Survivorship by Design

Posted on: December 4th, 2014 by
16

Not long ago, Marie Ennis O’Connor of Journeying Beyond Breast Cancer posed an excellent question on one of her posts; she inquired what our particular style of illness was. She based this question on Anatole Broyard’s book Intoxicated By My Illness, where the author says, “Every seriously ill person needs to develop a style for his illness.”

I left the following comment on her post: “I have worked very hard to cultivate my style of dealing with breast cancer and its aftermath. I try to shelter myself from too much information on the Internet, as what I’ve often found is beyond scary and really doesn’t serve me. My purpose is two-fold: 1. To be good to myself and instead of giving too much of my time, effort, etc. to others who drain me, to give that time to myself and 2. To help educate others about what it’s like to be a breast cancer survivor and lend voice to this experience. In doing so, I am also helping myself as it’s cathartic and therapeutic to write and be heard.”

Now, looking back, I realize I was really discussing my survivorship style, rather than an illness style.

So let’s talk survivorship.

Everyone who considers him or herself a cancer survivor has an approach unique to that person. I am no exception. For me, survivorship is often a haphazard array of feelings scattered like pieces of a train derailment. Too many things seem out of my control and I often find myself neck-deep in ugly cargo.

But to a great extent, I have also designed my survivorship experience. At some point — after recovering somewhat from cancer aftershock — I decided survivorship would not define me, but I would try my best to define what it should look like.

Here, then, are the ways in which I’ve decided to create a survival culture to help keep the Sword of Damocles at bay. Caveat: Each person is different, so what fuels my anxiety might alleviate others’ anxiety. That being said, here, then, are ways I’ve designed my survivorship to help minimize stress.

Control time on the Internet. Spending too much time on the Internet, reading too many impersonal articles on cancer hinders my emotional recovery. I get cancer-blitzed by information overload, and then I sometimes go to that dark place. This is, understandably, harmful to me. I also don’t fare well reading cancer-related material at the wrong time — before bedtime or in the middle of the night. Doing so stirs up too many triggers and leads to insomnia. Not healthy.

Limit my information sources. This goes hand-in-hand with my first point. My number one go-to sources for information are my doctors. I channel their knowledge into me and present my questions to them rather than Google, Ask.com, and the variety of websites out there. I’m lucky to have awesome physicians who are knowledgeable and treat me as the person I am, not just a patient.

Avoid toxic people and set boundaries. You can read more about this here.

Be my own guardian. I must monitor books I read and films I watch. It’s like I have an internal review board making decisions as to what’s appropriate for my psyche. Even before I was diagnosed with cancer, I found it difficult to watch movies where someone was dying of cancer.

Now I find it impossible.

As much as I want to, I cannot handle the stress of cancer-related print tomes and film.

For example, I wanted to see the movie The Fault in Our Stars and read the book on which it was based, but I knew I couldn’t handle it. When the movie finally made its way to the second-run cheap theaters, I came really close to buying a ticket for the show. I felt ready to handle it.

I was in good spirits, feeling rather upbeat. But then my inner censor kicked in and kept me from seeing the movie. As much as I wanted to go, I knew that doing so would be detrimental to my mental health.

I know I’m missing out on genres of excellent, quality cancer-related material, and this pains me. But I’m too vulnerable to partake in many cancer storylines, and this sometimes makes me feel like I’ve failed at some level. But, then again, it’s a strength to know what I can and cannot handle.

Stay connected to the human story and community. This seems contrary to the previous point, but I read as many cancer-related blog posts as I can because they 1) are outstanding pieces of literature that speak to me and 2) enhance my feeling of connection and community to other survivors. The human story is more powerful than objective information on a medical procedure, for example. At a fundraising event, I was chatting with a nice gentleman who, upon learning I was a blogger, raised the issue of what blogs have to offer the field of medicine. I replied, “The field of medicine needs these human stories.” Upon his quizzical look, I added, “Never underestimate the power of the human story.”

Lend voice to the cancer experience. The world needs our collective and individual voices. Cancer slam-dunked us into a cesspool, and we writers have the right to put our voices out into the world and be heard. As a survivor, I feel that bearing witness to the cancer and survivorship experience is cathartic and strengthens me.

No, we should never underestimate the power of the human story. And whether our survivorship styles are similar or different, they are uniquely our own. Healthy Privilege Pic

How do you handle survivorship?

Do you feel you have designed your survivorship experience?


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16 Responses to Survivorship by Design

  1. Nancy's Point had this to say about that:

    Hi Beth, I guess I’ve created my own form of survivorship without even realizing it. Writing, blogging and connecting with others who ‘get it’ is a huge component of my ‘survival plan’. I want to read as much as I can about how others have dealt, and are dealing with cancer. And as you know, I love reading cancer blogs. I read books about cancer too. I go to ‘cancer movies’. It’s almost like I can’t get enough of learning about the experiences of others. And advocacy is part of it for me too. Sometimes I feel like I should be doing more advocacy as far as delving into research, going to conferences and such, but that’s not really me. I share my story. I share the stories of others. That’s my main role right now anyway. And I’ve come to realize that this is advocacy too. I love, love your final paragraph. It’s exactly how I feel. Without our individual and collective stories, without our voices, none of the rest matters. Great post. Thank you.

