The Right to Die

This is a follow-up to the previous post, Without a Sound:

There’s a lot that bothers me about the handling of the news about Brittany Maynard, the 29 year-old woman who chose to hasten the end of her life after she was diagnosed with Glioblastoma Multiforme (GBM).  Probably the thing that disturbs me the most is the confident way that so many people have commented on her story and her decisions, as if they have any idea what has really been going on behind closed doors in her life.

As someone who was there on the scene for most of the 75 days between my dad’s diagnosis of GBM and his death, I feel like I have a fairly good idea what was going on, but I also know as a result of my experience that there are some things – even in highly publicized cases like hers – that anyone on the fringe or further out cannot know, and that’s the way it should be.  Health issues are private and personal.  The fact of the matter is that even with as healthy as Brittany looked when her image appeared in the news just days before her death we don’t know what the cancer inside her brain was doing to her, and we don’t know the intricacies of her diagnosis or prognosis.

Another thing that disturbs me is the way the media has portrayed Brittany as a hero, as if she was a crusader of sorts because of a personal choice she made to make another personal choice public.  To me, it seem like this implies that a person who does not make the same choices that she made is not as important or as courageous.  I'm glad that Brittany and her family had the opportunity to make the choices that they made, but I also think that people in other situations need an equal amount of respect and compassion. And my bet is that she neither viewed herself as a hero nor wanted to be viewed as one; like the rest of us, she was probably just doing the best she could to get through life and the hand that she was dealt in life.

The tricky thing about commenting on such an emotionally charged topic is that logic often takes a back seat in such a situation, as does respect for the views of others. I have had a hard time figuring out exactly what I want to say about Brittany’s story because I see the irony in producing commentary about the error I think others are making by commenting about the case.  The potential for expressing bias as fact, judgment, condemnation, shaming, and labeling is huge; this is what we tend to resort to when threatened or frightened -- and there's not much, if anything, in life that's scarier than facing pain and the end of life. When I think about the many comments that have been made about how Brittany chose to handle her medical condition, most of which have seemed judgmental and harsh to me, I can't quite get past the hypocrisy of saying "Shame on you for shaming someone else" or the irony of judging someone for being judgmental.

Here’s a confession: when I read about Brittany’s success in doing some of the things on her Bucket List, I felt jealous and even a little angry.  My dad had a Bucket List too, but he wasn’t able to get to any of the items on his agenda because of what GBM took from him from the moment the condition revealed itself.  I also felt jealous that Brittany’s medical team seemed to have communicated with her clearly about her options … or maybe she was just more able to figure out what her options were because the cancer in her brain hadn’t impaired that cognitive skill in her … yet.

My dad’s doctors, especially his oncologist, didn’t seem to have an accurate view of what was happening when he went into a downward spiral.  It seems like an oncologist would be much better attuned to medical facts so as not to succumb to the attraction of denial, but that was not the situation in my dad’s case.

I honestly don’t know what my dad would have done had we had all of the facts, had he been able to adequately process things, and had he had an opportunity to make a choice that would not put his family in jeopardy in any way.  I know that it would have been nice to have someone – anyone – ask him, or us, about his priorities.  The medical team was evidently too rushed, too uneducated, or too something to think to ask him, and we didn’t know to ask (or what to ask or how to ask it) or to speak up on his behalf until the very end.

As I've said and written about, the diagnosis of brain cancer, especially GBM, is particularly devastating for many reasons.  As a result of the attention brought to GBM by Brittany’s case, NBC news wrote an article about the unique challenges with brain cancer:

Why Brain Cancer is So Lethal

The neuro-oncologist who called me to announce that my dad’s case had been accepted by Duke University is quoted in the article:  “Brain tumors,” he says, “particularly but not exclusively the malignant ones … are in such an eloquent area of the body that surgical intervention may not be possible and other interventions such as radiation therapy may come with a fierce price.”  Yet another thing I wish I wasn’t in a position to have to know truth of.

Recurrence of GBM, the article says, is inevitable, at least as the treatment options now stand.  As I wrote about in the last post, this is especially true in certain variations of GBM. 

