The chaplain’s voice spoke what she believed could be sweet
surrender words of God’s love. She
painted a word picture suggesting a peaceful place for me to settle but what I
heard were marching orders. Accepting
God’s love mandates sharing God’s love with Joe. I know the Servant’s Song; “I will hold the Christ-light for you in the
night-time of your fear. I will hold my
hand out to you; speak the peace you long to hear.” For
the past few weeks, I had boasted to my care givers; “I won’t let cancer be the
death of me.” Now I knew that if I have
a choice, I want to die while carrying the Christ light to the world,
especially to my husband. The chaplain came
to the end of the guided meditation by saying “that place you find yourself is
your grief.” Though I did not have the
strength to bolt upright in protest, I opened my eyes and testified; “I am not
in my grief. I’m headed to Lansing, Michigan to be with the
man I love.” The chaplain tried her best to help me stay where I am cared for
but the guided meditation back-fired.
I was afraid to leave my medical support team. To visit Joe, I would have to fly in an
airplane and breathe re-circulated cabin air through a mask. I would have to enter a hospital general ward
with my infant immune system. A blood infection complicates my transplant
concerns was a blood infection. A
continuous drip of vancomycin was dispensed from a holster bottle strapped to
my hip connected by tubes and mainlined into my heart by a Hickman double
lumen. Airport security would be
challenged with the fluids I was required to carry aboard. The transplant team considered
the risks and voted “no travel.” But, during
each daily exam I could no longer focus on my condition and pleaded for Joe’s
needs. “Joe doesn’t know his name or where he is. For nine months we have endured cancer and
transplant. While I receive care in big
city hospitals Joe stayed home on 35-square mile Washington Island with our kids
in school. Since my cancer, one doctor prescribed
pills to help Joe sleep; another prescription targeted his depression and a
third drug worked to relieve anxiety, now he is being injected with
tranquillizers,” I explained. Joe saved my life. When people kept telling me that my fatigue
was viral, Joe knew something was wrong with me and kept returning me to the
hospital until I got my diagnosis and treatment for Acute Lymphoblastic
Leukemia. A doctor told me I had only
two days to live if Joe had not returned me to the hospital for another opinion. The transplant team quit trying to stop me,
granted me a forty-eight hour pass and armed me with medical records and
instructions to make it through airport security and connect with a transplant
center in Ann Arbor should my condition require intervention while I was away. The nurse handed me a thermometer and told me
to take readings twice daily. “If you
reach 101 degrees, you are evacuated,” she cautioned. “We expect you back here on Monday morning
for blood tests and clinic exam at 7 a.m.
On short notice, a volunteer from Seattle Cancer Care
Alliance drove me to the Sea TAC Airport.
I was put in a wheel chair for the trip to the gate. I am cancer bald with a carry-on including
antibiotic cylinders and a weight of medications that I do not have the
strength to lift. As I board the plane,
I glance into the cockpit. A Delta
Airlines pilot looks up from his clip board.
“Seattle Cancer Care must trust you guys because they don’t let anyone
out before 100 days. I am at day 57 from
transplant and got a 48 hour pass to see my husband. He is delirious and tied in a hospital
bed. I’m going to need a pair of those
wings you give out for this flight.”
The pilot did not refer me to the stewardess for a plastic
souvenir. He reached to his cap and
unpinned his gold bordered two-tone red triangle centered wings with a star on
top and handed them to me. I held my new
wings and cried as the stewardess helped find my seat. Tears collided in my breathing mask and made
my glasses fog.
My friend Lauri met me at the airport in Detroit and drove
me to Sparrow Hospital in Lansing. I
wore my mask as she helped me find our way to Joe’s room. When we got to his door and looked in she
backed away and left in a hurry. I could understand why she did not want to
stay. Joe lay in a hospital bed. His hands tied, one on each side, feet tied
to the foot of the bed. The white sheet was a wrinkled mass beneath his back
and drape over the edge of the bed onto the floor. Joe’s hips and legs chafed against the dark
rubber mattress but he would not lie still. Writhing did not loosen him. Struggling motion only made his case more
pathetic. Coherent words were
absent. His sounds of restrained
thrashing were an audible cry for help.
“Hi Joe,” I said as I walked through the door. “I’ve come to be with you and I’m so glad to
see you.” He made no sign that he heard
my words but kept moving on the mattress like a lassoed snow angel with no off
switch. I kept saying Joe’s name and
calling to him, perhaps as much to convince myself as him that we knew one
another and ourselves. Joe is the one I
fell in love with while moving rocks that were too big to lift until we used a
canvas sling and worked together. We
grew in love when we adopted six inner city children. Could love overwhelm our circumstance? I know that love quelled my fear. I pulled a chair and sat on the side of his
bed. Touching his head and hand seemed
to make no difference to him as he continued manic movement. I took my bible from my bag and opened it to
Psalm 139. As I read the Psalm a loud, I
called out to Joe with each verse.
