A movie came out a few years ago, “Drive,” and what I remember about it is the background song by Riz Ortolani. I love the words and the meaning behind them.
I determined to continue being a squeaky wheel. The secretary I called daily told me to pay attention, instead, to my garden. Yup, she really said that. Then she stopped answering my calls. So I messaged Dr. Malakoti and asked what the two-month delay since my last PET scan was about. I told her I was getting nervous because I’ve had symptoms for eight months without a diagnosis. A week later I got a call from the surgical suite at University of Washington.
“Hi Marilea. I’m calling from Dr. Kim’s office at UW. He wants to see you right away, tomorrow if possible at 1:00 to schedule your surgery. Can you make it?”
“Can I make it? With bells on. I’ll be there, and thank you!”
So Gene and I raced down to Seattle to meet my surgeon. He was very nice, and when I gave him the timeline of my symptoms, he looked alarmed.
“How soon can you get me in for surgery?”
“By Friday or next week at the latest. I’ll meet with my team and put you in at the head of the line. This qualifies as an emergency and we want to see what’s going on right away.”
“Oh, thank goodness! And how soon will it take for pathology to get back to you?”
“Three to five days. My nurse will come in to talk about preop procedures for you, and my secretary will call you to give you a surgical date.
And just like that I’m all set up for my second excisional biopsy with a promised diagnosis within a week thereafter. I’ve been living in limbo for so long that I’m not sure how I feel. With a definitive diagnosis (hopefully) comes the acceptance I crow so loudly about. We’ll see if I can manage it.
The biopsy went well. And I behaved myself: no activity for two weeks.
Which I did. Just in time to get the news that I do, in fact, have lymphoma.
I’ve kind of known this all along. Arrogant? No, more like intuitive. My symptoms are glaring—and now add fatigue to the mix—so I’ve always known I was very sick with something. But the night sweats aren’t “exotic” anymore. They’re just annoying, and I would like them to end. I’m glad to have a diagnosis so that some form of treatment can begin.
This story in nine parts has been my attempt to articulate my feelings, a healthy practice. My playing “Dr. Google” may or may not have been helpful. I have found no one in the medical community, including Dr. Julia, to discuss my case frankly with me. So all my research has been an attempt to get out in front of it all, prepare myself for my reality, and feel somewhat in control of a process that isn’t really mine to control. As a friend of mine told me,
“We are of an age when the fates will play their cards.”
Many people are not strong enough to battle the terrible force of substance use disorder on their own. Application of the Twelve Steps had proven successful over and over again since they were put together by a couple of alcoholics and their friends back in the late 1930’s. Substance abusers need help; some say they need spiritual help. Our society is full of naysayers—skeptics who eschew these programs that are found in every major city across the country, and in big cities, in many of the churches, meeting three or four times a day. There’s a reason for the popularity of Twelve-Step programs: they work for many people. So I promised myself I would try harder now. My daughter was worth it. My daughter was worth it?
There is no one place on this journey to pinpoint where I discovered that I was worth it. I knew what a flawed human being I was. I was aware of my mistakes along the way—big ones and little ones.
But as I was starting to embrace the principles found in these Twelve Steps I was reacquainting myself over and over again with my own humanity and feeling my self-worth solidify with roots into the earth. None of this growth in me would have occurred if my daughter’s illness hadn’t pushed me onto this path. And I would always—still—reckon with the survivor guilt that has challenged my right to be happy while my daughter still struggles with this cruel disease.
There are many who view Twelve-Step groups as cultish and unattractive. There’s such a powerful stigma in our society against substance use disorder in all its forms that, I suppose, families of substance abusers suffer from guilt by association. Early on in my recovery my sister once said that it must be nice to have “those people” to talk to. But as she’s watched me grow and change these past few years I think she’s developed a healthy respect for the Program.
