At Least A Thousand Times More

Today is the fifth of the month, and, like the fifth of all the other months that have marked the time since I last spent time with my dad on this earth, it's not an easy day for me.

Every month I wonder if there will ever come the fifth of a month on which I won't feel this way.  I don't think so, at least not for at least a thousand times more or so.

I thought I could make it through the day this time around without writing about my dad or my grief, a new kind of milestone that I feel a weird kind of obligation to reach towards, even though it seems unnatural - and, truth be told, so sad and disrespectful I can't really allow myself to think about it much.  

It's been 30 months.  My god that's hard to believe.  But not as hard as it is not to be able to talk to him except in the format of a one-sided conversation.  

Today I've been thinking about the last time I saw him before we knew he was sick, which was on an extended family vacation in upstate New York.  My husband, my daughters, and I hugged my dad and my mom goodbye as we headed off towards our respective gates at the airport at the end of the trip; I don't specifically remember hugging my dad then, but I'm sure I did.  And I'm sure I thought I would see him at least a thousand times more, with both of us happy and healthy.

I can't help myself from thinking back to things that happened when he was sick, and sometimes the memories and the visions of those things haunt me - like how I used scissors to cut the hospital bracelet from his wrist both times when he came home from the hospital - and how the way I felt when doing so was so completely different on each of those occasions.  The first time, he was still recovering from brain surgery and we were still reeling from the news of the devastating diagnosis and preparing for him to go to Duke for the treatment that we thought would save him.  The second time, we had brought him home on hospice, to save him from the spiraling misery that was going on in the hospital, with hope of a different brand.  The second time, I saved the bracelet after I'd cut it from his wrist; I put it in my purse as if that made sense or a difference in anything that was going on. 

I think back to the packed-up box of stuff from his office, the contents of which would seem meaningless, perhaps junky even, to a stranger but were of exactly the opposite to us in value. I don't know where most of that stuff is now; I guess it doesn't matter, except for when it feels like it does.

I can clearly remember the moments during which the news of the diagnosis was delivered to us, and I remember so well the feeling of hope that the statistics wouldn't, and didn't, apply to him, or to us.  It was as if that Hope was our magic carpet, our oxygen, our blood; to live, we needed to believe that he would live.  I sometimes wish that I didn't remember some of those moments or the rapid decline and the series of let-downs and failures and disappointments from the second and final time that we spent with him in the hospital; that was like being caught in a fishing net, and it forced us to reconsider what we thought about almost everything.  I try to think back to the full weight of the feelings of helplessness, of guilt, of terror, and of powerlessness that crept in during that time, before they were overtaken by resignation and different shades of the previous emotions. But I'm not sure; I think they just gradually took hold of me over the course of the last three weeks of his life, and I have to say I haven't quite shaken most of them yet.

At the end of that trip to upstate New York, my immediate family ended up being stuck at the airport in Albany because of a delayed flight due to thunderstorms across the country; my parents made it out on their flight on time.  After they's gotten home, Dad texted me to check on us and commiserated with me about the inconvenience of the lateness of our adjusted schedule.  "I hope you make it home ok," he texted when I told him that our plane had finally been cleared for take off, the second-to-last time he would text me, ever.  And only five months later, I said goodbye to my dad for the very last time, and, in the early hours of the morning later that night, I laid my head down on the pillow to try to sleep and found myself crying so hard that tears threatened to fill my ears.  I tried to stop but couldn't, and then I squeezed my eyes shut and felt that same message flash from me to my dad:  "I hope you make it home ok," I thought between sobs, and then I added,  "I miss you, I can't believe this whole thing happened, and I don't think I can make it without you" - thoughts that would run through my head at least a thousand times more between then and now.

The Summer of the Exchange Student

Here's something that most people I know don't know about me or my family ...

During the summer of 1984, in between my freshman and my sophomore years in high school, my family served as a host family for an exchange student.

Lots of people who have hosted an exchange student have probably had a great experience, one from which they greatly benefitted and something that they would recommend that someone else do as well.  Not so much in our case.

