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.