Joshua Griffis: an appreciation

Josh Griffis died yesterday.

While working at the Pulmonary Hypertension Association for more than a decade and a half, I observed that one of two things generally happens when people get a serious and incurable illness. They are either destroyed or they become heroes.

Josh was one of the heroes.

I first heard about him when he had taken on leadership of PHA’s Omaha support group. Our staffer who worked with him, Debbie Drell, told me how the group was growing and how he was reaching out to the larger support group network to learn and to help.

Shortly after that Josh’s name came up again.  PHA was having a hard time engaging young patients.  Josh and several other became part of an advisory – and later leadership – group that defined Generation Hope.  PHA’s program for patients in their 20’s and 30’s quickly became wildly successful.  The model he helped develop was later used to build seven more special (hard to reach) population groups within our community.

When one of Debbie’s staff left, Josh applied. We knew hiring him would not be easy. Besides his pulmonary hypertension, Josh had a second illness…so rare that it was unnamed…one that caused aneurisms to develop in his body.

We did hire Josh – and never regretted it.   He was deeply respected by PHA’s support group leader network and his fellow staff and fully committed to helping other patients and their families.

One evening, Josh and I were talking about the days before we met and he told me that he had gone to Europe and lived in a monastery for six months, so that he could study their texts in the original language. I realized that, while PH shifted the path of Josh’s life journey, he did not let it change who he was…a bright, intense and committed human being.

Over time, it became clear to Josh and his doctors that the same medicines that were keeping his PH at bay were accelerating the progression of his unnamed disease.

He came to my office to tell me he had made a decision.
He was living with over 100 aneurisms and the pain was becoming too much. He was stopping his PH medications and going home to Omaha.

After that conversation, on September 11, 2015 Josh wrote a note to his colleagues.   Those words below are how I’ll remember him.  That he lived approximately 460 days from the time he withdrew from his medications was extraordinary.

Josh, I will never forget you.

September 11, 2015
Good afternoon friends and colleagues,  

It is with great regret and a sense of trepidation that I inform you that my health has deteriorated to a point where I am no longer able to perform the essential functions of my position. The countless aneurysms in my pulmonary arteries have progressed to a point where PH-specific medication is hurting more than it’s helping. After addressing some personal issues (early January), I will be admitted to the University of Nebraska Medical Center where all PH treatments will be stopped. While it’s impossible to determine how things will play out, my doctors do not expect me to fare well – they say that I’ll have anywhere from a few hours to a few months. I fully expected to remain at PHA until this disease took me … but, now that things are/seem a bit more imminent, it appears that doing so would be unfair to all of you, the community, my family and to myself.  

I will be coordinating with Lauren, Mike, Brittani and others to ensure that this transition goes as smoothly as possible. My intention is to continue working (on a modified scheduled) until the 2^nd of October – this will give me time to: complete several projects I’ve been working on; inform event organizers of the transition; strategically delegate my workload to various staff members and prepare a detailed exit memo. I will very gladly remain available to my team and replacement for guidance and consult as time and health allows.

I was diagnosed with pulmonary hypertension (and another extremely rare, unnamed disease) nearly five years ago . The experience was terrifying – I felt ineffably isolated and helpless. After a few tortuous weeks in the ICU, I felt well enough to begin researching the disease. While the vast majority of my time was spent browsing abstracts on PubMed, I was fortunate enough to run across a blog posting from a Generation Hope member, which ultimately led me to PHA. The resources and sense of community offered by PHA were empowering and paradigm-shifting. After nearly a year in the intensive care unit I was able to return home and start thinking about my new life and all that it entailed. I was still in a bit of a depressive funk but, as a sense of normality began to form, the depression was exchanged with a yearning to be more involved. While I don’t recall an epiphany or a specific moment in time, I do remember emphatically deciding that I would spend the rest of my life helping others facing situations like mine. I eventually made my way to PHA and the last three years have been the most fulfilling of my life.

I’m not sharing all this to alleviate your midday boredom or to garner sympathy and admiration but, rather, to reiterate the importance of PHA’s mission and to humbly applaud the roles you play. Each and every one of you, directly or indirectly, have made a deep and lasting impact on many in their darkest hour. Remember that and it let it be the fuel that propels and the fodder that sustains.

It has been a remarkable honor knowing and working with you all,

Joshua.