Category: End Stage Renal Disease

Bible, Birdsong, Change, Christ's Passion, Chronic illness, End Stage Renal Disease, Faith, Holy Week, Hope, Illness, Introspection, Lent, Mindfulness, Palm Sunday, Prayer, Psalm 23, Resurrection, Soft

On Being Soft

kathymfindley

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Lent for me was quiet this year. I was sick through most of it, and I spent it pretty much alone, except for the sweet presence of my husband. I didn’t write much. I didn’t paint or craft anything. I was just quiet, and as the forty days passed, I was aware at times of being led by still waters.

Still waters was a spiritual and emotional space I discovered after I was diagnosed with end stage renal disease and throughout my lengthy hospital stays in 2014. So today, I am thinking about some life-sustaining words that were a part of my recovery —  the words of the Twenty-third Psalm, my own version of it.

The Lord is my shepherd. I lack nothing. I have around me and within me everything that I need.

The Lord invites me to stop and to lie down in lush, green meadows.
He leads me beside still waters, 
He restores and refreshes my soul.

He guides me along good and safe pathways for his name’s sake. And for my sake.

Even though I walk through the darkest valley, 
the valley of death’s shadow,

I will not be afraid, for you are close beside me.
Your grace and your care comfort me.

You prepare a place for me, even in the presence of my enemies.
You anoint my head with the oil of gladness.
My cup overflows.

Surely your grace and and your love will follow me all the days of my life,
and I will dwell with you forever.

We know the words of this Psalm far too well. We skip past it as a common text we memorized when we were young. We recite it easily. But the Psalm came to life for me during my year-long illness. It was in my heart, and often on my lips, during long, sleepless nights in the hospital. I experienced the Psalm’s comfort as never before.

As we near the beginning of Holy Week, my thoughts are of the resurrection that comes after the passion, for Christ, yes, but also for me. I’m not thinking of “us.” My thoughts tonight are focused on me, how I experienced my illness in 2014 as my own kind of passion, the passion of confusion, grief, worry, fear. I experienced an expansive and disconcerting view of my mortality, and I did not take to the stark reality of it.

I cannot, of course, even begin to compare my passion to the passion of Christ. Yet in some tender way, I experienced suffering. Palm Sunday comes this Sunday, and in Christian churches everywhere, the people of God will celebrate Christ’s “triumphal entry” into Jerusalem. We will raise our palm branches and shout “hosanna,” as well we should. But Palm Sunday moves us abruptly into the week of Christ’s passion, every pain-filled, grace-filled moment of it. We must not skip that part.

But back to my own passion story, the one that happened the year I thought I was going to die. First you must know a bit about me before the illness. I was persistent and stubborn, a fierce advocate for abused women and children. I did not flinch in a courtroom. I did not shrink when I faced-off with an abuser’s defense attorney. I did not cower standing between a woman and her batterer. I searched the nation to find legal advocacy for abused women and their children. I stood my ground against court-ordered child abuse that would consistently place children in the custody of an abusive parent. I railed against a system that refused to protect children. I was hard. 

The illness came and went over the course of a year. I did not die. Resurrection did come to me, in bits and pieces, slowly, but with the certainty of faith. I was no longer hard. I was movable, malleable, able to be blown about with good and gentle, life-giving breezes. We settled into a new home in a new state, and mostly, I embraced it over time. I fed hummingbirds, listened more deliberately for birdsong, and discovered the way of mindfulness.

When I recovered — slowly — from my illness, I remember the feeling of being soft, though I was not sure what that meant for me. Most certainly, God granted me the patience to move into my resurrection, to embrace it in God’s time, and to wait for it gratefully.

My family said that I emerged from my illness with a change in personality. I was quiet, they said, not like me at all. Inside myself, I knew that they were right. I felt the change. I sat in my own quiet for months. And even now I sense a quietness that wraps me softly as if it were a warm, light blanket. It’s a good place for me, this soft, warm, comforting place.

It’s a good place to continue my resurrection, to learn more about what it means to be soft. As it often happens, I stumbled upon this quote as I wrote this piece. I love the thought it expresses. It resonates with my soul.

Be soft. Do not let the world make you hard.
Do not let the pain make you hate.
Do not let the bitterness steal your sweetness.

