Blog Farm

The Blog Farm

Saturday, October 8, 2011

The Educator

"The mind and spirit of man advance when he is tried by suffering...suffering and tribulation free man from the petty affairs of this worldly life until he arrives at a state of complete detachment."

Those are the words of Abdu'l-Baha, son of Baha'u'llah, founder of the Baha'i Faith , put to paper in Paris during his 1911 visit.

In no way would I compare our affluent, comfortable lives with those of the aforementioned family who suffered terribly through years of exile and imprisonment, but with each passing day of Michael's illness, I begin to understand those words. I have come to see Parkinson's Disease as my educator. I would not want to guess at or comment on Michael's spiritual experience with this ordeal, except to say that he seems to have achieved a detachment from the world and, most days, a serenity and acceptance of his condition that I have never seen in anyone else.  It is I who must be taught.

I am learning to smooth the rough edges of my speech, to speak without judgment, without anger, sarcasm and frustration, to speak cheerfully when I'd rather scream.

I am learning to wait calmly and without hurry for my husband to search for and utter the words he needs to tell me something important or not so important, and to give each equal weight. I am learning to take the simplicity of those words and thoughts and dig below the surface to the intelligent mind buried within, to find meaning in the spaces.

I am learning to listen to wordless communication, to understand a facial expression, or simply a look in the eye when Parkinson's leaves his face a stricken mask, unable to communicate in even that most basic way.

I am learning to love my husband unconditionally beyond the physical reality of our relationship, a reality that means little communication, little intimate contact, no equality of minds or exchange of ideas, to love the man within the returned, needy child.

I have learned many skills through these challenges.

I was a shy, quiet girl when we first met; Michael was my strength, always socially adept and affable, qualities that attracted me.  He talked and listened and loved all at once. I leaned on him. Over the years we have switched roles; my confidence has improved, his has waned. Now he is the one who looks to me for reassurance socially. He leans on me. His eyes dart to me immediately to fill in the words for him if he cannot find them himself. I have found my voice when he has lost his.

I have learned to take care of business, all business whether it is household accounting, small repairs, catastrophes, car shopping, home renovation decisions, yard work, parenting as though a single parent, pet care, problem solving, all domestic work. I am learning how things work like sump pumps and furnaces and tractors and generators.  I can light fires to keep us warm and haul the wood we still have from when we heated that primitive way but might have to again with frequent power outages. I can haul water, cut grass, clear driveways. In short, all skills required in the running of a household and busy family I have had to learn or at least know to whom I can affordably delegate.

I have acquired an assertiveness I never had before.  Years of advocating for this voiceless man have given me courage to speak out on his behalf, to complain about inaccessible buildings, to insist on medication changes. I am not sure I can yet do it for myself but it has become easier to do so for him and for others whose care has been bestowed upon me. I have learned that my natural courtesy accompanying a decisive and informed approach are a powerful combination and almost always meet with success.

I am learning to have an awareness, an empathy and an understanding for those who suffer with illness in our world, especially those with mental health afflictions. Michael's behaviour has sometimes bordered on what I imagine schizophrenia to be like: paranoia, delusions and hallucinations with accompanying fear and aggression. When I witness similar wild behaviour in the streets, I understand and wish the world would too. Many are self-medicating to escape the horrors in their brains. It is sobering to know that if Michael's condition weren't properly managed he too might be living and raving in the streets, if he could survive long enough.

I have learned a lot about what well-wishers need to know.  They need to know to offer specific assistance such as, "I can give you an hour of respite on Sunday," not, "Just call if you need anything." A caregiver WILL call when she really needs something, but the day-to-day needs are so great that a community of people would soon be exhausted by constant requests for help;  they must understand that a caregiver does not want to burden folks to the point of burnout and avoidance. It is better for those who can to step forward themselves to offer specifics and not burden the caregiver with their guilt if they cannot.  This knowledge I will carry forward to all future involvement with the frail and their caregivers.

I have learned to shut out loud noise, to tolerate the constancy of the television, to enter my own inner world. I am learning to write and silence the editorial voice that haunted my brain and froze my pen all my life. I have cast aside that pen and taken up the computer instead, an instrument that has freed a flow of unfettered words onto the screen, to be cleaned up later.

I am learning to be patient with the course of this disease, to understand there is no formula, no straight trajectory. Michael could live ten minutes, ten days or ten years, but that is no different for any of us, is it?  I have to accept that my impatience to "get on with my life" must be put aside, to realize I am engaged in meaningful work no matter how boring and frustrating it might be at times. I am also learning to be patient with myself, to pare down my expectations of perfection so that when I mess up I forgive myself more quickly.

I am learning to pace myself with that patience. There is time for everything and what there isn't time for turns out  to be unnecessary or unimportant; "petty affairs". I have learned that to be an active member of my community I simply need to try to be the best person I know how to be, to treat all who cross my path with reverence and respect, in itself an act of revolution. I do not need recognition from anyone outside the little world of my home and my caregiving. One can have an impact on one's community without going more than a few steps from one's door.

I am a calmer, stronger, more efficient person than I've ever been before.

I am learning how to pray and put my trust in a higher order; to put aside my ego; to understand that what I want is inconsequential; that this is the job I have been given and this is what I must do. Nothing else matters. I am aware there may be divine mercy and justice at play here, allowing me to make amends for what in my mind looms as an egregious long-past offence. Atonement.

It is an impossibly long and arduous road to that "complete state of detachment," a destination I will never reach but must persevere nonetheless, as we all do. My ego frequently rears up with insistence and blocks the path. But I am learning, I think, and must be patient with that process too.


  1. Thanks Thom. Just a pretty ordinary girl I'm afraid.

  2. Dear Claire, I recently found your blog while looking for support groups for wives whose husbands have PD. I've started from the beginning and find your story so candid and poignant. Thank you so much for sharing with us.