I love this acronym because it shows how emotions can collide with rational thinking. It also shows that even when we are being rational, we sometimes say the wrong thing. As a writer, I’m aware of the power of words—how they can persuade, or repel, how they can win friends, or lose them. I’ve done them all! When I get too emotional, I’m sure to say the wrong thing. Experience has taught me to use this acronym to weigh carefully what comes out of my mouth. To ask myself if what I say is necessary, or am I just spouting off, releasing steam like Old Faithful in Yellowstone? Am I being honest, or are my words brutal and tactless? Do I care how my words might affect the other person? Am I so emotional, in the moment, that my words might appear unintelligible? And most of all, do my words demonstrate kindness towards the other person?
Of all those terms, kindness for me is the most far-reaching and important. No matter what happens to us in our lives, no matter how deeply we are humbled by our circumstances and shortcomings, if we can remain kind in the face of everything, then that says a lot about our character.
from Sharing Experience, Strength and Hope, June 16:
“I remember feeling my anger and resentment lessen at my first meeting when I learned that addiction is a disease, like cancer or diabetes. I didn’t cause it, I can’t control it and I can’t cure it.
Today I am grateful that I am married to an addict because I have been given the opportunity to explore my spiritual nature and move out of my comfort zones. I have taken a good look at who I am, what I want and where I’m going. I am facing my past, my faults and my fears. I am becoming a better person, a happier person, and a more serene person. I am slowly but surely learning not to suppress my emotions and fears, but to release them and grow.”
‘No longer forward nor behind I look in hope or fear. But, grateful, take the good I find, the best of now and here.’ John Greenleaf Whittier
Just for today, I will pay attention to my blessings. I have so much to be grateful for, and I guard against complacency. It can all be snatched away in a heartbeat, so I take nothing for granted. This is a good way to live, savoring every good moment.
At that last Zoom meeting with Dr. Malakoti, I complained that in all these months of tests and speculation I haven’t yet had a physical examination. I guess I got through to her because the scheduler at Fred Hutch called me the next day and made an appointment for just that, before we would decide on another lymph node biopsy. That made wonderful sense to me, and all of a sudden I felt more secure, like we weren’t just throwing darts in the air. An exam would tell Dr. Malakoti a great deal about the state of my health. And it also taught me the value of advocating for myself.
So Gene and I drove down to Fred Hutch for a noon appointment and anxiously waited to see my doctor. She felt around my body for swollen lymph nodes and measured the ones she felt in my groin on both sides.
Dr. Malakoti confirmed, “Yes, we will need to get you into surgery for this biopsy as soon as possible.”
“How soon?” I asked.
“Probably within twenty-four to forty-eight hours,” she assured me.
I waited, not too patiently, for a call from the scheduler. Nothing. I called them twice a day. Nothing. A week of waiting. Nothing.
So I decided to go down to Seattle because my son needed me to babysit for his kids. His anniversary trip to Belize with his wife was more important to me than waiting for a phone call that wasn’t coming. Life goes on, doesn’t it?
Dr. Malakoti did take the time to message me about the surgeons’ decision to biopsy the right node instead of the left. And she emphasized that they haven’t found any cancer in my tests “at least, not at this time.”
Those are ominous words. What do you mean, “not at this time…?” Well, I’ve made it to age 76 without any cancer or its symptoms. Now I have symptoms. Now they are subjecting me to invasive tests. Now they tell me, “You don’t have cancer at this time.” So what does that mean? That cancer is a slow-moving train that may or may not collide with me someday? Everyone in the world can say that, can’t they? From the day they are born. How am I any different from other people? I have some hallmark symptoms of blood cancer. So they are treating me seriously.
I guess, since no one in the medical community will talk straight with me, I will have to wait for a definitive sighting of lymphoma, or lack of it, in my second biopsy.
I asked Dr. Malakoti directly when she examined me: “What are you looking for? What do you suspect? Could I have lymphoma?”
She moved around the room to get something, but did not answer my question. Maybe any form of speculation is strictly forbidden at this point. Maybe they will level with me when they have an answer.
So I return to patience and acceptance of what I cannot change.
“Oh I hate to write, Marilea. It’s like pulling teeth. And I’m afraid of what I might find.”
“Bingo, girlfriend, that’s the whole point. Discovery. I’ve been writing my heart out for more than a decade, and what I’ve learned about myself in the process could fill a book. In fact, it did. It filled three books and countless essays.”
