What Grief Can Look and Feel Like

A friend of mine recently lost her father, and she has asked me about what’s “normal” in grief.  Hmmmm.  First, I will say that I am perhaps not the right person to ask that question of, as I am not only unsure about the answer but also because I think that even my speculation about the answer may be more confusing that it is right.  And next I will say that one of the things I do know about grief is that there really isn’t a “normal” to it. 

Through the reaching out of others with whom I have connected through this blog, I have begun to see that, although grief may have some universal similarities to it, it is not experienced in the same way by any two people.  There’s not a right or a wrong way to do it.  Going through the grieving process often seems to make people feel like they are feeling abnormal – but that’s normal, I think.  Grief is just grief, and, in spite of the things it may cause people to do or say or think or feel, it doesn’t mean that the person who is grieving is flawed, or sick, or selfish, or crazy, or depressed. 

 Grief can look like thousand different things, mostly painful and confusing but some inspiring and strengthening, if one chooses to let them be. I think that the idea of death and dying, the difficulty of grasping such a HUGE concept, as well as the questions that come along with it like WHY and WHAT NEXT sometimes makes our brains think things we wouldn’t ordinarily think.  One thing I have learned by putting my story out there publicly is that whatever’s going on in one’s head in the midst of the grief is very likely to be something someone else has/is also thinking or feeling; maybe knowing that will help someone else not feel quite as alone as they walk the road of grief and mourning. 

Lots of times grief feels like walking in a fog, without any direction at all.  It looks like breaking down into tears in the middle of driving to work or making dinner or taking a shower.  It looks like reading the same passage over and over again and then saying “To hell with it” when the words on the page still don’t seem to make sense.  It looks like waking up in the middle of the night and forgetting what has happened just for a second or two, and then remembering and feeling the slam of the sadness all over again.  Sometimes it feels like a force making you want to stay in bed – even if that means missing a meal or a party or work or the entire holiday season.  Sometimes it feels like a force that won't let you sleep - or that fill the sleep that does come with nightmares and sadness.

Grief can make it feel as if the world is spinning, it can make things look fuzzy, and it can make your legs feel heavy like cement and your heart feel broken and raw.  It can make you feel overly bold or brave … or it can make you feel small and terrified, all the time.  It can sometimes make a simple task or decision feel like climbing a mountain.  It can look like staring into space; it can make you feel like you can’t function, and – here’s the brutal truth – it can make you not really care if you can’t.

Grief can look like laughter – or rage – or avoidance – or more tears that you ever thought your body could manufacture.  It can make the world look like a minefield, full of danger.  It can feel like walking into a room full of strangers who have no idea what you’re thinking or feeling or what you’ve been through – and it can also feel like being all alone in a completely empty room, full of only coldness and hard edges and with an echo.  It can feel like holding onto a secret that has been locked away or supporting a boulder so big that it’s incomprehensible to think about ever doing anything besides struggling under its weight.  It can feel like going on a hunt, looking for a glimpse of any good at all in the world, a desperate search and an endless list of questions and worries and fears.

It can look like an endless road, and, in a way, that’s what I think it is, and I think maybe the secret to getting through it is knowing that there is no secret to getting through it. 

Grief and Ice Chewing

I recently met a woman - someone I'll call Tina* - though a mutual friend.  In the course of conversation, it came to light that Tina's mother had been my boss for many years before her retirement.  I was particularly happy to meet Tina because her mom, about whom I will always think very highly, passed away tragically very soon after she retired, and I had never before had the opportunity to tell anyone in her family how much I appreciated the impact she had had on my life.

I told her how her mom had guided me professionally over the years, and then I told her what I admired about her mom the most, which was her mom's effort and ability to keep track of the details of things going on in the personal lives of her many employees and coworkers.  In a word, it was her kindness that touched me the most over the many years that I knew her - and it was that quality that I remembered and admired about her the most.

Tina told me about the day five years ago when her mom died, the specifics of which I hadn't heard before.  She talked about how hard it was to lose her mom and how she, as an only child, and her dad had grieved the loss differently.  She asked about my parents, and after I told her about my dad's death, we talked more about grief and loss.  As someone who is twice as far ahead as I am on the road of grief, she told me a few things she had come to know, like how the sadness and the pain never go away - but that things do get more tolerable in some ways over time.  

