We
didn’t have a group topic this week, so I decided to write about something that
has been bouncing around my head for a few weeks now, one of those subjects
that is not going to let me rest until I let it out on (virtual) paper. I’ve fought it for a time, because I’ve
been having trouble arranging my thoughts and my words and my feelings, and I wanted to do the subject justice. So, I apologize in advance for the
length of this post, and for the disorganization. But this one is truly from the heart.
A
few weeks ago, I spotted an article on Facebook involving a young man who was dying of cancer but who had one simple last wish: he wanted to see the new Star
Wars movie before he passed. The Internet is full of heart string-tugging stories, and I don’t read them all, but something in the
article’s photo pulled me in. The picture featured Daniel
Fleetwood sitting on a floor in front of a display of Star Wars memorabilia.
On his face, Daniel wore a big smile, and atop his head sat a Yoda
hat. He looked happy; he had a sparkle in his eye,
the look of unabashed glee. He looked too young to have a dying wish.
I
opened the article and read, and my heart began to melt. A native Texan, Daniel was only 32. He’d been a Star Wars fan since childhood – it was his special thing, much like
my Bon Jovi (like me, he’d camped out overnight for tickets). I watched the attached video and my heart cried. Daniel’s illness clearly had progressed
from his Yoda picture. He looked
pale and thin. He swayed as he
spoke – an attempt to balance and talk while morphine coursed through his
veins, I imagined. His breaths
came rapidly, which made sense, since the news story stated that 90 percent of
his lungs were covered in tumors.
The video showed his young wife, Ashley, too, taking care of Daniel as
together they faced fears I could not even attempt to imagine (and would not want to). Daniel spoke slowly, deliberately, about the aggressiveness
of his cancer, and I swore I saw sadness in his eyes as he shook his head and mournfully
said he didn’t think he’d make it to December 18, the movie’s release date. Sadness. Of course, sadness.
What else?? That sadness was
compounded when the video ended with Daniel’s plea for everyone to “help” him
get a chance to see the Star Wars
movie. I felt his pleas in my
core.
I
shared the article, as I’ve shared so many, but I could not shake Daniel after
I hit “post.” I immediately joined
the campaign, using the #forcefordaniel hash tag and asking others to do so,
too. I would do whatever I could
to get Disney and J.J. Abrams to grant Daniel’s dying wish. I went on Twitter – which I rarely do –
and did the same. Over the
following days, I found myself hoping
and wishing that Daniel would get his screening. I checked online every day, longing to find a story saying Daniel would be seeing the film. It came as no surprise to me that I got teary-eyed when I finally read that Disney and Abrams granted Daniel’s wish, sending some reps to Texas to screen
the movie in Daniel’s home on November 5.
I’ve always had “Disney issues,” but not that day. That day, Disney made someone’s
dream come true. I thanked the
Universe. I thanked Disney. I vowed to see the film. I silently wished for peace for Daniel as he lived out whatever time he had left; peace and painlessness and comfort. I really didn’t want to think about how little time probably remained for Daniel; after all, at that moment, he had already outlived his doctor’s estimate of two months. It broke my heart.
Even so, I thought I’d be able to stop thinking about Daniel and Ashley after that . . . but I couldn’t. I searched for more stories. In one article, I
read that both Daniel and Ashley worked with special needs people, and it felt
like a punch. These are good people, I thought. And these are people who don’t make a lot of money because
they chose jobs that help people.
So, I went on Ashley’s GoFundMe page and made a small donation to
alleviate the estimated $100,000 in medical bills Daniel had accrued. I didn’t feel much better, so I went on
Facebook and found that both Daniel and Ashley had open pages. Ashley is like me, and she posts frequently,
so I didn’t attempt to read all of hers, choosing instead to look at photos of her
and Daniel, photos of a happy couple, even in their shared hell. Daniel’s posts were fewer. I spent an hour or so reading his words,
my already bruised heart feeling heavier and heavier. In February of this year, he shared news that one of his
tumors had grown only slightly and the other seemed to be gone, or maybe not
even a tumor. But just a few
months after, his cancer seemingly exploded, and suddenly Daniel was faced with the choice
of trying an experimental study – or nothing at all. Daniel was honest – brutally so – as he openly lamented his
painful “choice” between becoming somewhat of a “guinea pig” and taking
treatment that likely wouldn’t help him and could potentially hurt him, or certain death.
His fear and frustration were palpable. Daniel’s words hung in my head: “I don’t want to die.”
Daniel
was only 31 when he wrote that.
In
September, Daniel posted that his doctor had told him there was nothing
medically left to do, and so he signed a DNR and began hospice. I didn’t know it then, but Daniel was just
weeks from his 32nd birthday.
