Since Jack was diagnosed with Progressive Supranuclear Palsy, an un-treatable, progressive, and ultimately, fatal disease, everyone has advice on how to cure him. Well, everyone but every single medical personnel. The advice of the neurologist was to get his affairs in order, to make those end-of-life decisions we all avoid, and to get his wishes on paper and properly notarized. But, friends, acquaintances, loved ones, compassionate strangers – these folks seek hope for him and pass this advice on to us.
Think positive thoughts, they say. Envision healing. My uncle cured his cancer with CBD oil. Marijuana cookies cured my buddy of parkinsons. Here’s a video of a guy who rode a stationary bike for an hour a day and cured his traumatic brain injury. All you need to do is walk, be sure to take seven breathes per minute as you stride. A six month course in a hyperbaric chamber will rebuild brain tissue and make you feel thirty-years-old again. Here’s the number for a dentist in Santa Rosa who will reshape your jaw in order to realign your energy. Please call this miracle-working massage therapist in Redding who will reform your brain using crystals and ancient chants. Our church has a strong prayer circle, let us lay hands on you.
I understand the reason for all this advice. People care about Jack and they want to offer hope. Hope is essential. Of course it is. But I’m never sure if the hope is offered for Jack, or for them. God knows, Jack and I understand how difficult it is to embrace a difficult truth, to stare the reality of this diagnoses in the face and beg for a gentle end. This is not Jack’s first brush with Death. The old Marine has been shadowed by The Reaper, caught an occasional glimpse of that familiar dark outline in his peripheral vision, since Vietnam.
As Jack’s caregiver, and as his wife – his protector – I follow two hard rules in deciding which remedies to try and which to turn down. Does the procedure do harm? Can we afford it? And cost is more than money. Time, and energy, and lost hope are expenses we simple do not have the means to pay right now.
So when a friend offered to come to the house and do Reiki on both Jack and me, I accepted. I have experience with the healing power of touch, believe in the interconnection of body and mind and spirit. Besides a gift freely given in love carries a value all its own.
So my friend came to the house and, as the evangelicals say, laid hands on us. When she left, Jack and I compared our experiences. Jack felt that everywhere she touched him felt better, but now everywhere she hadn’t touched him hurt worse. His solution, predictably, was that my friend, a beautiful woman, needed to put her hands all over him.
My experience was a bit more complex.
In caring for Jack, finding even a few moments a day for ME, is difficult. My mind leaps and jumps and starts down dead-end paths to meet his needs, anticipate demands, lower his stress as much as possible. Each week, sometimes it feels like each day, brings a lowering of his abilities and thus, requires that I do more to meet his needs without doing anything for him that he can do for himself. This past week has been especially difficult, with an ER visit which resolved nothing, a bad fall which injured his hip and re-damaged his right shoulder, and today, the arrival of his new, custom wheelchair, the need for which carries a psychic weight all its own.
So my Reiki treatment, twenty minutes of letting go, accepting the loving gift of touch from a friend, felt like renewal, felt as though every well-meaning friend spoke through her hands. For just a few moments I was emptied of fear, and exhaustion, and yes, bitterness, and open to hope and strength and acceptance.
I’m not sure if there is a moral to this essay, a nugget of truth for you to carry away, except that advice, even advice given in love, is not always what is needed by a person struggling with a difficult moment in life. It does no good to veil a hard truth with false hope.
Life can be excruciatingly hard.
It can also be exquisitely precious.
If someone you know has received a difficult diagnoses, offer love, offer your time and energy and acceptance. If, like me and like Jack, you are dealing each day with a hard truth, accept the love and touch and good intentions of friends and family and strangers.
In the end it’s all we really have in this world.