All Done

In the months after my dad's death, I went to weekly meetings of a grief support group that was comprised of people who had lost a loved one at some point within the past year.  There were about a dozen group members, ranging in age from a college student to a woman in her 70's.  At the second meeting, we were asked to go around the circle with each of us telling what we had been thinking about that week. One woman, who had lost her adult daughter to cancer, said she had sat for hours staring at a pile of blank thank-you note cards that she knew she needed to write to thank people who had helped her during her daughter's illness and during the week of the funeral.  She said that she just hadn't been able to start the process of writing the notes.  She thought for a minute, obviously deep in thought, and then quietly said to the group, "I guess I feel like if I get those notes written, I'll be all done with the whole process of taking care of details for my daughter.  Of my grief process.  Maybe even of my daughter, and that's not something I think I can survive."  Tears fell silently down my face as I listened to her talk and wished with all my heart that I didn't understand just what she meant.

I feel that way about talking about my dad's illness, about his life, and about my grief.  If I stop talking (writing) about it, I feel like I'll be all done, and, like the woman in the support group, that's not something I think I can survive.

Damn, I miss him, every day.

How to Help

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

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

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

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

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

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

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

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

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

SWEET!

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


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

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

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

A Letter to the Director of Nursing

In honor of Nurses' Appreciation Week this week, I am posting a letter that I recently sent to the Director of Nursing at the hospital where my dad was treated in hopes that she is able to use the information I provided to recognize three nurses at that facility who provided truly extraordinary care during my dad's illness.

Dear [Director of Nursing],

I am writing to let you know about three nurses who provided outstanding care for my father, William L. Bullard, when he was a patient on the oncology floor in December of 2010.

My dad was initially hospitalized at Centennial just a few days short of his 67^th birthday on October 23, 2010, when he was transported there due to disorientation experienced on a ten-mile run.  An MRI showed a large mass in his brain that was later revealed to be Glioblastoma Multiforme, which as you know is Stage IV brain cancer. He had surgery and spent a few days in the Neuro-ICU and then a few more on the Neuro floor, and, although in both cases the nursing care was adequate, my family was glad when he was discharged after a total of ten days there. 

A few weeks later, on December 21, 2010, my dad was re-admitted to Centennial, and again in the ER the nursing care was fair, in most cases competent but not outstanding by any stretch.  When he was moved up to the Oncology floor, though, we were lucky enough to have our case assigned that night to a nurse named Meredith who provided exceptional care for Dad and who took both Dad and my family under her wing, even requesting to have Dad as her patient on other shifts she worked while we were on her floor over the next several days.  She provided highly commendable care for Dad and for us; she seemed to see not just Dad but those of us caring for him as her patients, and she gave us not only the physical support we needed but some much-needed emotional support as well.  As my sister later said, Meredith appeared to see Dad through our eyes, and that is something that was so significant to us and that we will always remember. To us, Dad wasn’t a terminally-ill cancer patient; he our champion, an Ironman athlete, brilliant in thinking and indomitable in physical presence.  Very unfortunately, though, during the course of his illness, the majority of the health care workers with whom we came into contact appeared to see him just as a patient, and honestly it seemed like some of them didn’t really see him at all.

My dad was very sick and as a result was intermittently confused and distressed while we were in the hospital that second time, but he took an instant liking to Meredith, as did we.  She bore a resemblance to one of my sister’s best friends from high school, a girl named Angie.  Despite the fact that Dad hadn’t seen Angie in many years, he too noticed the similarity in Meredith’s appearance and started calling her Angie, which Meredith said she took as a compliment.  “I feel like I’ve known you for a long time, too!” she told Dad, which made him smile and warmed our hearts.

Nurse Meredith, aka “Angie”, was with us again for the 7 p.m. to 7 a.m. night shift that second night we were on the Oncology floor (12/22/10).  My sister and I stayed overnight with Dad and were impressed by not just Meredith’s competence but also by her compassion and her coolness under pressure, particularly when things started spiraling out of control for my dad late that night.  For no apparent reason, his heart rate shot up and he started having trouble breathing; we called for Meredith, who sprinted down the hall to check on Dad but couldn’t figure out what was going on.  Dad’s heart rate continued to climb, and then he started saying he was freezing and then making comments that we didn’t quite understand, with lots of talk about death which shook my sister and me to the very core.  Despite the temperature of the room being warm and several blankets being placed over Dad in the bed, his teeth were chattering so much that we had to strain to understand him. 