Another thing that bothers me about the coverage of Brittany’s story is the overuse of the phrase “death with dignity.”  Maybe it’s just a weird point of sensitivity of mine, but I don’t like the fact that that phrase seems to imply that there is no dignity in making a different choice – or in not having a choice – about the specifics of an impending death.  That feels like a really sick kind of competitiveness: who did death better???  Even the phrase “the right to die” seems muddled to me: I’m pretty sure that dying is a natural process rooted in science, not a “right.”  I think better terminology is “to hasten the end of one’s life” or something similar that better captures the fact that one's time on this earth is not going to be long with a diagnosis like this, no matter how things are handled.

We can’t know what the specifics of Brittany’s medical condition were, and we can’t know what she thought or felt when the news of the prognosis and the path she would likely have to travel were delivered.  In an instant, though, her choices - and life as she knew it - were stripped away.  I think, like a lot of people with terminal diagnoses who consider “physician-assisted suicide,” that she was desperately trying to gain some control in a situation that was horribly out of control, and I get that.  If you’ve ever seen someone have a seizure, if you’ve ever seen the terror and confusion in the eyes of someone who is aware that their own mental state is impaired, or if you’ve ever seen the look of humiliation and angst on the face of an adult who has wet his pants because he couldn’t make it to the bathroom in time, then you might have a little bit of an idea of what she and her family were feeling.  If you love a person who is having to endure things like this, plus a significant amount of often unrelenting physical and emotional pain - and who is being told that death is imminent, then there’s a chance that maybe you can relate to what it’s like to feel such a desperate need to try to establish order and control. 

I wish I could say that I can’t imagine what it took for Brittany’s family to support her decision; I’ve tried thinking about what it must have been like on their last night with her or in the last hour they had together before what they knew was going to happen happened; it’s a different kind of horror, I would imagine, than what my dad and my family experienced – but, I would guess, the same kind of love.

 This is a song that my dad loved, played by a musician named

Bernard Stanley"Acker" Bilk who died earlier this week. 

Preparedness

I have a confession to make, one that may surprise people who really know me, especially those who are aware of my love of having things organized and my love for preparedness and for planning.

I am not fully prepared for death or catastrophic accident.  

I don't mean emotionally, or spiritually, ... those are entirely different conversations ... what I am referring to now, though, is legally.

Here's what I think legal preparedness looks like:

*Researching and discussing various life and death and related financial issues so that legal paperwork including a will and a living will have been prepared to detail health care decisions, transfer financial assets, and to put thoughts and arrangements into writing. 

*Having had this paperwork reviewed and finalized by an attorney who also provides advice on issues such as creating a trust and custody of minor children.

*Having organized all of the above as well as information on assets (bank account numbers, documentation of property ownership, etc.), insurance policies, and contact information for key people and having informed several key people that such an in-case-of-emergency file exists and where it can be located. 

One of the many things I learned first-hand from going through the experiences that came as a result of my dad's illness and death is the need for legal preparedness.  While my dad wasn't young, per se, he wasn't nearly old enough to think that there was an urgent need for him to be fully prepared from a legal standpoint for his death or for an illness so devastating that he would be left unable to finish preparing.  He, like all of us, thought that there was still time left to do things like that.

There are other things in life that are different versions of preparedness, things you hear that you should do "just in case" but that you put off for one reason or another.  Sometimes that turns out ok, like if you don't buy the extended warranty on a new refrigerator and either it doesn't break or it does and the repair costs aren't too bad, but here's the truth about end-of-life legal decisions and planning: at some point, it will matter if you haven't gotten your affairs in order.  Unlike other things that can technically be put off forever, this is one thing that will cause great problems if it's left undone.

There are odd terms for doing this kind of thing, really: getting your affairs in order,  making final arrangements, pre-planning (isn't all planning "pre-planning"?).  But it is perhaps one of the most important tasks you can accomplish as an adult, if not for your sake (in case you go on ahead right away instead of hanging in the balance for awhile like my dad did), then for that of those you will leave behind.

