Tuesday, January 29, 2008


I spend a lot of time in pain these days, so I have been thinking about the subject.

Many days include the sensation of pain in my chest --in my heart, actually. Heartache. It feels as if someone one has run me through with his sword, and the pain goes all the way through to my back.

The pain of emptiness is new to me. I have a full life, and many interests. I never thought that the death of one person would make me feel so empty, and that the emptiness would be not a blank or negative space, but an aching longing. Sometimes I feel as if I am made of ashes; sometimes, like an old, honeycombed-beehive, tissue-papery, gray, flaking away in pieces. Dead, in a way...or perhaps just dormant?

I miss Katie so much that it hurts, literally. I miss her qualities and her way of looking at things, her sweet softness and her spiciness. I ache deeply over the things that will never be: the school days, sharing her learning, the vacations, weekends together, the dances, the dreams never to be pursued, the love --perhaps a wedding and babies, watching her mature, and the maturing of our relationship. I hurt when I think of the loss to David of his best friend and lifelong buddy; he will not have an ally of his generation who "gets" all of the things that are unique about his upbringing, someone to share those memories (and the griping about the "old folks" --Gregg and me-- that is often a way of coping with aging parents).

Those of you who have given birth to a baby know a kind of intense pain. I had no idea such pain existed on this earth, until I had my first baby (David); it was the awakening of a very naive woman. When I learned in my own body about that suffering, I was shocked and mystified. It took a long time for me to integrate that into my being. I remember my sister asking me what labor felt like, and my answer: "It felt as if someone was prying my body open with a crowbar."

They tried to prepare us for it in childbirth classes; they said to focus on your breathing. I found that impossible, at that time in my life. In those days, I fought pain. Now, after doing some reading of Buddhist writings over the years, I see that there is another path: being present to the pain, with acceptance and openness. It is terrifying, at first, but it is a better path, for me.

The physical pain of this grieving is surprising to me. Perhaps that is why it is so exhausting, and why I have not enough energy (or social patience) to go out or be with many people. It is not the right time for me. This time needs to be devoted to surfing these storm waves of pain, and keeping myself from drowning in them.

There are memories in my mind of the past year and a half that are traumatic. They cause sharp pain. I carry mental images that hurt me, yet they are some of the last ones I have of my life with my daughter. I never want to lose a memory of Katie, but some of them are hard to live with, all the same.

Watching my daughter suffer created pain in me. Watching her bravely receive daily injections (two and three times a day), holding her hand through countless scans, blood draws, infusions, procedures; holding her as she vomited many times a day; medicating her around the clock; holding her as she cried out in pain, and being unable to relieve it immediately; helping her in ways too intimate and numerous to detail...memories of her suffering are part of my suffering. Yet, in caring for her, I found my deepest personal joy. I could just be my love for her, and this is the greatest work I have ever been privileged to do.

Caring for a person you love who is dying is a journey through a landscape of the mind and body that I cannot describe fully. It is both painful and beautiful --not unlike giving birth, contradictory in its nature. Unlike giving birth, however, it is not a beginning, full of hope, for the caregiver. Perhaps it may be for the one who dies, moving away from us into another life, but for those left behind, it is a desolate and painful leavetaking, no matter how gentle the dying may be.

I find myself longing to be back with her on any day, even in the hospital, even when she was dying at home, yet I do not wish for her to suffer any longer. As hard as it was to suffer with her, I would just love to have one more moment, one more hour, one more day with that wonderful, joyful, fascinating girl who lit up my life.


pinky chong said...

dear karen,
i found your website though caring bridge..fortunately the little one we love has recovered from his brain tumor and doing great. as a mother of an almost two-year old son and a new one on the way, your website touches me in profound ways. the way you write about your darling daughter and sweet family is amazing and lovely. i cherish my husband and family a bit more every time i read a new entry of your blog. thank you for sharing your joys, your sorrows and being so honest and open. it is a gift that is appreciated beyond belief. keep moving forward in your journey and know that you are an inspiration as much as katie still is. xo

Karla W. said...

Sending hygs your way


Diane Walker said...

Dear Karen,
Your aching heart leaves me breathless. Thank you, for your brave willingness to continue speaking as you journey through this deep, deep valley; it is a gift to us all.


Althea said...

I'm a friend of Diane Walker's and found your site through her blog. Your posts are like letters from that blessed, faraway country of illness and grief I also inhabited after my youngest child was diganosed with a brain tumor. It's been eleven years, and he's still with us, tumor-free, and I thank God every day for that.

The rawness of that time has faded for us, but reading this entry of yours, I can still hear him crying and screaming for me to do something for his pain. My own helplessness was even harder to bear than his crying.

It sounds odd but in some ways I think of that time, when we were stripped down to the absolute essentials, as a treasured journey in love.

Your love shines through in every word of these posts. Thank you.