dad's hometown oncologist.  Since my dad's death, I've wondered so many times whether I should have done something else to make it possible for other oncologists in the city where my parents lived to give their opinion on my dad's case - but that's fodder for discussion for another time.

We thought we were right in choosing the guy we chose to provide medical care for my dad.  What's really messed up is that, even in a critical situation like my dad's that should have been recognized and treated as such every step of the way, the inconsistent availability of even the nurse in the practice when we had questions or concerns, the slow call-backs, the wait-your-turn kind of attitude that was so clearly conveyed to us throughout the first eight weeks of Dad's illness was something we felt we just had to take.  Never did I question the service or the care being provided by anyone at the oncology group, even when I realized that they could have done some things better - more efficiently, more compassionately, and with more effort to help my dad.  I just took whatever they were giving out - even though it definitely affected my dad's quality of life.  My family and I were struggling more than I can even begin to explain with caring for my dad and dealing with the series of blows we were being dealt, and I guess I didn't have it in me to buck the system.  Still, though, from this vantage point, neither the way my dad was treated nor my reaction to the quality of the service provided to my dad sits right with me.  

Things were going ok as far as I could tell with our interactions with the oncologist, though, until a few days into my dad's second hospitalization.  As much of a warrior as I can be sometimes when people I love need my help, for some reason I didn't see how wrong it was for Dad's doctor to take several days off work for Christmas and then again a week later, as my dad was entering hospice, for New Year's.  I get that the man wanted to spend some quality time over the holidays with his family - but DAMMIT didn't he see that my family wanted some quality time too?  I have thought long and hard about it, but I still cannot understand how the guy just punched out for 85 hours (yep, I counted) TWICE less than a week apart, not even CALLING to check in on us at all.  I guess I thought that was ok - I didn't say anything about it then - but my thinking wasn't right then.  Now I know that it wasn't ok at all.

I understand that, as the article referenced above points out, sometimes an oncologist distances himself from a patient who is in the end stages of disease to protect himself emotionally. There is no doubt the job of an oncologist is likely to be depressing at times ... but that's what they have signed up for.  I consider a patient's relationship with his oncologist to be worth sticking out through the good times and the bad; I don't think there is any valid justification for an oncologist to let himself off the case (and off the hook) just because the treatment isn't working.  As Dr. Moynihan states in the article, “No physician should ever say there’s nothing more I can do. There’s always something more we can do for the patient — if only to be there and listen to their stories and deal with their pain and suffering.”

And to the point made in the article by Dr. Meier of Mount Sinai: Yes, it is failing a patient who has been under the care of a doctor when that doctor chooses to no longer be involved with the care of the patient at the end, especially when, as in the case with my dad, the oncologist plainly promises that he will continue to be involved and will call in a few days to check in and then doesn't.   

To be clear, I am not alleging any malpractice or a breach in the medical care provided to my dad by the oncologist or his practice; I am, however, saying that there was definite room for improvement, and the fact of the matter is that my dad and my family were hurt in other ways by the practices of and the choices made by the oncologist.

The oncologist in the article, who has written his own account of the difficulties of treating a dying patient, said he received no training at all in medical school about "how to interact with a patient" who had reached the end of oncological treatment. I believe this to be the case in most med school programs, and I think it's outrageous.  Here's what I know and what I think all medical people should know: some of the most impactful care that a physician or other health care professional can give to a patient and his family sometimes comes from something other than medicine.


I think I'm going to write a letter to my dad's former oncologist.  It obviously won't change what has happened, but maybe it will impact the way he treats other patients and their families in the future.

The Power of Words

We must always remember the power of words.

Words can be healing, helpful, or hurtful, and each of us holds the power not only to express ourselves so that each of our messages has one of many meanings - but also to interpret words that are spoken to us so that messages we take in do as well.

                                                                 

CLICK HERE TO WATCH AN INSPIRATIONAL VIDEO ABOUT THE POWER OF WORDS IF THE EMBEDDED VIDEO DOES NOT AUTOMATICALLY BEGIN. 

The Flow of Grief

Today is the 5th of the month, and, as on this day every month over the last 25 months, that date results in an exacerbation of grief for me, because it is the day of the month that my dad went on ahead.  

I wonder if the 5th of the month ever won't be like this, if it will ever just flow by like the rest of the days on the calendar, and I wonder if it will hurt even more when the realization hits me that it has somehow slipped by unnoticed.  