It was comforting to hear what she had to say about the grief process from her perspective and based on her time frame; it reminded me of once many years ago when I went to have my teeth cleaned at the dentist's office and saw a dentist in the practice whom I hadn't met before.  They had gotten a gadget to use during exams that was essentially a tiny camera that allowed them to film what was going on in a patient's mouth and then project the image onto a TV screen for the patient to view.  (Stick with me; I'm getting to the part where this ties in to the conversation detailed above.) The dentist used the camera to show me that I have some tiny cracks in some of my teeth; likely, she told me, the result of crunching ice.  Although she presented that information to me more in the form of a scolding than anything else, for some reason I felt the need to explain to her why I had started the obviously bad habit of ice crunching: to combat the severe heartburn I experienced during my second pregnancy.  "How old is that child now?" she asked me.  I thought she was just making conversation, and I told her my daughter was five.  "Well, that excuse got used up a long time ago," she snarkily informed me.

Needless to say, I did not bond with that particular dentist, and I chose not to be seen by her again.  I felt there were several important pieces of information involved in patient care that she was missing, ranging from general courtesy and compassion to motivation and perspective.  She didn't ask me if I still had issues with heartburn or if I thought the ice-chewing had just become a habit over the years; actually she didn't ask me anything except for the age of my child, which she obviously asked only as a lead-in to the judgment she was all too eager to issue out.  

And that leads me to what I think is my point, and, you'll be glad to know, to how this story ties in to the first one: grief, like ice chewing and lots of other things in life, has its own time frame in every situation, and that's ok.  Each person has his or her own story; each of us has traveled a different road to get to where we are today.  Without having traveled that same exact road, or, at the very least, without having worked to try to understand that person's perspective, another person cannot possibly have the insight or the knowledge - and possibly the right - to stand in judgment of another person.

That's one thing that I've certainly learned over the past couple of years; that, and the lasting impact of kindness.

*Her real name isn't Tina - and her identity probably really isn't a secret if you know me and my work history, but I prefer to use that instead of her actual name to protect her privacy - and since knowing her identity isn't the point of this story.

How to Help

One of my nieces is known in our family for her love of candy.  We laugh when we think back to the year when she was two and whenever anyone asked her what she wanted for Christmas she simply said, "Candy."  No amount of prompting or urging could convince her to expand her Wish List that year; over and over, she insisted in her well-articulated, tiny voice that all she wanted was candy.  She was as clear as I'd ever seen a person be about what she thought would make her happy that holiday season, and she savored every bit of candy that she got as a gift.

I saw a little girl eating a big sucker today and thought about my niece and her quest for candy, which, thankfully for her parents' dental bills, has tapered off over the past decade or so.  I thought about just how incredibly happy a kid can be with something as simple as a single piece of candy.  Hell, I thought, sometimes a piece of candy makes me happy, too, especially if it comes in the form of a gift from someone.  

I like to give gifts to people, and I put a good bit of effort into trying to think of a gift that is special for each recipient.  One of the things that I think is the most fun to give is a gift for a new baby.  A thought that strikes me, though, every time I am giving a baby gift is that it's kind of ironic that giving such a gift to the new parents generates work for them, based on social obligations: after they receive the gift, they expect and/or are generally expected to write a thank-you note, which, as anyone who has ever been a new parent knows, is one of the many things for which they really don't have time at that stage of their lives.

Many times when I've been wrapping the baby gift I've considered including a note with the gift to tell the new parents that they are off the hook for writing a follow-up thank-you note, which perhaps they would appreciate as kind of a "cherry on top" type of bonus to the actual gift.  That way, receiving the gift does not create an additional duty for the probably already overworked parents.  

When someone has cancer or another serious illness, people are often eager to do something to help out.  Having been on both the receiving end of that equation as well as the "What can I do to help?" end, there are a few things that I have learned about supporting individuals in need, the most important of which is probably this:  Don't just ask the person or the family if they need anything; ask them what they need.  