To this day, though, she has never discussed with me the dark side of our father, the alcoholic. Maybe she never saw his dark side, as I did. To her, he was the best father in the world, and I have no need to invade that sacred place where she holds him in her heart. In fact, I agree with her. He was a very loving man who passed on many gifts to his children and grandchildren. Yes, he was sick, and he died too young because of it. But just as I have forgiven my mother for any ways she may have hurt me so have I lovingly accepted my father’s illness. And in learning to forgive my parents and others who have wounded me in my life, it has become easier for me to forgive myself for my own shortcomings and the part they played in hurting my own children.
I, being a substance abuser, a daughter of one and a parent of one, have found myself quite at home among these seekers of peace and serenity. I’ve been in the right place for twenty-three years now, and I cannot begin to tell you the gratitude I feel for the wisdom in this simple program that has helped me to look forward to the sun coming up every day—and to embrace my life in its entirety.
“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.
“’When people make changes in their lives in a certain area, they may start by changing the way they talk about that subject, how they act about it, their attitude toward it, or an underlying decision concerning it.’ ~Jean Illsley Clark
Acting “as if” is powerful. It leads the way to a changed attitude, a changed woman…Each positive change we make builds our self-esteem. Realizing that through our own actions we are becoming the kind of women we admire gives us the strength, in fact, encourages the excitement in us that’s needed to keep changing…Each gain makes the next one easier to attempt.
I will accept an opportunity today to act as if I can handle a situation I used to run from.”
I think, as any of us grow older but not always wiser, that it becomes easy to descend into a passive state of “Oh well, what’s the use? I’ve tried everything I can think of to make this problem go away, and nothing works. So I guess I’m stuck with it.”
I’ve certainly been there, but eventually I got lucky. I got so tired of my misery that I became willing to try something else. That was the key. Willingness to change and do something else. It worked.
Now I’m happy, joyous and free of the demons and obsession that were destroying my life. I had to work hard for this. But it was time well-spent in recovery.
I’m in two 12-step programs, and they all have one thing in common: helping those of us who suffer to recognize our own part in our misery, to work through all those demons, and hopefully learn to be accountable and free of guilt. The freedom that follows is indescribable. And though I still carry the sorrows that brought me to the rooms, I’ve learned to view them through a new and different lens.
Life can be a glorious adventure. I’m so grateful for my recovery.
“’Birds sing after a storm; why shouldn’t people feel as free to delight in whatever remains to them?’ ~Rose Fitzgerald Kennedy
We choose the lives we lead. We choose sadness or happiness; success or failure; dread or excited anticipation. Whether or not we are conscious of our choices, we are making them every moment.
Accepting full responsibility for our actions is one of the requirements of maturity. Not always the easiest thing to do, but necessary to our further development. An unexpected benefit of accepting our responsibility is that it heightens our awareness of personal power. Our wellbeing is within our power. Happiness is within our power. Our attitude about any condition, present or future, is within our power, if we take it.
Life is “doing unto us” only what we allow. And it will favor us with whatever we choose. If we look for excitement, we’ll find it. We can search out the positive in any experience. All situations present seeds of new understanding, if we are open to them. Our response to the events around us determines whatever meaning life offers. We are in control of our outlook. And our outlook decides our future.
The day is mine, fully, to delight in—or to dread. The direction is always mine.”
We all go through tough times, often wondering how we will endure the unendurable. Watching our children go down paths we would never choose for them, and being powerless to stop it; or many of us burying our children, and forced to face the closure that comes with that. How do we bear it? How do we go on? I put my faith in God, and know—without a doubt—that things are happening for a reason, and that much beauty is often born out of loss. I’m so grateful to have the eyes and heart to see what has been left to me. My recovery is a miracle. God is good!
“’Experience is a good teacher, but she sends in terrific bills.’ ~Minna Antrim
Our longing for only life’s joys is human—also folly. Joy would become insipid if it were our steady diet. Joyful times serve us well as respites from the trying situations that push our growth and development as women…Joy and woe are analogous to the ebb and flow of the ocean tide. They are natural rhythms. And we are mellowed by their presence when we accept them as necessary to our very existence.”