From the moment I opened my eyes this morning, I felt the grief a little heavier, like a blanket that's too thick for the temperature in the room.  I plodded through the morning routine and made it out the door on time, but then, on my drive to work, I saw a car exactly like my dad's, an army green Mini-Cooper with a customized bike rack on the top.  

In an instant, tears filled my eyes.  I felt like I'd been punched in the gut but weirdly also a little bit comforted; feeling that it was a sign from my dad, I felt both like I'd gained something in experiencing that connection with him and like I'd suffered a loss again with the thought that the only contact I can ever have with him is transcendent. 

The unpredictability of grief is something that gets to me time and time again.  I like patterns and predictability; I don't like surprises or disorder.  All along I've felt like I wanted, or actually needed, to know - how will this go?  What's the plan?  How long will it last?  When will I feel like I have a grip on this grief, if ever?  

In the beginning, I told myself I could take it, if I only had an idea of how long it would go on.  And if I had some kind of rules or guidelines for getting through it.  When I realized there was none of that type of knowledge or information to be had, I found that pretty much all I could do was to cry.  We all cried, to each other and alone.  We worried about each other and we worried about ourselves; we wondered if this was how things would always be, and we wondered if we would survive the hardest thing that any of us had ever gone through.

So far I've just been muddling through it.  And the change - and the order to it and the flow of it - that I've started to notice, one that has come about at some imperceptible point in time, is that I have started to be able to reflect on the road I had traveled, to see some ribbon of road behind me as I glance in the rearview mirror, even as I have continued to trek along the same route, and I have started to see some differences in myself and in my grief ... not "progress," really, but observations about the path I have traveled as part of this process. 

Maybe it's just familiarity with grief, almost a relaxed intimacy like a couple who has been together for awhile or like shoes that are worn in but not worn out.  Certainly part of it is a realization that there is no standard of excellence in this process, just getting through it, hopefully intact. 

                           "I pick up a stone that I cast to the sky, hoping for some kind of sign."

I can smile most of the time these days when I see a photo of my dad, and I can usually talk about him without the extreme sadness and devastation that used to bubble right up to the surface so quickly.  I can laugh at some of the inside jokes that he and I shared, even though I realize that I'm the only one left on the inside of those now; I can usually think about something that he should be here to experience or to participate in now and not fall apart.  I can go to sleep most nights without feeling like I need to beg into the dark for a good dream about him.  Much of the difficulty is still there, though; I think I've just gotten more adept at managing it.  

I used to be a lot more inflexible - maybe even close-minded or harsh - in my views about certain things before my dad got sick.  I must admit: I did the same thing about certain things before I had children of my own; I thought I had at least some of the answers, and then reality hit me and I realized that I didn't.  I spent a lot more time with the "my way or the highway" type of thinking going on in my head than I do now.  

There's a certain amount of perspective that growing up  gives to a person - some of it good, some maybe more realistic than good, but nonetheless having our views changed over time is just part of life.  It's almost kind of metaphysical the way perception can be divided up over the course of a lifetime: either you think you know, or you know you don't know. 

But then comes grief, and that's a game changer on an entirely different level.  I think for most people, grief softens the edges of what we worry about, of our priorities, and maybe even of our philosophy about things.  For me, going through the trial of my dad's illness and living with the grief that has come from his death has also blurred lots of things.  I'm less sure about certain things - many of which I have written about and will continue to write about - and that can be stressful, confusing, and exhausting.  But one thing that I think has actually been a change for the better in this process is the mitigation of my tendency to cast judgment on others in general; not only have my views on some things softened, but I guess so have I.  

Here's what I know for sure about grief: there is no "right way" to get through it.  Each person brings a different set of circumstances, different coping skills, and different needs to the situation.  We may share some of the same emotions and sometimes even thought patterns as we travel down the road, but, as we are all unique individuals, so is the exact nature of our mourning and our grief.

In the weeks and months after my dad went on ahead, my first instinct was to isolate myself.  I'm not sure why, exactly; there are probably a whole host of reasons that went into that propensity.

With the encouragement of my family, though, I tried to get out and do things socially, although, truth be told, I didn't really feel like leaving the house most of the time. 

