This story seeks to increase awareness and understanding of the unique needs of individuals diagnosed with life-changing illness or injury and their families by providing insight into the life of a man as he went through diagnosis and treatment of brain cancer (Glioblastoma Multiforme - or GBM).
Before my
dad went on ahead, I’d never really considered the way that the birthday of a
loved one can transform from something that fills you with anticipation and excitement
to something that seems so sad.It seems so odd to me the way that happens; certainly I still want to recognize and
celebrate the birth of one of the most important people in my life, even when
he isn’t still here to celebrate himself. I think for my family, the sense of enhanced sorrow and grief that comes
with this week is exacerbated by the fact that it was the same
week that he was diagnosed with the brain cancer that took his life only ten
short weeks later.That, as much as his
absence, makes it seem counterintuitive to celebrate.
For me, in fact, it feels like salt is being
rubbed into a wound, and a lot of the emotions that are usually just hanging out beneath the
surface on a typical day seem to be bubbling up and threatening to erupt with the week when
everything changed for my dad, for my family, and for me.The annual marker, which I prefer to avoid
thinking of as an anniversary since I tend to think of anniversaries as happy
and worthy of celebration, approaches without hesitation and haunts us without regard
to our ongoing pain. The week represents such a major shift
- an ending of things as they were and an awareness of what should have
been.
I long for just one more hour, one
more conversation, one more hug, one more anything with him.I want to push through the pain and focus on
the importance of the day of the year on which the man who means so much to me
came into this world; the challenge to do so is far greater than I ever
imagined it would be. There are so many things that my dad will not get to
experience now, things he would so love to be a part of or to know about or to
see.His presence in my life continues
to shape me on a daily basis, and I do celebrate that fact as much as the grief
will allow. Sometimes though, especially when I can’t avoid the what if, the should
have, or the should be kind of thinking pattern, I am overwhelmed by it all,
missing him so much that I struggle to move through the ache. The only
thing that seems to be of comfort to me when I think about those things is to remember the life
that he led that I know he considered to be a great one, to recall the way he
was filled with such joy and gratitude, and to recognize the fact that I know
if he knew anything at all for certain during the days of his illness it was
that he was loved.Happy birthday, Dad;
you are loved and you are missed.
Nineteen years ago this month, my husband saw a listing in
the newspaper for an opening with the school district for an occupational
therapist. I was working for a company
that was sending me to various nursing homes in the area at the time and
was looking for a job change. On the
phone that day, Kevin wove his way through the maze of people on the other end of
the line and eventually got connected to the director of the district’s Special
Education Department, a man who, when Kevin told him that his wife was an OT
with experience in pediatrics, said he wanted to hire me as soon as
possible. Kevin wrote down the man’s
phone number and told him that I would call him the next day, which I did, at which
time we set an appointment to meet early the next morning at a Perkins
restaurant before I had to report to work at the nursing home that day.
On the day of the meeting, it was raining.Hard.One of those torrential downpours that makes it difficult to see the
road in front of you when you’re driving.As I pulled into a parking place right in front of the restaurant about ten minutes early,
I took a deep breath and told myself I was going to have to run through the
rain to get inside but it didn’t matter that I would probably look like a
half-drowned rat; hopefully my resume would speak for itself and I would get the job anyway.Before I could open my car door, though, a
man in a car pulled up right beside my car and looked over at me and made
the “roll down your window” gesture that I was luckily old enough to know the
meaning of.I thought the man was going
to ask me for directions, but it turns out it was the man I was supposed to be meeting, asking if I was
me and then, when I said that I was, asking if I could just come over and sit
in his car for the interview since the rain was coming down so hard.
I looked around – there were lots of cars in the parking lot
and it was a public place right there out in the open – and decided to go for
it.I figured I could unleash my crazy
and/or jump out and run if he ended up being a creep.I went around to the passenger side of his
car, and he leaned over and opened the door from his position in the driver’s
seat. I saw some forearm crutches leaned against the front seat from on the floor of the car and figured out the reason that he'd parked in a handicap-accessible parking spot - and why he'd asked me to get into the car with him instead of trying to navigate through the flooding parking area. We awkwardly shook hands across
the center of the seat; I handed him my resume and he tossed it up onto the
dashboard without looking at it.He
asked me a few questions in a chit-chatty manner and then asked me how soon I
could start.And right there, in the car
of a man I had just met, in the pouring rain, in a Perkins parking lot, I
decided to embark on a new leg of my career.