Corinne, with Mom and Nancy, in more clothes than I ever remember seeing her wear that summer

Our exchange student's name was Corinne.  She was from Nice, France; her father was a surgeon, and her family lived in a house on the French Riviera.

I have no idea how the match between her and my family was made by the exchange program agency.  It's possible they were desperate for placement families, or maybe they just used the exchange student's age and gender to pair the person with the family.  Suffice to say, though, that from Day One it was pretty obvious that the match wasn't a great one.

Corinne was between my sister Jennifer and me in age; one of the rules of the program was that the exchange student be given her own bedroom, and so Jennifer and I agreed to bunk together in my room during the summer and let Corinne have Jennifer's bedroom.  When Corinne got to our house, we excitedly showed her around, and she was silent.  No expression, no comments.  I thought it was a language barrier issue until later that day when she started saying things like, "OK, that's your room?" and "OK, you eat in your kitchen?" with a French accent and a condescending tone.  (Apparently someone had told her that Americans say "OK" a lot, and so she started off many of her sentences with that as a kick-off.) She went to bed really early that first night, which we thought might be because she was jet-lagged from the trip.  A week or so later, though, when she was still retreating to the bedroom pretty early on a nightly basis, we asked her if she was tired, and she said, "No, I'm just boring."  We laughed for a minute, until she clarified that she actually meant "bored."  Well ok, then.

The summertime weather in Corinne's hometown peaked out at about 80 degrees; the inside of our house was that same temperature because Dad was strict about the thermostat setting, and as usual the outside temperature in the entire state of Mississippi that summer was a hot, humid 99 degrees in the shade.  She came from a land of famous painters, sightseeing, and yachting; we had fun making pottery out of mud from our backyard, chopping the heads off water moccasins with a garden hoe, and canoeing in the lake behind our house.  She was used to fancy food and fine wine; in our neck of the woods, the menu consisted of Miller Lite for the adults and sweet tea for the kids to drink and something like beanie-weenies, grilled cheese sandwiches, or spaghetti to eat.

Some of the blaring differences in our lifestyles were actually kind of funny, although probably much more so to us than to her.  Our two dogs, who lived outside, often got ticks on them, especially during the summer months.  We thought nothing of pulling off a big, juicy tick we'd found on one of the dogs; the first time I did that in front of her, she was oddly fascinated - apparently she had never even seen a picture of a tick before.  Here's the really funny kicker to that: a week or so later, we went out to eat at a restaurant with a salad bar, and my dad put sunflower seeds on top of his salad.  When Corinne saw the sunflower seeds, her eyes got really big, and she asked in half amazement/half horror, "You put ticks on your salad?"

"You put ticks on your salad??"

One responsibility that came as part of having Corinne there that fell mostly on my mother's shoulders was policing the practices of grooming and decency of dress, both of which were obviously different in our house than what Corinne was used to.  Mom figured out that the best way to address the problem was to make a blanket announcement to my sisters, Corinne, and me.  My sisters and I had to bite the insides of our cheeks to keep from smiling or laughing whenever Mom said things like, "All girls in the house must shower tonight ... be sure to shave your legs and use soap in the shower and put on deodorant afterwards."  The first time Mom told us to get our swimsuits on to go to the pool at the Tennis Club, Corinne emerged from the bedroom wearing a string bikini that consisted of about one square inch of material in total.  "Girls, let's all wear t-shirts over our swim suits so we don't get sunburned," Mom called out, quick with the reaction.  "OK, I'm used to sun all over," Corinne informed her.  "It's a strict rule at the club," Mom told her and handed her a t-shirt.