My sister and I were terrified; we agreed later that it was the first time we thought Dad was actually going to die right in front of us, and we felt completely helpless.  Meredith stayed right with us and was such a calming force for Dad and for us.  At one point, the three of us were almost lying on top of him trying to warm him up and to calm him down.  After more than an hour, we realized that neither verbal nor physical comfort measures were going to be effective in battling the panic and the terror Dad was experiencing, and Meredith raced to get a sedative for Dad, which, five minutes later, had him resting soundly.  

Looking back, I’m not sure that my dad would have made it through that night without Meredith, and certainly my sister and I would have been much more at a loss without her expertise and, more importantly, without her kindness, which is something that stays with us to this day.

Although Dad ended up being stabilized for the night, unfortunately his condition continued to deteriorate, and, on Christmas Eve, he was transferred to the ICU – actually, due to hospital staffing shortages during the holidays, to the CCU.  There we dealt with many challenging issues, some involving nursing and some not, but suffice to say our stay there was a terrible experience overall, and we were very glad when Dad was moved back to the Oncology floor two days after Christmas – and even happier when we realized that we had once again been lucky enough to be assigned to an exceptional nurse, this time in the form of an RN named Dave.  Again due to staffing problems that we didn't really undersand, my dad was placed on a unit that didn't really fit with his diagnosis; this time it was the Bone Marrow Transplant unit on the Oncology floor.  

My dad had been struggling to take in enough calories for quite some time; he often reported feeling “zero hungry” or, even worse, feeling nauseous at just the idea of food. When we clued Dave into the fact that we were very concerned about Dad’s caloric intake, Dave offered lots of “extras,” some of which Dad said “yes” to and then ate (including a Snickers bar).  Without even being asked, he brought extra blankets because Dad continued to say he was cold, and he provided extra pillows to prop Dad up so that he felt warmer and more secure.  Unlike our days in the CCU, with Dave it felt like we were no longer having to beg for what Dad needed; in fact, it seemed like Dave somehow anticipated not just Dad’s physical needs but also many of his emotional ones as well.

Throughout his stay in the hospital this second time around, including the four days in the ICU, pain from a bed sore on his lower back had continued to plague Dad.  Dave was excellent at gently re-positioning Dad in different ways in the bed so that the pressure was taken off that area; he made an effort each time he came into the room to explain what he was doing and why to Dad and to us and even had me demonstrate my understanding of skills like propping Dad up with lots of pillows and rolled blankets.  He wasn’t just acting as a nurse; he was also a teacher and a friend.

Tag-teaming with Day Shift Dave, as we called him, was Night Shift Jim, another nurse in whose care we were grateful to have Dad placed.  Like Dave, Jim was very patient in teaching us about how to address Dad’s medical needs.  Both of them somehow balanced empathetically caring for Dad with providing us with a listening ear and a shoulder to cry on in the hallway.  They seemed to be available whenever we needed them, but we didn’t feel like they were hovering or intruding.  Looking back, I see that, whether it was because they saw up close how very sick Dad was or because they took the time to listen to him and to us, they somehow “got” the seriousness of Dad’s condition and even the rhythm of his illness and of our grief.  

After almost two weeks of seeing Dad in a downward spiral, one morning I stood in the hallway outside of Dad’s room crying, and Dave came over and put his hand on my shoulder.  He said he had heard my conversation with the oncologist during which I had asked how we would know when it was time to consider hospice – and the oncologist had essentially said “Not yet,” which I felt like was not an answer to my question.  “He doesn’t see what we see,” Dave said.  “I know!” I wailed.  “Sometimes that is the case with oncologists,” he said gently. “It’s like their only goal is a cure, and sometimes that just isn’t going to happen.  Sometimes treatment doesn’t work.  Sometimes treatment isn’t what a patient really needs or wants.  Sometimes the oncologists don’t know when to say when.” He paused, and then he added, “You can ask for more information on Hospice without making any kind of commitment.”   As my sobbing subsided, I considered his words carefully.  I knew we needed help and more information before making any kind of decision.  I knew we had to figure something out and that we needed to do it quickly. 

