jbarthels

Yesterday was a day to be inspired. Brandi, Brie, and I, along with buddies Lisa and Ashley joined approximately 1,500 of our closest friends to walk the streets of Rockford at the Second Annual Women's March. The sun was warm, but the energy of the crowd sizzled. Chants were heard all along the route of the march. "What do we want?" shouted one marcher. "Justice!" shouted the crowd. "When do we want it?" "Now!" came the emphatic response. There were young families with children in strollers and wagons. There were older people, including one woman who carried a sign that said, "Now You've Pissed Off Grandma!" It was a day to be together, to feel like we are not alone in our worries for this country, and to feel like we have the power to make a difference.

It was also a day for reflection. As you can imagine, that number of marchers caused some significant traffic issues downtown and police officers needed to halt the marchers briefly to allow traffic to pass. This seemed common sense to me, but a couple of marchers behind us complained and asked the question, "Why did we allow them to do that?" My initial thought was that it was considerate and consideration matters to me. But then I shared with my friend, Lisa, a story that I remember Wayne Dyer told about Mother Teresa. In the 1970's, Mother Teresa was approached by protesters of the Viet Nam War and asked to attend their march. Mother Teresa said no to the request, saying that she would not march AGAINST the war, but if they ever had a march FOR peace, she would be there. After sharing this with Lisa, I reflected as we walked along. What was I marching for? My sign said, "Vote like women's issues matter...because they do." But it was bigger than that. I was marching for a country that has respect for all human rights. I was marching to support people feeling they had a voice in this country. I was marching for all human beings to be empowered to live their best life. I know these things can not be accomplished with hate and my faith in God tells me to treat others with human kindness and respect.

At the end of the March, I was standing outside with my posse, when a documentary filmmaker approached us to take video and get a sound bite about why we marched. My wife, daughter, and friends moved away from me as though I had parted the Red Sea in the day of Moses. My words came easily because I knew now why I marched. I am not saying what we do does not matter. Our actions do have value. But so does the intention, the source of motivation for why do what we do. In the streets, in our homes, in our schools, in our workplace, in our churches, let's remember to reflect on our why. Then, we will truly live a life of intention.

The holidays came. And then they went. With barely a notice on my part. After enjoying a pre-Christmas celebration with my cousins, my tribe as I call them, I fell ill to a horrible stomach bug, followed by skin boils, followed by a head and chest cold. It definitely reminded me of Job. But this was not a plague from God. It was the normal consequence of taking the cancer drug I take, a compromised immune system. It challenges my normal sense of gratitude. But, I do remind myself that the latest research shows this drug is tied to better outcomes for breast cancer patients.

So, what is the upside of this period of illness beyond getting to stay alive? It gave me a chance to slow down, and as my head cleared from the fevers, I began to reflect. One of the things I reflected on was one of my recent reads, <em>Promise Me, Dad</em> by Joe Biden. It is the story of the Vice President's journey as he walked with son, Beau, through cancer diagnosis, treatment, and death. It explored the inspiration Joe received from Beau, but also the heartache of holding onto hope until the very end. It detailed how Joe balanced his need to support Beau, at the same time he took care of significant matters for our country and our world.

Now, you might think reading a book about a father's loss of his son to cancer is an interesting literary choice for a cancer patient. And I am not going to deny there were tears streaming and even a few sobs that escaped from my throat. But most of the book inspired me. It inspired me to balance heartache and struggle with gratitude. It reminded me to keep my eye on my purpose in life, not just on the mechanics of living it. It reminded me of the importance of relationship and connection and the legacy of relational memories we all will leave behind. It showed me, again, that when my body is weak, my heart can be strong.

I have not written in a few weeks and this photo is one of the projects I’ve been doing in the meantime.

Painting, lettering, jewelry, ink work have all been used to fill my soul. What has made my soul so empty? Once again, I have faced the possible suicide of a client. Rescued by a loved one, this attempt had a “happy ending”. But the rope was around her neck and I am facing the reality that this person could have lost her life to a deep despair that overwhelmed her in that moment.

This kind of experience shakes me to my core. Professionally, I feel like I let the person down, that I should have been able to predict this, and intervene before her hands ever touched the rope. I shared this with my wise friend, also a therapist. She reminded me that we are one influence among a myriad of others. She reminded me that we don’t really have that much control. Her words brought a sense of comfort, but they also helped me to slide down the rabbit hole.

