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When Days Go Bad

24 Oct

Joy Caffrey is a dear friend and a key member of our “healing team.” Her unique gifts have helped many of us to stay centered over the past year and each week she visits our home to work with Kim in support of her healing on many levels. What follows is a reflection from Joy on one of her visits.

Kim’s extended family is nothing like I have ever seen. They drop everything and show up. Mother, fathers (John and Kim’s), father’s wife, mother’s husband, brothers, cousins, aunts, even 90 year old granny, all travel across the country.  They come for Kim, for John, for Jack. They come because this family is alive and they value life, creativity and relationships. They have learned that with ALS, time is precious.

To Barb, her daughter is precious. She quit her job in Ithaca, New York, is holding on to her marriage from afar, and came to be with Kim. She moved in to offer John ongoing relief and stability from the impossible juggle of being a full time caregiver, active parent and breadwinner.

Last week my healing session with Kim in her home was Wednesday and not the typical Thursday and it was earlier by 45 minutes. Changes can throw any of us off.

Walking from my car toward their front door I paused on the sidewalk to wrap up a phone call. Jack, seeing my car and not the phone to my ear, came bursting out the front door to greet me. Barb, in typical quick pursuit, was right there, one step behind Jack’s three year old spontaneity. This has happened before; Barb greeting me at the door with Jack underfoot. Jack begins conversing with me even before I am in earshot. Barb’s eyes reveal the morning hours as an emotional gauge to cue me into what’s inside just past the storm door. This morning I see pink rims and the hint of turbulence in her eyes. Her energy conveys restraint and tension. I pick up flitting eye movements that welcome me and facial muscles waiting for the exhale. She tells me it is a hard morning.

I walk toward the kitchen and catch Kim’s tears and John’s attention. They speak in quiet voices. We are aware of each other. I say out loud that I will sit and eat the chocolate yogurt that I brought, as I came straight from teaching yoga and hadn’t had breakfast. Barb suggests that Jack find me a spoon. Jack and I discuss spoons and chocolate yogurt. He says he too will eat his own (imaginary) chocolate yogurt. I sit in the chair closest to Kim. And I quietly observe. I don’t want to intrude on John and Kim’s intimacy, though I want to understand what is present. John is behind her chair, composed and caring. Kim looks at me and starts a deeper guttural cry. She says things I can’t understand though John can. She works on grabbing a tissue and although she can reach the box, cannot grasp the tissue. John gently grabs the tissue and lays it on her curled fingers. The tissue makes it to her face. There is a pause. Then another burst of deep pain and tears. I watch the strain on her body as she cries. I wonder why crying is so necessary but so hard on our bodies and particularly hers. There are longs spasms between her gasping breaths. There is the out pouring of fluids, from eyes, nose, mouth that such hard crying brings. John places another tissue on her hands. He waits as she moves her hand to her face. She loses the tissue to the floor. He picks it up, moves to the side of her, and lays out another tissue. His spine and jaw are poised in appearance though ready for action, subtle weight distribution from one foot to the other and back again. I feel the weight of his wait. His fingers tell it all, they’re curled, unlike Kim’s, his forefinger and thumb rub and tweak. More waiting, I know he knows I am there, I feel the waging pull of his responsibilities, work and caregiver. What will the transition look like, the passing of the caregiver baton? Jack moves in and about around us, undisturbed by the emotional outlay.  I sit present with calm and trust. Eventually John steps away, I think to get something, and Kim continues to cry. I wait until I am internally guided to scoot my chair closer and ask her if I can ground her. Her eyes answer. I place one hand on her heart and one on her back and lean my head into hers meeting her tears with tenderness. I ask if I can wipe her nose and face. She nods. I move carefully between not doing too much and doing what is appropriate as healing and nurturance. There is no need to stop her crying, or for me to even know what set it off. We are present to each other in that moment as is. No excuses, no preliminaries, no judgments.

We talk about when we are crying from our individual pain and personal experience and when it moves into the archetypal pain that is so much bigger than us and harder to extract ourselves from. She shares with me the pain of knowing how hard her condition is on her family, she worries about John and the energy it takes to be a caregiver, while also dedicated to his teaching and research. She worries about John’s health, her mom’s health. Weary from care-givers stress, they are susceptible to the germs that come home with Jack from day care. This week John and Barb are again sick, and Jack with an earache.

Kim is frustrated that on some days her contacts don’t get in or her hair doesn’t get brushed. On this morning she wanted to be ready for me. But the change of day and time threw off the routine. Kim cringes knowing that she snapped at those caring for her, she battles self-judgment. People don’t know what it is like in her body and she knows not to expect them to understand. Still she needs the space to express these irritations without anyone feeling like they need to fix it or take away her feelings. The beauty of Kim, in that moment is that she shares this without an ounce of victim energy. She is frustrated because it is frustrating to be dependent on others. She is angry because she has lost the ability to care for herself. She is worried because she witnesses the toll it takes on her family.

The majority of this morning’s healing session is right there at the breakfast table. Almost an hour later we agree to move the work to her massage table. John passes though the kitchen to check on our schedule, knowing Kim has swimming. I agree to be the monitor of the time and will come get John when we finish the healing work on the massage table. John asks Kim if she needs help getting up from her chair to the walker so we can get to the other room. He waits, as answers are not quick yesses or nos. She tries to get up from the table on her own, but the morning emotions have used her available energy. She grips the tables edge to pull herself up, but this time the table moves and not her. She takes John’s assistance. From behind the chair he lifts her up and she precariously balances between table and chair on the balls of her feet, waiting for her leg muscles to let her heals down.  Kim uses the walker to get to the room. Her legs are stiff at first. I follow behind the walker, aware of the change of expectations of how long it takes for one to typically walk from the kitchen to the bedroom to how long it takes Kim to take the journey down the hall. I am aware of the sound of the wheels of the walker on the hardwood floor, the slow placement of a foot, the repeated sound of push, pause, step. I can hear Jack’s voice over the kid’s video playing behind the door of Barb’s room.

Our time on the table is short and effective. It is restorative and balancing. A calm settles in Divine presence. We have been doing hands-on energy work for months now. The work allows Kim to re-center emotionally, spiritually and energetically. The work offers her reframing, new perspectives and coping skills. In these healing sessions we hold the understanding that a complete physical healing is possible. We understand that healing and curing are different things, and that is in God’s hands. While holding complete and total healing as a possibility, we have also been seeing the reality of the progression that ALS has had on her body. In the face of that we access courage, honesty, and strength to be able to look at the end of life straight in the eye.  We do so with love, creativity and with consciousness.

Kim is not dying of ALS. She is living life now with ALS. Some days start out better than others. The experience of ALS is not just Kim’s; it is her family’s journey, her friends’ journey. We, the extended community that she has created, give witness to this and in some way we are all touched.