Through phone calls and sporadic visits between the different places where we lived, my siblings and my mom and I all stuck together as much as we could, but at the same time we all did different things to keep ourselves together in the midst of the grief, to ward off the grief, to get through the days that were so much tougher to get through than I'd imagined.  Wait a minute, scratch that:  I actually never even took the time to imagine what life would be like without Dad, until we were without him.  I guess that, like Dad used to say about worrying being a waste of time, I felt that punching through the unbelieveability to picture the sadness, the absurdity of that life, even when he was so sick, was just too far out there to be a reasonable use of time for me - it would be like me thinking about jumping on the space shuttle and going to the moon right now.   

I recently looked back at something I wrote very early in my grief, a jotted-down Q and A with myself. I wrote, "How can I get through this, how can I go on, what can I do?  I will probably end up sleeping too much, drinking too much, not eating enough, walking around in a stony silence, and I hate all of those ideas."  For better or for worse, I actually missed the mark on all of those things.  A lot of time at work and around town, I felt like a fraud, as if nothing out of the ordinary had happened, as if I were the same. I felt lost, but I knew where I was and I knew I didn't want to accept it.  I didn't know where to even begin trying to figure out how to live without my dad or how to live with the sorrow. 

In the immediate aftermath, my mother, of course, was the one still at the house where Dad was supposed to be with her, with the most dramatic life change, and she was the one that we worried about the most.  Her form of coping initially seemed to come in the form of trying to re-organize her house; it was as if she was trying to gain some of the control that had been lost the moment we heard Dad's diagnosis.  In my corner of the world, I made a list of the things that angered me, in an effort to keep from exploding in my fury, and of questions to which I knew there were no answers.  I tried different things, many of which I've written about since.  One of these was my longtime balance: running, which failed me in that role; for the first time ever, running didn't feel right to me.  It wasn't physically therapeutic and it wasn't emotionally therapeutic; it felt more like I was trying to chase down the answers to an interminable stream of runaway questions.  It hurt, something I was used to and was well experienced in in the physical sense, but the pangs of emotions that flooded my mind and my body on these runs were difficult to bear. After awhile, I gave up on it, and only recently have I begun to try it again, intermittently, as it seems like the flow of the grief and the things that come along with it allow.

Happiness - Pursuit and Perspective

I remember the first time I had a running injury that affected not just my running but also bothered me in when I wasn't running.  I remember lying in bed at night with my foot throbbing and thinking about how I hadn't appreciated being injury-free before I'd gotten hurt.  In time, the foot got better and the pain went away; I went back to running and back to not taking much notice about how lucky I was to be pain free.

That's kind of how it works when someone you love is seriously ill.  Except that in many cases, I would venture to guess, that perspective sticks ...  

... because seeing a loved one suffer physically and emotionally and going through all the things that grave illness entails changes a person, not just for during that time period but forever.

Since my dad's diagnosis and his subsequent death ten weeks later, I've begun to view happiness as the absence of sadness -  and goodness in life as the absence of, well, badness.  

People talk a lot about the pursuit of happiness, the quest for the Holy Grail, thinking they will be happy if ... if they win the lottery, if they get a promotion, if they lose weight, if this or that happens.  I've been guilty of such myself in the past.  

But that was Before. Before Cancer.  Before Loss.  Before I knew.

And so here's another perspective for people who are perpetually in search of something more: conducting such a vigorous search for happiness or peace or satisfaction or whatever it is they are looking for eventually becomes a self-defeating quest; the crusade itself is a constant source of stress and anxiety that is likely interfering with the attainment of that very objective.  Instead of always looking for something more, something "better," it might be helpful if they take a few steps back and consider how lucky they are to have their everyday lives, to be in the midst of the usual stress and chaos, rather than the alternative, which I guess is either being completely alone with nothing or no one to care about - or trying to cope with such extraordinary problems that going back to those everyday things becomes the goal with happiness as the reward.

In the thick of the usual day in-day out struggles, it's so easy to get caught up in thinking that life is tough, that things aren't great, that there is something better out there that you wish you had.  But when adversity comes along, especially when it affects your health or that of your loved ones and especially when it is life threatening, you realize that you just want to go back to having things the way they were.  Your perspective becomes that you didn't need anything more, because life was already good.

I think that's what tragedy gives away, or at least that's one thing that we can choose to take away from tragedy.  Once we've been through it, we have that special realization, that insider's knowledge that things could always be worse, because we are all too aware that, because adversity can be lurking just around the corner, we need to appreciate the calm, the ordinary, and the mundane, and that happiness is not something that we need to pursue - it's something we need to recognize in what we are already fortunate enough to have.

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

How You Can Help Me (Author Unknown)

I came across this passage today and thought it was worth sharing ...