If I embrace that I don’t have control, then I am embracing my vulnerability. Vulnerability is that word I like to talk about and throw around. But I dig my heels in when it is time to step into the arena and experience vulnerability. If I truly accept that I do not have the control over the outcome of therapy… and life… then I have to face that I could experience devastating loss. I would not have the power to stop it from arriving on my doorstep. Those that know me, know that I operate in life from a profoundly emotional and spiritual place within me. This place creates a deep well of love and compassion for my clients. The loss of one of my clients, especially at their own hands, would create grief within the same deep well. Therapy is a professional relationship, but it is also two people connecting, caring, healing. It is transformative for both of us. I have seen and experienced the power of transformation.

Brene Brown says that the antidote to this fear, this foreboding joy, is to embrace gratitude. So, I will continue to do therapy…and life… from that deep well of love and compassion. I will risk loss and grief. Because to be a part of that transformation is a gift, one I am honored to receive every day I step into my office. But when I get scared, I may retreat to creating something in my art room. And when I am filled back up, I will re-enter the arena, ready to be vulnerable, ready to love again.

My wise friend told me last week that she is going to make a T shirt for me that says, "Be careful what you you say to me. I might blog about you." This conversation took place after I ranted for a few minutes about thoughtless things people say to cancer patients.

I had been on the phone last week with someone who wants to create a marketing plan for my blog to get it more exposure on the internet. He asked a few questions about my dreams for the blog (writing posts isn't enough?). Then he launched into a conversation peppered with his view of cancer and cancer patients. He told me is 65 years old and has the body of a 40 year old, he works out for 2 hours a day, and he does ultimate mountain hikes. Then, he proceeded to tell me about his green drinks every morning, that his body that has not aged in 10 years, and his plan to live to the ripe old age of 105. This dissertation was followed up by advice on eating healthy and avoiding fast food, getting off the couch and being active, and taking the right supplements and micronutrients to overcome cancer. I could not get off the phone fast enough. As if that was not excruciating enough, he did a follow up phone call and replayed the same tape for me this week.

So, here is my truth. I ate at McDonalds last week with my debit card and it caused my bank to call me about fraud. My truth is I am as active as my body will allow me to be. I took a short mile walk before I sat down to write this. My truth is that I have been through four cancer diagnosis in seven years and my body is tired. My truth is that seven years of chemotherapy and treatment has aged my body decades. I have not slowed down the aging process. My body has kicked the aging process into overdrive and that makes me sad. But it also makes me grateful because I am still here. My truth I try not to think about how long I will live. I try to stay in a place of gratitude for this moment, this day. For it is what I have. Would I love to have a relatively healthy life to age 105? Of course! There is so much for me to do, knowledge to gain, so many ways I want to fulfill the purpose God has given me. But going there triggers a deep well of grief I would rather not revisit.

My truth is that when people talk to me about what cancer patients "should do", it fertilizes the fear that lives inside me. Have I done enough to take care of my body? Is this something more out there that will magically give me the physical body I once so thoughtlessly took for grated? My truth is that when people talk to me about what cancer patients "should do", it highlights the shame that lurks under it all. I become like those women who come up to me after a speech and whisper, "I have cancer too." Their whispered confession carries shame that maybe they did something wrong or still are doing it wrong. My truth is that I am like everyone else on this planet. I try. Sometimes I fail. I try again. Sometimes my path is fairly straight and simple and sometimes it has twists that make my head spin. There may be something else I can do to overcome cancer in my body. But for this day, I will focus on overcoming the fear and shame that sometimes lives in my soul... and maybe ordering myself a new T shirt.

My dear Amber,
Our history is rich with letter writing. A letter for going off to college. A letter when conflicts between us needed the reflection inherent in letter writing. Letter writing when I thought cancer might take me from you while you still needed a mother’s wisdom. And now, I am writing a letter as you begin your next new adventure, your move one thousand miles away from everything you know.

I know that this move seems surreal to you at the same time you are excited beyond words. And I am just as excited for you. But this move will bring its own unique experiences and some will be joyful and some will be difficult. When the difficult moments come, I want you to remember something. Difficult moments do not mean you made the wrong decision or you have necessarily done something wrong. It means, my dear daughter, that you are alive. Because it is life that brings us joy and life that brings us pain. Sometimes pain is a natural consequence for a choice we have made. And sometimes pain, like cancer, comes for no reason at all.

Even if dark days come as a result of a decision you’ve made, you have the power to make that decision differently without ever having it define who you are. Every moment, every day has the potential for us to learn, grow, and do life differently. Every moment, every day has the power to move us from light to darkness to light again. Remembering that will make dark moments easier to tolerate.

