Wednesday, July 4, 2012

Leaving Normal

Each time I cross the threshold, I know I must leave behind my ideas of “normal,” but it takes me a few minutes to let go, to relinquish the familiar in an effort to avoid emotional vertigo. Resistance is futile and painful, like muscle being pulled from bone.

Someone has painted the inside walls of the dayroom to look like the outside of a log cabin- a two dimensional porch, bright green grass and ambivalent flowers depicted close to the floor. Initially I find it garish, jarring, but with the natural light coming in through several windows in the room and the mental confusion of the residents, I can see how they might actually be comforted by the illusion of being outside, in front of a cottage, on a warm summer day.

Even after all this time, I look for the man I knew- the one with a ready smile, and quick, sure, energetic movements; the one who, just two years ago, would hug me so tight when I arrived at or left my parents’ home that all the air would be expelled from my lungs; the one who was always moving and doing, chopping wood, cutting grass, tending the garden, clearing snow from the driveway. . . .

I see him now, my father- smaller and greyer than he was, slowly making his way around the room in an oversized mismatched sweat suit and someone else’s shoes. He will no longer tolerate hearing aids or glasses. I approach slowly, not wanting to startle, struggling to leave my impossible hopes behind.

I touch his arm and he looks into my face. Recognition and confusion pass over his features like clouds crossing the sun. I speak quietly, deliberately relaxing my body to fit into the pace of his world. He does not understand my words but responds to my tone and body language. Realizing that I am not asking something of him that he may not be able to understand, he relaxes. I walk with him, following his lead, sitting when he does, stroking his arm, touching his face.

My soothing tone and movements are not just for him. Inside, a part of me is screaming in protest. This younger self arises each time I visit this place, filled with grief and rage at the cruelty of the disease (Alzheimer’s) that is shaping my father’s life. Part of me is having a hard time accepting that there is nothing more to be done, that this is beyond our control. I softly touch the skin on the back of his hand- fragile, translucent parchment- to say to myself and to my father- “It’s okay. This is what is. We can be with what is. We can love in the midst of all of the conditions over which we have no control. Breathe.”

And slowly, as I find a calm centre, I slip across the border from the world's ideas of “normal” to being with what is. Here, now, a smile,or a moment of connection and tenderness outweighs all other priorities or plans, all the "normal" measurements of accomplishment.

Other residents come up to me. Some try to talk, others just sit close. One woman moves continually, incessantly calling out random syllables- “La, la, la, la, ya, ya, ya, ya . . .” Suddenly she stops in the middle of the room and, looking at the rest of us with a surprising and momentary gaze of clarity, says emphatically, “THIS is NOT working!” Soft laughter ripples around the room. One of the staff gently takes her arm to walk with her and says, “No Gladys, it’s not. But it’s okay.”

And I think about all the groups of people thought of as being outside “normal,” somehow less a part of the world or daily life: those who are physically or mentally ill or injured (my chronic illness has often put me outside “normal;”) the very old or very young (and I think of being home with babies and feeling disconnected from the hustle and bustle of “normal” life;) in an affluent society- the poor and homeless; those whose beliefs are radically different than ones expressed in the media; those whose colour, size, appearance or sexual identity does not fit the dominant cultures’ mould. . . . . 

And I realize just how much life is happening outside “normal,” and I wonder how our notion of “normal”- what is seen as ideal- could be expanded, gently stretched to include the real, to hold all that is alive, breathing, feeling, sensing.

Or perhaps there really is no “normal” against which we need to measure ourselves or our lives- a process that too often results in shame and disappointment.

Because the truth is, there are no conditions that put us outside love. And that’s a reality I am willing to embrace in every moment.

~Oriah (c) 2012

(Note: for those who do not know- my father has advanced stage Alzheimer's and is a small ward in a mental health facility for those with dementia who have become too violent to be safely cared for elsewhere. My father was never a violent man, but in the latter stages of the disease he has injured several people. Most folks stay there for a few months so the staff can discern triggers for aggressive behaviour and residents can return to being cared for closer to their families. Dad has been here for a year. His violent outbursts follow no discernable pattern and often appear to have no external trigger. The care is truly wonderful, although I admit I wondered on my first visit if the staff were all on valium. They were so relaxed, consistently moving and speaking very slowly. Of course, what they know is that folks who are not able to understand much in their environment are hyper-alert to and potentially triggered by the slightest tension in others. I am deeply grateful for the tender care they offer my father. They are truly earth angels.)