Recovery has mellowed me. My growing faith has taken the sting out of the loss of my daughter. I was angry, self-destructive, heartbroken, and guilt-ridden…the list goes on. But that path was leading me nowhere.
One day I woke up with a bright light shining in my face. It was warm and melted away my rough, icy edges. A voice was calling to me; I think it was one of my grandchildren and she said, “I’m right here now, Bela. Look at me! See, I’m wearing the dress you gave me. Please come to my recital!”
I went to her recital and many others afterwards. And I learned that my mother’s heart could be filled up over and over again by these children and so many others. The heart has a great capacity to renew itself and heal. Acceptance of that which I cannot change has helped. And listening to the voices of others—long silenced in me—ring loud and true now as hope for the future.
“One of the gifts I have received from Al-Anon is learning how to maintain an attitude of gratitude. Before the program I didn’t really understand the true nature of gratitude. I thought it was the happiness I felt when life happened according to my needs and wants. I thought it was the high I felt when my desire for instant gratification was fulfilled.
Today…I know better. Gratitude is an integral part of my serenity. In fact, it is usually the means of restoring my serenity whenever I notice I’m straying from it.
Gratitude opens the doors of my heart to the healing touch of my Higher Power. It isn’t always easy to feel grateful when the strident voice of my disease demands unhealthy behavior. However, when I work my program harder, it is possible.
‘Just for today I will smile…I will be grateful for what I have instead of concentrating on what I don’t have.’”
Accepting life on life’s terms is hard. My daughter has been a substance abuser for twenty-two years, and I grieve the loss of her in my life every day. The five stages of grief: denial, anger, bargaining, depression and acceptance—I know them all, and not always in that order.
My path to recovery involved a lot of denial in the beginning and, as it said in the reading, “the voice of my disease demanded unhealthy behavior.”
So I’m grateful now for the serenity and peace that I have in my life. Acceptance is the gift I give myself every day when I let go and give her to God. When I remember that my glass is half full, it dulls the ache from losing my precious daughter. She’s still alive, but I haven’t seen her in more than eleven years. When they say that there’s always hope, I agree: as long as she’s alive there’s hope for her to recover. But more importantly, there’s hope for me to move on with my life and focus on my blessings. I deserve to be happy, and that’s the only thing that I can control.
We all know people who are set in their ways. I used to be one of them. I had reached a certain age, and I thought I had my life pretty well figured out, though I was a hot mess inside. But what was on the inside was mostly hidden and I wanted to keep it that way: shame, guilt, appearances. Oh dear, what would people think? I had made my deal with the Devil and still thought I could skate through life without needing to change.
Then my middle child, struggling with depression, turned to substance abuse. From then on my carefully manicured world started to collapse. Seeing my beautiful daughter transform herself into an immoral stranger absolutely broke me. It absolutely broke me. And like a broken glass, that’s how the light started to get in. But not all at once. It was a slow wheel, my road to recovery from this. And—surprise, surprise—I learned to carve out a lane for myself, for my own recovery. Why? Because until I learned to rescue myself, I was in no position to help my daughter. The blind leading the blind!
In the rooms they tell us that “we will love you until you learn to love yourself.” I never in a million years thought that I could banish the Devil from my life. But I have, though He tries to visit sometimes. I tell him I don’t need to punish myself anymore. It’s not my fault, what happened to my daughter. Or to me…or to my father…or to my grandfather and aunt. It’s a disease, a complicated family disease. And there is a healthier lane called “Freedom from Suffering” that I try hard to remain in.
I turn to look at my daughter and the lane she’s in. It breaks my heart, my eyes well up with tears, and I grieve for the lost years with her. But I don’t stay there. There are so many others in my life for me to be thankful for. I keep my focus on them.
My years in recovery have changed my perspective and taught me that happiness is not getting what I want. It’s being grateful for what I get.