I have loved you from the moment I learned you were growing inside me and that love keeps expanding as our time together marches forward. I love your sense of humor, your intelligence when you drop a logic bomb on me. I love your assertiveness when you say, “Let me tell you what I need.” I love how you hold me accountable when I step over a boundary with my “mom nagging”. I love your dramatic impressions of me as a mom when you were a teenager. That love will follow you as you begin the second act of your life. So, as you continue to experience the dark days and light days of life, remember that you have the power to learn and grow, because you are alive and you are loved.

Just a short time ago, I received the following letter in response to my blog post. I wanted to share it with you, my readers.

Mom,
I loved your blog post. It’s funny because I just finished reading it after having one more girls night out with my friends. As I was driving home, I was thinking about all of the changes that are about to happen. In a way, it feels like right before leaving for college all over again. This is the furthest away from home I will be, I won’t know anyone, I’ll be starting a new chapter. Then I got the notification of a new blog post.. It was perfect and reminded me that while this is the farthest away from home I will have ever lived and I am starting a new chapter, I won’t be alone. I am taking all of my friends and family with me. I am taking laughter from my sister, determination from my step-monster, and bravery in the face of change from my mom. I am going with the love and support of my family and their utter belief that I will be successful in this new chapter. I am grateful for them and it reminds me to take time, even in the big changes whether good or bad, to be grateful for the experiences I’m in. The bad times make the good times better and family makes all of it survivable. So thank you to my family for the love and support and let the next adventure begin.
Love,
Amber

Comparison. It is something I see in many aspects of our lives. I even see it in suffering. Sometimes when I am sitting with other breast cancer patients, I hear subtle comparisons between women who have different types of the cancer. One woman said to me, “Oh, I don’t have that kind. I have the easy kind.” In this way, comparison becomes a way of minimizing our experience, our emotions, and our suffering. I wish I could wrap my mind around why we as human beings do that. It feels like a false sense of reassurance, essentially saying to ourselves,” I will be okay because i don’t have it that bad.” And despite knowing the pitfalls of comparison, I still did it to myself this week.

In returning a missed call from my daughter, Amber, I learned that she will be getting an offer tomorrow from a company she really wanted. I am so proud of her, for being the kind of employee that other companies want. I am so proud of her, for taking a risk and moving out of the company she has worked for her entire adult life. I am excited for all the new opportunities that are out there for her. But this new company is in Dallas, Texas, about one thousand miles from my home. One thousand miles. By the time we were ending our conversation, I was fighting back tears. I was thinking that I would no longer be able to just get in the car and drive a few hours to see her. I felt sad, like she was leaving for college again. And now, the tears became a steady stream running down my face too quickly for the kleenex to catch them.

Then I remembered all the mothers, who would never see their children alive because of the mass shooting in Las Vegas. I thought of their grief, the kind of pain that rends a heart and overwhelms the soul. My heart had been heavy for Las Vegas all week as I remembered my family vacation there two weeks ago and the beautiful memories we created. But now, it is a city in mourning. And we are a country that is mourning with them.

So what do we do with this? I believe we gently set down our tendency to compare one mother’s loss to another. We embrace each other with compassion and recognize that everyone suffers. In different times, about different losses, and in different ways. That one person’s devastation does not wipe out another person’s pain. The pain can coexist and we can honor them in ourselves and each other. I am not asking a mother who lost her child on Sunday to validate my pain. I am saying that I am going to give myself permission to feel my own sadness at the same time I lament the unimaginable heartache she is experiencing.

Letting go of comparison will not end suffering, for suffering is part of the human experience. But, the ability to bear witness to another’s suffering without diminishing our own will allow our individual and collective healing to begin.

Those of you that know something about me may recognize that self-promotion is not something I am comfortable with. In fact, I think I’m allergic to it. I get all itchy and scratchy just thinking about it. I just like to let things happen organically, in their own time and in their own way. Shocker! Publishers don’t see it like that. They encourage (insert the word push) authors to use different strategies to promote their book. A favorite is to be present on social media. I have posted memes I created on Instagram, Facebook, and Twitter plus a few promotional posts. My daughters have posted more about me and the book than I have. So, that is the extent of my social media presence. Clearly, I needed to step up my game. I had the brainy idea that I would let people see what the normal life of a cancer patient is like. For a month I would post a picture a day of my life, ending on October 22, the anniversary of my last IV chemo treatment. It would also take place during October, National Breast Cancer Awareness Month.

