Walking Trough Cancer/Part 6

                                                   Now, it Begins…

It’s been a long, hot summer with family around most of the time. But no cancer treatment, a good thing so I could fully enjoy them.

Big girl pants, the time has come.  It’s September 11.

I’m scheduled to have my port implanted in two days, at 8:00 in the morning. So, another hotel stay to avoid having to wake at 5:00 am so that we’ll be on time. We’ve had to do this several times on this journey and we’ve turned them into  mini-vacays and dinners out together. There will surely be more. Lemons to lemonade, a lifelong skill!

I have been nervous about the port placement. But once again the nurses there added some conscious sedation to my IV so that it would be bearable. And it was, just pretty sore afterwards when the lidocaine wore off. I’ll get to see if my new mattrass will keep me on my back.

It feels weird having a foreign object in my shoulder, and I don’t particularly like it. But it’s really the most efficient way to receive my transfusions. A few people who have used their veins have seen them turn black from the poisonous liquid. Chemotherapy saves many, many lives, but it also has a well-known dark side.

After a long, dry period, things are moving quickly because the clinical trial is about to reopen. And they are nothing if not thorough at Fred Hutch. My port is in pace now. Next week I’ll have another PET scan. Then I’ll have my third bone marrow aspiration right after that. And the last procedure that I know of is a heart exam called a MUGA scan, which is a trip through a machine with some liquids in my vein to check the status of my heart. This last test is to see if my heart is strong enough to tolerate the chemotherapy.

After months of delay and frustration, it looks like I’m about to start climbing that mountain. I’m feeling energized and optimistic. To fight the feeling that my life is out of control, I try to stay as well-organized as possible. I bought a “chemo cap” from Amazon which, when kept very cold, you put on just before the infusions begin. The rationale is that the cold will insulate my hair cells from the harmful chemotherapy, preventing my hair from falling out or at least helping it grow back quickly. I’m not optimistic about its efficacy, but I’m willing to try anything to feel “normal” during the process. And I have a pile of scarves and bandanas o cover my head if necessary.

My friends have donated them all to me. Because of all the support I’ve been given from so many, this has not been a lonely journey. Even if I can’t fully prepare for what comes next, I know that I am in the loving arms of friends, family, and God, most of all. I know that, from beginning to end, I will never be alone.

“The Road Less Traveled”

I think we, who are willing to be in this room and undergo personal change, are brave souls.

When I joined Al-Anon, I was in my Fifties, and anxious to save another person I loved.  But oh what a joy it’s been to let go of that obsession, which was becoming so shrill and counterproductive.

I was relieved to turn the focus back on myself and learn that my faulty attitudes were the source of my pain, not the people around me.

Regarding the amends steps, it’s possible to overuse them, just as we might exaggerate our negative defects in the 4th step. I’ve done both! That’s why it’s so important to understand the purpose of amends: reaching personal freedom.

These are intended to be hopeful steps, not self-flagellation. Making this list and then acting on it is just another way to weed our garden. My husband’s always reminding me to weed close to what we’re growing, so that nothing interferes with the growth of the plant.

Making amends is not always pretty, and rather than freedom I sometimes look for forgiveness and closure. With my daughter, Annie, she threw them right back in my face. So I knew I was on the wrong track to expect absolution from her, and my sponsor helped me appreciate my efforts and then let them go.

My real reward has been surviving that loss without the need to punish myself for it.  Truth is, I’m really not that important! Things happen in life, and it’s not always my fault.

The Achilles Heel Of Parent Guilt

“Regardless of cause, history, or contributing factors, feeling guilty about your past role in the development of a teenager’s problem behavior will risk sabotaging your parenting goals. For a more focused relationship with your teenager,

  1. Recognize guilt as negative self-talk that is normal, but that can be managed and stopped.
  2. Acknowledge that a desire for relief from guilt places you at risk for changing the rules, boundaries, and standards that you want followed.
  3. Seek professional counseling or other support to help you act more consistently and proactively, feel better about tough choices, and be less encumbered by what happened in the past.”

Feeling better about tough choices was always my Waterloo. But now I say over and over again that I did the best I could with what I knew. Now that I know better, I can do better. Repeat this mantra over and over again until you believe it.