    • Beth L. Gainer had this to say about that:

      Hi Nancy, I’ve always admired your ability to learn about others’ experience, in films, books, blogs, and whatever other types of mediums there are. You said it: connecting with others is such an important component of the survival process. I also don’t get that much into research and conferences. I would like to go to conferences, but it’s near-impossible with a six-year-old. And I do believe that our collective voices matter so much.

  2. Eileen@womaninthehat had this to say about that:

    Blogging has been a big part of my survivorship. Certainly cathartic and the support from the community is wonderful. I’ve felt a responsibility to myself as a survivor to grow and learn how to take better care of myself. Life is too precious, too fragile, to allow others to drain me or to be involved in relationships where the balance of give and take is lopsided.

    • Beth L. Gainer had this to say about that:

      Eileen, yes, blogging is so cathartic, isn’t it? I’ve also enjoyed the support from the community. And you are so right about life being too precious to allow oneself to be drained by others.

      Thank you for your thoughtful comment.

  3. Becky Hogue had this to say about that:

    I totally relate to not being able to watch certain movies .. for me that also goes to TV shows as well. I find that I cannot handle too much suspense .. it is just too stressful. So some of my favorite shows before cancer, I cannot watch now.

    • Beth L. Gainer had this to say about that:

      Hi Becky,

      I totally get where you are coming from. I also can’t watch TV shows with too much suspense. It stresses me out as well.

      Thank you for your comment. I appreciate your readership.

  4. Scott Johnson had this to say about that:

    Hi Beth, Rebecca mentioned suspense movies above and I wonder if the uncertainty of illness makes impatient with the trail of bad choices that those movie plots rely on? In an odd way we might want to work backward from the bad outcomes that come our way. Playing the sad story backwards?

    • Beth L. Gainer had this to say about that:

      Hi Scott,

      You pose a really interesting question. I think the uncertainty of illness has something to do with it. And, as you know, when it comes to medical diagnosis and treatment, there’s a good amount of suspense. Working backward sounds like an option.

      I think my impatience with cancer story lines has a lot to do with reliving the trauma and going into over-empathetic overdrive.

      Thank you for reading and commenting on my post.

  5. Claudia Schmidt had this to say about that:

    I never really put it into words, but I too, have a strategy for managing my own mind and body after cancer. I do a lot of the same things as you. I would say the most important thing for me is to limit my interaction and exposure with negativity in general and especially when it relates to breast cancer. I avoid the whole world of blame, as it gets me nowhere and I’d rather focus on the other side of the story–that I’m still here and able to live my life. Thank you, this was a very thoughtful and thought provoking post which has got me thinking……

    • Beth L. Gainer had this to say about that:

      Claudia, I really love your approach: avoiding negativity and blame is a sound strategy. I’m so glad you are still living your life. Thank you for reading and commenting.

  6. Marie Ennis-O'Connor (@JBBC) had this to say about that:

    This is just brilliant Beth! I love where you took my question to! Thinking about it further, cancer is a chronic illness – we are never really done with it, but it’s important to take steps to move on from it. Your guide is a great example. I really love this!

    • Beth L. Gainer had this to say about that:

      Marie, thank you so much for your kind words! Your writing prompts are always great, and this one really spoke to me. Thank you for planting the seed!

  7. Pingback: Weekly Round Up: The Crowning Glory Edition | Journeying Beyond Breast Cancer

  8. Beth L. Gainer had this to say about that:

    Thank you Journeying Beyond Breast Cancer for including me in your most recent Round Up.

  9. Sam Rose had this to say about that:

    Beth, every time I visit your blog I feel so glad to find someone with similar thoughts and feelings to my own, thank you for sharing. I’ve never had a plan as such for survivorship, but what a really interesting question to think about. Like you, I tend to avoid movies, books etc that I think will be detrimental to my emotional state – if I hear about a sad story in the news or in social media I’ll try to avoid that too (and don’t get me started on the pointless pictures of ribbons and other cancer related things that get posted around Facebook…)

    I find that writing poetry and blogging is really important for me. I’m also thinking of doing a skydive to as fundraising for a cancer charity, but I’m unsure if that would be a good idea as it will make me think about it all so much until I’ve completed the event.

    First and foremost I try to be kind to myself, and secondly I find myself naturally cultivating more gratitude for the things I have, and the current health of myself and my partner, friends and family.

    • Beth L. Gainer had this to say about that:

      Hi Sam,

      Thank you for your thoughtful comment. Like you, I also write poetry and find writing in whatever genres cathartic and healing.

      Skydiving? Wow! I’m too much of a chicken to even ponder skydiving.

      Being kind to yourself and living a life of gratitude are the way to go. You are insightful and make excellent points.

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