So beginning on September 22, I began to post a photo a day. For those of you who do not follow me on social media, my photos have been of hair appointments, elevating my foot due to cellulitis, swimming, going to the doctor, having trees cut down in my front yard, and having lunch with my friend Annette. Sounds pretty exciting, doesn’t it? I have walked around thinking I have this amazing, blessed life. Yet, in photos, my life is pretty ordinary, and dare I say, boring.

I looked back over the posts and reflected for a few moments. How do I really see my life? Here’s what I realized. My life in photos is boring. But in the flesh, these photos are of intimate relationships that make my life meaningful. I’ve seen the same hair dresser for fourteen years. She supported me through cancer and I recently returned the favor. I probably got the cellulitis from a bug bite while hiking in the Grand Canyon with Brandi and the kids, all of whom I adore. The memories of that experience together brings a deep joy to my soul. My doctor is awesome. She has walked this journey with cancer by my side with intelligence, diligence, and kindness. To say I’m grateful for her does not even touch the emotions I feel. While she was not in the photo, Brandi was in the pool with me when I was swimming. We floated, swam, and had good conversation that afternoon. We talked about where we saw our life going and dreams we still wanted to reach for, both as individuals and as a couple. And my dear friend Annette. She is someone I feel totally safe with. I can tell her my most vulnerable thoughts and feelings and I know they will be treated as a cherished gift… gently, reverently.

I have realized that an exciting life and a blessed life do not have to be the same thing. Because my core values include an enduring value in connection and relationships, my quiet life is rich, amazing, and blessed. And I feel such intense gratitude for it. I do have a few exciting things happen in my life, but the soil of my life, where my roots live, that is in the depth of my relationships and my faith. And so, less than a week into my month of social media, my perspective has shifted. I may not sell any extra books from this, which will not please my publisher. But I have a renewed appreciation for how really amazing my life is, in those who love me and those who I love. I wish you, my dear readers, the same.

My heart sank…

At the end of the session, my client had asked if she could purchase a copy of my book from me. Normally, I would be pleased that someone was interested in my book, but this was different. I knew this client was a conservative Christian and was worried that learning I was a lesbian could diminish what was a very strong therapeutic connection. I love this client. She has the most beautiful, giving heart. She has been through such dark times in the past few years and yet, her strong faith has carried her through. I deeply admire that about her. I knew I did not want to lose her as a client.

Yesterday, she returned for her first session since purchasing the book. She shared feelings of being saddened that I was married to Brandi. She talked about gay people as broken in a world filled with brokenness. It was painful to keep my body…and my mouth, still. I had a lot of “But I…” phrases and Bible verses that wanted to slip off the end of my tongue. I wanted to defend myself and my marriage. But, I remembered my favorite Bible verse from the book of Psalms. Be still and know that I am God. Be still, Julie, just be still. And more than stillness, I listened. I listened to her story, how life experiences brought her to her current thoughts and feelings. At the end of the session she indicated she wanted to continue doing therapy together. I could see that therapy would spring from this place of real authenticity and perspective taking.

Brene Brown did a live Facebook feed this week in response to the violence in Charlottesville, where she talked about the importance of perspective taking. It reminded me of the value in taking off my own glasses and putting on another’s glasses, to see the world through their lens. It is something I try to do in every session with my clients. And after thirty years in the profession, it is something that is not a far reach for me. Until looking through someone else’s lens makes me view my marriage differently. My marriage, one of the best parts of me. My marriage, which has been through its own rocky terrain. My marriage, that with work and commitment has flourished. When people spend time with us, they often say they feel the love and joy enter the room when we do. Now, perspective taking makes me squirm.

But, I believe, perspective taking is essential for repairing relationships and for healing our country. This is especially true when it is about issues that are a part of our soul. We need to be willing to see where that person is coming from and how life’s journey has brought them to this place. It does not mean we have to agree. In fact, the outcome may mean we agree to disagree. But the process of taking another’s perspective will allow us grow in ways we would not if we only listen to those who sound like us and think like us.

I am so grateful to my client for having the courage and strength to come to her session, to share her views honestly and respectfully, and to value the relationship beyond those views. While it was difficult, it truly was such a gift.

Sometimes I think my brain is totally emptied of any thought I would want to share with other human beings. I wonder if this is the end of writing this blog. And then life happens. Today life happened in my lymphedema support group meeting at the hospital. In case you are not aware of lymphedema, it is the accumulation of fluid under the skin and can be caused by many different variables. Often, it is caused by the removal of lymph nodes during cancer surgery and so the group sitting around the table today was comprised primarily of cancer patients.