One of the many things that I learned from my dad over the
years is that no job is perfect; even a great job has parts of it that aren’t
great.This job has been wonderful,
though, for me and for my family.It has
allowed me to develop so many relationships with so many people, many of whom I
have known for well over a decade and many of whom I have come to care about on
a very personal level.I have been
inspired and have learned something almost on a daily basis; no two days have
been alike, and I feel that my creativity and my knowledge base have been
challenged and expanded regularly.I
have been allowed the freedom to develop my professional interests and to improve upon my strengths – and guidance through several supervisors over the years, a
few of whom have become valued mentors.The children and the families with whom I have had the opportunity to
interact have each left a mark on my life in some way; so many of them have
touched my heart and impacted my life that I am forever changed because
of those interactions.
And so it comes as no small challenge for me to figure out
how to make the change that needs to be made at this time, how to gracefully turn off this
road onto another one as I head into another phase of my career and of my
life.But an offer has been made to me
that I cannot refuse, an opportunity that, for me, at this time in my life and
at this point in my career, feels exactly right.And so I am taking the plunge.
Last Friday, letter of resignation in my hand, I drove to
the school district’s central office, the actual entrance of which has recently been
moved from the county’s school district building to the building that was
formerly owned by the city’s school district.As part of the merging of these two entities, the entrance was moved to
the building next door.I parked near
the new entrance and entered the building, where I discovered that a little
more than the usual check-in process was now involved: instead of showing my
employee badge and signing in at the front desk, this time I had to walk
through a metal detector and submit to having the contents of my purse
searched.“State your business,” the
police officer manning the door said to me in a grumbly voice.I told him that I needed to see someone in the Human Resources Department, although, like many of the
administrative offices of the district since the merger occurred last month,
its official title had been changed to something that seemed so ambiguous to me
that I wasn’t sure the department to which I was referring was the right
one.To get to the Office of Human
Capital & Talent Management, as it was now titled, the officer told me, I should go down the
hallway to the right, take a left through the doors into the breezeway, and
look for the door with the sign indicating the office about it.Clutching my letter of resignation in my
hand, I took off down the hallway and pushed through the glass doors into the
courtyard-like area between buildings, and the doors closed behind me with a
loud metallic clank.I walked across the concrete
area to the door directly across from where I’d exited and pulled to open the
door.Locked.Thinking that I must be trying to go in the wrong door, I walked over to the next door and tried again.And to the next one, and to the next one.All were locked.Thinking that I should return to the cop at
the front door and ask again for directions, I turned around and walked back to
the door where I had come out.Locked.Shit.
It was nearing 100 degrees, and there was no shade or breeze
in that so-called “breezeway.” Like a
total weirdo, I peered into several windows of the building, thinking I would be able to get
the attention of someone on the inside and get them to let me in before I died
of a heat stroke out there, sadly with my letter of resignation in my sweaty
hand.There was not a single person to
be seen anywhere.“Oh, I know,” I
thought, in a quasi-eureka moment: “I’ll call them and tell them I’m locked out
here so someone at the front desk can let me back in.”I dialed the number and listened to the
series of rings on the other end, one after the other until more than a dozen rings had sounded with no answer, as I began to wilt on
the outside and on the inside.I was
nervous about quitting; after all, I hadn’t quit a job in almost two decades –
and now I was locked out.Or in.Whatever.I felt like I had done something
wrong.I paced a little more, trying to
figure out what to do next, and then I heard the squeak of an opening door from
across the courtyard.I ran (in heels)
to catch the woman who was carrying a big stack of papers and who hadn’t
noticed me at all until I shouted, “Excuse me, Miss?”She looked at me with part confusion and part
annoyance and, after I’d explained what had happened, eyed me suspiciously
and said, “You aren’t supposed to be out here at all since you’re unauthorized.”I swallowed the response that was fighting to
come out and just waited her out.“Well,
since you’re out here, I guess I can let you back in the way you came,” she
said.NOW THERE’S A GENIUS IDEA, I
thought, but I keep that to myself too and followed her back to the door where my
little adventure had begun.She swiped
her badge and moved to the side so I could enter the building.I went inside and turned to ask her for the
actual directions – but the door had already closed and she had turned and was
briskly walking in the other direction.NO WAY was I opening that door again, especially considering how quickly
it apparently closed.