Later that day, my sister and I approached Dave to talked more about hospice.  We had seen a flyer for one hospice provider in the waiting room (not the most uplifting thing to see in an oncology-ward waiting room, I must say, but we ended up being glad to have the info), and we were familiar with two other providers in the area – one was the agency already providing hospice care for my dad’s mom, and the other had helped care for my mom’s mom in the end stages of her battle with cancer almost 18 years before.  Dave suggested that we make an appointment with a representative from all three agencies to learn about each one.  “I think you should sit each of the reps down and ask them specifically, ‘What makes your agency the best choice for us?’”  

We took his advice to heart, and we did just what he had suggested.  

In what came to mirror the way I desperately wanted to shield Dad from the knowledge that he had cancer around the time of his surgery, I pulled out all the stops to avoid having him know that we were signing on with hospice. This seems incredibly short-sighted now, but at the time I wanted the focus to be on living, not dying, even then.  When I talked to Jim about my plan, he let me tape a sign to the outside of the door to Dad’s room that said, “DO NOT MENTION HOSPICE! PATIENT KNOWS HE IS GOING HOME TOMORROW BUT IS NOT AWARE OF HOSPICE SERVICES.”  I'm sure he realized the ridiculousness of my request - as if shielding Dad from knowing about hospice could save him from what I really wanted to protect him from - but he respected my grief process and also, I guess, my need to try to control the very few things that I possibly could at that point, and I was very grateful for that.

While Dad slept that night, my sisters and I talked to Jim again about how worried we were that we wouldn’t be able to take good enough care of Dad at home.  Jim was very reassuring and even helped us to make a list of supplies that we would need to have on hand at home, again honoring our desire to feel that we had some kind of command over an out-of-control situation.  He sang the praises of hospice care and of the support they had to offer, which we soon learned to be the absolute truth. 

Looking back at my dad’s last few days in the hospital, which turned out to be just about a week before he died, I am not sure my family would have decided to take Dad home on hospice there at the end without the input and the support we received from both Jim and Dave.  For my family and certainly for my dad, as my mom and my sisters and I have discussed many times over the past couple of years, while changing the setting in which Dad spend his last few days probably wouldn’t have lengthened his life any, having him at the hospital instead of in the comfort of my parents' home certainly would have changed the quality of that time for him – and for us, and that is why we will forever be grateful for the way things happened there at the end of Dad's hospital stay.

I can’t count how many times over the past couple of years I have intended to try to get a message to these three nurses to thank them.  I hope they are still with Centennial and that the details I have provided will help you to identify them so that they can be recognized, although appreciation in any form seems inadequate given the gift with which they left my family through the truly exceptional care they provided during the most difficult time of our lives. 

In case this does make it to Meredith, to Jim, and to Dave, though, here’s my message: thank you, and may your kindness and your skill be recognized and rewarded; my family will never forget you.

Very sincerely,

Stephanie Bullard Lancaster

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.

So Much For No Sequestration

I didn't know what the word "sequestration" meant until recently; in case you don't know, it's a term that refers to the making of general, broad-sweeping cuts in government spending due to budget shortfall.  

During the final 2012 Presidential debate, Obama was asked about the budget sequester, and he said, "It will not happen."

Unfortunately, though, it is happening.  Funding for categories of things in the budget are being cut and/or put on hold indefinitely, including Head Start education programs, food inspection, and medical research.  Instead of looking at items in the budget individually to see where cuts can be made without causing long-term, wide-spread harm, with a sequestration, entire categories are being stricken from the budget.  To me, making cuts in this way seems haphazard, short-sighted, and scary.  Maybe careless, lazy, and desperate too.  Actually, there is a one-word descriptor to describe the "plan" that was used by columnist Robert McCartney in an article today in the Washington Post that I think is spot-on:  Dumb.  

               CLICK HERE TO READ THE ARTICLE

Some of the areas in which these crazy cuts are projected to be made seem like a gamble; maybe, just maybe, things will turn out ok despite the loss of funding.  One area, though, in which cutting support in such an extreme fashion is literally a matter of life and death is medical research.  As the article above says, $1.6 billion is slated to be cut from the budget of the National Institutes of Health, which is already underfunded.  "NIH grants pay for most of the basic research in universities and laboratories across the country, [which] has led to practically every major U.S. medical breakthrough since World War II," McCartney reports.  