Ellen, in her 80’s, was diagnosed with breast cancer six months ago and just completed treatment. But her sorrow goes deeper than that. She is trying to come to terms with her daughter’s recent diagnosis of stage 4 breast cancer. Korrine, is a ten year survivor of breast cancer. But this afternoon, she is scheduled for a biopsy on a suspicious lump on her remaining breast. Sharon is struggling with increasing lymphedema, even though she is removed from her surgery by many years. And me… I am waiting on CT scan results that will come in two days to tell me if I am holding my own. The canvas of this group is colored with grief and loss, strength and connection, and perseverance and faith.

Then my day at my therapy office started and I met with a client who has suffered with debilitating chronic pain since childhood. She shared that she had read my book and felt uncomfortable talking about her pain when I, too, had suffered with cancer. Beyond that, she had judged herself harshly for her own response to her long-term pain. She believed she should be “handling it better”.

I feel deep sorrow for all of the women I saw today who are in physical and emotional pain. I also felt distressed that so many of us compare our pain to see whether we have earned “the right” to our feelings of grief, fear, or pain. Are we as bad as that person? Do we have it as hard as they do? Are we handling it as well as they are? I would argue that we need to gently let go of our need for comparison and instead, embrace our ability to be self-compassionate. We are participating in life with our own unique experiences; with our own joys and challenges; with our own strengths and weaknesses. I believe we need to find acceptance with those experiences and all the thoughts and feelings that go with them. Not become the judge of them in order to determine their validity.

So I say a quiet prayer. A prayer or healing from pain for those in this world who suffer; A prayer for our collective ability to honor our individual suffering with self-compassion. Amen.

For more posts, go to www.idratherlovelifethanhatecancer.com

My next CT scan, John O’Leary, Pastor Rob’s sermon this morning. Interesting cast of characters to trigger awareness about the rapid passage of time in my life. And yet, in combination, they have done just that.

Eight days from now, I will go to the cancer center for my next CT scan. Four days later Brandi and I will meet with the oncologist to discuss the results. It is my hope that I will hear that what is left of my right kidney looks good, that there are no new signs of cancer, that the drug I am taking is keeping the cancer at bay. But I know that hope is just that and cancer is unpredictable. And, well, so is life.

John O’Leary inspires me and his book, On Fire, is amazing. John was a young boy when he decided to copy the antics of neighborhood boys and play with gasoline and fire in his family’s garage. Burned on 100% of his body and given almost no chance of surviving, John manages to not only survive, but thrive. He spends five months in the hospital and has to have his fingers amputated. After the hospital, comes the painstaking work of rebuilding his young life. But his narrative is not a solitary tale, but the story of so many people who showed up in his life. These are people on his medical care team, his family, his community, and even Jack Buck, the Baseball Hall of Fame sportscaster for the St Louis Cardinals. As I listened to the book in my car this week, I heard John discuss how we assess our life. He asked this question: “Do you lead a life of success or a life of significance?” He explored the fleeting nature of success and how it leaves no lasting mark on this world. But significance comes when we focus our life on showing up and making a difference in a meaningful way. Hearing John’s words moved me and was what he calls, an inflection point. By societal standards, my life is successful. Lovely home, strong marriage, great kids, successful career. But is what I offer the world significant?

Then Pastor Rob, hit it out of the park this morning. Preaching on Micah 6:8, the message explored what it means to love mercy and do justice. Pastor Rob defined mercy as responding to others in times of need and he defined justice as a deeper process that changes the backdrop of a person’s life; or the fabric of a community; or the landscape of our world. I believe I am merciful. Are You Hungry, the ministry Brandi and I provide for the homeless is a ministry of mercy. But how does it show justice? How have we influenced the backdrop of a person, the fabric of a community, the landscape of our world? I want to believe that being seen, being connected, and cared for by another person goes deeper than simply being fed. If so, it is a seed I may never see come to fruition.

Please let me be clear. I am not minimizing the ways in which I contribute to people or my community. However, I know the reality of cancer and I want my days to include reflection. I want to evaluate whether I live a life of success or a life of significance. I want to ask myself if I do justice, love mercy, and walk humbly with my God. I wish I could tie this post up with a neat little bow of wisdom and inspiration. Instead, I can say this is a post of process, exploration, and faith. I invite you into that process too.

For more posts by Julie Barthels, go to: www.idratherlovelifethanhatecancer.com