I went a
little ways down a hallway to the side and saw a woman coming out of one of the
offices there. When I told her I was
lost and gave her the name of the office I was trying to find, she gave me
different directions – these included some twists and turns that were
thankfully all indoors. After a few more
minutes of walking, I looked up and realized where I was: inside the “old”
county district HQ building. Familiar
turf. I turned one more corner and saw
the sign for the Made-up Office Office
of Human Capital & Talent Management.
I went in, found the person I needed to see, and handed her my
letter. She thanked me and wished me a
good day. I retraced my steps down the hallway and noticed that I was about to pass by the doors that had been the entrance
to the building throughout my 19 years of employment, the doors that I had
walked through at least 100 times over the years and the doors through which I
had come to sign the paperwork on the day I was formally hired to start in this
position. "Full circle," I thought, and, throwing caution to the wind,
I swiped my badge in front of the sensor (it worked!), pushed through the door,
and strode through the lobby. As I
reached up and pushed through the glass doors to leave the building on my way into the
parking lot, I heard a voice calling after me, “Excuse me!You’re not supposed to be here.” "I guess not," I thought, and I walked
to my car and drove away.
During track season in my sophomore year in high school, my team competed in a track meet that sticks out in my mind more than many of the rest. My last event for the day was the mile run, my favorite and my strongest event. As the starter's gun was fired to signal the beginning of the race, the rain that had been steady but fairly light all day long turned into a torrential downpour. Over the course of the first three laps we ran around the track, there was lots of accidental jostling within the front pack of five or so runners; not only was the track slippery, but the pelting rain was making it hard for everyone to see. As we charged into the curve of the final part of the race, the usual volleying for position was going on amongst the runners, and one of the girls behind me stepped on the back of my shoe. The shoe didn't come off my foot, but the mishap made me lose my balance, and I threw my left hand out to the side to steady myself so that I wouldn't fall down, knocking into the runner who was to my left in the process, which in turn caused her to step out of bounds on the inside of the track. I realized that I had bumped into the girl, but, because I kept running along with the rest of the pack as this split-second chain of events was occurring, I didn't see her step over the line. As I eyed the finish line at the end of the straightaway as we came out of the last curve of the track, I put my head down to block the driving rain and gave it all I had, finishing a step ahead of the pack to cross the line in first place. I remember wiping my rain-soaked face and looking over at Dad who was standing at the fence at the edge of the track and seeing the pride in his eyes. I knew he was thinking, "Well played," and then I saw him shift his gaze back towards where the other runners were standing on the track, and I knew he was reminding me to congratulate them. As I turned to step into the circle of girls hovering in the rain just past the finish line, one of the lane judges stepped towards me and said, "You are being disqualified for fouling in the curve." I was stunned; I didn't say anything back, but my coach stepped in and a conversation ensued. It was a fruitless one, though, and the judges' decision stood. I felt hot tears running down my face as I walked off the track towards my parents in the cold rain. I was disappointed, and I was embarrassed. Sportsmanship was very important in my family, and I felt like people would think that I had somehow been trying to win by cheating, even though the mishap was obviously an accident. After the rest of the track meet was called off due to the weather, the ride home on the school bus with my team that afternoon seemed twice as long as the ride to the event had seemed. The next morning, Dad woke me up and told me we were going to the track to run. I usually took the day off from running on the day after a race, but I was still so disheartened from the day before that I just got my gear on and climbed into the car without questioning. We were silent as Dad drove to the track and parked the car and as we both got out of the car and walked onto the cinder track. "Here's the deal," Dad said. "I don't want what happened yesterday to make you doubt yourself, and so we're going to run it again. As long as you can run the same time you ran in the race yesterday, in our minds the victory will stand." We jogged a couple of laps to warm up, and then we shifted into race pace to cover the four laps around the track in step. Dad offered a few words of encouragement and pacing advice along the way but was mostly quiet until he looked down at his stopwatch as we crossed the finish line. "Ten seconds faster than yesterday," he told me. "That's it: now we're not going to worry about yesterday." I've thought about that day - not the day of the track meet, but the one when we were out there by ourselves on the track the day after - several times since my dad went on ahead; the "leave it all behind" mentality that he had is forever etched in my memory. But that's a much bigger challenge in grief, way bigger than I ever thought it would be. Leaving it all behind really isn't an option in this type of situation.
Nothing in my life prepared me for the loss of my dad, not even in the least, including his 10 week-long illness. I'm still surprised by how robbed I feel, both on my dad's behalf and on my own. The things that happened during the time I spent with him while he was sick play in my head over and over again, and, to be completely honest, as hard as it is to think about those days, a part of me doesn't want to leave it all behind because I don't want to lose even a single memory that I have of him and of my time with him.