My family went to Biloxi, Mississippi, where my dad attended a business convention during the first week in August every year when I was growing up, and we did that year too, with Corinne in tow.  I remember the expression on Corinne's face when she first saw the beach there; I guess the Redneck Riviera didn't quite compare to the French one.  We had a blast, though, like we always did; we swam for probably at least ten hours a day there.  We were thrilled that the hotel where we stayed had a bar in the swimming pool, and Dad let us charge two Shirley Temples each per day to the hotel room.  By that time in the summer, Corinne had for some reason gravitated towards Nancy, who was about five years younger than she was, rather than towards Jennifer or me; Nancy entertained herself during that entire trip by pretending she could speak French and then telling Corinne to answer her back in "real French."  Quite entertaining, for us at least.

Don't get me wrong; we had fun that summer with Corinne there.  It's just that there's wasn't much, if any, of an exchange going on between her and us; pretty much all we learned about her country or her was that we were very different.  I wonder what she said about her experience as an exchange student when she went home; people probably thought she was exaggerating or fabricating when she told them about how we tanned on the roof of our house, drank water straight out of the hose, and ran around barefooted in the backyard all summer.  All in all, I guess it was an educational experience for her, although almost certainly nothing like the way she or her parents had intended for it to be, and for us, at least, it has provided many laughs over the years when we've thought back to the Summer of the Exchange Student.

Memories and Exit Ramps

Traveling along the highway of life with a luggage rack loaded with grief, it often seems there are endless reasons and opportunities for taking an exit ramp, as situations and conversations bring forth memories from previous experiences related to pain and loss.  I try to keep my eyes focused only on the space illuminated by the headlights directly in front of me, but sometimes things on the side of the road or off in the distance catch my eye, and looking at and even following those sightings cannot be avoided. There are lots of things along the way that I didn't think I was going to have to face - some of which I hadn't even be aware before I'd traveled this very road - and, once I was and once I did, that we didn't think I was nearly strong enough to traverse. The triggers that force me to exit for pit stops can come from varying sources - reading about or hearing about someone else with a similar story, being asked for advice related to my own struggle, or even just watching others about whom I care go through a trial like my family has since the time when my dad got sick.

Interestingly, I think, at some of those exits are emotions that are strangely unlike those I felt while I was beginning my own journey down this rough part of the road, in this construction zone of sorts.  I remember the feelings of powerlessness, sadness, confusion, and anger from during that time, but, looking at it at this point through my "things may appear smaller than actual size" rearview mirror, especially if I am able to offer anything at all to someone else from this vantage point, makes me feel strong and useful, ... a Silver Lining I suppose, one that I hope translates into a benefit for someone other than just myself. 

Over the past couple of weeks, I have been slowed in the right-hand lane as I've watched my friend and her family bring her father to hospice care on Friday two weeks ago and then say goodbye to him on the following Wednesday, the exact time frame that my family had with my dad.  I remember how in my family's situation there was so much to do, an overwhelming amount of things in fact, and then there was nothing.  I know all too well the pain and the helplessness and the feelings of such utter loss and despair that they were feeling as they prepared for the funeral, and I remember how I thought things couldn't get any harder but then how in many ways it seemed like they did after I went home after the memorial service and found my job and other responsibilities waiting for me.  After my dad's illness and his death, it felt like the emptiness, the loneliness, and all the other emotions were something with which I didn't think I could cope or even survive, but somehow I found a way, as I know my friend and others in her family will too.

In addition to having the perspective from inside the rawness of the grief, I now have somewhat of an idea of what it felt like for those around me in those early days of peregrination; it feels like running in place or maybe like being on a scavenger hunt of sorts.  There is so little that can be done to ease the pain of those who have been forced to enter onto this highway; the best I can try to do is just to ease off the gas pedal in my own vehicle to let them merge into my lane, to give them a nod of acknowledgement, to let them know that they are not alone.

"There is a sacredness in tears" ~ Washington Irving

Shifting Perspective in Grief

An article ran today in the Huffington Post's Healthy Living section that may be of interest to anyone who is grieving or even who knows someone else who is suffering from grief:

Griever's Gold: Cherished Memories

The advice given in this piece is reiterative of some of what I've written about in this blog, especially the way the author launches into her list by saying, "The following five techniques can help a griever shift perspective."