15 comments:

  1. The box of "normal" is so very small and restrictive. Thank you for going outside the box, outside the lines, for daring to be you no matter what. What you said here is profound, and perhaps a great new mantra: “It’s okay. This is what is. We can be with what is. We can love in the midst of all of the conditions over which we have no control. Breathe.”

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    1. Thank you for your deeply moving blog this week. Two days ago I wrote a dear friend who in the past year has been a great source of strength to me. Amid the aftermath of living in a city affected by forest fires, and coming to terms with ongoing health issues both for myself and my husband, I wrote to her on Monday that "things are getting back to 'normal'(whatever that is)."
      In the last year I discovered that she lost both her parents to Alzheimers, her father about 1 1/2 years ago. She is not one to open up and write about emotional issues. She is down-to-earth and one of the kindest people I know. However, she said something interesting about how she felt---that it seemed more difficult for her than for her parents. I think she meant that she was fully aware of the changes and the effects of the illness. She saw them each day and felt helpless, watching them fade from her.
      I can understand. As caregivers, as family and close friends, watching those we love go through the physical changes brought about by disease, is like a pain heavy in our chest. Sometimes is forces us to dig deep into what sustains us, to find the comfort and courage we need to carry on and offer loving support.
      Now my husband's mother is showing signs of this illness. We visit her soon and must prepare for any changes.
      Reading your blog this week, well, perhaps it can help me for the days ahead.Brenda

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    2. Brenda, prayers for you and your husband and his mom. It is a difficult journey but. . . a little easier in the moment when we can just meet the moment as it is, breathe deeply and let love carry us. (And some days/moments are better than others :-) Oriah

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  2. This was a beautiful post. I didn't get enough time with the man I considered my grandpa before he passed away, but I listened to the heartfelt pain my grandmother went through when she saw him kissing other people, and not knowing who she was, but her huge heart overcame all of it, and never strayed from his side. Oriah, I look forward to wednesdays.. and reading your wonderful posts. Thank you.

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    1. Oh how hard that must have been for your grandmother- but her love carried her through it. O

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  3. Beautiful. My father also lived with Alzheimer's, eight long, sad years. His decline was painful to watch and he, too, was violent at times. Your writing on "normal" resonated with me. My dear honorary "nephew" suffers from paranoid schizophrenia. Still, our relationship is deep and rich, and each year he is courageous enough to fly 3,000 miles to spend my birthday with me. I do the same for him each year. He is in his 30s now and while it is sad that his life is not as broad as others, my relationship with him is richer than many others I have. Truly, "there are no conditions that put us outside love" and isn't that wonderful? Thank you for expressing what I feel so beautifully.

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  6. I assume the previous comment was a joke- certainly did not fit here. If it was not a joke, feel free to email me at mail@oriah.org

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    1. (And by previous comment I mean the one I deleted - not yours Carol :-)

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  7. Your father and you are so lucky that he is in such wonderful care. There are so many bad mental health facilities where people are not dealt with love and respect. I'm happy for the both of you!

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    1. Nora, I offer prayers of gratitude every day for the facility and the staff who are offering him care. This is a heartbreaking illness- I cannot imagine how much harder it would be if there was not this kind of care and support or if it was only available to those with a lot of money. Blessings on those who work at, administer, and set up facilities such as these- and on the Canadian public health care system that makes sure everyone received the same level of tender care. I always do a little prayer of gratitude when I pay my income tax (for the ability to pay some tax and for the services we create together by pooling our resources) but this year's prayer was particularly passionate.

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  8. This was very touching. My 91 year old mother is suffering from delirium and it is painful to witness. I can't even imagine what it would be like to have a parent or loved one with Alzhimers.
    Thank you for your beautiful words.

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