People talk about their Bucket List items, things they want accomplish before they die.  But what about what they NEED to get done?  I didn't realize the complexity of what needs to be prepared before I was one of the people needing access to that information for my dad, and I hadn't really considered the implications that could ensue if that type of information wasn't organized and at-the-ready.  It's difficult enough, I'm sure, to pull those documents out and to go through them to see what needs to be done when a death has occurred suddenly and/or unexpectedly.  What we didn't know before, what we couldn't have know until we had experienced it ourselves, was just how tough it was to put all of that together while we were caring for my dad and trying to cope with our own grief during the ten weeks he was so sick.  Not only did we need access to the information that would normally be needed in case of a death, but we also needed to know about other things on Dad's behalf during his illness like long-term disability coverage, health care insurance benefits (Medicare and private insurance), and long-term care insurance.  It took a lot of time and effort from all of us to gather that information and to decipher what needed to be done to make any of it available for Dad's care.  It's something that I'm sure my dad wouldn't have left undone had he been aware of the implications of not being complete in organizing the necessary information.

Now that I've experienced the difficulty of it first-hand during his illness, I KNOW better.  Still, for a variety of reasons (excuses?), I am not prepared, but I have set a goal to get my things in order; I've started the process, and hopefully I can finish it in the next month or two.

It's a depressing and tedious and stressful thing to do; that's for sure.  Nobody likes thinking about the type of what-if's that are involved in this process, but I can only imagine what a gift it would be to have it all together, should a crisis occur.

Here are some resources, in case you aren't complete in your preparedness either:

A website with info about attorney Alexis Martin Neely's book "Wear Clean Underwear" - a great resource about legal planning, especially for parents (Here's a shout-out to my sister JB for finding this one!)

"Getting Your Affairs In Order," - a free Penn State reference guide

Online info from WebMD - "Putting Your Affairs In Order Before Death

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!!

Grand Canyon Memories

This is a guest post written by my mom, whom I asked to tell the story of when she and my dad went to the Grand Canyon several years ago on vacation ... 

One year, for our vacation, we decided to go to see the Southern Rim of the Grand Canyon. Wanting to absorb the full thrills of the National Park, Bill was really looking forward to running some of the trails along the rim.  After spending the night in the historic lodge at the top of the canyon, we planned to ride mules down the trail to spend the night at The Phantom Lodge at the bottom of the Grand Canyon and then to ride back up the trail the next day, a Bucket List item for me. 

Along the mule ride down, we had to wear hats that were secured so that they wouldn’t blow off and scare the mules or litter the park and loose clothes that would protect us from the sun but later be warm enough as the temperature would become much cooler as we approached the bottom of the canyon.  I was concerned about what to wear and the steepness of the trails, and so, for my security and peace of mind, early on the morning of our ride Bill ran the trail for about three or four miles down and then back just to check things out.  He came back with a report for me. (Side note: He often did this while we were on vacation or in a new place in order to locate playgrounds for the kids or interesting things for us to see and do.)  The trail was about three feet wide and gravel and the weather was great – about 75.  I was thrilled!

I was assigned a mule named Ida who was short and sturdy.  Bill’s mount was a gigantic gal by the name of Madonna.  He was placed near the end of the mule train.  Everyone was given canteens to hang on our saddle horns and a small switch that the cowboy leader called a “motivator”.  We used both of these items quite a lot. 

We began our adventure on the gravel trail just as Bill had predicted, but after the first few miles the path became very narrow with lots of stones.  The mules were very sure-footed, but the stones often didn’t provide much traction for them.  We had been told to never lean in the saddle and Bill found this impossible.  As he suffered from a fear of heights, he kept leaning into the mountain, away from the opening to the drop off into the canyon. His mule was much taller than any of the others, and it must have made it more difficult for him to trust her as he was sitting up so high.  We had to stop and cinch up his saddle a few times.  Eventually, the trail led many times to a switchback turn, which caused the mule to project its head out over the canyon in order to turn its body.  For an instant, it felt to the rider almost like hanging in space while the mule repositioned itself to go another direction.  Can you imagine how much Bill disliked that maneuver? Sometimes even I closed my eyes on that part of the ride. 