Admitting that help is needed can be really hard, and so it's best not to wait for them to ask for assistance.  Assume that they need help - and ask what kind they need.  In some cases, it may even be a good idea to think of specific things to offer, like doing their laundry or their grocery shopping, providing meals, babysitting, pet sitting, etc.  One friend of mine paid for a house cleaning service to go to the home of someone she knew while that person was in the hospital; another one sent her husband over to that house to cut the grass - one less thing for that family to worry about.  There are lots of things that can be done to take stress off the family and to allow them more time to do whatever needs to be done to care for the person who is ill - or just to spend time together instead of running errands or cooking.  If the person who is sick and/or the family say they don't need anything, I recommend respecting their wishes but checking back often to see if that changes.  Sometimes people are too proud to ask or they can't think of anything at that time - but situations can change in an instant and the need for help can arise overnight.  Sometimes it's good to establish contact with a member of the extended family - or a close friend or neighbor - and let them know you are willing to help.  One of my parents' neighbors saw me pulling out of the driveway of their house early one morning when my dad was sick and flagged me down to exchange cell phone numbers with me.  Later, after Dad had been taken to the hospital by ambulance in the early hours one morning, that neighbor texted me to say she had heard the sirens and would be happy to walk my mom's dogs or whatever else we needed.  

Another thing that can be good to do is just to let the person or the family know that they are being thought of, especially if whatever you do to convey that message comes with no strings attached, like the "No Thank-you Note Policy" for the baby gift.  There are many different ways to go about doing this, ranging from texting or mailing a note to that effect (adding "no response required" if appropriate) to sending an anonymous gift or card.  

Or here's another idea (and this brings the topic back around to ... CANDY!):  Sugarwish!

As their banner says, the webiste www.sugarwish.com offers an easy way to send a "sweet" thought by allowing the customer to purchase a gift card (actually an e-card) that will be sent to a recipient who then uses that to select their favorite candies from the choices on the website.  Once they've made their selection, the candy is shipped to their house.  And here's the potential bonus: it can be done anonymously, which will eliminate the thank-you note obligation on the part of the recipient.

SWEET!

When my dad was sick, I came across a website with a program similar to the concept behind Sugarwish; the idea, shared by cancer patient Jerry Kline in his blog, was that a pager (also known as a beeper) could be purchased and given to the person who is sick, with the phone number given out to any interested parties so that anytime someone prays for or thinks about the sick person they can call the number of the pager and enter "777" or their zip code followed by the "#" key to indicate their intent to that person, without requiring any response on his/her part.  I found the concept of the Prayer Pager to be brilliant; it allows people to send a message to let the person who is sick know they are being thought of, at any time of the day or night.  The pager can be turned off if the person wishes not to be disturbed during a certain time, and a page does not obligate the person to do anything in return.    


After reading what Jerry had to say about the program, I contacted the program administrator and asked if I could sign up for my dad.  Unfortunately, though, the program had run out of funding and was no longer being offered.

Since then, though, I have come across a website that offers something similar to the program Jerry used; it's called Pager Prayer.

I guess the point of all this is that there are things that can be done to help an individual who is sick and/or his or her family and that sometimes even the little things can be helpful and meaningful in such a situation.

Knock, Knock!

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

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

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

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

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

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

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

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

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

He knocks one last time and then is gone.  

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

~Suzanne

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

There's No Place Like Hope

At about the same time that my dad was diagnosed with terminal cancer, one of his best friends was also diagnosed with cancer.  His friend had to go through surgery and chemo during the same weeks that Dad did.  That friend was so sick that he couldn't attend Dad's memorial service after Dad died.  And that friend has been battling his disease ever since, dealing with more surgeries, more chemo, more complications, more pain.

I know it must have been so hard for his friend to miss the memorial; I'm sure it must have been really tough for him to assimilate what had happened to my dad over a relatively short amount of time, during which my dad and his friend did not have contact with each other because they were both so sick.  My dad, in fact, was never told of his friend's illness; Dad was having such trouble grasping the facts of and coping with his own diagnosis, and, as I've mentioned before in regards to my grandmother's declining health, we felt that it would have been unbearable for him to hear about serious issues befalling someone he loved, especially when he was powerless to help that person.