I am learning that grief is full of surprises, most of which I have found to be of the unwelcome variety. It's surprising how it can feel so lonely, so endless, so awful, and I've been told that's true pretty much from the time of the loss on. The threat is always on the horizon, and that's something I wish I didn't have to know.
At some point during my first year of grief, when my husband found me holed up crying for the 10,000th time, he just looked at me and then said very quietly: "You're not the only one who misses him." In that moment, I opened my eyes to the presence of the grief and hurt of others; I'd been so consumed over losing my dad that it was only when that was pointed out to me that I could really start to see the loss from another person's perspective. And, in doing so, another round of hurt went through me, and another round of feeling useless and helpless, for I was already doing all I knew to do and yet nothing seemed to be getting any better.
And even today, there are times when I have to force myself to remember that I am not the only one this loss has affected so very profoundly. Like a lot of people who are grieving, I tend to isolate myself when I am upset, and that seems to make me feel like it is only I who is still feeling this amount of pain, feeling stuck and angry and so much more. Of course, I know in my head that isn't true, but sometimes it's all I can do to keep myself together and I worry that at some point I may fall short of the strength needed to hold another person up too. Although at other times when I am able to see through the fog and realize the grief that is bearing down on others I love, I feel a sense of protectiveness and of bonding that somehow helps to lessen my own grief, and I know in my head and in my heart that the only way that anyone gets through any of this is through togetherness.
The second birthday of my dad's that we had to spend after he went on ahead hit me a lot harder than I thought it would, another surprise I could have done without. Truthfully, it has been only with the support and love of my family that I have gotten through the shit of the past two years, and this point was driven home yet again on my dad's birthday when I realized that had it not been for my family I would have surely spent the entire day - if not longer - crying hysterically. I'm really not good at accepting comfort when I'm sad, and I have to say I've done a LOT of crying behind the scenes because of that and because I don't want my sadness and grief to permeate everything for everyone. Many nights I've lain in the bed on my side with tears streaming down my face and into my ear and onto the pillow, and my husband just puts his arms around me and lets me cry, because we both know that there's not really anything to say that can make it any better. The depth of the emptiness and the sadness that bear down on me at times like that continues to surprise me. I believe that at some point life will give me moments that seem so much brighter than those moments seem dark, but I also know it will never be the same without my dad. I know that those of us who were lucky enough to know him will always feel a piece is missing, but I also know that we will proudly carry him forward, not just to tomorrow, not just to next year, but into future generations who will undoubtedly hear many, many "Wild Bill" stories in the years to come. I hope that in carrying on in his honor, at some point in the future we will be able to leave behind much of the sadness and the pain.
"This emotional pain caused by loss suffered does not move toward forgetfulness. It moves, rather, in the direction of enriched remembrance; the memory becomes an integral part of the mourner's personality. The work of mourning has been completed when the person no longer appears as an absence in a barren world, but has come to reside securely within one's heart. Each of us must grieve in his own manner and at his own pace. Periodic waves of grief are often felt for the remainder of one's life. The mourning process must be given the freedom to find its own depth and rhythm; it cannot be artificially accelerated. A loss, like a physical wound, cannot heal overnight. There is no way to hurry the stages of tissue growth, and there is no way to speed up the healing process of mourning. But, when mourning has been completed, the mourner comes to feel the inner presence of the loved one ... the person is present in a new form within one's mind and heart, tenderly present in inner time without the pain and bitterness of death. Once the loved one has been accepted in this way, he can never again be forcefully removed." ~Robert Chernin Cantor in And a Time to Live: Toward Emotional Well-being during the Crisis of Cancer, Harper & Row, 1978.
One thing that I always admired about my dad was that he never seemed to take the easy way out. He never made excuses to avoid doing something or, as he termed it, to let himself off the hook. He viewed anything that he wasn't naturally good at or that scared him (or both) as a challenge.
Of course, there are countless examples that I could give of this trait involving athletic pursuits. But one obstacle that he had to work to overcome that didn't involve physical tenacity is something that may surprise some of the people who knew him, maybe some who even knew him well: Dad had a fear of giving speeches. At one point in time, having to talk in front of a group of people made him very nervous, and until sometime around the time that he took the job that would become his last, he sometimes let this fear get the better of him. In fact, one of the details I remember most clearly about my wedding day is listening to my dad rehearse his "one line of the day," as he called it, over and over, and watching him stress out about potentially making a mistake when it was time for him to speak during the ceremony. As usual, when he was nervous, he made jokes, and those of us around him during that time heard lots of entertaining renditions of what he jokingly hoped out loud he wouldn't say in error when the minister asked him his Big Question in front of everyone at the wedding, "Who gives this woman to be married?"