After five and a half hours of awesome views of the Grand Canyon and the crossing of the Colorado River, we arrived at The Phantom Ranch.  We had a delicious steak dinner and slept in a cabin that fortunately had blankets on the beds as it was indeed very chilly. The next morning, the mules were ready early to leave for the ascent, but, as we were packing up our stuff, Bill told me that he just didn’t enjoy the ride down and would rather run back.  I told our cowboy leader that Bill wouldn’t be joining us, and so his mule was tied to mine. The rest of the group gawked as Bill ran by while they were mounting up. 

We stopped a few times along the ride to rest the horses, but not for long.  Bill said that he stopped for water once, but we didn’t see him until we got to the top.  He had already showered, changed clothes, and was waiting for me, Ida, and Madonna beside the mule corral.     

Don’t Look Back

In April of 2004, my dad and I traveled to St. Louis to watch the U.S. Olympic Team Trials for the Women’s Marathon.  Going to see the marathon trials was a Bucket List item for both of us.  We spent the night in a hotel near the start of the race the night before; we were both so excited that we could hardly sleep all night.  It was an early race start – 7 a.m. – but we wanted to be sure to have a good view in the crowd of spectators at the start of the race, and so we got there almost an hour early.  I thought it was extra-cool that the event started at Frances Field on the track of my alma mater, Washington University in St. Louis, which was also, incidentally, the site of the 1904 Summer Olympics.

Over the course of my life, I watched countless races both in person and on TV with my dad.  Because he was always much more up-to-speed than I was about the field of competitors, he typically told me which runners we should “pull for,” as he put it.   He didn’t have to tell me that day, though; we were both long-time fans of Deena Kastor and had been following her running career since before she was married, back when she was Deena Drossin.  She had run the fastest debut marathon for American women in 2001 and was the national champion in women’s cross-country.  A California native, she was a four-time SEC champion in track and field as a collegiate competitor at the University of Arkansas, which was where Dad had started following her running career in the news.  She held several U.S. records in running and was internationally ranked, twice finishing as the runner-up at the World Cross County Championships, the most important competition in international cross-country running.

Our favorite, Deena (or "Deener," as Dad pronounced her name), is sporting a #1 here.

As Dad and I sat in the front row of the stadium seats at Frances Field that day, we watched the runners stretching and milling around nervously before the start of the race.  Dad had a copy of the course map and had circled in red the points where he thought we should stand during the marathon to watch the runners go by.  The course consisted of 3.5 loops through Forest Park, a 1300+ acre park located in the western part of the city, and ended at the World's Fair Pavilion in the park.  The layout of the runners’ route made it an ideal race to spectate, and, as soon as the starting gun was fired and the athletes completed four laps around the track and then raced out the gate onto the street, Dad and I high-tailed it out of the stadium to claim our spot on the curb at the three-mile mark.

Exiting the track for the on-road portion of the race

A runner named Blake Russell took the lead early on and was about a minute ahead of Deena and four other women when they came by us three miles into the 26.2-mile long race.  Deena and a couple of the others were giving out occasional high-fives to some people standing on the curb as they passed by; Dad called out “Good pace; don’t lose touch” to her, just like he’d advised me in countless races of a much smaller scale.  She looked right at him and gave him a nod as she and the others in the pack flew by, and then Dad and I rushed to get back in the car so we could make it to stand around the 7-mile mark before the leaders got there.  

Just a few minutes after we’d staked our claim on our spot at that point, we saw the front pack racing up the hill in front of us.  Deena had closed the gap on Blake by about 20 seconds, but the rest of the leaders were right on Deena’s tail.  “Pick it up half a step, but don’t go all out yet,” Dad advised her in his regular-speaking voice volume as she sprinted by.  I didn’t think she’d heard him until I saw her flick her right hand out to the side in a quick gesture of acknowledgement and then noticed her get a little higher up on the balls of her feet in an obvious effort to pick up the pace.  

Blake (#4) in the lead at Mile 12

Our next planned check-point was at Mile twelve.  There was an aid station there with all different kinds of water bottles on the table, each marked with a different runner’s name and no doubt filled with a specific concoction of that competitor’s specifications.  While we waited, Dad and I joked around about trying a drink from the various bottles to see what was in each one, but, when he saw the runners coming around the corner, he got serious and started bouncing on the balls of his feet like he always did when he was nervous.  Blake was still out ahead about the same distance.  Deena grabbed her water bottle from the table and then side-stepped to get out of the way of the other runners coming up behind her as she stopped to take off her shoe; apparently, she’d felt a rock in there and wanted to try to get rid of it.  She quickly put her shoe back on, took a swig from her water bottle, tossed the bottle down, and then bolted ahead to get back in the race.  She quickly caught and picked off the other front runners who'd passed her except for Blake, who had increased her lead to about a minute again.

