Living on Pause

August 23, 2016

One week ago I had surgery for a total joint replacement on my right knee. I am not yet one of those people who says, “it was the best decision I ever made. I wish I had done it sooner.” Right now I simply follow the doctor’s orders and the exercise regimen of the physical therapist, and trust I will get to those feelings soon. Between the pain, the bruising, the swelling, and the underlying support of effective codeine laced drugs and the weird dreams they provide, this is a time for rest and recovery, for not expecting to accomplish much of anything, and the accompanying frustration for someone who wants their life to be of use. It feels as if I have put my life on “Pause.”

The surgery was elective. I spent over a year trying alternative treatments, building up my core strength, getting shots in the joint, and waiting for insurance approval, with a short detour to recover from a broken foot last February. I scheduled the surgery around significant events this summer--being able to be present and participate in my 50 year High School Reunion, take a vacation in Puerto Vallarta, and attend my daughter’s magical wedding in Hawaii. Each trip had its special joy and I am filled with love and the blessing of great memories with friends and family. I also wanted to have recovery time before resuming a writing class in September. The goal is to have improved mobility, relieve the energy draining constant pain, and develop stamina to take daily walks (with a bit of weight loss thrown in).

Although I chose the surgery and determined its timing, there is that uncomfortable element of giving over control. The patient has the easy part, sleeping soundly once the anesthetic kicks in; it’s the surgeon who needs to be having a good day. I put my trust in the medical community, and continue to do so in my recovery. This is not a time for heavy thinking, or much reading for comprehension, but has become another part of accepting the journey of aging, retirement, and continual self-discovery. While the consistent need for my presence and support in Larry’s health care has reinforced our marriage covenant, it has also placed my sense of self in relation to the world on pause. This time of healing reaffirms an earlier decision, a response to an awareness of my isolation and need for community. 

I am preparing my heart to pick up missing pieces of my identity, to affirm my relationship with a loving community, to offer a ministry of presence. While watching the lined and peace filled faces of those coming to the altar for communion, my heart opened to our common desire; to be known, to be loved, to be nurtured, to be remembered in a family of faith. Soon I was in conversation with Peter Perry, lead pastor at First UMC of Olympia, remarking on the importance of holding dear these faith-filled saints, which surprisingly lead to an offer of a quarter time position, beginning October 1st (knee willing), providing pastoral care. My own surprise in all this has been my lack of doubt that now is a good time to reach outside of the cocoon of retirement, to re-engage in my call to be of service, to offer love, understanding, compassion, and grace to others.

Living on Pause

August 23, 2016

One week ago I had surgery for a total joint replacement on my right knee. I am not yet one of those people who says, “it was the best decision I ever made. I wish I had done it sooner.” Right now I simply follow the doctor’s orders and the exercise regimen of the physical therapist, and trust I will get to those feelings soon. Between the pain, the bruising, the swelling, and the underlying support of effective codeine laced drugs and the weird dreams they provide, this is a time for rest and recovery, for not expecting to accomplish much of anything, and the accompanying frustration for someone who wants their life to be of use. It feels as if I have put my life on “Pause.”

The surgery was elective. I spent over a year trying alternative treatments, building up my core strength, getting shots in the joint, and waiting for insurance approval, with a short detour to recover from a broken foot last February. I scheduled the surgery around significant events this summer--being able to be present and participate in my 50 year High School Reunion, take a vacation in Puerto Vallarta, and attend my daughter’s magical wedding in Hawaii. Each trip had its special joy and I am filled with love and the blessing of great memories with friends and family. I also wanted to have recovery time before resuming a writing class in September. The goal is to have improved mobility, relieve the energy draining constant pain, and develop stamina to take daily walks (with a bit of weight loss thrown in).

Although I chose the surgery and determined its timing, there is that uncomfortable element of giving over control. The patient has the easy part, sleeping soundly once the anesthetic kicks in; it’s the surgeon who needs to be having a good day. I put my trust in the medical community, and continue to do so in my recovery. This is not a time for heavy thinking, or much reading for comprehension, but has become another part of accepting the journey of aging, retirement, and continual self-discovery. While the consistent need for my presence and support in Larry’s health care has reinforced our marriage covenant, it has also placed my sense of self in relation to the world on pause. This time of healing reaffirms an earlier decision, a response to an awareness of my isolation and need for community. 