The insight about the way people who are grieving consistently indicate that they would not trade away memories of their loved one in exchange for having the pain of their loss erased is interesting, I think, a different kind of spin on the idea that, no matter how dire or tragic one's situation seems, it's always a wise perspective to realize that things could be worse.

I also like the way she talks about shift and how it tends to occur in grief over time; it's really quite incredible that way comfort seeps into our lives to help (not to heal, I don't think) with the rawness of the pain thrust upon us when we lose a loved one.

The third item on the author's list, "Share stories with other people," reminds me of the quote that affected me so much when I saw it hanging on the wall of the grief counseling center where I went not long after my dad's death: 

Every grief needs a thousand tellings.

Although this may not be true for everyone or in every situation, I have found the "telling" to be helpful in my own grief process.

And finally, the fifth item, "Give thanks for the gift of this person in your life," which is my favorite on her list because it is totally dependent on one's perspective: instead of feeling only sorrow and anger for the loss of a loved one, one can choose to be grateful and happy for having had him to love at all - and to have experienced the impact of that person AND to have the honor of carrying him forward.

Every time I see this portrait of my dad standing in the redwood forest, I think of the word "IMPACT."

Ashley Davis Bush, who wrote the article for the Huffington Post, is the author of a book about grief that I highly recommend: Transcending Loss - Understanding the Lifelong Impact of Grief and How to Make it Meaningful.

Happy National Siblings Day

Happy National Siblings Day, especially to my sisters, without whom I would not be the person I am today.  

Cheers!

I don't think there's anyone else in the world who can ever know a person like his or her siblings do; there is a shared history from events woven through the fabric of our lives, full of memories, tears, adventures, laughter, trust, support, and love, a tapestry of snapshots from the past and the present that results into a truly unique bond.

During the time that our dad was sick and since his death, I have felt like my sisters were the only ones on the planet who felt even close to the same way I do. We had different types of relationships with him and we are different people, but we love each other as fiercely as we loved him. 

We've taken turns falling apart and worrying about the others, but we have always operated as a unit.  I know that when nobody else can understand what I am feeling or why I am doing whatever it is  I am doing - crying, ranting, hurting - they will.  

I also know without a doubt that without both of them, I would not have made it through any of what happened as we have struggled to make it through the most difficult time in our lives, at least not in the same way that I did. 

They regularly support me, entertain me, give me things to look forward to, and keep me grounded, and I am thankful every single day to have them in my life.

What I Have Come To Believe - Part 1

There are some things that I've started to think about since my dad died that leave me with feelings of uncertainty; the more I ponder those things, the greater the lack of clarity I experience.

However, there are other things that I have become completely clear about, sometimes because I had never experienced or considered these particular issues before - and some things that I had come across but about which I hadn't had this particular perspective previously.  

Here's one of the things I know for sure:  I know that the world is different without my dad in it, but it's probably not as different as I judge it to be, at least not in a general sense.  Personally, I see the world now in a totally different light than I did before Dad got sick, and I've developed a view that is perhaps less naive, perhaps more jaded, or maybe both.  Every time I hear or read the statement "What doesn't kill you makes you stronger," I want to argue: from my perspective, this could not be further from the truth.  If we can keep from allowing it to break us down completely, we are not left stronger;  if we are lucky and diligent, we are left transformed, metamorphosized, different.

I search for consolation for the rest of my family and for the other people who knew my dad and who still say to me "I just can't believe he's gone," but I am unable to find anything of comfort for them since I have yet to find it for myself.  Time has passed; some of the sharp edges of grief have moved into more of an aching pain, but the sorrow and all of the other emotions that come along with the mourning are still there, with no end in sight.  I am different from the person I was before my dad got sick; I live differently, I think differently, and I believe differently.

I know this grief won’t end. It will only change and lessen. We will not get over it, but we will learn to live beside it, hopefully more efficiently and more gracefully than we have been able to do so far. We will hold our memories in our hearts and rely on the promise that the thoughts that now make us mourn will one day be overshadowed by the ones that make us smile.