"What if I freeze up?" he asked me, "or what if I accidentally say something like 'Me and her momma' or 'Her momma and me' or 'Your momma'?" We laughed because we knew that he knew the proper etiquette of what to say. But the more he kidded around about what he hoped he didn't inadvertently say, the more nervous he got about getting right what he was actually supposed to say, and it seemed the greater the potential for him to make a mistake. By the time he and I were in ready-position at the far end of the aisle as the music began and all the heads turned our way, he had worked himself up so much about it that neither of us were laughing. When we got to the Big Moment (for him, and for the rest of us who knew about his nervousness), when he was asked The Question, his eyes went a little wider and I saw him take a deep breath before he responded, but he pulled it off with his typical style: he said, "Her mom and I do." Not exactly the line from the Miss Manners Wedding Day Book, but just right anyway, if you ask me.
Just a few months later, he told me that he was thinking about branching out in his career but that there was one thing he really needed to work on before he could really consider make a change: he said he needed to get better at public speaking. And so, like every challenge I'd ever seen him take on, he dove right in, and he practiced until he got it right.
As part of getting comfortable speaking in front of a crowd, Dad joined a group of people who also wanted to improve that skill; I'm not sure if it was the Toastmasters International Club but at least it was something similar to it. Periodically, people in the group were given topics about which they were supposed to write and then deliver speeches, to practice and to improve their comfort levels. One of the assignments was for each person to talk about how they'd gotten their name, whether they were named after someone, if they had a nickname, or whatever information related to that topic they wanted to share.
Dad said that one came to him easily; he gave me the written out copy of his speech when I was visiting at my parents' house during that time period, and I was enlightened and entertained by what he had written:
Some people dream of singing in a rock band, winning the Daytona 500, or being a great warrior in an epic battle. Myself, I have always wanted to be an adventurer. I am afraid of heights, but I read every book I can find about climbing Mt. Everest. I have dreamed about biking across the country in 14 days and winning the 48 hour run across Death Valley. Sailing across the ocean has appeal for me, but it doesn't make my final cut for that list because I'm afraid of sharks.
At this point in my life, I have not failed totally in my search for adventure. There are a few running and biking tales I could share with you, but I will spare you the details. There is one outdoor adventure I would like to tell you about, though. It wasn't my greatest, but it might have been my most memorable. It took place when I was eight years old, and this is what happened:
For some reason my parents chose to name me William but decided to call me Billy. However, I've always hated to be called by that nickname. I think it's because when I was a kid my friends said it sounded sissified. On my 8th birthday, I decided I'd had enough, and I asked my mom to please start calling me Bill instead of Billy. I told her that if she didn't I would run away and never come home. We lived in a small house surrounded by woods, just on the edge of town. It was a good place to run away and hide, which is exactly what I did on the afternoon of my birthday when it became clear that my nickname wasn't likely to get shortened into the version I wanted. I tucked into a place I found in the woods where I could see if someone was coming but where I couldn't be seen. As I remember, I didn't go unprepared - I took my silver canteen and something to eat along with me.
I had already figured out how to go to the bathroom in the woods. My friends and I were often out of washroom range when we were playing cowboys and Indians, and we'd learned to make do when nature called by using leaves or moss or whatever was available at the time. Unfortunately, that day I made the mistake of using poison ivy leaves for you know what. It didn't take long for the itching to begin, maybe an hour or two, and not too long after that, I decided that maybe it would be best for me to go home - besides, it was getting dark outside.
As my mom always told the story, I was soon race walking around the house, and I couldn't have sat down if my life had depended on it. I wound up with such a blistering case that I was taken to the local doctor for some kind of shot. The doctor also prescribed an ointment that made the itching feel better, at least temporarily. The bad news is that my mom had to put it on. God, was I embarrassed. Not at all the birthday that I'd imagined.
My mom keeps things forever. She has a log of my childhood illnesses, and on October 26, 1951, the entry in her notebook says, "Bill - poison ivy, lower trunk, really bad." Amen to that! At least she'd started just calling me Bill though.
Dad, giving a speech, after he overcame his fear of public speaking. (Note the guy who can't keep his eyes open!)