Wednesday 4 September 2019

You Have to Read This - A Beautiful Fable for Caregivers

About a year ago, I opened an email message from someone I'd never met called Diane S. who wrote to tell me that this blog was meaningful to her. It was a beautiful letter - one that I still treasure. She told me, "We are parents of a 26 year old who is medically fragile, blind, non-verbal and severely delayed. You know the journey." Now, after many more email exchanges, Diane is a friend and confidante. She is such a talented writer - her gorgeous short essay is included in my new book - co-authored with Dr. Zachary White - The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver. 

Here is another profound reflection from Diane. I know that I have felt like this mermaid many, many times. Have you?


Sometimes, I feel like I am treading water in a deep, distant pool. When I get tired, I notice the endlessness of it; how far I am away from any place of rest. This tends to feed my fatigue. At other times, there are other things in the pool, making it less hospitable.
There are things I need to get around, avoid, accommodate; or the water is choppy, cold and murky. My breathing gets harder, water slaps in to my mouth, my legs and arms are both heavy and numb.  
The worst days, though, are the ones where I am clearly struggling, but simply too far out for anyone to notice. Not so far that I can’t see the people in the shallower end catching all of the life preservers I can no longer reach. I realize, at that moment, that they have the energy, the wherewithal, the perspective to get what they need. They are still in the eyesight and earshot of support, and they readily accept it. Even those that occasionally get plunked in our depths, are quickly sighted and targeted for relief.
I do not begrudge their position, no less their temporary place there, but I do wish for it. I understand that people offer their best efforts when they can identify with the need in some way. People can relate to illness, to death even, when they can see themselves or someone they love possibly being there; but they do not relate to the still waters of the deep. The place where the chronic state of fragility makes you all but invisible. Luke, unseen by most, because they cannot imagine his experience in any way. Thus, they cannot imagine our experience relative to him. They don’t see the struggle because we have struggled harder to be a positive reflection of his spirit.
In the great depth of this experience, there is tenderness, grace, purity and profound compassion. Fatigue, insatiable and relentless, is capable of overcoming the lightest of hearts. It is then, not easy to watch the other end of the pool, oblivious to its fellow inhabitants.
I pretend that I am a mermaid. I give up my manic treading, dive deep in to the peace and breathe.

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