“O Lord, thou hast searched Joe and know Joe. Thou knowest Joe downsitting and Joe’s
uprising, thou understandest Joe’s
thought afar off. Thou compassest Joe’s path and Joe’s lying down, and art acquainted with all Joe’s ways.” I started
singing the psalm with a melody that I made up as I went along. A spiritual care provider at the Ignacious
Center in Seattle sang a psalm to me so I knew what to do for Joe. “For there is not a word in Joe’s tongue, but, lo, O Lord, thou
knowest it altogether. Thou hast beset Joe behind and before, and laid thine
hand upon Joe.”
A staff person at the hospital who was assigned to watch Joe
so that he wouldn’t hurt himself had been sitting in a chair in the corner of
the room. As I sang and held Joe’s hand,
she pulled her chair to the other side of Joe’s bed, took her bible from her
back pack, opened to the psalm I was singing, held Joe’s hand and began singing
too. By the time we got to verse 24,
“Search Joe, O God, and know Joe’s heart; try Joe, and know Joe’s
thoughts,” Joe was asleep.
When Joe woke, another aid had taken the place of the one
who shared scripture with us. She was
trying to put a urinal to use for Joe.
With his hands tied, he appeared to be batting her away. She fled the room to file a report that this
patient was combative but I called the charge nurse and explained what I saw.
“Joe wants to do it himself.
Untie his hand and give him the urinal,” I instructed. “We can’t do that,” the nurse explained,
“until we get an order from the doctor.”
I gloved my hand and took the urinal, put it in Joe’s hand and guided
his hand into place.
I could not leave Joe’s room because of my condition but I
did not want to. I knew my husband. He needed an advocate beside him who could
translate. One staff person suggested
that Joe is a candidate for a geriatric psych unit. I kept believing that Joe was recognizable
and needed to be encouraged. “Joe is
always building something, working with tools,” I explained to anyone who would
listen. “We have to give him something
to do.” By the next afternoon, Joe was
untied, sitting in a chair with restraint, still not talking but ready to work
with his hands. I assembled tooth brush,
plastic cup, spittle tray, toothpaste tube, plastic spoon, shoe laces, comb and
empty pill bottle on the tray table. He
spent hours trying to “fix” the table and “build” with the lift mechanism.
When mealtime came, I cleared the construction site on his
tray table and sat with my chair across from him. “Joe and I are on a date,” I told the meal
server. Then I turned to Joe and
recounted the story of our first date together at El Azteco, a Mexican
restaurant we both enjoyed.
Rebecca Falls wrote; “One of the most valuable things we can
do to heal one another is to listen to each other’s stories.” Joe wasn’t talking. I made him listen to his own story while I
told it. I frequently interrupted the
story to remind Joe to drink more fluids.
I repeatedly pressed the cup of ice water and straw into his hand. After taking another long drink, he spoke for
the first time since his hospitalization.
“You’re cute but obnoxious,” he said with no rancor. I laughed.
Joe is in there. This is the Joe
I know, wanting to do things for himself.
The next day was July 4.
My forty-eight hours was nearly over.
Breakfast was delivered to Joe’s room with a small American Flag on a
tooth pick in a bran muffin. Joe’s
family gathered around including his brother who had flown in from Florida and
two grown daughters who lived in the Lansing area. We made a family plan to re-locate Joe to a
family farm for a rest cure with in-home medical care. The Sunday morning doctor making rounds came
in while Joe was sitting in a chair receiving a hair and beard cut from his
daughter Becky. Though Joe couldn’t tell
the doctor what year it was or who was president, the doctor could see that Joe
had improved. Tests confirmed that no
stroke or other discernible illness had caused Joe’s breakdown. The strength of our family support and plan
helped the doctor authorize Joe’s release.
On my way to the airport to catch my flight, I got to accompany Joe to
the farm and see where he would recuperate while I returned to Seattle and my
transplant team.
When my flight took off that evening, I wore the wings that
the pilot had given me. I could see
fireworks out the window, a continent of fireworks from takeoff in Detroit to
landing in Seattle and some in between. Independence
Day will always remind me that love pays the price for our freedom. Loving one another is the spirit of God, the
essential advocate for critical care.
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