HOW YOU CAN HELP ME

~author unknown

Please talk about my loved one, even though he is gone. It is more comforting to cry than to pretend that he never existed. I need to talk about him, and I need to do it over and over. 

Be patient with my agitation. Nothing feels secure in my world. Get comfortable with my crying. Sadness hits me in waves, and I never know when my tears may flow. Just sit with me in silence and hold my hand. 

Don't abandon me with the excuse that you don't want to upset me. You can't catch my grief. My world is painful, and when you are too afraid to call me or visit or say anything, you isolate me at a time when I most need to be cared about. If you don't know what to say, just come over, give me a hug or touch my arm, and gently say, "I'm sorry." You can even say, "I just don't know what to say, but I care, and want you to know that." 

Just because I look good does not mean that I feel good. Ask me how I feel only if you really have time to find out. 

I am not strong. I'm just numb. When you tell me I am strong, I feel that you don't see me. I will not recover. This is not a cold or the flu. I'm not sick. I'm grieving and that's different. My grieving may only begin 6 months after my loved one's death. Don't think that I will be over it in a year. For I am not only grieving his death, but also the person I was when I was with him, the life that we shared, the plans we had, the places we will never get to go together, and the hopes and dreams that will never come true. My whole world has crumbled, and I will never be the same. 

I will not always be grieving as intensely, but I will never forget my loved one and rather than recover, I want to incorporate his life and love into the rest of my life. He is a part of me and always will be, and sometimes I will remember him with joy and other times with a tear. Both are okay. 

I don't have to accept the death. Yes, I have to understand that it has happened and it is real, but there are some things in life that are just not acceptable. When you tell me what I should be doing, then I feel even more lost and alone. I feel badly enough that my loved one is dead, so please don't make it worse by telling me I'm not doing this right. And remember, I was a capable adult before his death and I still am.

I don't even understand what you mean when you say, "You've got to get on with your life." My life is going on, I've been forced to take on many new responsibilities and roles. It may not look the way you think it should. This will take time and I will never be my old self again. So please, just love me as I am today, and know that with your love and support, the joy will slowly return to my life. But I will never forget and there will always be times that I cry. 

I need to know that you care about me. I need to feel your touch, your hugs. I need you just to be with me, and I need to be with you. I need to know you believe in me and in my ability to get through my grief in my own way, and in my own time. 

Please don't say, "Call me if you need anything." I'll never call you because I have no idea what I need. Trying to figure out what you could do for me takes more energy than I have. So, in advance, let me give you some ideas: 

(a) Bring food or a movie over to watch together. 

(b) Send me a card on special holidays, his birthday, and the anniversary of his death, and be sure to mention his name. You can't make me cry. The tears are here and I will love you for giving me the opportunity to shed them because someone cared enough about me to reach out on this difficult day. 

(c) Ask me more than once to join you at a movie or lunch or dinner. I may say no at first or even for a while, but please don't give up on me because somewhere down the line, I may be ready, and if you've given up then I really will be alone. 

(d) Understand how difficult it is for me to be surrounded by people who seem so happy, to walk into events as if my life is the way it was, to feel out of place in the same situations where I used to feel so comfortable. 

Please don't judge me now - or think that I'm behaving strangely. Remember I'm grieving. I may even be in shock. I am afraid. I may feel deep rage. I may even feel guilty. But above all, I hurt. I'm experiencing a pain unlike any I've ever felt before and one that can't be imagined by anyone who has not walked in my shoes. 

Don't worry if you think I'm getting better and then suddenly I seem to slip backward. Grief makes me behave this way at times. And please don't tell me you know how I feel, or that it's time for me to get on with my life. What I need now is time to grieve. Most of all thank you for being my friend. Thank you for your patience. 

Thank you for caring. Thank you for helping, for understanding. 

And remember in the days or years ahead, after your loss - when you need me as I have needed you - I will understand. And then I will come and be with you.

                Louis Armstrong - one of my dad's favorite musicians - playing "Blue Again"

The Chemo Room: What's Going On With THAT?

Here's something I've been wondering about lately ...

Why are cancer patients forced to get their treatment in a crowded room?  I don't know of any other diagnosis that results in patients being forced to sit in a room together while each of them, one by one, gets stuck with a needle and then filled with toxins, all while they sit there in a circle, like they are hanging out around a campfire getting ready to sing Kumbaya and roast marshmallows.