Country Road Take Me Home

If you know me, you probably already know this about me: I have zero decorating sense.  Seriously, I live in a house with very little decoration and with several rooms with no curtains, and I've lived in this same house for more than a dozen years.

It's not that I don't like home decor or fabric or color - it's that I like so much of it that I can never decide what I want to have displayed, what I want to live with on a daily basis.  It's also a little bit that I've never liked knickknacks, things that some people might call "collectibles" but that I usually refer to as "dust-catchers."  If I have something out on display in my house, it's because it means something to me, not because a magazine or some decorator who doesn't know me suggested it or because it seemed like there was a hole on a bookshelf that needed to be filled.

That said, I know what I like in home accessories, furniture, and art when I see it.  And when I come across something in my price range that stirs up memories and/or emotions, I usually try to find a way to work that item into the scheme of our house.

Awhile back, I found out about the work of Kallie North, a photographer who lives in a small town in the Mississippi Delta.  She's from Texas but married a farmer from the Delta and settled down in the area near where I grew up.  She's a songwriter and a singer too, but it's her photography that makes me feel like she sees things in that area the way I remember them from many years ago.  

I've decided that I am going to order some of her prints to frame and display in my house; I love the way she shoots things that others probably don't notice and the way that, in her pictures, the beauty of things that probably isn't usually recognized is made clear to see.  I love the colors and the shots of crops and things that are unique to the Mississippi Delta.  The agriculture-related photos remind me of my dad, whose career was in the field of ag-marketing and consulting.  I exchanged a couple of emails with Kallie a few months ago, and she has agreed to take some photos this fall of the grain elevator where my dad worked many years ago.  I plan to display those shots and a few others of hers in the Mud Room of my house so that I can see them every time I come in the back door.

Here's a link to her photo gallery:
http://www.kallienorth.com/portfolio

"Beauty of style and harmony and grace and good rhythm depend on Simplicity."  ~Plato

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!!

Two Years Out

Have you ever run into someone whom you haven't seen in awhile and noticed that something about that person that you can't put your finger on has changed?  Maybe it was something so indistinguishable, so subtle, that you have even wondered if it was just your imagination, but still you felt that something was different about that person than it was in the past.  That's what grief feels like for me at this point.  It has changed over the course of the two years since my dad died, but it's hard to say exactly how.  Or maybe I have changed in how I address the grief and in how I cope.  One thing is for sure, though: it's still looming; it's not any less of a threat except for the fact that I guess I have learned a little bit about how to manage it.  

Part of me is shocked and even a little bit impressed (surprised?) that we've made it to the two year point after my dad went on ahead.  We've done it; we've helped each other through it and we've survived it, so far.  Some days, though, it feels like running the third lap of a four-lap mile around the track, which for me was always the most painful because I knew that I had to give it my all in that part of the race but I was also aware that there was so much work left to be done even after that lap had been completed.  Part of me is so shocked and so saddened by that fact that we're already at the two-year mark that just the thought that it has been that long since I've seen him immediately brings tears to my eyes.  Two years.  How did that happen?

I had a dream about my dad a couple of nights ago, and in it he was sick and he kept asking me, "How did we get here?"  At first, I thought he meant that he wanted to know how we had arrived in the physical location where we were, which was, oddly, sitting on a bench in a park that was not familiar to me (and certainly it wasn't somewhere that I went with him while he was sick), but then it dawned on me that he was asking how we had gotten to that exact point in time.  And then in the dream I turned to him on the bench with tears in my eyes and I said, "We got here because of your strength, your courage, your toughness, your determination, and your love, and we will never forget that."  I knew he want to know how he had gotten cancer and how it had gotten so bad so quickly, but no one knew the answers to those questions.  What I did know in the dream - what I wanted to convey to him - and what I do know in real life is that my dad is the reason that my family and I have had the fortitude not to crumble in the midst of the biggest challenge of our lives; time and time again, we have held him up as an example of how to face the pain of our grief, how to cope with the sadness and the anger that threaten to overtake the joy and the promise of hope for a better tomorrow, and how to look for the good on even the roughest of days.  That's how we have gotten here; that's how we've made it through these two years since he had to go on ahead.

