Jen’s Half Cents: Stepping into the Shadow of a Giant

I’ve often tried to distinguish between the sense of grief and shock that follows the death of a hero. Emotions are complex…layered especially when it comes to grief and the amount of work that’s involved in mourning and appropriate appreciation for a person’s life. When a young person dies unexpectedly, the sense of shock layered onto grief is exorbitant. That shock is expected to be less so when a person of advanced age moves on from this plane. This sentiment is not to disregard the tragedy of loss but to distinguish between “heavy” and “sharp” pains.

When William “Bill” Arnold passed on September 29th, I didn’t expect to feel the deep sense of shock that struck my heart. Tragedy, yes, because losing the presence of this titan is indeed a tragic loss for the community of advocates his work and passion shaped. But the shock was unexpected. There’s this thing that happens when admiration is a core part of one’s perception of a person – regardless of age, the relationship seems to defy necessary acknowledgments of nature even if, as was the case with Bill, the subject of said admiration challenged the admirer to not forget. In writing my second “Half Cents” this year, Bill appreciated the emphasis on needing to shore up the advocacy pipeline. After all, the blog was based in part on the very first discussion he and I shared. He cautioned, however, “there’s an obvious target here”, referring to himself. A stark reminder of his age. I think…I should have taken more note of the comment and in retrospect I regret not seeking more of an opportunity to discuss how he felt about the piece and what it meant for him, personally.

Writing this blog is a particular challenge in that few words can express the deeply complex set of feelings I’ve had to navigate since Bill’s death. The last in-person conversation Bill and I had was outside of a restaurant, after a fireside chat hosted by CANN’s sister organization, ADAP Advocacy Association in early December of 2019. As Bill and I were among the few smokers in the crowd, I enjoyed spending time with him outside, even in the bitter cold New Jersey had to offer that evening. We didn’t talk about recent politics or the upcoming election or even particular policy issues the event focused on earlier in the day, as was more common of our “smoker’s chats”. Instead, we talked about his childhood and the quite remarkable, yet humble life Bill lead. I like to remind advocates we should “bleed a little” in our work because the lives we seek to impact and the stories that drive this work are the emotional blood bonds of effective advocacy. It is unjust to expect patients to share the intimate aspects of their lives and health and to not return the favor. And in those moments, what Bill chose to share with me felt less like bleeding a bit of himself and more like welcoming me into his home. I don’t know how to reconcile that quite yet.

The greatest tragedy of death, however, is the world does not stop for grief. Things still need to be done in order for the world to function, work does not stop piling up, decisions must be made in order to not compound the difficulty of an already difficult time. In that respect, CANN’s general consultant, Brandon M. Macsata was tasked with making a recommendation of succession of Bill’s duties to CANN as President and Chief Executive Officer to the organization. This was not an easy thing. Bill had been a mentor and friend to Brandon for more than 20 years and the enormity of the moment weighed on him. He wanted to fulfill his responsibility to the organization and do justice to the Bill’s legacy, as did CANN’s Board of Directors. In this space, while we may not all always be friends, we are all comrades in a fight for improving access to care and thus the lives of those around us, in particular, the most vulnerable of our shared communities. This decision was both professional and personal, as it should be, in such intimate work.

So, when the Board of Directors, through Brandon, approached me to ask if I would be interested in assuming the role of President and Chief Executive Officer, stepping into Bill’s shadow, I had to take a moment. “These are mighty big shoes to fill”, I’d say before expressing some trepidation, not at my skill or ability, but because of an earnest desire to ensure Bill’s legacy would be appropriately honored - the Board, our patient community, and our partners would be proud of the work that follows. In expressing confidence and navigating the decision-making process, CANN’s board members placed an emphasis on both skill and temperament, a need to focus on policy changes from the patient perspective, and for the next chapter of leadership for the organization to balance these qualities and ideals.

“You and Bill are cast from the same mold”, will forever be one of the greatest compliments I will ever receive. It’s one I hold dear to my heart and the sentiment provides me a laser focus the mission at hand.

The outpouring of support CANN has received, both in offering condolences and in appointing me to the role of President and Chief Executive officer, has been incredible. While changes are certain for CANN’s future, the organization will continue with the same goals it was founded upon and has served for the 25 years; “defining, promoting, and improving access to healthcare services and supports for people living with HIV/AIDS and/or viral hepatitis through advocacy, education, and networking.”