From
there, Daniel’s posts dropped off, though he shared one about having tumors covering
90 percent of his lungs. Ashley
picked up the slack, posting both on his page and on hers. She shared photos of Daniel, and the
decline was obvious. But so were
the sparks of who Daniel still was and would always be: a
young man with a loving wife, great friends, a wonderful family, an affinity
for music, and a true love for all things Star
Wars.
Now, I didn’t spend all of my time thinking about the Fleetwoods, as mixed in
here was my own minor diagnosis of gallstones and my decision to remove my gall
bladder to nip the situation in the bud.
My surgery was scheduled for November 9. In the weeks leading up to my procedure, I was put on a
low-fat, bland diet as a means of keeping gall bladder “attacks” at bay. My limited diet left me cranky and
whiny. I wasn’t allowed to eat or
drink at all after midnight on November 8, even though my surgery wasn’t
scheduled until 2:00pm on the 9th (and took place two hours later
than that). But whenever I found
myself getting too complainy, I thought about Daniel. I thought about how he wasn’t eating anymore and likely wouldn’t
again, about how even my stupid, hated crackers weren’t an option for him. I thought about the other people who’d
be in the hospital alongside me, the ones who were there having tumors removed,
the ones who were dying, the ones who wouldn’t be up and around in a week or
two, stuffing their faces with cookies.
I
reminded myself to shut the hell up.
I
thought of Daniel while I waited to go into surgery, while I hung out with my pre-op nurse and we talked about how I’d been a hospice volunteer and how I
didn’t think I could handle having a young patient and how, overall, you have
to somehow separate what you see inside your head from your every day. I told her about Daniel and how he
reminded me to stop complaining already.
I pulled strength from his strength, even though I’d never once met him,
even though he was actively dying while I was very much alive.
The
rest of November 9th is a blur: I remember waking up in the recovery room and seeing my
doctor (he was blurry). I remember
the second recovery room and the CNA who was in a hurry to go home and who bum-rushed
me out the door. I remember being in the car and getting my meds and then being
at home and eating crackers so I could take the meds and go to sleep.
I
also remember waking up around 2:30am, hungry and in pain. I remember rousing my
husband for some toast and another Tylenol 3.
I
woke the next day clear headed, and I eventually picked up my phone and went on
Facebook. And there in my feed was a story saying that Daniel had passed away overnight. I went to Ashley’s page and looked at the
time of her post . . . and it was right around the time I’d awaken in need of
food and codeine.
Coincidence? Perhaps. Or maybe it was something more.
I
had a lot of down time after my surgery, and I spent some of it wondering why
Daniel’s story touched me so. I’m
not old enough to be his mother, and I wasn’t really feeling a maternal pull,
even though he was only 12 years older than my eldest child. No, it wasn’t that. I switched tracks. I remembered back to when I was
Daniel’s age, only 32, a third of a lifetime ago for me. Daniel’s young age explained part of my
sadness; after all, when I was 32, I had just graduated from law school and was
embarking on a new career. I was
also just three years away from giving birth to my second daughter (born, I
would learn later, on Daniel’s birthday) and six years away from having my
third. Daniel died having so much
life left to live, so many people left to help, so much for him and Ashley to
share, including parenthood. The
realization made me sad. It
made me angry.
I
felt those feelings and I could explain them, but I still could not explain all
of how I felt. I had a burning
need to do so. I couldn’t really
talk about it to anyone I knew and expect them to understand what I myself couldn’t explain, so I reached out to the
larger world. I turned to the
Internet, hoping I would read or see something that could help me make sense of why
why why I felt so connected to Daniel and Ashley. And, for once, almost miraculously, the Internet actually eased my
mind. I soon discovered that many people felt the same as I. Thousands of people, scattered around
the world. I found posts from people as far away as Germany and Spain. I found videos created
by grown men who teared up as they tried to find words to explain why Daniel’s story
touched them so, why they felt his loss so sharply. Their shared feelings in turn made me feel better. I felt connected, less alone. Not crazy. Needing to feed that connection, I joined the #forcefordaniel Facebook group, and there I posted
some words that have always comforted me (words I coincidentally noticed on Daniel’s Facebook page). I also thanked Ashley and Daniel for
allowing all of us to become part of something so much bigger than any one of
us alone. Kind of like the Force, if you think about it. A Force for Daniel.
I
finally felt better, but there
was still more to do. And Daniel, this one is for you: I jumped over to my email and I
contacted the volunteer coordinator at Alive Hospice here in Tennessee and I
said, “I’m ready. What do you need from me?” I train in December. And then I hit one more website, Paypal,
where I sent a small sum to a friend of Daniel and Ashley. Now, when I am spending time with
people on hospice, my ID badge will have a special decoration, something to
remind me of the person who inspired me to go back, to get out there, to
help: my #Force for Daniel patch,
a fundraising emblem I ordered from a young man named Josh (all of the proceeds
go to Ashley, thanks to generous Josh, who hopes everyone will wear their
Master Jedi Daniel patch when they go to see Star
Wars).