Dad and I raced to get to the 15-mile mark and were excited to see that Deena had lessened the gap to only about 20 seconds by then; “Keep it right there!  Pace yourself; you’re right where you need to be,” Dad told her in a conspiratorial voice.  She looked at him and gave him a quick nod as she ran past us.  It was so impressive to see how fast the turnover rate of all of the runners’ legs was as they went by; they made it look almost effortless, but we knew it was far from that at the pace they were putting in.

Next Dad and I positioned ourselves near the 19.5 mark, and a few minutes later we saw the women approaching.  Deena was in front this time, leading by just a few seconds over Blake, who was tailed by about 30 seconds by another runner, Colleen De Reuck, a 40 year-old South African native who became a U.S. citizen just after the previous summer Olympics.  As Deena got closer to where we stood, we saw her glance back over her shoulder a couple of times to gauge the position of the runners behind her, a move that I knew from my days in competitive running that Dad did not think was good strategy.  “Don’t look back – it shows weakness!” he advised adamantly as Deena flew by us, and again she gave him a right-handed sideways wave of recognition.  

After the rest of the front runners passed by, Dad and I decided that we wanted to go to the end of the course to try to secure a good spot by the finish line.  We parked and walked towards the big Finish Line banner, and we were thrilled to see there was room just past the tape near the media truck.  The race was being announced in a play-by-play fashion over the loud speaker, and we listened among the other spectators to hear.  At Mile 22, Deena was still in the lead by a small margin, and Colleen had overtaken Blake.  Over the next couple of miles, the crowd alternately grew quiet and cheered as we heard Deena’s lead being decreased by Colleen little by little, until #2 De Reuck became #1 and then continued to forge ahead to build her lead on Deena and the rest of the field. 

At the finish, thousands of fans holding little American flags lined the streets. Someone held out a big America flag on a pole to Colleen about 200 meters before the tape; Colleen grabbed it and crossed the finish line in first place, carrying the flag, with a huge smile on her face, setting a U.S. Olympic trials record with her time of 2:28.25.  (Her win qualified her for her fourth Olympics - pretty impressive at age 40!)  Deena was the runner-up and finished strong with a time of 2:29:38, followed by Jen Rhines, who had run in the lead pack the entire race and finished third in 2:29:57. Blake came in fourth with a time of 2:30:50.

Colleen De Reuck - winner of the 2004 Olympic Trials Women's Marathon

For the first time in history, the top three runners in this event all finished in under 2 hours, 30 minutes.  These three women were draped in huge American flags as they climbed up onto the awards podium a little while later to accept their medals and to claim their spots on the U.S. Olympic Team.

After the runners had come down from the stage and the frenzy had died down a little, Deena happened to look up and see us at the edge of the crowd.  With the flag still draped over her shoulders, she walked over and called out “Thanks for the advice!” to Dad.  “Sure!” he responded casually, as if we stood around talking to Olympians every day.  She gave us a wave and stepped off into the swarm of reporters, and we turned to find our way back to the car, tired but excited from our big adventure.

A few months later, as Dad and I watched the Olympic women's marathon on TV at our respective houses, I thought back to the Trials and to the advice he’d given out to Deena during the race.  Deena’s third place finish in the marathon in Athens was one of the highlights of the 2004 Summer Games.  She toughed out the extreme heat, paced herself just right, and made our country proud when she stood with the olive wreath on her head to accept the bronze medal.  As I watched her going the distance over the 26.2 miles she ran that day, I never once saw her looking back.  And now, remembering back to Deena's big win that day, I can’t help but think that, along with strategies of her coaches and the wisdom she'd learned along the way as a professional athlete, she also had my dad’s voice in her head, urging her on, telling her she was right where she needed to be, just as I have in mine each and every day of my life.