My dad and his best friend Bob, many years ago, just before the Boston Marathon

Recently, I emailed my dad's friend to let him know that I have been thinking about him.  In his response, he said something that gave me pause: he said, "I have a chance, and I guess that's all you can really ask for in this life."

I think he's right; as long as a person has a chance, as long as they have hope, they can look forward to something better, and sometimes that's all a person needs to keep going.  

The dictionary says that hope means "to expect with confidence."  I think there's more to it than that, though.  I think hope is somehow genetically woven into our beings so that we can survive, even through the roughest of times. We are fueled and inspired by stories that bring us hope: hope and trust in mankind, hope that other people will help us when we need help, hope that tomorrow will be a better day.  We say that it gives us hope to hear about others who have succeeded or who have had something good happen to them - and we are so intrigued and motivated by the exchange of hope that there is even a website called Gives Me Hope where people can submit their thoughts about things that have happened that inspire them to hope and that allow them to believe in the potential.

For a long time after my dad died, I felt foolish when I thought back to the way we were so hopeful that he would beat the odds.  I felt like I'd somehow been tricked or that I'd misinterpreted the information in such a major way that I could never again trust that what I was seeing real or true.  Looking back at my Facebook posts from during the time when Dad was sick and seeing things I'd said like "starting to feel at least a little hopeful," I felt ashamed at the way I'd stepped out of character and had let my emotions overrule my logic.  I felt like the hope that I had clung to during Dad's illness had been unfounded, irrational, desperate, even ridiculous, but, over the course of the last couple of years, the words of my dad's friend and a few other things that have happened have caused me to start thinking of hope in a totally different way.

While my dad was sick and in the months that followed his death, I was active on a couple of websites for brain cancer survivors and their families.  I posted and commented and read the posts and comments by others about various treatments for GBM and other types of brain cancers, and through that forum I made contact with some people who had outlasted the prognosis of their disease, a few of whom had been diagnosed with GBM and had not only made it past the predicted two-year "maximum" survival time but for years or even decades longer.  While my dad was sick, I was desperate to find out what these people's secret to survival was so that I could find a way to try to make that same set of circumstances happen for Dad.  After he died, I still felt a need to know: What had these people done that we hadn't?  How had they made it, when Dad couldn't?  I'm still signed up on one of those chat boards, Cancer Compass; I don't post anymore, but I always read the new comments about long-term survival of GBM.  It might seem like I would see that as a point of sadness, or frustration, or injustice, but for me it serves more as a point of scientific curiosity - and of hope.  

In the summer after my dad died, a friend of mine who had been combatting cancer found out that her cancer had relapsed again and that she needed radiation treatment.  I offered to drive her to some of her radiation appointments.  The hospital where she had to go daily for several weeks was about a 45-minute drive from her house, and she and I commented several times during those weeks and afterwards that we had enjoyed having that time to talk to each other on the way to and from the appointments.  

I admired this friend a lot; I had always thought that she was full of great advice and, since she'd been diagnosed with cancer about five years before, of tenacity and true grit.  She was one of those people who is so easy to talk to, a great listener, someone whom I'd always felt like I wish I'd had more time with so I could get to know better.  On one of our commutes that summer, she and I had a conversation about how we both had a hard time asking for and accepting help from others.  I commented that I was much better at giving help than at receiving it, and my friend thought for a minute and then said, "I guess in a way it's helpful to let someone help you, if you think about it," words on which I would end up reflecting back countless times since then and that later inspired a perspective shift and this post about my perspective about gratitude, blessings, and philanthropy: A Gift Received.

In another conversation during one of our drives, I asked her and she told me about the timeline of her illness.  She filled me in on details that I hadn't known from along the way, including the fact that when she was first diagnosed she had been told that her cancer wasn't curable.  "How do you deal with that?" I asked her, and she responded in a voice that conveyed unlimited courage and conviction, "You just do.  For me, I just keep hoping and believing that if I can stick around long enough, somebody will find a cure. I am fighting to stay alive not because I fear death, but because I love life.  I am thankful for every day that I have in this life, but at the same time I want more, and I hope that that's what I will be given."  