“Aye, There’s The Rub…”

The Serenity Prayer (Part 3)

 “Courage to change the things I can…

When my ego is involved and there’s a calculated risk, I’m going to be gutsy, not courageous. It takes guts to ski a steep trail; I alone will be rewarded. Courage is different. There is always a parenthesis of fear in Courage; the risk becomes minor. This parenthesis remains a void of fear until it is filled by God. There is no ego in a courageous act. Courage can ask for help. It is often something done for someone else, or it may be something I am not attracted to doing at all. I may lose by doing it. The courageous act is often the unpopular choice, to do or not to do. The results are seldom only mine. It requires more of me than I want to think I can do, alone. After it is finished, gratitude to someone or something is usually in order. Courage requires a moral strength not of myself. This strength is given by faith.”

EGO—Easing God Out—is my enemy in many ways. It makes me willful and arrogant. It’s the great separator—of me from people, of me from God. When I let God back in again, my life and my relationships seem to work better. And God has always given me the courage to do what is difficult in relation to my daughter. My faith in Him has given me the strength to do what I believe is right, regardless of the consequences. I believe things are unfolding as they are meant to. When I surrender to this belief, I am at peace.

Taking Ownership Of My Own Recovery

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.

“God, Grant Me The Serenity To Know The Difference…”

From Each Day A New Beginning, March 23:

“’On occasion I realize it’s easier to say the Serenity Prayer and take that leap of faith than it is to continue doing what I’m doing.’

Most of our struggles, today as in the past, are attached to persons and situations we are trying forcibly to control. How righteous our attitudes generally are! And so imposing is our behavior that we are met with resistance, painful resistance. Our recourse is now and always to ‘accept those things we cannot change, and willingly change that which we can.’ Our personal struggles will end when we are fully committed to the Serenity Prayer.

‘The wisdom to know the difference is mine today.’”

Oh yes, the wisdom to know the difference…how often our egos get in the way of living well. We want what we want when we want it! We want our substance abuser to give up drugs and come back to the living. If only that choice were in our hands…

But it’s not. Only substance abusers have the power to reach for their own recovery…and we have the power to reach for our own. That has been my choice for several years now, and I’m learning to be happy despite losing my daughter to the living death of heroin addiction.

A good friend told me that ego is what separates us from God and each other. Ego (Easing God Out) is often our enemy and keeps us from the serenity we so desperately long for. So I’ve learned to turn my pain over to God (Step Three), to “let go and let God,” and that has made all the difference in my life.

Living In The Solution

I messaged a friend on Facebook: “Oh, God Bless, Maryann, my heart goes out to you and all of us mothers. I often say in my book and on these sites that I’m grieving a living death because my daughter is not the person who’s walking in her shoes. She’s split right down the middle. Anyway, we all have different stories, but some parts are so familiar. My books are all about finding solutions for myself, and I hope they help you too. One thing I’ve learned on this difficult journey is to live in the solution, not in the problem. That’s how I’ve learned to be happy. Hugs to you!”

From a Nar-Anon handout: “People like myself whose problems have brought them to the point of despair have come to Nar-Anon to seek advice and find solutions. As soon as they attend the first meeting they feel like they have come home and feel like they are among people who really understand. And fortunate is the newcomer who finds a group that permits such expression. It gives those who have gone before them a way to give encouragement and hope. The newcomer discovers that it is by giving and receiving in our sharing that we are able to heal ourselves, and slowly we are able to regain control of our lives again.

But still more fortunate is the newcomer who finds a group that does not allow such unburdening to continue meeting after meeting. There is work to be done; Nar-Anon is not a sounding board for continually reviewing our miseries, but a way to learn how to detach ourselves from them.

A Recovery reminder:

I will learn by listening, by reading all the Nar-Anon literature as well as all good books on the subject of substance use disorder by working and trying to live the 12 Steps. The more I read and study the more knowledge I receive. Knowledge is power, and I will be able to help myself as well as others.”

“Look Back Without Staring”

From Hope for Today, September 13:

“Never underestimate the power of self-awareness to put past experience into a new perspective…Until we take the time to look at ourselves honestly. we may never be free of the bondage in which alcoholism holds us captive.”