— Iain Thomas

These days, I am sensing that a kidney transplant is imminent for me. So to go through that process, I will lean even more into my soft side. That will be a good emotional and spiritual space for me. Soft! Soft facing change and fear. Soft facing uncertainty and new, scary medications. Soft facing the hope of a healthy kidney bringing me a new beginning, a resurrection.

May God continue to lead me beside these still waters. It’s a good place for me to greet resurrection.

 

 

 

 

Comfort, End Stage Renal Disease, Friendship, God's presence, Grace, Hospital, Illness, Memories

A Horribly Wonderful Year

kathymfindley
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Art in foreground: “Horribly Wonderful” from The Land of Froud by Brian Froud, 1976.

Celebrating a five-year anniversary can be a fine excuse for a party! Definitely a five-year milestone can offer a chance to revisit and recall memories. My five-year anniversary is tonight, the night a phone call from my doctor ordered me to get to the ER. It was the night we learned that my kidneys had failed, just like that, out of nowhere, no notice. It was the night that end stage kidney disease turned my world upside down. It was the night that was the advent of a full year of hospital stays, biopsies, surgeries, physical and occupational therapy, loads of questions, very few answers and most of all, a very concerned and fatigued husband.

Fred was my rock, as he has always been. He slept next to me in that horrible excuse for a family bed. He kept vigil at the hospital day and night. When I was able to persuade him to go home to get some rest, he answered my phone calls in the middle of the night when I was sleepless, frightened or lonely.

“Are you up?” I would ask.

“I am now!” 

I don’t really think this anniversary calls for a party, but it does call for some reminiscing and remembering. So last night, Fred and I recalled the year I was so ill, that horribly wonderful year. Interestingly, we have two separate and differing sets of memories. He tells me that, most of that year, I was not aware of much, to the point of not even recognizing him. He tells me that I almost died during three separate critical events.

On my end, I remember none of that. I did lose time in that year, with confusion about losing days, even weeks, when I was unresponsive. I endured hundreds of needle sticks, maybe thousands since I am told my veins had collapsed. I received a port for hemodialysis that promptly caused me to nearly die of sepsis. I had a kidney biopsy that developed a painful bleed. I ate terrible food most of the time. I spent a lot of time in therapy learning to walk, write, identify colors and place square blocks in round holes.

Together we remember the love and care of my church, the family that constantly clamored for updates, the handful of good friends that were present, the food that the church brought to us every single week, and the nurses, angels in disguise.

I must say that, even to this day, I miss the sweet nurses that cared for me with great compassion. They were ever-present when I needed help and, during those long nights, they would often come in with a popsicle, sugar-free of course!

A final memory for today’s blog is the soft, fluffy afghan that my dear friend, Rev. Donna Rountree, brought me from her church. The Disciples of Christ church where my friend served as pastor barely knew me. I had preached there once. The congregation prayed for me, over the afghan, during a church service. Then Donna brought the afghan to the hospital, placed it on me, and told me that it was covered with the prayers of the people. What a special gift! What a special grace!

07CC221A-DFBC-4372-8E66-854CA41B0296When I think of that year, my description of it is “horribly wonderful.” Wonderful because, in the worst of times, God breaks in through the grace of a devoted husband, a caring family, an attentive nurse, a gentle phlebotomist, a close friend, a skilled physical therapist, a loving church family. 

So, yes, I took from that horrible year some wonderful memories, and that is what I can celebrate at this five-year milestone. And what’s more, I am here, still on this side of heaven and grateful for better health and life-saving dialysis. Pure grace!

Thanks be to God.

 

 

Change, Discovering, End Stage Renal Disease, Freedom, healing, Illness, Life Journeys, Mindfulness, Rest, Restoration, Self care, Serenity, simple joys

I used to be . . .

kathymfindley

734D4A65-1E4E-4705-A356-D13DF9C7F9B4I used to be . . . 

It’s a phrase I use a lot these days as I fight off the feeling that in retirement, I am useless. It’s not true, of course, that I am useless. But to be honest, I do feel just a little useless these days, at least some of the time. The reason? I used to be a bona fide workaholic. I used to feel important and productive. I used to be busy all the time, night and day. I used to be a perfectionist. I used to have just a bit of obsessive compulsive disorder, and all,of that drove me to a dangerous place.