Through those words and through the words of my dad's friend and those of other long-term survivors, I've started thinking of hope as good, necessary, supportive, even power-inducing; I guess my perspective about hope had changed so much that, despite what actually happened with my dad, I now don't regret carrying that hope.  I now deeply believe that there’s no such thing as false hope: I think that all hope is valid, even for people who have been given an awful prognosis like we were, even when hope would no longer appear to be sensible.  Because as far as I'm concerned, sensibility went out the window the second we heard that my dad had brain cancer. 

"I believe that imagination is stronger than knowledge - myth is more potent than history - dreams are more powerful than facts - hope always triumphs over experience - laughter is the cure for grief - love is stronger than death." ~Robert Fulghum

Off-Label Uses

Sometimes people use a medication or a health care product to help with things besides the ailment or condition that the product was intended to address.  This off-label use is often done out of necessity, when things recommended by health care professionals or others have not solved the problem.  It's more of a last resort, a whatever-it-takes type of effort, or sometimes just a belief in a wives' tale or a carrying on of tradition than a science project.

Vicks VapoRub ointment is one product that has been said to work for treating things other than what its label says it treats; a couple of its off-label uses are treating toenail fungus and repelling mosquitoes. 

Proctor & Gamble, the company that makes Vicks, has a disclaimer on their website that says their product "can be used for the treatment of cough associated with the common cold" but that they "haven't tested, nor has the FDA approved, Vicks VapoRub as a toenail fungus treatment" and, therefore, they say, it is not recommend for the treatment of toenail fungus.  I think there are lots of people, though, who swear that Vicks alleviates them of that condition.  Not having fungus-y toenails (yay for me!), I haven't ever tried using it for that, but I have tried it a couple of times for keeping mosquitoes away when I've run out of Off! and it seemed to work just fine for that.

One of my sisters has yet another off-label use for Vicks Vaporub: she puts a little bit of it under each of her eyes whenever she has trouble sleeping.  She's done that since she was a teenager; she says the fumes it gives off sting her eyes, which forces her to keep her eyes closed, which eventually causes her to get bored enough to go to sleep.  I don't see any kind of warning about that on the Vicks website, so I guess it's an ok thing to do, and, as anyone who has ever suffered (and I do mean suffered) from insomnia can attest, at a certain point in a sleepless night, it's anything goes/whatever works to provide a little shut-eye before the sun comes up.

When I was running competitively a lot in high school, I sometimes tried to emulate some of the rituals that my dad had surrounding his running routine. One thing he did that I started imitating then was taking a couple of swigs out of the bottle of Mylanta that we kept on the door of the fridge as soon as I came in from a strenuous run.  I didn't know why he did it; I just did it because he did.  Many years later, I happened to think about how we used to do that, and I asked him why he did it back then.  "When you run hard, most of your blood goes to your arms and legs instead of to organs like your stomach, and so a hard run can make you feel sick to your stomach, and Mylanta helps with that," he told me.  I kind of half-laughed and asked him he'd ever tried any other remedies for the same problem, and he said, "Well, I guess I've tried beer, but I'm not sure if that helped my stomach or if it just tasted so good after a hard run that I didn't care if my stomach hurt."

I don't think the company that makes Mylanta has looked into billing it as a special after-workout remedy for runners, but maybe they should.  I know of another off-label use for it that they could advertise, too: when my oldest child was a baby, I worked in a nursing home, and one of the residents there told me that I should try using a liquid antacid like Mylanta to treat diaper rash.  "Just put some on a cotton ball and dab it on the rash," she told me.  Later, when I tried it, I found out that it worked better than any diaper-rash ointment I'd tried.  I ended up telling a friend of mine who was also a new parent about it; luckily, she asked me for clarification of how it should be used before she tried it because she later told me that she first thought I'd meant that an oral dose of it should be given to the baby. 