I read a lot about research in the areas of cancer and other diseases, and lately more and more often I've been seeing information about how we are so close to figuring out a cure for many of them.  Not just a treatment - a cure!  Obviously, without funding, this research will be put on hold or even shut down, and that swings the making of these cuts over into the category of being downright immoral, in my opinion.  

I wonder if the members of Congress and the President actually recognize what will happen; I wonder if they have thought about the implications of the cessation of medical research, either in broad terms or in a personal sense.  I doubt any of them have lived their lives without being touched in some way by cancer; maybe they should sit and talk for awhile to someone they know who is fighting or who has fought it, or maybe they should look at a photo of someone they've known personally who has lost their life to the disease, just to be sure they realize what they are doing with such over-zealous use of their red pens.

I realize it's challenging to figure out where spending cuts should occur when there is a budget deficit, but I'm pretty sure nobody has ever told the members of Congress or the President that their jobs would be carefree or easy.  There are difficult decisions ahead for them to make, for sure, but trying to solve the problems by simply indiscriminately slashing entire categories is just plain - and here's one more word to describe the whole thing - cowardly - and they should be ashamed.

The Night My Husband Went Bald

Two days after my dad went on ahead, my siblings and I, our spouses, and our children all spent the night with my mom.  My brother-in-law Peter sat at the dining room table to work on creating a slideshow of photos of my dad to play at the memorial service the next day; with the rest of us taking turns handing him pictures to scan and giving input about what music to use, he worked on the project for hours into the night.  In other areas of the house, there was talking, comforting, and some crying going on; mostly I think we were all just trying to absorb what had happened and to keep ourselves together any way we could so that we could make it to and then through the memorial celebration we were hosting the next afternoon in my dad's honor.  

Just before midnight, we set up pallets on the floor of my parents' bedroom to the side of their bed, and then Mom and I went to bed in that room with the kids.  Exhausted, we fell asleep just minutes after we had closed the door to the room.

At some point in the night, I woke up and went upstairs to get in bed with my husband; the problem with that plan, though, was that when I'd gone to sleep downstairs it had not yet been determined where the other adults besides Mom and I were sleeping that night.  It was chilly upstairs, and I was anxious to get into a warm bed and go back to sleep.  I peeked into one bedroom and then into the other and saw two bodies in each bed, and so I looked in the TV room and saw a single person whom I deduced was my husband lying on an air mattress completely covered up with a sleeping bag.  I tucked in beside him, and he stirred a little in his sleep, causing the sleeping bag to shift and giving me a little bit of a view in the mostly dark room of his face and his head.  

In that moment, my heart skipped a beat. It was my husband's face, but it didn't look like his head: every bit of his hair was gone.

Without even thinking, I reached out a touched his head; he woke up and said, "I got my head shaved."  

"What???" I said, in disbelief.

"This way your mom can just look around for a bald guy at the memorial service if she needs anything," he explained, still half asleep.  

I was touched.  Shocked, because I'd had no idea that head-shaving was even being considered, but touched.  My dad was bald, as are my brother and both of my brother-in-laws; Kevin was the only adult male in the family with hair.

We went back to sleep for a few more hours, and then we got up and got ready for the gathering for the memorial.  All day I kept looking at Kevin's bald head and doing a double-take; he looked so different than he did with hair.  It somehow fit, though, in that place and time, as an act of tribute to my dad and as an act of protection and support for my mom and, by extension, for my sisters and me.  His newly bald head and even the grouping of the quartet of bald guys at the memorial were quite the topic of conversation, and thankfully it made getting through one of the hardest days of our lives a little bit easier.

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.

Childhood Cancer - How We Can Help

Did you know that, despite that fact that over 13,500 children will be diagnosed with cancer and about 2,500 kids in the U.S. alone will die from this disease this year, only about 4% percent of the annual budget of the taxpayer-funded National Cancer Institute (NCI) is dedicated to childhood cancer?  

Hearing that makes we want to do something about it.  All cancers are devastating; childhood cancers are the worst in that the smallest, most vulnerable amongst us are affected, not just by the disease but by the ravages of the often brutal treatment.  Obviously the children who have been diagnosed with cancer who have not survived have had a great deal stolen from them, as have their families.  But here's another point to consider:  even children with cancer who do survive are being robbed of those months and years of their childhood and are often left with secondary effects of the cancers and/or the treatments that they had to endure to make it to adulthood.