But of course knowing that doesn't make me miss him any less; if anything, the passage of time makes me miss him more!

It's not just that today marks the two year anniversary of my dad's death that brings him to mind; I miss him all the time.

I miss how he and I could laugh over the craziest things, sometimes things we knew were ridiculous or even dumb but we thought they were funny anyway. 

About ten years ago, Dad and I drove from my house to the small town in Alabama where my grandmother lived to pick her up and bring her back to my house so she wouldn't be alone on Christmas.  It was about a 7-hour long drive each way, and we had a great time talking and laughing along the way, just the two of us on the way there and then with Grandmom on the way back.  At one point en route to her house, we stopped at a gas station that happened to be in a rough neighborhood; we both got a big fountain drink inside the convenience store and then got back into the car.  As Dad pulled out of the parking lot and turned onto the street, we heard a loud ricocheting type of noise on the back window of the car.  Each of us instinctively ducked our head as Dad quickly pulled the car over onto the side of the road so we could see what had made the noise; we both thought we had been caught in a crossfire that had shattered the glass on the back window.  When we'd had a few seconds to process things, though, we realized that the sound had come from the ice from the drinks that had spilled as we'd turned the corner after both of us had set our cups on the roof and had forgotten them there as we got back in the car.  A good laugh ensued, and we headed out onto the road again.

I miss the inside jokes and the memories we shared from running together.  One thing we used to talk about in that vein was our strategy of "rounding up" our run time ("If you say you'll be out running for 40-45 minutes, you can go for almost an hour before anybody notices," Dad had advised me many times throughout the years when I complained about not having as much time as I liked to have to run.  Prior to the time when he began training for the Ironman triathlon, his fitness goal from age 55-65 was to work out for an hour a day, at least 5 days per week.)  

I miss the exuberant way he marked his place in books, by folding half of the page down.  I was reminded of this just a couple of weeks ago when I was going through some books to see which ones could be donated to charity and I came across a book that he had handed down to me a few years ago, complete with folded down pages marking the places where he had taken a break from reading along the way.

I miss the way he took joy in everyday tasks and, in doing so, he made them fun for those around him.  This included lots of things he did to entertain me on long runs - things like singing as he ran and alternately bounced and caught a tennis ball to the beat of a song, like taking me on different running routes that he had scouted out in advance to make each one an adventure, and like coming up with unusual training techniques for the two of us like running up and down the steps on the outside of a grain storage bin for a certain amount of time (which he then challenged me to try to improve on when we did it again the next week).  

We ran up and down steps like these
as one of our training routines.

There were lots of non-running tasks that Dad made fun, too, though.  One thing I was thinking about recently was what he called "Laundry Parties."  When I was a teenager, Dad, as the person in our house who did most of the laundry, had trouble discerning whose clothes were whose between my mom's, my sisters', and mine, and so he often brought laundry baskets full of clean clothes into the den, dumped them on the couch, and announced to my sisters and me that we had to help fold them.  "It'll be fun!" he'd say. "It's a Laundry Party!" and, although we usually groaned and complained about having to help, he always joked around and made a usually boring task fun.  

I miss the way he hugged, which was often more back patting than anything else.  Somehow his technique always seemed to instill confidence in me, as if the back-patting was literally him patting me on the back to let me know he thought I'd done something right.

I miss the funny random emails and phone calls from him, sometimes about something so out of the blue that just his question or comment made me laugh out loud.  Once he called to ask me how to spell "coulotte" (pronounced "coo-lot" - this is a style of women's pants also known as a split skirt, in case you didn't know).  I spelled it for him, he thanked me, and then, obviously in the middle of a thought, he hung up.  I had to ask him later why he needed to know: he had been writing a memo to employees in his office about what was and what wasn't acceptable attire for Casual Fridays.

