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. 

Serendipity

Here's a little serendipity: I was contacted quite some time ago by the editors of Elephant Journal and just received notice that this article from a past blog post was published on their site today.

A Gift Received

Brave and Important

I mentioned in the last entry that one of the things I've been doing to help me through my own grief is reading books and blogs of others who are also struggling with the difficult work of grief.

Here's a link to a blog that I started reading about the time my nephew was born last spring; in fact, I got the idea for making the video of photos from my sister's pregnancy and from the birth of my nephew from this site.  The story of the family that's detailed in the blog is sad but so touching and inspiring:

                                 Chasing Rainbows

I started reading the "Darcy Claire" part first - but it will make more sense if you click on each of the children's names across the top of the home page in order from left to right (that's their birth order), Gavin then Brian then Darcy Claire. When you get to the Darcy Claire part, have some tissues ready and be sure to watch the video (the link is at the bottom of the entry when you click on her name).

When you've read that, find the Blog Archive list on the right-hand side and click on "2013" and then "April" - that's what was happening in real-time just after I started following the blog, and it's very dramatic.  Start reading at the entry from April 2013 entitled "A Piece of Pop" and follow it from there - you won't believe what happens as the story continues to unfold.  

Be sure to read the entry called "Without Ever Uttering A Word;" it's touching beyond description.  It makes me think of the many kids I've gotten to know through my job as an occupational therapist who aren't able to communicate verbally and who've made such an impression on me through the years.  And be sure to read the one entitled "The End;" it's potentially the most powerful blog entry I've ever read.

Some of the things that have struck me in particular as I've read the entries (and from watching the Darcy video) are how touching it is how Kate (the mom) never seems to mind having her picture taken, even in the midst of tragedy, how she repeatedly says she feels "privileged" even in the midst of what must have felt like excruciatingly hard waiting, and how she seems to need to do something to try to help herself through her grief, even as the tragedy unfolds. Some of the stuff she writes about how hard it is to function at all in a state of grief reminds me of how I felt like I was that first year after my dad went on ahead, struggling just to get supper on the table or to pay a bill or help my kids with homework.  I admire Kate's writing because, while she's hopeful and that fact shines through almost everything she writes, she doesn't sugarcoat some of the ugly of grief, and I think that's brave and important.

Cancer Sucks

Reports came out today about former TV star Valerie Harper having been diagnosed with terminal brain cancer.  

Harper, 73,  played Rhoda on the Mary Tyler Moore Show from 1970 until 1974, after which she had her own spin-off show called "Rhoda" until 1978.  She wrote a tell-all book called "I, Rhoda" that came out in January this year.

She went through treatment for lung cancer in 2009; her diagnosis at this time is Leptomeningeal Carcinomatosis, or LC, which occurs when cancer cells, usually as a relapse from cancer originally in another part of the body, invade the subarachnoid space, enter the cerebrospinal fluid, and are transported throughout the central nervous system.  LC occurs in up to 8% of patients with cancer, most often in cases of lung cancers, breast cancers, GI tract cancers, and melanomas.  

I didn't know all of that about LC until recently.  I follow a blog - Family Bonding Time - about a husband and wife who were both diagnosed with cancer almost simultaneously, and the wife, who has breast cancer, was diagnosed in January with LC as well.  

In reading about it, I was shocked to learn that LC can come from the spread of GBM, the type of primary brain cancer that my dad had.  We had been told by the team of oncologists and neuro-oncologists that GBM almost never spreads and that we shouldn't be concerned about that for Dad.  (Looking back, I wonder if the reason they said that is because they suspected that he wouldn't last long enough for any spreading to occur.) Apparently in cases of LC, often nothing new shows up on scans because the cancer has spread into the spinal fluid rather than through an increase in the number or tumors or in tumor size.  Symptoms of LC, of course, are very similar to those of other types of brain cancer, including GBM, but a couple of the markers for LC listed in the information I read caught my eye: extreme lethargy and severe pain reported diffusely in the top of the head, both of which cannot be explained otherwise, as in they do not seem to be coming from other sources like a side-effect of medication or the location of a tumor.  Both of these things were true for my dad, especially during the last month of his life, when he was so tired he could hardly keep his eyes open (but oddly and torturously for him he couldn't sleep because of the massive doses of steroids he was on - because he kept reporting severe pain on the top of his head!).

