Lessons

Life, for the most part, is full of the mundane, the predictable, the obvious, the day-in/day-out routine.  We get up each morning, get dressed, eat breakfast, go to work or school, run errands, take care of the kids, make dinner, clean up, and go to bed.  Repeat.  It is easy to become complacent, to take it for granted, and even to sometimes complain about the little things without realizing what a blessing things around us really are.

And then, in the blink of an eye, everything changes.  We are jolted out of our reverie, forced to refocus and to reevaluate pretty much everything.  And even as much as we might wish that things would go back to the way they were, things are changed.  We are changed.  And, for better or for worse, so is our perspective.

In a way, the holiday season was part of the repeating loop for me over the years.  Certainly the joy and the excitement were there, especially seeing the wonder and the happiness in the faces of the children in the family.  Looking back from this vantage point, though, I can see that I spent too much time worrying leading up to and during the holiday season each year.  I worried about when and how the Christmas decorations got put up, I worried about having the “perfect” gift for everyone on my list, I worried about what I would prepare for holiday get-togethers, I worried about getting a photo for the annual Christmas card and getting the cards addressed and mailed out in a timely manner, and I worried about making sure that my kids had an action-packed, memorable (at least what I thought was memorable at the time) holiday season.  A lot of the stress I felt during the season was admittedly self-inflicted.  And, as I see it now, a lot of it was unnecessary and unproductive. 

 As I got out the Christmas decorations this year, I thought about years past when I did the same thing and I thought about when my dad was sick.  The hustle and bustle was still present that year - it was just focused on a different set of priorities.  My kids did most of the decorating at my house that year; I was out of town helping to care for my dad a good bit during that the time.  I did 100% of my Christmas shopping online, much of it late at night in between conversations with Dad.  Some of the gifts did not get wrapped, and a few even got left behind in the transport between my house and my parents’ house, where my extended family gathered on Christmas Eve and Christmas Day, taking shifts being with Dad who was in the hospital in the ICU at that point. 

I will never forget how awful it was being in the hospital that Christmas.  The hospital cafeteria closed after lunch on Christmas Eve, and families of patients in the hospital had to fend for themselves for food for the next day and a half after that.  The roads were icy and travel was precarious, and everyone in my family was so, so sleep deprived and concerned about Dad and about each other.  None of us cared about opening gifts or celebrating; the only thing we really wanted to do was to spend time together and to do whatever we could to try to help Dad.

I thought about that a lot as I lifted each string of lights and each ornament out of the boxes again this year, and here’s what I realized:  As tough as things were that Christmas, not for one second did any of us lose sight of the value of being there together.  No one in the family ever said anything like this isn't fair or I'd rather be somewhere else or doing something else.  Together we struggled through my dad’s illness and death and together we have struggled through the grief since then, the day-to-day routines as well as the holidays that have come since then now colored in a very different way.  The lessons I learned from all that we went through that holiday season are things that I am certain will never leave me – things like how it’s more important to focus on the joy and togetherness of today than to worry about the details of tomorrow, especially when much of tomorrow is out of our control.  Like how it’s important to ask for help when help is needed and how stuff is just stuff.  Like how when one of us is sad or exhausted or discouraged or sick or hurt, we are strong as a whole.  And like how, even in the midst of the everyday, it's possible for perspective to reflect the riches that we are fortunate enough to hold in the moment.

Dear Santa

As far back as I can remember when I was a child, my dad made a point to remind my sisters and me every year on Christmas Eve that Santa liked to have beer left out for him at some houses instead of milk.  I remember asking Dad if Santa would mind if the beer was hot by the time he got to our house and Dad said, no, any beer is good beer, even a hot one.  

Fast-forward a couple of decades later when I told my own children that Santa liked beer instead of milk.  Things went according to my plan until my older daughter was asked to write a letter to Santa as an assignment in her first grade class.  The letter started out like most of them do: "Dear Santa,  Hi! How are you?"  It was written in very neat handwriting with good spacing and sizing of the letters, and I’m sure the teacher was very impressed, until she got to the more unique part where my daughter wrote, “My mom says you like behr more than milk do you? Even hot?”

My daughter finished the letter with her list of a few things she wanted Santa to bring her that year and a “Thank you!” and then signed her name at the bottom of the page.  She added a couple of little drawings out to the side which she often did in those days; I doubt that distracted the teacher from the Mom ♥ Beer message in the body of the letter though.  The letter was mounted on a piece of construction paper and taped to the classroom wall for all to see at the PTA Open House that week.  I remember telling my dad about it on the phone the next day and hearing him laugh through the phone as if it were the world’s funniest joke.   “It’s like a treat you gave to yourself years later,” I told him, to which he laughed even harder.

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.

What's in a Name?

I read an article recently about how stressful some people think it is to choose a name for their child: 

"The New Baby Name Anxiety"

Like a lot of things, though, I think the way a person feels about that process really comes down to perspective.

