After traveling across the country and excitedly awaiting the presentation of the Healthcare Architect Award all week, it wasn't until minutes before the award's presentation that I learned Mary had been sick.
Two years before I had made the same journey across the country. I was working at Stanford Hospital and missed being a part of a hospice team. There are so many things I loved about working at Stanford and appreciated about the innovative teams I was a part of, but my heart simply couldn't part with the spark that had been ignited as a hospice volunteer a few years before.
While I obsessively collected hospice and palliative care journal articles as a hobby, I mentioned to a couple of my close friends that one day, just one day I would do anything to go to the National Hospice and Palliative Care Organization's Management and Leadership Conference in Washington DC. Leaders from across the country gathered there to advocate for hospice and also present on the most breaking innovations in hospice leadership and care delivery. My friends convinced me that my notion of some day needed to change, they told me I should go now. So with out knowing a soul, having a penny, or even working in hospice at the time, I made my first inappropriate spending purchase on my credit card for round trip tickets to DC and registration for NHPCO's Hill Day and MLC.
With no knowledge of the details of the hospice medicare benefit at the time, I brought my whole heart to Hill Day, I simply wanted to take some step to making sure I advocated for people to have access to hospice. After our morning training session on the way to the Metro, I essentially had the hospice resources the NHPCO staff had handed out glued to my face trying to make sure I had all the facts down before I walked into a congressional office for the first time. My heart was pounding. I felt incredibly out of place as it seemed everyone around me not only knew all of the hospice terminology, but they were also almost all CEOs. As I started to feel the wind from the Metro rolling in, Terri Warren casually struck up a conversation, asked where I was from and introduced herself to me. I can't help but smile thinking about it now. Terri is one of the best hospice CEO's in the country. I didn't know who she was at the time, but I can't help but laugh thinking about what I looked like that day as a twenty three year old who felt like (and clearly looked like!) a twelve year old studying for a middle school exam. Terri did not look down on me for being young and without expertise, she embraced my passion. I remember telling Terri about how I really hoped that I would meet someone from Hospice of the Florida Suncoast because I had read so much about their teen volunteer program.
I might as well have been in Hollywood all day because all of the people I saw and met were like celebrities to me. At the end of the day we were in the Capitol building and Terri said, "See that woman with the blonde hair? She is the CEO of Hospice of the Florida Suncoast, make sure to say hello to her." In the moment I felt a bit too star struck to say anything but I remembered what she looked like and tried to convince myself that if I didn't say hi now, I had to say hello the next time I saw her.
The following day, after listening to many presentations about hospice advocacy, I was walking through the hallway when I saw Mary. I took a deep breath and slowly walked towards her to say hello. I introduced myself and told her that I appreciated the work of the Hospice of the Florida Suncoast. I told her about how I read all about their hospice teen volunteer program and that I thought every hospice in the country should be learning from their model of reaching out to young adults and helping them learn about humanity through hospice service. Our conversation was merely a few minutes, but everything I had been nervous about went away. Like Terri, Mary looked at me and saw my passion, she listened, she embraced my energy. Mary told me to make sure I stopped by the Hospice of the Florida Suncoast's booth because some of her team worked with the hospice teen volunteer program. I could not have been more thrilled. Or at least I thought I couldn't have been more thrilled until when I got to the booth, the staff looked at me and said, Renee, we've been waiting for you! Of course I thought, what planet am I on?! I later found out Mary had sent an email to the staff at the booth and told them to watch out for me and to give me a big welcome.
Other than attending every presentation Mary gave for the rest of the conference, I didn't get to see her again until the next few NHPCO conferences where we'd waive and smile. I closely followed Mary's work. Mary stood out as someone who started as a volunteer and never lost sight of keeping the patient and family at the center of care. Mary was a forward thinker and despite starting in a garage, she found a way to help pave a road for hospice care in America.
When I heard Mary was receiving the Healthcare Architect Award I was so excited to be a part of the audience. I was literally delighted all week because I felt honored I would get to be in the room to clap for her. Which brings me back to a few moments before she was on stage. A woman at my table mentioned how Mary has had such a difficult year with her illness. Just as I was trying to ask the woman what she was talking about I saw Mary take the microphone. She looked beautiful, yet different than I had ever seen her. I felt like I couldn't breath. The weight of this moment was extraordinarily heavy and so fast. I began to grieve. I grieved for someone I barely knew. I grieved for the loss of a relationship I hoped was just beginning. I grieved for the fact that listening to her talk this evening may have to be my version of saying goodbye. I grieved for hospice. I grieved the truth that not a single other person exists with a matched vision for what hospice should be. I grieved for all the people that were so fortunate to know her well. I grieved that I struggled to be present in this moment that was so meaningful to me because I was crying so hard I could barely open my eyes. She began to speak.
The next morning there was a plenary session with Megan and Larry Johnson discussing how to work across generations. Larry played the role of "Gen Y" and Megan played the CEO. With his saggy pants and backwards hat, Larry took his phone out and held it close to his face. He then approached the CEO and started talking to her, interrupting his own questions by looking at his phone and discussing things that seemed irrelevant to the CEO. While most of the audience seemed to giggle and be entertained, I couldn’t help but think of the contrast between this skit and my experience two years before. I was the “Gen Y” who approached the CEO. I didn't have baggy pants with a hat on backwards, I was appropriately dressed and didn't ask irrelevant questions. I was slightly flustered by nerves, but I walked up to Mary Labyak and thanked her for her years of service and dedication to hospice care. Mary was extraordinarily gracious (as usual), and with just those few minutes of her time, Mary made me think I could make a difference, I could contribute to the hospice movement.
I felt fiery after the plenary session. The contrast between the presentation on stage and my experience a few years before as the "Gen Y" approaching the CEO was frustrating. I felt Mary would understand.
I hope individuals in leadership will remember that a few minutes of their attention can turn into a moment someone remembers forever. The hospice movement needs to encourage young people to participate in the movement to improve care at the end-of-life, please keep your doors open.
I decided to take a break from tweeting (yes, I live tweet from hospice conferences) and have coffee in the courtyard by the fountain. It had been an emotional night and now feeling frustrated I thought it would be a good idea to take a breather. About twenty minutes into my coffee, a man started to push Mary Labyak in a wheel chair directly towards where I was sitting by the fountain. Of course my entire self lit up. My eyebrows raised, my lungs filled with air. How is it that I happened to take a break, I happened to sit for coffee here and Mary is being wheeled directly towards me? The man who was pushing her wheel chair began to turn around, he had made a wrong turn towards the fountain. My heart began to sink, except that Mary started waiving her arms. She had him turn back around and with open arms and a huge smile greeted me with her warmth, "Renee!"
She grabbed my hand. She held my hand. I was given my moment to say goodbye. To say thank you. To say she was the opposite of the plenary presentation from the morning. To say that her few minutes made a difference in my life.
"We believed we existed to change the world" - Mary Labyak