Is it an attempt to mask the fact that each person is really fighting alone, no matter how much we love them and no matter how much we support them and want (need) them to get better, no matter how much we wish we could take away their pain or how hard we would fight to take their place?  

Is it supposed to be like a Cancer Club, with their cushy recliners and (if you're really "lucky,") flat screen TV's?  Because it's really not. Or at least it wasn't when I was in there with my dad.  For us, it was an environment of extreme stress, pain, and fear, tempered with just a little bit of hope and the belief that what was happening would be worth it.  But it didn't take having other Cancer patients in the room with us for that to be true. In the first chemo room we were in, the one at Duke, there were curtains between the recliners.  (Prior to then I'd read that only the newbies use them, but I didn't care - I pulled ours closed anyway so Dad would have some semblance of privacy.)  I'd heard that after the first few visits in the Chemo Room most patients prefer to keep the curtains open and chat with each other.  That sounds great.  And maybe for some people it is.  But I didn't see it, and I really can't imagine it seeming like anything other than an invasion privacy.  

For what I think were purely logistical reasons, our second visit to the Chemo Room was far worse than the first one. Neither one, of course, was a walk in the park for Dad, and, as you know if you've read our Behind The Scene Story, neither one ended up being worthwhile.  Both times, though, I remember feeling the breach of confidentiality and the urgent need for privacy and peace and comfort for Dad, all of which were not to be found in that type of a setting for him.

Is it an attempt on the part of the medical staff to keep people from showing their emotions?  We all know that peer pressure can be a very powerful thing.  I know there are lots of times in my life when I was hurt or scared and I wanted to cry but didn't because other people were around.  That just doesn't seem very nice, though, does it - using someone's pride against them, humiliating them into shutting down their fear, their pain, their anxiety, when they're battling for their lives?

Is it a cold hard dose of reality (like HEY YOU!  YOU REALLY DO HAVE REAL CANCER, and soon you'll be pale, bald, and sick-looking just like the other people in here!)?  OR, to shame them into not crying when they have to be stuck for the IV, when the chemo burns their veins, when terror hits them in the gut harder than any boxer ever could.  

I guess the most likely reason, though, and one that's in some way actually even sadder than those reason, is that it's a way to save money.  

Just one more thing about stupid Cancer that I don't understand.

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.  

Time – Part 2

A follow up to Time - Part 1

My husband asked me recently what I want for Christmas.  My first instinct was to say this:  I want my dad.  Nope, can’t get that, so on to my next “out there” wish:  I want more time.  Obviously, I want more time with my dad, but I guess I can lump that in the same category with the first thing – a category that is probably best entitled with one or more curse words, out of frustration and anger and hurt.  

As for the time for which I long on a regular basis – there’s just never enough!  Time to do more things I need to do, time for more of what I want to do, time to be with the people I want to spend time with.  Some days it’s tough even just finding time to try to figure those three things out.  Is that another impossible wish?  Is constantly feeling like I am running out of time just another one of those weird but commonly experienced parts of grief?  I don't remember being quite this obsessed with the concept of - or desperate for - time before my dad went on ahead.  Like a lot of things these days, I’m just not sure where this is coming from.  I guess I need more time for contemplation, too.

Another grief-centered blogger, Kara L.C. Jones, also known as Mother Henna, recently wrote this in a blog about grief … 

The cliche says, "Time heals all wounds."  But most bereaved [people] I've worked with over the years don't really find this to be true.  It might be closer to the truth to say something like: time gives us the opportunity to look at grief from all sides and integrate what we discover in the exploration of various perspectives.

We can think about this idea creatively. If you were an artist and had an object or model you wanted to work with to create a new piece, what would you do?  Well, whether you are sketching, painting, sculpting, or doing photography, you'd probably want to create as much opportunity as possible to explore all possible perspectives on that object or model.  You'd want to look at it from all side.  Find the best light, best position, a good angle.  If you are truly practicing your art, you'll want to see the worst light, most off balance position, and the ugliest angle, too.  You'll want to see all the perspectives in between those two extremes also. 

Why?  Well, it isn't that artists are wasting time.  It isn't that they are being difficult to work with or procrastinating on doing the "real" work.  It isn't that they are avoiding the "finished" product.  Rather they are exercising their skills.  They are working their artistic visioning muscles.  They are living a practice, not a perfect!  And they are getting a handle on the scope of the object or model, finding the edges, integrating an understanding of what they see and how they can create from what they see.

