The 2020 Virtual Hawaii Walk to Defeat ALS is honoring Mary Patterson and her husband John with the ‘Ohana Award this year. Mary and John were very involved in raising awareness and support for those facing ALS and other neurodegenerative diseases in Hawaii through the Sailing for ALS entries in the Pacific Cup and Transpac races, and the Hawaii Walk to Defeat ALS. The two courageously battled Mary’s own struggle with a very rare neurodegenerative disease, side-by-side, and managed to still find joy along the way.
Sadly, Mary passed in February of 2020. John shared some reflections on their 54 years of marriage and friendship, and their commitment to help others in Hawaii:
“Mary was the first girl I met upon my arrival in Albuquerque, New Mexico for college. Friendship, courting, and love culminated in our marriage in 1966 and the beginning of our life together. We raised two wonderful children, now adults, and led a fascinating and joyous life in various eastern and western US locations. My business took me around the world, and Mary was able to accompany me on most trips, giving us both a perspective on the wonderful similarities and differences coloring the world’s population and cultures. Mary would color her own life as she evolved from mother to gallery owner, administrator to juvenile court, chef, rowing coach, hula dancer, and a lover of travel and of life.”
“Mary had noticed tingling in her extremities. But it was sometime later, when she tried to play the piano and could not, (the piano is where she went for peace and contemplation) that she recognized something was terribly wrong. Each year progressed with the loss of something else she loved; days of boating the open seas, driving, hula, ultimately her ability to cook and to travel. Mary had been diagnosed with corticobasal degeneration (CBD) and connected with the Golden West Chapter of The ALS Association, because her neurodegenerative condition was too rare to have a support group of its own. The local ALS community accepted us as part of their family in 2013, when Mary was 69 years old.”
“As ALS, or any neurodegenerative disease for that matter, gradually robs you of the things in life that bring you joy, it is natural to experience anger and depression. But Mary used her remarkable sense of humor to lift herself to a better place, and then used it to lift everyone else whom she embraced, leaving the pain of her affliction only barely visible. Her humor was on display through the very last seconds of the very last day of her life, as was the joy and love among the assembled friends and family.”
“What started as volunteering as Honolulu host for a Transpac race boat evolved into hosting each year’s Oahu reception for Sailing for ALS. Then, we began to help with fundraising through Sailing for ALS and a special Gala event held at the Royal Hawaiian to benefit the ALS community in Hawaii served by the Golden West Chapter. We helped with community outreach, and ultimately Mary became creator and captain of the HI Heals Walk to Defeat ALS team. Even though she was battling her own neurodegenerative disease, Mary treasured the local ALS support group that we turned to for information, and the friendships she developed among her ALS ‘family’.”
“When you feel like all that you treasure has been taken from you, it is the love and compassion of those that surround you that bring you peace. It is our combined humanity that lights the way from despair and sorrow to love, comfort, and joy. Sometimes you have to open the shades a bit to let the light in, and COVID-19 has made that immensely more difficult, but it is there to lift us all to a better place.”
The 2020 Virtual Hawaii Walk to Defeat ALS is remembering Mary through the ‘Ohana Award this year. John and Mary courageously battled her disease side by side and managed to still find joy along the way. Cheer’s to Mary.
The Golden West Chapter says, “Cheers” to Mary and John for their leadership and compassionate commitment to families facing ALS in Hawaii. Click here to make a gift to Mary and John’s Walk to Defeat ALS team, in Mary’s memory.