I
don’t know that I will ever fully understand why Daniel and Ashley have had such
an impact on me, and on so many others.
My blog group has written before about unexplained connections to
people, places, and things, and I guess this is just another example. And I’m okay with that. I will allow the connection to two
people I’ve never met remain the mystery it is, one of the magic moments that
occasionally come with being human. I will
always be grateful that Daniel and Ashley shared their story (and that Ashley
continues to do so on Facebook, even though some of her posts make me cry), that Daniel got his wish, that I stumbled into
other humans with huge hearts, people who also reached out to help someone they didn’t know. I will always be grateful that the Fleetwoods
reminded me that people are basically good and that empathy and compassion do,
indeed, exist, that we are surrounded by love, even when we don’t necessarily realize it.
I
know my friends possess that empathy and compassion. And, so, now I ask you all, please, in Daniel’s name, go out
and help. Help someone. Touch a life. Join in something bigger than you alone. I don’t care whether you know the
people you help, whether you send money or spend time. Send prayers and positive energy, yes,
but do a little more. Make someone
else’s dream come true. Spread the
magic. Do it now, at this moment, now that we know there is a new,
shining star out there, a Master Jedi who has become one with the Force, a
young man who reminded me that life is short, that love matters, that spreading
joy is a very worthwhile and necessary endeavor.
May
the Force be with Daniel and Ashley – and with all of us, too.
Wow. Great post. I had no idea Daniel's situation affected you this much. I know how you feel though. I've been mournful over people I don't even know. Mostly when it's connected to someone I do know, but still. There have been times when I've read about a mother losing a child and felt the mother's pain right along with her. Or with someone losing a spouse.
ReplyDeleteI like your idea of helping people. And I'm glad you're starting to volunteer at a hospice again.
Thanks. I still don't fully understand why I feel how I feel, but I guess I don't have to. Sometimes, someone just touches that empathetic part of us and we have to go with it. Maybe the Universe wanted me back doing hospice and Daniel was my kick in the you know what. Hope he's at peace.
DeleteI hope he is at peace too. I have a harder time with the ones who pass away suddenly, even though it's still sad when it is imminent due to a health situation.
DeleteHere again you have managed to challenge me. My hesitation to read Daniel's story was purely self-perserving; I was afraid it would be too emotional and being so very emotional of late I felt I couldn't handle it. And then you write this. I find myself not regretting my lack of willingness to read his story, but engaged with his story through your eyes and words, heart and soul. The paths we walk in life are, I think, meant to intersect with others' paths and in that we are exposed to things beyond us and our experiences. You are one of the many conduits I have into the life journies of others. You were a buffer for me on this particular one and in that I find I am grateful, still not guilty for not engaging myself, as, clearly, I needed a buffer. Your connection to his story echoes in your words and it's obvious he has inspired you and in turn your words will inspire others. Thanks for once again writing something that gives me pause to consider something about who I am and allows me to gently challenge my own thoughts and/or beliefs, giving me the opportunity to grow and expand my experience on my own path.
DeleteThank you for your generous words. How funny that you didn't read Daniel'a story, that you knew maybe it was too much, and that I couldn't not read his story -- and I couldn't not write this. Our connection amaze me more and more as I age and grow. I am glad you were touched by Daniel, through my words, and I know you will move ahead and connect to someone or something and show that to me, too.
DeleteYou don't know me.. but I saw you post about your blog in the facebook group for Daniel, came over to check it out, and just had to let you know how special your words are. Daniel and I became friends in college, back in about 2002 (that seems like forever ago), and though I sadly hadn't been able to see him for several years, this is exactly the kind of impact he had on people, and exactly the kind of legacy he wanted to leave. It makes my heart feel so much lighter, knowing his empathy, compassion, and passion for life made a lasting impact on people, whether or not they knew him personally in life. While the #ForceForDaniel campaign had an obviously simple aim, I think the love and support that flooded in from all around the world ending up meaning as much or more to both Daniel and Ashley than any Star Wars movie (and that's saying a lot!), and I know your kind words will mean the world to Ashley as well. Thank you so much for having an open heart, supporting his dream, and following the drive to help others like he did. You're an angel on earth, whether you know it or not.
ReplyDeleteThank you SO much for taking the time to read my post and to comment. I envy that you knew Daniel and I am so grateful for your validation that Daniel was who he seemed to be to me. He has left quite a legacy, and I won't soon forget him or the manner in which he literally brought together thousands of people. I wish you peace as you grieve your friend, and healing energy, too. And thank you for the compliment. I've never thought of myself as such, but I appreciate that you do.
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