What if we were to do this with grief instead of trying to "get over it" or "heal it" or "get better" as if grief were a germ based sickness we were trying to get rid of?!?  What if instead of avoiding the shattering of our hearts, just what if, instead, we were to pour ourselves a cuppa and have a good long look at grief?!? What if we were willing to stand on our heads to look at it upside down?  What if we climbed high up on a ladder to look down at it?  What if we closed our eyes and used only our fingertips to explore the shape of grief?  What if we purposely looked for the best lighting, position, and angle from which to film grief?  What if we purposely looked for the worst lighting, most off balance positioning, and the ugliest angle from which to photograph grief?  Might we then be finding ways to approach living life after grief in a heart-full way instead of living a life of avoidance?  We could be discovering new ways to integrate all that has happened instead of trying to "get over it" with some false hopes of "returning to normal" -- as if it were possible to return to being exactly the person you were before experiencing loss!?!  If we take this exploratory path instead, we actively start living a practice of permission, giving ourselves opportunity to look at grief from all sides as a way to begin to integrate all that has happened to us.  At the very least, we are approaching grief in an active way instead of sitting back hoping against hope that the cliche is true and time alone will heal all wounds.

Well said, Mother Henna.  I’m so glad I found the time to read it.

Click HERE to read Time - Part 3

The Vacation - Part 2

Bittersweet is defined in the dictionary as "pleasure tinged with sadness or pain."  That's almost an accurate descriptor of how our first trip as an extended family without Dad felt to me, except I'd flip that around:  I'd say it was more like sadness and pain tinged with pleasure.

I think we were all a little nervous before we left about how the vacation would go without Dad and with everyone's grief still so raw.  Dad LOVED the beach and talked a lot about going there when he first got diagnosed, as part of his Modified Bucket List.

Like we’re all doing in our daily lives, though, we muddled through, trying to still feel lucky and be happy but missing him so badly our hearts literally hurt.  Personally, I felt a little guilty, too, being there when he couldn’t be.  But I know he would’ve wanted us to go even though he didn’t get to this time, and I realize that it’s just the start of things that will cut me to the bone thinking about how sad and unfair it is that he is missing out.

It helps to be together, though, with the only other people on Earth who love him and miss him as much as I do.  And the beach brings a certain peace to me, as I think it did to Dad. 

The six grandchildren wrote "I love u, Gramps," in the sand.

My mom brought an item of Dad's clothing for each of us to wear to the beach one night so we could have part of him there with us.  

Our group of 15 people walked onto the beach and set down our stuff, and, as we were trying to figure out how we should stand for the photo shoot, we saw a man walking towards us.  We asked him if he would take the photo, and he said, “Even better: my wife will; she’s a photographer.”  The wife overheard and walked over to our group to organize us so that the lighting was just right.  It’s always nice to have a professional show up on the spot.   Thanks, Dad!

 

The Bullard family - a tribute photo

Here in My Heart

The measure of every other grief

Is held to my own:

Is it longer, heavier, more powerful than mine?

I feel like I'm alone.

Those who have told me that time will heal

I know to be far off-base

I, in fact, don’t want to be healed           

For fear of having memories replaced.

It doesn’t hurt to hear his name

It doesn’t bring him or his death to mind

The thought of him already is always there for me

Aching if it seems he’s being left behind.

As much as I know part of him lives now with me,

I also know that part of me died with him, too.

I’ve lost my umbrella, and I’m not sure how else to weather the storm

Or how to walk down this road anew.

I want to call his phone and hear his voice

Leave him a message and know he’ll reply           

I want to get a scribbled note from him

I want to see the wrinkles at the corners of his eyes.

I want to hear him singing

Making up the words he doesn’t know,

To tell him something I’m dreaming about doing,

And to hear his funny expressions like "Gung-ho."

I want to know that he still sees the good stuff,

The kids happy and doing well as they grow.

His impact, his presence is with us always;

This I want to be sure he knows.

I’m not sure how to carry this pain

That cuts me like a knife.

I really just want to sit and cry,

But I have to go on with life.

I want to tell him thanks

For being my lifelong teacher and fan

And that I’m so impressed and in awe

Of how he went out like a man.

I keep remembering seeing his light

And it seemed like it was fading away

I wanted so badly to go after him

And to beg for him to stay.

But after all he has done for me

It was time for us to part

I had to let him go on ahead

But I’ll always keep him Here in my heart.