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Orange County, California (8/12/16) — The universe works in mysterious ways. Just the yesterday, I was one of two doctors at the home of an (Amyotrophic Lateral Sclerosing) or ALS patient who is planning her “exit” from this Earthly world. And this morning–as if to reaffirm a prayer I had not even put out into the universe, an artist-FB friend-creative shares this SacBee news article that I desperately needed to read. Thank you, Lý!

http://www.sacbee.com/news/state/california/article95095487.html

My index patient whose case and family I have gotten to know intimately within the last few months, (because I was called upon to consult on her End of Life Option Act aka ELOA wishes), is a retired nurse, world traveler, avid lover of multi-culture, men (she married three… In succession and eventually divorced them all!), food, music and dance.

This formerly “It-girl” who was “the life of a cruise ship party,” has been planning to inject her lethal elixir into her gastric-tube–very soon! But first, we have to fulfill a formal list of clearly prescribed procedures for her to be able to carry out her deep wish. And when she does, she has asked that her big, fat multi-culti, multi-generational, “Model United Nations” family and friends to “celebrate” downstairs in her beautiful home in Orange County.

In her final scene (which she has been choreographing for months), she will be upstairs in her bedroom. She has requested that a hospice nurse and I be present in that same room. We have committed to be “present” to bear witness to her taking control of the ALS–a devastating demyelinating disease.

“Demyelinating” means that the underlying peripheral nerves (involved in this not-as-yet-understood neurologic disorder) that feed her muscles are slowly but surely, no longer working properly. Such that her vocal cords, her breathing muscles, her bowels, the fine-motor muscles of her fingers, the gross motor muscles of her arms and legs are slowly losing their power and function.

Meanwhile the synapses in her brilliant and sharp “central” brain function, remain intact. She is cognitively alert, conscious and aware of all the current and ‘possible’ future nightmarish pain and suffering that await her in the days ahead, as her physical body continue on its certain course towards utter and complete shut-down. The physical as well as mental, emotional and spiritual pain and suffering of diseases like ALS are unfathomable to us ‘healthy’ humans. (This is not to mention the suffering of the 24/7 caregivers, family members who are left in its wake, to attend to the patient whose body this disease is invading.)

Now, becoming an inextricable part of this patient’s (and her village’s) life narrative, I feel as if we are all cast in a real-lived horror movie version of the 1978 cult-film, “Invasion of the Body Snatchers” or a “Zombies” reality TV series. What complication, near-death choking paroxysm, upper respiratory infection, explosive diarrhea lurks around the corner next?  Every moment of every day is filled with “edge-of-our-sanity” angst, fear and anticipation.

This diabolical ALS has over the course of just 2 years–despite her brave willingness to be a human subject for not-as-yet efficacious experimental therapies at UCI’s Neurologic Institute–has robbed this life-embracing woman of her voice, her breath and in short, her entire
body.

She can no longer speak, nor control the abundant saliva that wells up in her mouth. She cannot chew, swallow nor eat solid, delicious food from around the world–a world that she has traveled, danced prolifically, laughed, loved and eaten up over the last 65 years. Nowadays, she isn’t even able to taste the sweet Chardonnay California wines that she loves so much.

And thereafter, we three in her bedroom: we will accompany her and watch her favorite 1990s chick flick, “Shirley’s Valentine” … as she falls into an eternal slumber.

Quietly, peacefully we will help this woman finally find peace, after fighting like a warrior for nearly 3 years a battle she was doomed to lose. A battle against one of the worst diseases I have ever experienced–worse than most cancers and HIV, back in the 1980-90s when this devastatingly deadly infection had no effective treatments. Such diseases not only erode away a person’s muscles, bones, hair, skin and body, they also devour and eat away at the dying patient’s psyche and fighting spirit. Even for the most spirited among us, it is a very hard and cruel process to witness..

And yet, to be present at her bedside, when she takes her final breath–will be one of the most courageous things I will have the privilege to bear witness to… And one of the most memorable honors of my incredible, world-wide-well-traveled career as “doctora” and “healer.”

In the house, on this soon to be announced date, I will be in great company. Her wildly vocal sisters, one dutiful and gentle son, three grandchildren, multiple nieces, nephews and a handful of “Thelma and Louise”-type girlfriends–we well brace ourselves for this final act of ultimate self-determination.

And from now until then, I will read and learn as much as I can about ALS and ELOA. I will meditate daily and grow from this intensely anticipated event.

Namaste to the all-knowing, all-powerful Universe for giving us all that we need to journey on this path of Life–and for facing full-on all that She has to offer up, to all of us who are willing, ready and able to receive her gifts. L’cha’im! VIVA La Vida Loca.