I guess it doesn't matter, does it?  I guess they could have done a spinal tap to check for the presence of cancer cells in the spinal fluid - and actually they did consider doing that to check for meningitis at one point, but then they decided just to treat him with antibiotics that would treat any type of infection instead.  If they had found LC, in theory they could possibly have treated it with chemo administered through a catheter into that part of his brain, but honestly I doubt he could have tolerated or withstood that treatment, and I guess I'm glad we didn't have to make the decision of whether or not to put him through such a drastic intervention when it was not very likely to buy him much more time, if any, in his condition.  I will never get over the fact, though, that no one on the team of specialists who were assigned to Dad's case towards the end, could even venture to guess why he was going downhill so rapidly, especially after he had been given transfusions and heavy doses of medications to restore his blood counts to within normal limits.  "On paper, he should be better," his oncologist said, but he wasn't, and I will never forget those words.  

Exercises in Perspective

I talk a lot about perspective, but I think about it even more often.  It's one of the few things that keeps me from coming apart at the seams during the Mad Tea Party of life.  

I like to read about things that give me perspective and about the impact that different people and experiences have had on others.  One thing I have realized in thinking about the legacy that my dad left behind is that little things can make a big difference - little things we say, little things we do, and even little things we think.  Each of these can serve to shape each of us into a person with a bigger heart, a better outlook, and a broader perspective.  As Mother Teresa once said, "None of us, including me, ever do great things.  But we can all do small things, with great love, and together we can do something wonderful."

In keeping with that theme, I have decided to compile of list of things that can bring perspective and post those ideas periodically as challenges to myself and to others.  Some will be fun, some will be thought-provoking, some will be service oriented or otherwise actionable.  All will be targeted at contributing to the perspective of anyone who participates.

Here's the first one:

Let someone know the impact he or she has had on your life.

This idea came to me from a message that I got from a person who knew my dad many years ago.  The person had heard that my dad was sick but didn't know that he had died. In reading some of the entries in this blog, he recognized himself as one of the guys in the story that I told here:

The Spirit - Not The Spirit of Competition

When he read that story, he said, "I tell the story of that race in Mississippi all the time to people. I learned a life lesson that day. A great story was told through his life. I can recall all those runs and races and his smile that seemed too broad for his little body."

When I told him that Dad had gone on ahead, he expressed sadness and regret that he had not been able to tell my dad how he had been impacted by him.  He said, "I wanted to tell him how his life story connected to mine. He was largely responsible for my love of running and in many ways responsible for my future."

Thinking about his words and the words he said he wished he had told my dad made he think about the fact that there are many people in my life to whom I haven't reached out in some way over the years to let them know how they influenced me. 

What he said made me realize that end-of-life regrets are not only for people who are nearing the end but also for those left behind who haven't delivered a message that we wish we had.  

In doing this first Exercise in Perspective, you may choose to communicate with a person from your past or from your present, someone younger or older, someone who served as a mentor or a teacher to you or just a person who caused you to think or act differently than you might have otherwise.  Your message can be delivered in writing or verbally, and it can even be as basic as something like, "Thank you; knowing you has helped make me the person I am today."  The only criterion to this challenge is that you reach out to a person who has left a mark on you in some way, and the point is this: don't wait.  Do it now; the person to whom you deliver your message will be glad, and so will you.

Open to Hope

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

Click HERE to read the article.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

200th Entry!

This blog entry marks the 200th note published since this site was started in May of 2011.

In that time, there have been over 15,000 visits to the blog, by people from all over the world.  I think it's fascinating to look at blog statistics and to realize the power of the Internet:

It is so heartwarming to see how Dad's story is carrying on and how his life and his perspective continue to impact people, rippling outward to individuals who didn't know him and to many who don't know me, and the support and the comments that I have received as a result of this blog have meant so much to me, more than I can adequately convey.  In the world of grief, one thing that helps to hold us up is camaraderie, and I will always remember that which has been bestowed onto me and my family.