Personally, I considered it an honor to be in a position, along with my husband, to choose a name for both of my children. When I was pregnant with my first child, I read somewhere that it can put a person in a "position of power" to have a name that follows this rule: the last syllable of the first name should start with the same sound as the first syllable of the last name.  That sounds complicated, but it really isn't; an example of this is Stephanie Nelson - the last syllable of "Stephanie" starts with an "n" sound, and so does the first syllable of the last name.  

Obviously, if someone uses a nickname and/or if a woman marries and takes her husband's surname, that pattern may not hold as intended.  I named both of my children with that guideline in mind, anyway, though.  Of course, whether or not that rule is true is really just conjecture anyway.  Who really knows what's in a name??  

Whether or not name selection seems overwhelming can depend on how the parents-to-be view things.  While I think there are definitely some names out there that are a little "out there," it's possible that some people put too much thought into what names are too trendy or popular.  When my sister Jennifer was in the second grade, there were three other girls also named "Jennifer" in her homeroom, which was obviously confusing for everyone involved.  The teacher told the Jennifers to work out what each of them would be called so that there wouldn't be any mix-ups, and one of them right away called dibs on "Jennifer."  Another said she liked to be called "Jenn" and the third one quickly chimed in that she could go by "Jenny," which left my sister as the lone non-nicknamed student.  It was a Friday, and the teacher sent her home to think about it for the weekend, as if it was a homework assignment ... or a punishment.  

My sister didn't seem to mind, though; she announced to my family that she needed a nickname and it couldn't "Jenn" or "Jenny."

"How about 'JB,' for your initials?" Dad suggested.  "OK," she agreed, and that was that.  

Except for some reason I felt the need to have some input into the situation.  Later that weekend, the newly coined "JB" and I were floating around in a swimming pool, just the two of us, and I told her that I wasn't going to call her by that nickname.  "I'll either call you 'J' or 'B,' whichever you prefer," I told her.  "I'll take 'J,'" she said, and thus her family nickname was born.

When my sister Nancy and her husband were trying to choose a name for their baby during her pregnancy, lots of different name combinations were considered.  They did not find out the gender of the baby while Nancy was pregnant, which afforded us an opportunity to chime in on ideas for names of both genders.  In no uncertain terms, there were lots of cooks in the kitchen for that project.  The girl name was easier, because Nancy had had a favorite girl name since childhood.  But the boy name was open to all kinds of possibilities.  By the baby's due date, the parents-to-be had narrowed it down to three boy name possibilities, and then, two days later when Nancy went into labor, they announced that they had shortened the "in case of boy" list to two.  A few hours later, with all of us there and with the baby's arrival getting very close, they were still discussing which boy name they preferred.  Finally, less than an hour before the baby was in Nancy's arms for the first time, she and David came up with a plan: when the baby was born, if it was a boy, they would wait to see with which hand he reached out first - if left, the name would be one of the two choices, and if right, the name would be the other.  Fast-forward to "it's a boy!" and the moment of decision - and it was the right-hand reach that won out, with the newest addition to our family essentially choosing his own name, Crosby.

Open to Hope

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

Click HERE to read the article.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Truth about Childhood Cancer

September is National Childhood Cancer Awareness Month, and I'd like to share some information about a project about which I have recently learned in regards to childhood cancer.

This project, called The Truth 365, is a ground-breaking, grass-roots documentary film and social media campaign that has set a goal to give a voice to all children fighting cancer and those who care about them.  They want to make all of us aware of the things that need to be done in battling pediatric cancer and to spotlight the state of childhood cancer research funding by uniting the childhood cancer community, government officials, top pediatric oncologists, and several of the country's most influential celebrities. 

This is an important effort, and here's why:  The Truth is that childhood cancer research is vastly underfunded, and the funding that's needed needs to become a priority for all of us, right now, because childhood cancer is the #1 cause of disease-related death in children under the age of 14, killing more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined. In the United States alone, 13,500 children are diagnosed with cancer every year, which translates to 46 children and their families getting a cancer diagnosis every single day, 365 days a year.  And although one out of every five of these children who are diagnosed with cancer will die, those who survive are often left with life-changing side effects from the cancer and the treatment that was used, which is often based on research done on adults with cancer instead of on children. The Truth is that the incidence of invasive pediatric cancers is up 29% in the past 20 years, and yet only $20,000 is invested in cancer research for every $595,000 invested in pediatric AIDS research.  Of the National Cancer Institute's budget of $4.6 billion, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancer combined received less than 4%.

The Truth is that this isn't right - and that it's not acceptable just to look away, as if these statistics don't affect every one of us, because they do.  To learn more, check out the Facebook page for this campaign and the group's website  to find out what's going on in their efforts, and stay tuned for the launch of their film which is due out on September 13.  