Through reading about cancer in general and then about childhood cancer specifically, I found out about a campaign called The Truth 365, which is an organized effort to educate the public and generate action to help fight childhood cancer through film and social media.  Through the group behind this campaign, individuals like you and me are able to DO SOMETHING to help, through taking just a few minutes of our time.  It isn't a telethon or a fundraiser; it's an awareness campaign, and it's something that has never been done before in this way.

If you are interested in helping in the effort to protect children from this terrible disease, post a link to this blog entry on your social media accounts like Facebook and Twitter and share it with people you know. Then take some time (about an hour, but well worth it) to watch the powerful documentary film produced for The Truth 365 to find out some simple things that you can do to help battle this terrible beast:

The organizers of this group are trying to raise awareness to increase funding for research and treatment of childhood cancers, not just so that more children who are diagnosed with cancer live but also so that those who do survive are not left with a lifetime of detrimental side effects of treatment.  They want people to understand that the statistics that we hear - that up to 75-80% of children who are diagnosed with cancer survive - paint a picture that is not all together accurate.  That statistic, for example, is only based on a five year survival rate, and many of the children who make it to that point do not go on to survive longer term.  They want everyone to be aware that the increase in survival rates that we hear about in kids with cancer over the past few decades have mostly come from these children being given greater and stronger amounts of drugs that were developed for use in adults and that very often no one knows exactly what the effects of these treatments in children will be.  They want us to see that doctors and other health care professionals who are trained to treat these very sick kids and to research the treatments that can save them are having to spend time fighting for funding instead.  They want us to know that with no money and with just a few minutes of our time, we can do something to help in this cause.

The film will enlighten you to the facts that we all need to know, whether we personally know a child who has cancer or not.  Through the film and through viewing the group's website, you will find out about action steps that need to be taken to further increase awareness and support and to secure the funding needed.  You will learn in viewing the film is that each of our Congressmen have been asked to sign a pledge which affirms his or her support for children with cancer.  

A listing of those U.S. Representatives and Senators who have signed the pledge has been posted here -  

http://www.thetruth365.org/pledge/  

by state, so that we can see who still needs to be encouraged to sign this pledge.  For example, in Tennessee, two members of Congress have yet to commit: 

They are asking us to contact members of Congress who have not signed the pledge to ask them to do so.  Most of the contact info you need is right there on the site; if you live in Tennessee, you can click here for Bob Corker's contact info and here to contact Chuck Fleischmann to let them know the importance of their commitment to this issue.

When you get to the website, bookmark and check back as often as possible to find out about the latest iniative of the group  and how you can help, often with just the click of a mouse button.  

There are lots of causes and organizations that ask for donations of money and items, especially during this time of year, but this one is unique in that all they are asking for is a few minutes of our time.  The greatest reflection on us as a society and in my opinion as individuals is the way we treat those who are less fortunate than we, and I can't think of an easier way to do that than to participate in this effort.

How You Can Help Me (Author Unknown)

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

HOW YOU CAN HELP ME

~author unknown

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Gift Received

"The true meaning of life is to plant trees, under whose shade you do not expect to sit." ~Nelson Henderson

GENEROSITY is central to the practice of many religions and cultures and manifests in many ways.   It is a practice - and a concept - that we continue to learn about and to consider as individuals and as groups of people.

Before my dad got sick, I viewed generosity mainly in terms of giving money, material goods, time, and/or attention to those in need; honestly, donating was something I did because I felt it was something that I should do.  Maybe, in some ways, I even thought that being charitable would bring about some good karma to me, give me a pass on hardships, and other things in this vein.

Growing up in a church, I’d heard all about giving and was very familiar with lessons from Sunday School about how it’s better to give than to receive, laboring to support the weak, and refreshing others through generosity so that we ourselves may prosper.  I’d done some reading about the idea of giving in general and knew that Buddhist principals of generosity, Jewish beliefs about the way of giving, and philanthropic views of Hinduism and other religions as well as various cultures like the Native Americans who believe in the circle of life - all seem to be based on similar ideas, mainly that meritorious effects come from being generous. All in all, from my viewpoint at the time, I generally considered myself to be a person who gave to others in a generous, unselfish manner.

I’m not sure exactly when or where, but somewhere along the line as part of what my family went through with my dad’s illness and subsequent death, I have come to have a different perspective about having a charitable spirit.