I've learned a lot from the emotions and the thought processes that go into writing for this blog and from the comments that have come from others who seem to somehow "get it."  Because of the blog, I've gotten feedback from several people whom I knew only casually or whom I knew in a completely different context over the past couple of years, and I've gotten to know several people in a different way than I did before.  

Through this process, I've also realized the value of words.  Words are important, and they can be healing or hurtful, depending on how they are put together and on how they are spoken and how they are heard.  Since my dad's death, I have grown to detest some commonly used wording and to prefer some wording over others for certain things.  As I've mentioned, I hate the term "new normal;" it seems better to me to say "new routine" or "moving forward" instead because I don't think I'll ever see not having my dad here with me as "normal."  As is evident in the majority of the 199 other blog entries, I prefer the term "going on ahead" to "died" or "passed away;" the former just sounds so harsh and so final to me, and the latter sounds so passive, as if he didn't try with all his might to stay here in this world with us for as long as he possibly could.  I don't like to think about dying as a person's losing a battle; I think it's better to say he ended his battle instead of saying he lost his battle with cancer.  The latest perspective in wording that has come to my attention is a question that is often asked of people who are coping with serious illness or those who are grieving: "How are you?"  What I have come to see as more fitting phrasing is "How are you today?" That seems to open the door for a more honest conversation instead of just having the response be "I'm fine" when so often that just isn't true.  It's semantics, I know, but somehow it's become one of the things that I pay much more attention to these days, as part of my current perspective.

One thing that I used to say as a child that I wanted to "be" when I grew up is a writer; as a teenager, I told that to my dad a few times, and each time he said he didn't think it was likely that I would "make a good living" that way.  (It was very important to him that my sisters and I each found a career that would give us job stability and that would allow us to support ourselves.)  I guess it's kind of ironic then that through his illness and through the grief that followed after he went on ahead I have somehow found my way back to writing, and, if he were here today, I would tell him that I am using writing as a way to make a good living, maybe not for profit but for perspective and for therapeutic purposes.

In closing, I'd like to share a quote about grief that I came across in Dean Koontz's book Odd Hours:

Grief can destroy you -- or focus you.  You can decide a relationship was all for nothing if it had to end in death, and you alone.  Or you can realize that every moment of it had more meaning than you dared to recognize at the time, so much meaning it scared you, so you just lived, just took for granted the love and laughter of each day, and didn't allow yourself to consider the sacredness of it.  But when it's over and you're alone, you begin to see it wasn't just a movie and dinner together, not just scrubbing a floor or washing dishes together or worrying over a high electric bill.  It was everything, it was the why of life, every event and precious moment of it.  The answer to the mystery of existence is the love you shared sometimes so imperfectly, and when the loss wakes you to the deeper beauty of it, to the sanctity of it, you can't get off your knees for a long time; you're driven to your knees not by the weight of the loss but by the gratitude for what preceeded the loss.  And the ache is always there, but one day not the emptiness, because to nurture the emptiness, to take solace in it, is to disrespect the gift of life.

Missing Him

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sharing

One thing that I have been doing more of since starting this blog is reading the stories of other people who are facing battles of their own.  I guess I am intrigued by (and sometimes desperate to) learn about how different people are making their way through their challenges.  One common denominator that I notice in the stories that inspire me is that each person speaks in a direct way, from the heart, and that each of them has a positive attitude (like my dad), although none of it is too flowery or Fantasy Islandish.  

I recently came across the story of Suleika Jaouad (pronounced "su-LAKE-uh ja-WAD"), which I feel compelled to share; in reading what she has written about her battle with cancer, it is clear that she is nothing short of a badass, and I find her stories, her writing style, and her perspective to be both inspiring and empowering.   Suleika writes a weekly column for the New York Times called 'Life, Interrupted,' in which she chronicles her journey with acute myeloid leukemia (AML).  Her blog, Secrets of Cancerhood, includes links to her series of newspaper articles and her video journal, which she has been keeping since her diagnosis in May of 2011.