I am preparing my heart to pick up missing pieces of my identity, to affirm my relationship with a loving community, to offer a ministry of presence. While watching the lined and peace filled faces of those coming to the altar for communion, my heart opened to our common desire; to be known, to be loved, to be nurtured, to be remembered in a family of faith. Soon I was in conversation with Peter Perry, lead pastor at First UMC of Olympia, remarking on the importance of holding dear these faith-filled saints, which surprisingly lead to an offer of a quarter time position, beginning October 1st (knee willing), providing pastoral care. My own surprise in all this has been my lack of doubt that now is a good time to reach outside of the cocoon of retirement, to re-engage in my call to be of service, to offer love, understanding, compassion, and grace to others.

Journaling Joy

In the dark of winter, aware of the approaching two year anniversary of Larry’s kidney failure, I decided that one antidote to the anxiety of care giving and waiting and not having much certainty about our future, would be to record my joys. I trusted that when I took a moment to examine the small things that make up each day, I would find joy. Somedays it has been more challenging than others. On July 22, the 204th day of 2016, I have only missed one day recording an experience or an observation that brought me joy. 

In the last week, my joys and thus, my moments of gratitude, have included the taste of vine ripened tomatoes off my own vine; the grandeur, beauty, and mystery of Haleakala, “the house of the sun,” on the island of Maui; the beauty of my neighbor’s flowers; rainbows; and a good night’s sleep in my own bed. Often it has been the laughter and love that comes to me through my grandchildren, the gifts that my daughters, step son, and daughters-in-law and son-in-law bring to my life. I celebrate their integrity, and record the names of others who exhibit kindness, generosity, and compassion. Quilting, reading, writing; friendships, old and new; the natural world; the color blue: all bring me joy. When I pause, I recognize that my life is filled with privilege and abundant blessings. The challenge is to remember, to value the smallest of things.

The smallest of things....

My guess is that the PD nurse (PD stands for peritoneal dialysis, and there is a nursing specialty that focuses on home dialysis patients) on call on Maui considered that she was only doing her job when she answered her phone (in the shower) on Wednesday, July 6th. We arrived at our vacation destination to find that the seventeen boxes of solution that Larry would need for the next ten days had not been delivered. Our twelve hours of travel meant he was overdue for “an exchange” (a manual dialysis treatment), and there would be nothing for the machine overnight. We had no way of knowing when or if it was to be delivered. 

Her name was Shari, and we never actually met her face to face. After drying off, she dressed and went to the Dialysis Center, gathered enough supplies for Larry for three days, gave us directions, worried for us about the hour it would take us to get there, and had everything loaded on a cart ready for us to get it to the car. She checked on us the next two days, and ran interference with the delivery company. We weren’t on their schedule, but they might get to us on Friday, the day of the wedding. That was unacceptable to us, and to her. The boxes came Thursday night.

It may have been her job, but Shari was kind, considerate, and compassionate. She brought joy to our day.

Tethered

Independence Day has an odd ring this year. Reflecting on a life of interdependence.

We are tethered to a machine. It is called the Cycler. Overnight, for ten hours, with plastic tubing from machine to toilet, plastic tubing from stomach port to machine. Bodily waste drained out, peritoneal cavity filled with fluid, left to dwell for ninety minutes, drained out, refilled, four times, machine sometimes buzzing, beeping, clicking, always humming. Larry cannot walk any farther than fifteen feet. Enough to reach the bathroom, not enough to leave the room. A machine to do what healthy kidneys do. Dialysis. It is all miracle and mystery. The process keeps him alive. The cycler and two boxes of solution accompany us for any overnight away from home. Trips require planning, fifteen boxes are sent ahead, delivered, and waiting.

We are tethered to clocks and calendars and record keeping. To bed by 9, awake at 7:00. Home each day by four pm for another exchange of fluids. Monitoring blood pressure, heart rate, taking temperature, recording numbers.  Inventorying supplies, reordering once a month, sterile gauze, face masks, antiseptic solution, mini-caps to close the port, antibiotic for changing the dressing, hand sanitizer, bottles of liquid soap. Placing the order, planning to be home on delivery day, between the hours of 10 and 12. Two monthly appointments for lab work, to receive a shot, stock up on protein supplement, to see the doctor and nutritionist and social worker and nurse. We are tethered to the medical community. They help him stay alive.

We are tethered to each other. No space for independence. Learning interdependence. Working to stay cheerful and optimistic. Tired, always tired. Waiting for the call that would change everything. Tethered to our phones. Always tethered.

Motivated for Clarity

(I have been on an unexpected journey for two and one half years. Acknowledging the "sickness" clause of "in sickness and in health." Writing a lot. Clearing notions of the givens of blessedness.)

February 2014

 The phone rings. The automated voice announces, “Tacoma General Hospital.” I am as wide awake as my Ambien induced sleep allows. I roll over the empty side of the bed to reach the phone, heart racing, tears starting.