“Yeah, but you’re a good writer and I’m just a hack.”
“Whoa! There’s all that judgment we keep heaping on ourselves. It doesn’t matter if you write well or not. The work is putting your words on paper. How they are received is also not important. What you do with those words is not important. Just get them out of you and examine what’s on the page. Maybe you will learn something new.”
So my friend and I went back and forth about the value of writing. She said she’d get back to me.
But I learned many things about myself from reading my early writing. I learned that I was extremely angry and judgmental toward my daughter. How could she be behaving so badly? And then I wrote about my own youth and realized that we were mirror images of each other.
Discovery.
I learned that I needed to be in the rooms as much as my daughter, if not more, because there were two of us who were sick. And that was the beginning of my healing. My words on the page stood out like red flags everywhere. That’s when I stopped being so angry or judgmental. If I could forgive myself for my sick soul and the behavior it reflected, I could certainly forgive my daughter. And that smoothed the way for her to come back to her family when she was ready.
Our lives rarely enjoy Hollywood endings. My story has not ended well for my daughter. But my writing has helped me cope with that too. The two of us might have fallen down the rabbit hole and never returned. But the catharsis I experienced from being honest on the page has freed me to look beyond my daughter and see my life in perspective. I have a wonderful life, surrounded by people I love. And though I miss my daughter and feel the loss of her every day, I can transform my grief into something positive: joy and gratitude for all that’s left in my life. This book, Opening Our Hearts, Transforming our Losses, is a great resource for those who don’t know what to do with their grief. Take a look.
Time flies. It’s March now, a long time to not know what’s wrong with me. But the medical community operates, sometimes, at a snail’s pace.
Gene and I drove back to Fred Hutch in Seattle for my second PET scan. We had another dinner out and stayed at the same hotel so we would be close by for the 8:15 am appointment. I needled my doctor to secure two (2) Ambien for me from the pharmacy. I am extremely claustrophobic, which is the principle reason for the prescription. They’re not really “coddling” me. They just want to avoid a disaster in the PET machine.
The nurse injected the radioactive liquid into a prominent vein and waited for it to circulate in my system. It usually takes an hour, but I was asleep and didn’t notice. They walked me into the machine and then walked me out. Gene drove me home where I had another long lunch and another long nap.
Today is March 18. I had a Zoom meeting with my doctor at Fred Hutch. What are my hopes? That they found no areas of concern and refer me back to my original hematologist, Dr. Julia at Providence oncology, and let her come up with an explanation. You can’t fault the doctors at Fred Hutch for thoroughness. They seem to have pulled out all the stops.
But I’m getting ahead of myself. This is an example of my “future-tripping,” which I’ve done too much of. Enjoy every moment I have. Today is sunny and 70 degrees. I will indulge in my “spiritual” weeding (oh yes, weeding is a spiritual exercise for me!) and be grateful for the sunshine.
Dr. Malakoti, Dr. Poh’s P.A., addressed me on Zoom and said that the second PET scan showed lots of lymph node involvement. So they want to do another biopsy of another node in my groin, near the last one they removed. It’s the fastest way to rule out lymphoma. Another one? The queen (lately I’ve been demoted to princess) of silver linings sees this added surgery not only as a probable end to all our uncertainty but also a chance to learn from my mistake the last time. After the surgery, go home and stay there for two weeks. Suspend all activities.
Waiting for the scheduler to call me for the exam with my doctor, my negative side internally whines that, since I live two hours away from Fred Hutch, going back and forth on Route 5 will be another weekly hassle.
“Oh Carter, I’m so sick of the Route 5 parking lot. Now I have several more trips down to Seattle to endure.”
But my son rescues me from myself momentarily:
“Endure? How about you put a brighter face on it? Instead of dreading the traffic, the pain of surgery and the waiting for results, why don’t you and Gene come down to Seattle for two nights and spend time seeing your grandchildren and having some fun?”
Recovery in the Program, time and the perspective it brings us, has given me a lot of new information. My own recovery has also graced me with a healthy amount of humility. I used to confuse humility with humiliation. I used to think that admitting my faults would produce shame in me and threaten my self-worth. But in recent years I have a different understanding of this word.