One thing that has surprised me about the process of grief has been the way the emotional pain often flows over into physical pain, and one way that that has occurred for me has been in the form of back pain.  Before I'd really realized what was causing the pain that plagued me night and day, I had been attributing the pain to poor posture or just to having slept  wrong, and I tried the usual treatments - ice, heat, stretching, pills, chiropractic.  Nothing worked, at least not for very long.  Finally, after reading about the grief process, I came to the conclusion that my sorrow and the other emotions tied up with the whole process had sort of settled into the joints and the muscles affecting my back, and I told myself that, like a lot of the intense emotional pain I was feeling at the time, I just had to ride it out until it got better on its own in time. In the meantime, though, especially at night, I ended up calling on my old running training buddy, Icy Hot.  The weird first cold-then hot numbing action it has helped me to relax; some nights it was the only thing that allowed me to go to sleep, essentially making it yet another product with an off-label use, this time to curb the often almost-debilitating pain of raw grief.

What I Miss the Most, Today

I recently signed up for an online class that looks at dealing with grief through writing.  This week's assignment is to write about what we miss the most about the person for whom we are grieving.  This is my entry, which is kind of a follow-up to the original What I Miss The Most post from last October ...


I guess the thing I miss the most about my dad is his enthusiasm.  He was without a doubt the most gung-ho (he loved that term) person I've ever known, always motivated and always looking at the glass as half full, and his contagious energy was something that affected everyone in his presence.  That ties into what I have come to realize was the best thing he left to those of us who were lucky enough to have known him: his perspective.  During my life, I observed him so many times in the role of the life of the party, a great conversationalist, and a friend to so many; I always thought he was so popular because he was so much fun to be around.  But after he went on ahead I realized from things that people (some of whom I didn't know even though they knew my dad) told us that it was actually his kindness and his positivity that attracted so many people to him, and I saw how far reaching his genuineness and his perspective truly were.  

     What I wear on my wrist every day to remind myself to try to be positive,
just like my dad 

I am trying hard to emulate that benevolence in my daily life these days, but, in the midst of my grief, I am finding it to be very hard to do so.  I miss my dad and his zeal for life so much that it often makes me angry and/or sad; I know that's just part of the grief process, but it makes me feel like I am not honoring him or carrying on in his footsteps when I can't be as excited and cheerful as he always was.

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"

Sliding Doors

I recently had a conversation with a friend of mine about both of our parents' battles with cancer, his mom and my dad.  Both were diagnosed at an age when they appeared to be in the prime of their lives, on the cusp of retirement, in seemingly good health.  My friend's mom was a long-time smoker but at his insistence had quit smoking a few months before she was diagnosed with the lung cancer that took her life a short time later.  As he was talking about her illness, he told me that he will always wonder if by encouraging his mom to quit smoking he had somehow caused her to get cancer.  He said he knew it wasn't really rational to think that but that he couldn't shake the thought that somehow the thing that had changed in her life before the diagnosis was made was not fortuitous, that there was a link.  I think in the greater scheme of things, human beings tend to want to believe that cancer (or anything else) happens for a reason, that where there's an effect, there must be a cause.  That's what our logical minds often tell us, and it's our way of allowing ourselves to feel like we have some sort of control over, well, anything, when in many cases we just don't.  No matter what the case is, no matter what the cause - if any - cancer is always unfair, and that's really the bottom line. 

Hearing my friend say that he felt on some level responsible for his mother's death made me think about the way that in any death, in any circumstance, there is always room to wonder: what could I have done differently, how could the outcome have been avoided, WHERE DID I LOSE CONTROL?

That conversation also started me thinking about the difference between guilt and regret, two emotions that are different from each other yet are often confused, especially when people are grieving.  In my opinion, the term "guilt" is frequently misused; the term actually refers to something that one feels he shouldn't have done because it was wrong.  In many ways, guilt can be a disabling affliction, just like Cancer.  And, also like Cancer, guilt is something that can happen to anyone at any time, no matter the circumstances.

Regret, on the other hand, is what is felt when when something has happened that has resulted in a loss or a missed opportunity, despite the fact that the person had no control over the result.  Regret occurs when there were circumstances beyond one's control; in short, regret can arise when one makes a mistake. The difference is that what was done in the case of regret wasn't wrong, even though what happened as a result was undesired.  

