I awoke the morning of October 9 to the news that CCALS friend Rob Millisor had died. Rob, husband and father, was in Nepal on a philanthropic mission with Doctors of the World. As I understand it, they were hiking, Rob felt ill, sat down and in moments died, “Gone Beyond.” We knew Rob through his wife Amy whose cousin Pam Crease was one of our people and passed with ALS in 2010. We met Pam through Amy’s father, Paul Dussault, former owner of a local pharmacy here in Falmouth. Another cousin is Beth McLaughlin, who is married to one of our board members Michael McLaughlin, who originally shared news of CCALS with her uncle. Likewise it was Beth who introduced Doug Oakley to us some years ago. Doug also became a board member, an advocate of our work and most importantly, a friend. He lived with and died with ALS. I am very much saddened by the sudden passing of Rob Millisor, 51 years old, father of a 10 year old daughter and a 7 year old son. He was a caring man loved by many.
I am reminded of the impermanence we face. How instantly we can go from living our lives to “gone beyond” in the blink of an eye.
As I often ask, “are we willing to become more familiar with the reality of our mortality? Our death!” I feel it is imperative we do so. We must explore that reality. I invite you to not squander the opportunity.
Someone recently called me an expert on living with and dying with ALS. After 18 years of working in this field, this may or may not be true. I have seen, experienced and witnessed a great deal with so very many. One thing I learned and hopefully embody is the ability to bring calm amidst the chaos. And as many of us know often there is a raging storm brewing in the world of living with this devastating disease. I feel it is necessary that we learn to bear witness to this storm. To do so we must hold space in order to allow whatever needs to unfold for those we are in service of.
I have recently been in meetings with the nursing staff at the Massachusetts General Hospital ALS Clinic. Gordon Heald, who I tended to in 1997-98, was a patient there. Thus, I have a long history with the clinic. I am grateful beyond words that our meetings and sharings have bared fruit in finding pathways for our mutual efforts in tending to and caring for our common people/patients. I have learned so much more of the challenges that these wonderful folk of the ALS clinic face. I look forward to continuing our work with them, sharing what we offer to our families and those in healthcare, likewise in learning more about what they bring forth to our people.
It is important to find and define the best possible care we can for those navigating the complexities of living in the world of ALS. The appropriate care is essential and not defined or limited by traditional means or buzzwords. I promise that we at CCALS will continue to do our very best in tending to and caring for our families.
I thank my friend Kevin Gosnell for being a catalyst in bringing us closer together with those at MGH and hopefully other institutions. Much is in the works. Your support is imperative.