Having taken the Fourth Step (“Made a searching and fearless moral inventory of ourselves”), and later the Seventh Step (“Humbly asked Him to remove our shortcomings”), I began to see myself in a healthier light. I began to see myself in relation to my higher power. I am just a speck in the universe, no more, no less. This need to stay right-sized keeps me out of trouble. I’ve been playing God for much of my life. It doesn’t matter anymore why; what matters now is that I remain ever mindful of the amount of power I have over others and stop trying to play God with them. They have their own Higher Power, and I’m not It!
The limbo I’ve been in for half a year has been a challenging test for me. A test of dealing with the gray areas in life—the ambiguities— where we want answers to a problem but don’t get them, and we find ourselves at the mercy of our coping abilities.
There was a time when I would fold in like an accordion at the first sign of frustration or depression. If I was unhappy about anything, I tended to run away. Just retreated into various forms of self-punishment that provided numbness for a time. But that was another woman.
I’m glad I’ve evolved into someone stronger. Personal heartache has followed me much of my life, but no better or worse than anyone else’s. Yet I lacked the tools to deal with it effectively. Mired in victimhood and self-flagellation, my self-absorption buried me and isolated me from being the best person I could be. Able now to see my life through a different lens, recognizing what a privileged and fascinating life I’ve led, has opened my eyes and filled me with a sense of long-overdue gratitude.
Dr. Christina Poh met with us on Zoom a week after my second bone marrow biopsy. Gene and I sat side by side on the sofa, holding hands. No matter what she told us, we knew that we had each other. That, in itself, has been a tremendous blessing. I am so fortunate to see the silver linings manifesting themselves everywhere. There’s nothing like what I’ve been going through to sear into my heart what matters most in life. And now I have time to live that learned wisdom.
Her first words to me were, “Well, Marilea, it’s a fluid situation.”
“What does that mean, Dr. Poh?”
“It means that we don’t see cancer in any of your tests right now. Not in the two bone marrow biopsies, and not in the lymph node biopsy, reviewed by NIH, where they found nothing. We’d like to do another PET scan to see if there’s any change from the one you had in November. Maybe those results will give us some new information that will explain your symptoms and give us something more to work with. But for now—today—you are cancer-free and we can be glad of that.”
“God, what a relief!”
“Well, we’re not going to say you have cancer when we don’t see it. Chemotherapy is poison, and we can’t justify infusing you with it at this point.”
A fluid situation…meaning, yes, it could change. The earlier diagnosis of L-HES, for example, can progress to leukemia or lymphoma without proper treatment. So, am I home free? Maybe and maybe not. But I FEEL wonderful, no lack of appetite or weight loss. If ever there was a time to live in the moment, it’s right now.
The aborigines in Australia operate on two time zones: now and not now. I’ll take “now” for my happy reality and let “not now” reveal itself another day.
“All my children had finished college and had spread their wings. Caroline lived in San Francisco, and Carter was about to leave for Austin to get his master’s. But Annie was still living in the area, utterly transformed by the disease of substance use disorder. I bore witness, close-up, to unbelievable changes in her character, shocking new behaviors, as I experienced a mother’s bewildering sadness and grief. I felt sometimes, like going to bed and staying there.
Exploding into my living room a year later with a pit bull and an overflowing suitcase, her eyes were blood red as she pleaded with me.
‘Mom, help me. I can’t do this anymore!’
Of course I’ll help you, my darling girl. We’ll arrange for another rehab, and I know it will work this time.
‘Annalise,’ I told her without giving her a choice, ‘I’m taking you to Arlington Hospital. They can help you there. Where is your car? How did you get here?’
‘My car was stolen. I got a ride here,’ she said, looking toward the door, wild-eyed. ‘Please get me out of here. I need help.’
‘Honey, it’ll be okay,’ I offered. ‘I’m sure they’ll give you something to calm you in the hospital.’
Thank God Gene was living with me then and happened to be home.
‘Gene,” I was trembling, ‘you need to take Dante to the animal shelter in Alexandria. I’m sure they’ll find a home for him.’ I wasn’t sure of that at all, but it helped Annie say goodbye to her dog.
I got in the car with her and drove the short distance away, illegally parking right at the entrance. The staff checked her in to the psych ward. As I turned to leave, Annie suddenly approached me, panicked. Of course she was afraid. She was putting herself in a situation where she would have to stop abusing drugs as long as she was there.