Many times I've heard people say they feel guilty when a loved one gets cancer, even when that loved one becomes a "Survivor."  I've heard people say they feel guilty for not doing more or for not being there for a friend or family member who has Cancer.   What they more likely mean in both cases is that they regret what happened, even though it wasn't an outcome of their actions.  

I know personally how cumbersome it is to harbor feelings of guilt and/or regret; it is, in a word, awful.  But the most awful thing of all is when the person who is sick feels guilty: They may feel guilty that those who are caring for them are missing work and other things, they may worry about the money involved in the treatment of Cancer, they may feel that they are a burden on others.  They may wonder if they did something to have caused the Cancer or if they didn't do what they should have done to prevent it.  One of my friends who battled Cancer years ago once told me that while she was sick she felt guilty for feeling jealous of people she knew who were healthy, and she said that after she was done with treatment she felt guilty for getting better when so many with Cancer don't.   And although "regret" is the better word to use here, we tend to say "guilt" much more often.

Why does that distinction matter?  Maybe because feeling guilty is, in a sense, blaming ourselves for something that was in no way under our control and/or for something that occurred as a result of an innocent action.  If someone is justifiably guilty for something, they should take responsibility for what they did and then make an effort to make amends whenever possible.  Inaccurately labeling regret as guilt can serve as a huge barrier in the grief process; when one feels responsible for a loss when in fact that person had only the best intentions and had no control over what ended up going wrong, it's easy for him or her to get "stuck" because their perception of what happened isn't based in reality.

All of this reminds me of the concept of the movie “Sliding Doors” (If you haven’t seen it I recommend that you do **Caution: not for kids!**), which is that it is possible for even a small decision to forever change the course of a life.  Surely the vast majority of adults have done some things in their past that they wished they’d done differently.  And when someone you love dies of a terminal illness (or maybe when they die from ANYTHING), it doesn't seem like it would be that unusual to feel at least a little bit of regret, and in some cases some guilt may play a role as well.

Looking back to the time when my dad was sick, part of me wonders – and will always wonder – if I did enough.  If I could’ve done more.  If I should’ve played something differently.  And if I had, would it have made a difference?  

Sometimes I think about the Sliding Doors concept, about different ways that things might or might not have been done as we tried to cope with his illness.  I guess technically mixed in with that wondering are some blame and some anger, both of which I feel are completely justifiably directed towards the health care professionals who in my opinion didn't do what they should have done.  (More on that later ... )  But I also find myself thinking about what-ifs from other time periods in my dad's life - both from before he got sick and whenever I imagine how things would be if he were still here, either having been miraculously cured or still fighting.

As I've mentioned, my dad was involved in lots of accidents during his life, most of which occurred out on the road during his physical pursuits.  Although I can't for the life of me figure out why I do this, I sometimes think about how things would have been had he sustained an injury with long-term effects in one of these accidents.  I always thought Dad had somehow ended up with nine lives (Maybe that's why he considered himself a cat person more than a dog person.)  Now I am left to wonder if he did but I somehow lost count along the way.  To some people, I guess it might seem like my family should have discouraged him from doing things like the running and the biking and the adventure races that sometimes resulted in serious injuries for him, but we always protected and defended his right to continue despite the risks because he loved it and, to be really honest, maybe because we caught a little bit of his "I'm too lucky for anything really bad to ever happen" fever along the way.  

When Dad talked about people he knew whom he thought had "gone downhill" over the years, he always said he hoped that didn't happen to him.  In fact, I distinctly remember several times hearing him say that he hoped when his time came that he went out running.  In a way, I guess he got his wish.

Why is it that "If games" are so common with grief: If only _____, things would be different. If I'd encouraged him to go to the doctor.  If we'd found out sooner.  If we'd chosen a different hospital or different doctors.  I guess it's because whenever our minds create these alternative scenarios, we can imagine an alternate reality to the one that we just don’t want to accept. These counterfactuals allow us to hide the truth, to conceal the reality of pain, if only for a little while.