I no longer think it’s right just to use The Golden Rule (interestingly also sometimes referred to as “the rule of reciprocity”), to do unto others as you would have them do onto you, as a guide.  From my perspective, people should show kindness and generosity to other living beings just because we can, and that’s what we should be teaching younger generations.  Not because we want others to help us when we are in need, not because we think that will be our ticket into heaven, not to make someone proud or to impress somebody, and not because doing something for someone else may get us a mention in the newspaper or even as having been "a good person” in our obituaries.

Our spectrum of motivation should not be linked to a reward for doing what we know should be done, nor should it be done to avoid a consequence for not.  Self-interest should in no way enter the equation, only the interests of others and of humanity in general.  Regard for others is ingrained in the majority of us (or it should be), and thus benevolence should also be part of our nature and should not require a burden of guilt, a threat of exile, or a reward of attention, power, popularity, or anything else.  There should be no cost-benefit analysis in doing what we know is right.  In short, we should help others because we can, not because we feel we should.

A few years ago, before my dad got sick, I had a friend who became very sick.  Those of us who knew her felt terrible about what she was going through, and we desperately wanted to be able to do something to help her as she struggled through treatment and relapse. The woman was very humble and really did not like attention, and she said it embarrassed her when other people gave her things or did things for her.  Each time I saw her, she thanked me profusely for whatever relatively small thing I had done for her or her family last, and many times she blushed and stammered around in an effort to convey her appreciation.  In turn, when she would do this, it would make me feel uncomfortable, and I often left feeling guilty and sad that she felt that she had to shower me with thanks.  It felt as if I had burdened her instead of giving her a gift.  No matter how hard I tried to stop her from lavishing me with praise and gratitude, she insisted on carrying on, and a couple of times she even said that she didn’t feel worthy of the support being given to her and her family.  It became kind of a struggle between us over time, which was obviously not at all the way I intended for our interaction to be.  Unfortunately, her health continued to decline, and the last conversation I had with her before she went to the hospital for the last time was a back-and-forth exchange just like the ones we’d been having the whole time she was sick.  We didn’t express our feelings for one another or talk about anything meaningful because we were too busy thanking each other, and I think the talk left each of us feeling as if we weren’t really able to get our point across to the other one.  Here's what I learned from that experience, though: For someone to feel the gift of giving, one must be willing to receive.  And that lesson has fed into my thinking on the whole subject as my personal experience has broadened over the past couple of years.

As I’ve mentioned before, there was much kindness poured onto my dad and my family while he was sick, not just in actions and in materials goods but in messages and thoughts.  Throughout my life, I’ve heard much talk about the kindness of close friends and sometimes (I suppose because it’s even more surprising to us when it happens) even about the kindness of strangers. But what about the kindness of those people who exist in between? Those people who we know and see, but not very well or very often. What about these people we call acquaintances?  To me, during my dad’s illness and after his death, those are the interactions that surprised and affected me the most because it was obvious to me that those people didn’t help because they felt they should or because of what they were likely to be rewarded for doing but because they could.

Here’s something else that I realized when my dad was sick: to be able  to do for others is a true blessing.  One who does so out of inner joy instead of outward compulsion or obligation is truly blessed.  If I give to someone else for any reason other than simply for the sake of being able to be generous, I am worse off than the person in need, by my own choice.  If I choose to take joy in the tasks I am fortunate enough to be able to do and to embrace the opportunity with devotion and gratitude, it is I who is being served and who is receiving a gift.

This new perspective, one that has come partially from being on the receiving end of generosity and partly from looking at things in a different way, as I have done since my dad’s passing, doesn’t necessarily make me want to be more philanthropic than I was before, because I think I was already charitable whenever I could be.  However, it makes me look at the opportunities that I have in my life to give to others as a blessing, and, perhaps more importantly, it has helped me to find the words to explain to people whom I have been fortunate enough to be in a position to help in a way that works better to facilitate their understanding of the exchange that goes on between us; it is I that owe them the gratitude for allowing me to help, not the reverse, and denying me the opportunity to do so denies me the chance to receive the blessing of giving.  And I know without a doubt that the benefit of the philanthropy is much more to the giver than to the receiver, thus placing the receiver in the position of being a giver himself.  It has become clear to me that I am receiving a gift whenever I am in a position to support another living being, and I am completely clear on why I am providing that help and on why I am so grateful to have to chance to do it: because I can.

One person can make a difference, and every person should try.  ~John F. Kennedy