As the mother of a substance user, I was focused completely on my daughter and her problems. In the beginning of her illness, I failed to see that how I handled the chaos in my home might have more to do with me than with her. I didn’t realize what a powder keg my past was bringing to an already explosive situation.

My own history of substance abuse played a big role in my reactions. Whoever said “Blame is for God and small children” forgot about me. I thought Annie’s illness was my fault. I burdened myself with guilt, and that burden crippled me when dealing with the consequences of her bad choices. I often lost my own moral compass, the one I raised her to follow. That guilt put at risk all the healthy boundaries I had set in place with all of my children. I became lost.

Much of my behavior was a misguided attempt to protect my daughter. I became overprotective, and shielded her from the logical consequences of many choices that might have taught her some valuable life lessons.

I did step up and put her through four rehabs. I was happy to do that and so hopeful. But after she got out and relapsed every time, I fell back into old patterns. I didn’t see how I might be part of the problem.

My enabling just kept her stuck, and I became stuck too in a vicious cycle that wasn’t helping either one of us. I needed to distance myself just enough to learn how to detach from my daughter. To do it lovingly and without any judgment.

It’s a fine line we mothers walk between protecting our children and letting them go to learn how to live well. Since so many substance users stop growing emotionally when they start using, it’s easy to step in and do too much for them. There’s nothing easy about what we face with our children.

But the more I learn about myself, the more armed I am to avoid the pitfalls along the way. As I find the need to change much of my behavior, so do those around me. My recovery has affected all those I come into contact with. And it has “freed me of the bondage that had held me captive” all of my life, so that I can let go of the past, and more effectively deal with the challenges that face me now.

An Important Distinction

A few years ago, I was reading about one of my favorites, Naomi Judd, and how she sadly died by suicide. This is what her daughter, Ashley, said about her death:

“When we’re talking about mental illness, it’s very important to be clear and to make the distinction between our loved one and the disease,” she continued. “It’s very real … it lies, it’s savage.”

Hmmm…

I believe that. We all know how substance use disorder can change our kids: change their minds, change their lifestyle, change the values we taught them. In my daughter’s case, as long as drugs were flooding her system, she ceased to be the daughter I raised. So yes, I make the distinction Ashley has called for. And I pray that someday the general public will have as much compassion for our lost children.

I remember my daughter before this disease took her away from me. And I take comfort in those memories—because I can separate her from her disease. It’s a surreal exercise, I know. But remembering our children as they were—and as they can be again—is profoundly comforting to me. It doesn’t change the present, but it puts things into perspective. Smile about the birthday parties and the piñatas. They happened. I did my best with who I was at the time.

We all did.

Expectations

In recovery, we learn to profoundly adjust our expectations, hard as it is. We raised one child, and now we have another. We are all too aware of the change that drugs have produced in our children. A parent wrote in Sharing Experience, Strength and Hope ( the SESH book) a very revealing statement, something I could have written myself. It is a key to understanding my story, my mother and father’s stories, and my daughter’s painful struggle:

“I expected my children to be perfect, to always do the right thing. I tried to control them by giving them direction and making them do things in a way that I felt was correct! When they didn’t, I could not handle it.

I could not accept their drug use and I felt that their behavior was a reflection on me. I was embarrassed for myself and scared to death for them. I became so distrusting of my children that I showed them no respect. I would meddle and invade their privacy looking for any excuse to challenge and confront them.

When I came to Nar-Anon, I learned that my interference and my attempts at controlling them were actually standing in the way of their recovery. I learned to let go of the control I never had in the first place.”

In an earlier blog, “Redemption and Freedom,” I said, “I would finally, thank God, let go of the oppressive burden I was placing on my daughter by demanding she get well so that I could be OK.”  This is a difficult statement for some of us to make.

I’m very codependent; my daughter’s active drug addiction shook me to the core and made me decidedly unwell. Her illness had the power to ruin my day (and my life) before I got into a recovery program and started practicing the concept of detachment with love.

This concept has placed me at a healthy distance from my daughter so that I could view her situation with some objectivity and respond to her with intelligence and compassion. I’m very grateful for the education I’ve received in the rooms of recovery. I will always love her and I grieve the loss of her. But there are other people in my life, and I want to stay well for them. Thank you, Nar-Anon, for helping me reclaim my life!