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Claire - Day To Day With Parkinsons Disease

Vincent and Me

I communed with a great man today. A friend and I paid a visit to the National Gallery to take in the exhibit entitled “Van Gogh Up Close.” It focuses on his years in France, the last four years of his life as it happens and, it seems, his most productive. But it was also the time when mental illness most overwhelmed him, killing him in 1890 through what appeared to have been a messy suicide. He was only 37. He spent much time in hospitals and then an asylum after a breakdown in 1888 when he famously chopped off an earlobe, all this in the wake of a nasty argument with Paul Gauguin. These final years of his life were spent fighting despair, depression, paranoia and hallucinations.

And yet, as I wandered through the exhibit humming Don McLean’s “Starry, Starry Night,” I was uplifted. Such light amid the torment. There is a sense of peace and serenity emanating from these masterpieces; obviously Vincent’s art was a soothing balm to a tortured soul. As I inspected the details in some paintings, I was struck by a seemingly random splash of colour that had no discernible shape or meaning or, in another, a very unusual choice of colour. They almost seemed like mistakes but it was more likely that my strong sense of order and sanity wouldn’t let me see their meaning.

I eschewed the headphone tutorial. I didn’t want to be distracted from my own response to the paintings. I may go back and use the aid, but for my first visit I wanted no one else’s perspective or interpretation to influence me. I knew enough of his life to just drift through the exhibit unaided.

Halfway through my wanderings I was hit by an intense sadness, especially after reading some quotations from his letters where he admits to his madness and his efforts to hang on to sanity through his art and his connection to nature. Clearly he failed, ending his life so violently. The demons overtook him.

But what a testimony to the breathtaking brilliance of his mind he left behind. What wonderful proof of the sanity deep within him even though his life was spinning out of control. What a soothing balm for me to recognize that no matter how wild and crazy a person might seem on the surface, deep inside there is a soul that is anchored and safe and untouched by the maelstrom.

All this is comforting as I contemplate a road trip I am planning to take next week. It will be my first overnight journey away from Michael in many years.  I informed him – perhaps unwisely – of my plan a few days ago but will not mention it again until the day I leave. Already, though, the madness is quietly manifesting, though, of course, he cannot articulate his worries. Telling him or not telling him, I’ve learned, makes no difference to his reaction when the day comes. He might go over the edge, inflicting his own internal damage upon his person, his own symbolic disfigurement. But deep within I must trust there is still a little place where the real Michael hides untouched, creating his own spiritual masterpieces.

I have realized finally that this disease will probably hold Michael in its clutches for many years to come and I must take a night off if I can. Up until now I have kept going believing that this could not possibly continue much longer, that I could hold on until the end, sparing him the further agony of even brief abandonment. But recently a switch has gone off in my brain with the understanding that I must go if I am to survive this long-term sentence bestowed upon both of us. I am blessed with a gifted and competent caregiver in whose hands Michael will be lovingly looked after. She may have a big job; the worst may happen. But come what may, I must hang on to the notion that despite all the madness and confusion, Michael’s soul will remain unscathed.

I took Michael up to the local soccer field tonight where his old buddies were playing a game. He arrived with a spring in his step and walked without falling once. He tossed down his cane, announcing he was going to warm up to play. I quietly told him he could not participate in the game. He glared at me, refusing at first to believe me, but he gave in and watched from the sidelines instead, running competently for the ball when it was kicked out of bounds. A masterpiece of movement. The air was crisp and clean, nearly autumnal. But it was the sky that amazed me. It was truly a starry night with a paintbox of deep blues. I felt as though Vincent himself were reassuring me that all would be well.

Image: Vincent Van Gogh, “Starry Night,” 1889.

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    Claire - Day To Day With Parkinsons Disease

    One woman's journey as a caregiver to her husband in the advanced stages of Parkinson's disease... Loss of freedom as we have known it is a common adjunct to any disease. In the case of Parkinson's Disease it is the slow degeneration of physical capacity that limits freedom, and later in the disease for some, the cognitive impairment that limits one's ability to make rational decisions about anything, including what clothes to wear. The story of our lives together with this disease is what I hope to bring to you. Be assured that it won't be a tragic tale but I hope one of grace, humour and love for, after all, we are all struggling with life's trials in one form or another. Ours is well mapped out for us at least with all the literature available on the subject. I hope to bring it off the pages of the medical journals and into the realm of the ordinary.

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