Being Present

One thing that I think I got better at during my dad’s illness was being present.  When I think back to when my children were very young and there was a lot of just being there to be done, I don’t see myself as having been good at it; so often when I should have been completely focused on the joy of motherhood, I remember feeling like I needed be taking care of something else – work, household duties, or whatever – instead of basking in the good fortune that had come to me because I was able to spend time with them.  I don’t think I was in the moment often enough back then, and, to be honest, it’s something with which I’ve often found myself struggling in many contexts over the years.

But when I was told of Dad’s diagnosis, even though I didn’t (couldn’t) believe the prognosis, I realized the preciousness of spending time with him, just in case.  When my family was told the grim statistics that were so caustically presented to us, immediately we were all reeling over the extreme vulnerability of the man we loved so much, and maybe even that of life in general.  From the time Dad was initially taken to the hospital by ambulance, in some distinct ways he seemed so different from the man he really was, but in other ways he was, well, just himself.  What Cancer didn’t take from him was his sense of humor, his kindness, his tenacity, his love for his family and friends, and maybe even his belief that things would turn out all right.

Throughout his battle with Cancer, at least some confusion was there for Dad, at times a good bit of it, but his brilliance was still there too.  As much as we wanted to protect him and to have as much time as possible with him, he worked even harder to protect us and to have as much time as possible with us, and I will always remember and respect the grand effort I am certain that took on his part.  

Over the many years that Dad was in peak physical condition, especially when he was marathon-ready, he was thin-statured.  His son-in-laws and some of his friends used to jokingly call him Skeletor and say that he looked like a POW.   (Dad took that as a compliment: “Less weight to carry on my run!” he said enthusiastically.)  But at the end of his life, Cancer actually made him a Prisoner of War – literally overnight, he couldn’t go where he wanted to go or do what he wanted to do.  Hell, he couldn’t even be left alone for one minute for fear that his “I can do it myself” attitude and the impulsiveness and disregard for safety that were handed down by the disease would land him in the floor.  Obviously, nothing and no one had been able to keep him safe from Cancer, and, the way we saw it, we’d be damned if we weren’t going to try our absolute best to keep him safe from everything else.

And that’s where being present became necessary, right from Day 1 of his illness.  That’s also were being present became a privilege for those of us who loved him so much; it was a crash course for me in priorities and in time management.  At first, as I sat with Dad and even while I helped him with the many things with which he needed help, my mind raced ahead and then behind and then ahead again.  If not for the fatigue that became so extreme and so pervasive for my mom, my sisters, and me during the ten weeks we cared for Dad, we would surely have not been able to fall asleep at all for the whirling and racing our minds were doing.  As it was, though, by the time Dad entered rehab just a few days after his brain surgery, being present was all I could do, and, as well, it was all I wanted to do.

Along the way, Dad seemed like he still had plenty of fight left in him, until he didn’t.  The world, in Dad’s eyes before Cancer, was a great place, full of fun things to do and people to interact with, full of adventure and dreams and things to look forward to.  We watched as Cancer and the four walls of the hospital, the rehab center, his house, and then the hospital again changed that over time, though, and as the light and the happiness started to leave his eyes.

People going through the kind of traumatic experience that my family was while Dad was sick are not always the easiest people with whom to interact, we knew that, and we did what we could to follow Dad’s lead and to be appreciative and patient.  Some of the nurses and techs we clicked with, and some of them we tolerated while we counted down the minutes until their shifts were over.  We weren’t ourselves; we were busy being present and taking care of Dad with every bit of intensity that we could muster, 24 hours a day.  Fear and anger and helplessness and sorrow and fatigue changed who we were; I think most of the people we knew were aware of that and realized that our world had been turned upside down and we were just muddling through.  

In the months since Dad went on ahead, I think I have lost a lot of the ability I had gained in being present.  My mind so often flashes back to scenes of Dad struggling or the faces of the people who didn’t help us and didn’t seem to care that we were failing in our efforts to save him.  It’s like a remote control gone haywire with a life of its own that's controlling my thoughts sometimes when I should be controlling them, so that I can pay attention and be present, especially when I am lucky enough to have time to spend with my family and friends; I cannot control those flashes or the distractibility and the emotions that come with them.  I am very appreciative of the times when I can focus, whether it is to concentrate on doing something that needs to be done or to take a breath and feel some positive emotions.  Oddly, sometimes when I catch myself feeling happy, I’m happy that I can be happy in that moment, but, as in a sky without a cloud in sight, it also makes me anxious and sad to know that there is a black cloud that out there that will inevitably come near again at some point in the future.

Being present more consistently has gone back on the list of goals that I have for myself, and I hope to achieve it one day soon so that I can more often bask in the good that is all around me, despite the fact that one of the best people in my life is no longer able to be present to enjoy it with me.