The problem is that when you love and believe in your work so much, your work can become your whole life. Then things can get unbearable. So I admit that I am a recovering workaholic. I was the person that put in far more than 40 hours a week and never took a day off. But the critical question I had to answer was this: Is my ego at the root of my workaholism?

What was the job that was important enough to push me to work so hard?

I was a minister and a trauma counselor, and I was executive director of Safe Places, a nonprofit organization that served victims of violence. There was always someone in trouble, someone who had been battered by a spouse, someone trying to escape trafficking, a teen that was recovering from rape, a child that had been abused. So the work was never done.

I loved my work. I believed in it with all my heart. But I could not see what others saw. I could not believe the truth spoken by friends and colleagues, that I needed rest, that my work was hurting me. As much as I didn’t want to admit it, I was working myself sick. Circumstances, and maybe the alignment of the stars, brought me to a “come to Jesus” moment that forced me to take stock of my life. I realized I couldn’t do it all. So I took a very slight respite and pulled back from the constant work. In the meantime, as the stars would have it, we lost our federal funding, and suddenly Safe Places was gone. It was over. 

The stress did not end, though, because those that needed help kept calling . . . my phone. I had no staff left and, though I tried, I simply could not continue helping all these hurting people by myself. So I was forced into an unwanted and unplanned rest. 

During this “rest” time, grief and loss took over my psyche. But miraculously, my body began to rest. My pace slowed down. I was becoming mindful of every moment and what was going on in every moment. And in spite of the grief and sadness, my mind and spirit began to heal. What happened next was the shock of a lifetime. As my mind and spirit began to heal, I finally allowed my body to tell me what was going on. My doctors got to the bottom of it and diagnosed me with end stage kidney disease. Before I could even begin to take it all in, I was hospitalized and on dialysis.

I honestly believe I had worked myself to death, or at least nearer to death than I wanted to be. I spent a great deal of 2014 in the hospital trying to stabilize and then working to take my life back. It was hard work learning to write again, to think again, to walk again. But I made it through to a “new normal” that meant for me at least 7 1/2 hours of dialysis every day for the rest of my life, unless, of course, I am able to get a kidney transplant.

The experience of serious illness changed me. After I began to recover, people told me that I was unusually quiet. I didn’t speak much even when others around me were engaged in meaningful conversations. I knew that I was being quiet, quite unlike my normal personality. I was often silent when normally I would have had a great deal to say. I was different, to be sure, but inside myself I was okay. If I had to describe myself I would say that I was soft, broken open and free. And I was content in that place, although my family was concerned about me. I had traveled to a new place in my life, and it was a good place to be.

So here I sit in my “new normal,” tending plants, painting, cooking, writing, reading, and doing all things for pleasure. Most often I am still tempted to dive in and work on something until I am exhausted. But when the tiredness begins to creep up, something in my body remembers. Remembers I need to rest, to embrace stillness, to just “be.”

Still, I fight my old workaholic ways. Sometimes they push me to do things faster and better and longer. Sometimes my old workaholic ways push my button, the button that accuses me of uselessness, as in, “You are not worth much anymore! What are you going to do to change the world?”

Good news! I have finally given myself permission to not change the world. It has been a major shift for me, but I am seeing the truth more clearly, that I never could have changed the world anyway! So most of the time, when I feel myself pushing past my edge, I walk away. I write a blog post or fiddle with my flowers. I cook something fabulous or watch a little Netflix. So what will I do to live happily in these retirement days? I hope that I will keep studying the secret art of rest. I hope that I will continue to learn the grace of mindfulness, just cherishing the moment, every moment.

I used to be a workaholic. Not anymore.

Oh, and one more thing . . . a prayer. Though my faith tradition has always eschewed prayers to Mary, mother of Jesus, many very beautiful and meaningful prayers are prayed to her. I leave you with this one written by Mirabai Starr.

Mother of Consolation, help me to let myself be consoled. 

I hold it all together, Blessed One. 

I have convinced myself that it is up to me to keep the airplane aloft with my own breath, that I am the only one capable of baking bread and scrubbing floors, that it is my responsibility alone to alleviate the sorrow in the heart of every single person I know. 

But I have forgotten how to weep, Tender One. 

Teach me to reach out to the ones I comfort and ask for their comfort. 

Let me feel the tender touch of the Holy One on my cheek when I wake in the night, weary and frightened. 

Help me to be vulnerable and soft now, broken open and free.

— Mirabai Starr