I miss the funny rules he made up for some things, like "I never drink beer that I can see through," a rule he imposed several years back when he discovered that he had a penchant for dark beer, despite the fact that he had been drinking lite beer for decades before that.

I miss the smell of Brut on him, so much that I sometimes break out a bottle of it that I have stashed in my bathroom just to take a whiff of it.  It's comforting in that context; it's disturbing and sad when I smell it on someone else in passing, as if that intrudes on the comfort of it in my memories from when he wore it.  

I miss the way he bounced on the balls of his feet when he walked.  I miss his competitiveness, which he carried on with himself as much as anyone else, and I miss his pride.  I miss the way he could (and usually did) talk to anyone who crossed his path.

I miss the way he lost certain things, like his wallet, so often that he tended not to worry about it whenever he did; like he did with a lot of other things, he didn't worry because he thought worrying was a waste of time and he just believed that everything would be ok.

I miss having him ask me about my job and how things were with my husband and the kids; I really miss how he used to listen to what I said in response and then how he would sometimes sigh as if he felt exhausted on my behalf and then say, "I don't know how you do it all!" with so much pride and admiration in his voice that it soothed me and made me proud, even when I'd felt like I had been struggling before then.

I miss his no-nonsense attitude and advice, the same kind he gave me when I called to tell him that I'd been offered my first job as an occupational therapist after I'd graduated from college.  I told him what the salary would be and that I thought it would be a great place to gain experience, and then I said that I had told the human resources department that I would get back to them about my decision.  Without missing a beat, he said, "Haven't you been wanting to work at a children's hospital like that for many years?"  I told him that I had, and he said,  "Well, then, what are you waiting for?" was the advice I got in return, in response to which I hung up with him and made the call to accept the job. 

I don't think Dad always recognized the value that other people found in the advice that he gave out, though.  Late one night when he was in rehab and he, as usual, couldn't sleep, we were talking about the schedule for the next day and I reminded him that I was leaving to drive back home as soon as my mom got back to stay with him the next morning.  "Be really careful driving back," he told me, and then he said, "Be sure not to stop for gas in the valley on the way back; it could be dangerous there and cell phone coverage isn't good."  He paused and added, "But I'm sure you can take care of yourself."

Before I could say anything in response, he commented, "Sometimes I worry that any advice I've given you hasn't been about the important things."

"What do you mean, Dad?" I asked him. "You've given us good advice!" to which he responded, "All I can remember telling you is stuff like always keep a towel in the trunk of your car and put some toilet paper in the waistband of your shorts when you go for a run in the woods."  It was true; he had told me both of those things many times throughout my life, and, truth be told, I always did both of them (and still do).  But, of course, that wasn't the bulk of the advice he had given to me over the years, and I wanted to be sure he realized that.  "You've taught me a lot more than that," I told him, but the only answer I got was the sound of his rhythmic snoring.  After tossing and turning and chatting for the majority of the night, he had, at last, fallen asleep.

I miss the lists of "suggestions" he emailed to us before his birthday, Father's Day, and Christmas.  To me, he was always the easiest person to buy a gift for, not just because of the list but because he had such distinct hobbies and because he would often just "make do" with whatever he already had instead of buying the latest and greatest accessories and gadgets for himself, leaving it open for us to give those things to him later if we wanted.

Once when we were running together during the time that I was preparing for a marathon, I told him that I had gotten some new gear to help me with the training and that I had estimated that I had several hundred dollars of equipment on me every time I went out the door to run.  He actually stopped in the road and said, "Are you serious?"  Yes, I told him, but that included my high-tech clothes, my shoes, my GPS-enabled watch, my heart-rate monitor, my sunglasses, and my iPod.  "That's crazy!" he said, incredulous.  He started running again but insisted that we go back by the house so that I could "ditch the extras." "That way we can really run just to run," he said.  And that's what we did.  How I miss being able to do that with him, and to talk about anything or nothing along the way.  Damn.