‘Annie,’ warmly offering her a hug, ‘Gene and I will visit you every day. And Dad and Paula will come over from Georgetown, too. Just try to get better. We all love and miss you so much.’
She turned away from me and followed the nurse. The door to the psych ward slammed behind her. It only opened in one direction. She was locked in.
And I was locked out. I still couldn’t accept the fact that Annie was a runaway train—and I couldn’t stop the wreckage. It was October, 2007, my favorite time of year. But I was blind to the autumn beauty all around me. The world appeared bleak and colorless.
After I got home, I repeated Psalm 23 over and over again: ‘The Lord is my shepherd, I shall not want…Yea, though I walk through the valley of the shadow of death, I will fear no evil…’
I was praying as hard as I could. But not hard enough.
Total Wine wasn’t far from my condo. I popped in there for an economy-size bottle of Chardonnay, not even waiting for the change. The twist-off cap let me start right there in the parking lot. Once again I felt rattled and sick with worry. Alcohol was how I was finding my courage more and more in those days. The courage to watch my daughter fall into the rabbit hole of substance use disorder and be helpless to stop her.
Mirror, mirror…I was following her down that hole.
By the time Gene returned from taking Annie’s dog to the shelter, I’d finished about half of the bottle, was terribly drunk, dizzy, and sprawled on the sofa, wailing out loud.
‘I’ll never do this again, make me promise! This is the last time!’
I’ll never forget a friend I had years ago. She was the youngest of three girls in her family. The middle sister had suffered from cancer years before and had died. My friend was ten when her sister died at age fourteen. But it wasn’t the death that traumatized Jillian so much. It was the years of care, heartbreak and obsession with saving her dying child that her mother endured—to the exclusion of her other two girls—that turned Jillian into an angry, rebellious teenager. She did not get her share of mother love, she felt, and to this day she has not forgiven her mother. I should have remembered that story while I was obsessing over my daughter.
I have since made amends to my other children and family members for allowing my daughter’s illness to take up so much emotional energy in my life. And they have forgiven me. It’s so easy for a loving mother to become enmeshed in the life of a troubled child. But I need to remember that there are other people in my life, and I will try to keep a healthy perspective and a sense of balance. For them. Because they matter too.
Since my first bone marrow biopsy back in October, I’ve become more pensive than usual. Just taking it all in. I’ve never been seriously ill and now, seemingly out of the blue, I have a blood disorder. There’s no precedent in my family. This past year I’ve had to say goodbye to several friends, all of whom died from cancer. I felt sad to say goodbye to them, but it never occurred to me that I would be joining them one day.
So yes, regardless of what I may have, I have been thinking about death and what it would mean to me. Elisabeth Kübler-Ross describes in detail the various stages of coming to terms with death. There’s denial, anger, bargaining, depression and, finally, acceptance. The amazing thing is that I’m in acceptance now.
“Gene, I’m not afraid to die. I’ve lived such a rich and full life. How many people can say that?”
“Not many. Good for you, Babe. It’s the faith we’ve learned in our recovery rooms that will sustain us through this. Things are happening according to God’s plan. When we accept that without resistance, getting through it is so much easier.”
The fact is, we are all going to die sometime. And we don’t usually get to choose how. But if that’s what’s waiting for me, I feel so lucky to stare it in the face and prepare. Which I have gratefully done. My estate needed to be updated for one thing. I want the most important people in my life to be well taken care of.
At this point, I’m more concerned about my loved ones than I am about me. Whatever is creating havoc in my body will continue to do so for now. But grief is for the living. My family, close friends and I are on a jet which is in danger of crashing. I want to do what I can to ensure a smooth a landing for them.
This place where I am—this space between living and dying—can be thought of as an enormous blessing. I can use the time for maximum benefit. And what a luxury, I feel so lucky. The prospect of dying has given me new and larger perspectives on the art of living, the art of dying, and the art of forgiveness. It’s such a relief not to be mired in pettiness and all the emotions that make us smaller than we want to be.
To convert our energy instead into loving can make us so much bigger than we were before.
For now, though, there’s still the waiting. And when the diagnosis comes, I’ll accept it. I’ll do what I can to get healthier. And then relax and let God do His work through me. Maybe I’ll get to live a lot longer. And maybe not. But whatever His plan is, I hope I will die as gracefully as I’ve tried to live, with deep gratitude in my heart for all I’ve been given.