“Hello?”

“I’m in the damn hospital and I don’t know what’s happening!”

At least it's Larry's voice. He has his sense of humor. I want to laugh. Or is he not joking?

“I know dear, I left you there.”

“People keep coming into my room. I don’t know what they want.”

My brain fog lifts as I realize, of course someone is in his room. 

Everything from the day before floods into my consciousness. Has it only been a day?  I am back at his bedside, hearing the noises in the hall throughout the night. The insistent dinging of call buttons. The hushed voices from the nurses’ station outside the door. 

I watch each member of the medical team in gown and face mask as they cross the thresh hold, check his vital signs, bring some drugs. Given a pillow and blanket so that I could rest, I am not sleeping, but  keeping vigil through the night. I listen to his breathing, watch his chest rise and fall. I stare at the numbers on the monitor, heart rate, blood pressure, oxygen levels. 

The sun rises over Mt Rainier. I stay in place until the doctor comes for morning rounds. I need a shower. I hurry back. A day passes. He is too weak to lift his arms or sit up or get out of bed. I help him eat. He is disoriented. Delusional. I see the phone on a shelf behind his bed. I am the one who answers it when it rings. I left when he started snoring. It had been forty eight hours since my head had been on the pillow.

Gently I say, “Honey, there must be someone there now. Can you give them the phone?”

“Hello. This is the night nurse. We need to start a transfusion. I need your permission.”

“Do you need me to come? I can be there in ten minutes.”

“No. Everything is okay. I needed to verify his identity.”

I glance at the clock. Three in the morning. I lie down, thinking I might catch more sleep, but my mind rewinds to the beginning. Thirty six hours earlier, leaving work to get him to the doctor’s office.  Grabbing a wheelchair to get him from the car to Urgent Care. Temperature 92 degrees. Blood pressure 80 over 40. Watching as he is wheeled out the back entrance to a waiting  ambulance. Stopping at my office to post a note on the door: “Sorry, I have to miss the meeting. Larry in the hospital.” 

Parking in the snowy parking lot, entering the emergency room. Being escorted to the exam room. Everyone busy with a sense of urgency. He seems incoherent, yet introduces me to his young, redheaded nurse: “This is Meghan. She’s Irish. She’s hot.” I laugh. She and I are both embarrassed.

I’m asked to wait. I sit alone in the waiting room. Minutes seem like hours. A friend comes from the meeting to ask what is happening. I can’t say. I don’t know. She waits with me. There is nothing more she can do. “Call me, day or night,” she says when she leaves. More time drags by. I ask to see him. Now there are IV fluids entering his veins. Oxygen delivered through his nose. He is wrapped in a bubble wrap blanket of warm air. He looks up at me. He says, “I want you to know I have had a really good life.” 

He thinks he is dying. I think so too. 

I can’t form the question. I ask instead if they know what is wrong. The doctor tells me he’s in renal failure. There is some blood loss. He’s dehydrated. If he needs dialysis they can’t do it here. There is a room waiting for him in a larger hospital across town. I’m confused. “Why dialysis?” I ask. “His kidneys have shut down,” they tell me.

Another ambulance. Again, I follow in my car. I think I’m hungry. I stop at McDonalds. I never go to McDonalds. I order something I cannot eat. I carry my french fries into the emergency room. I drop them in the trash when they tell me they have taken him to Room 812. The elevator opens on the Critical Care Unit.  I stand in the hallway, waiting. Nurses. Orderlies. Everyone busy. More lines, more bags, more fluids in. No urine out. Definitely renal failure. Why is he losing blood?  No one can tell me. "We have to order some tests," they say. 

Finally it’s just us. I take his hand. I lean to kiss his lips.

“I love you.”

“I love you, too.”

That is enough for now. I curl up in the window seat, briefly close my eyes, but I need to watch the monitor, watch the door, wait for the doctor. I need to be there when she comes. I see the sunrise. The day stretches before us without answers, only questions, tests, procedures, guesses, nurses, calling family, calling friends. Telling what I know, what I don’t know.

My pillow is wet from my tears. I have lain here for two hours. It feels like days. I haven’t really slept.  It’s time to get up. Get dressed. Get myself together. Make some phone calls. Leave some messages. I won’t be in to work. I need to be at the hospital. 

I will need to be there fourteen identical endless days before I no longer sleep alone. It is the ending of knowing. The beginning of waiting.

Introducing End of Knowing

Eternal questions. 

No answer absolute.

Only me. 
Only you. 
Only now.