Strength

Advocacy, General 7 Minutes

It took me some time after my Stage IV Metastatic Breast Cancer (MBC) de novo diagnosis in 2017 to figure out how open I wanted to be about my diagnosis and living with cancer.  That was partially because I didn’t know what I was going to do with my law firm and my clients.  I’d always been super careful about how much personal information I shared because of my professional responsibilities as a lawyer and advocate and when the bottom fell out of my life, it took some time to figure out what to do.

Once I knew I wanted part of my advocacy to be living openly with MBC, that’s been a huge part of my life ever since.  I regularly share a lot of information online and otherwise about the highs and lows of living with terminal cancer.  One of the responses I get all the time is some variation on the “you are so strong” comment.  To be clear, I don’t usually get this response from people in the MBC community, it’s from the healthy people I’m connected to who usually have this reaction.

At first, when I got this response, it felt good.  It felt empowering.  I thought … “You are damn right, I am strong,” patted myself on the back and kept going.  After a while, though, I started looking a little deeper.  Yes, I know, I’m a little slow on the uptake sometimes. I often struggle to access and name my emotions.

You see, I don’t always feel strong.  I often feel as if I’m made of glass, that I’m already cracked and one more thing will simply shatter the entire pane and my existence with it.  Some days, I don’t feel equipped to get out of bed, let alone get dressed and take a shower and deal with the constant issues involved with lifelong cancer care, ridiculous insurance companies, often insensitive family and friends, the demands of two little boys, a husband, and just everything else that makes up my life.

That validation I used to feel when someone says I’m so strong just doesn’t cut it any longer while living with terminal cancer.  When someone said that in the last few years, I usually respond with a variation of “I’m just dealing the cards I was dealt,” or “I just keep putting one foot in front of the other,” or “you never know what you can handle until you have to handle a lot.”

And yet, I don’t know that none of those responses are really the whole story either, not that I owe the whole story to any person who comments on a post of mine.   What is strength, anyway?  What does that person commenting about how strong I am or how strong they perceive me to be, really mean?  It occurs to me that the person commenting is really saying, “I couldn’t do that” or even “How do you do that?”

After three (3) years of this living with MBC experience, I think I’ve discovered a few things about myself and about how I’ve taken the hand I was dealt and made something of it. 

First of all, I’ve realized that learning I have MBC broke me.  It broke my sense of self.  It broke how I viewed my body.  It broke how I viewed the world.   It broke how I view God.  It broke my view of love and caring.  It broke my view of fear and resilience.  It broke my sense of justice and fairness.   It broke my relationships and it decimated the career I’d spent nearly twenty (20) years building.  Acknowledging and facing that has taken me a lot of time, work, and reflection.  

In the beginning, I thought being broken meant I was weak, meant that I had failed somehow.  I now understand that to look closely at the experience and my brokenness is how I move forward. I now understand that being broken doesn’t mean that I’m no longer whole.  I now understand that to be broken just is.  I now understand that we often have to be broken to heal.

To me, being broken means I have the opportunity to put my life back together in a different way. To rebuild from the ashes of a life I thought I wanted, into a life of meaning, a life of purpose, a life I actually want.  Being broken is an opportunity to make something entirely new.

Secondly, I am learning that to be vulnerable is a strength.  

For most of my 41 years on this earth, I have projected a lack of vulnerability.  I have worked hard to project a persona of strength, fearlessness and near invincibility. The few people I let into my vulnerability were curated extremely carefully and my sensitivity to being betrayed was so finely calibrated that it didn’t take much for someone to be booted from that circle.

What I didn’t see before cancer was that the energy needed to continue to project that persona and hide my vulnerability was pretty astronomical.  After cancer, it just wasn’t possible to utilize that much energy to hide.  

So, I decided not to hide any longer.

It has taken a lot for me to be vulnerable to the people around me and to the larger public through my blog and speaking opportunities.  I haven’t always done that well.  I’m still learning and I often fall back into old patterns, old ways of looking at the world, old ways of trying to protect my tender heart.  And yet, when I’ve opened up my heart to others, when I’ve been able to adequately shine a light on what it truly means to be living life to the fullest while dying, that’s when the magic has happened.

I am learning, day after day, that the antidote to anxiety, to struggle, to depression, to the toll of living with a terminal disease, is human connection.  I cherish the connections I’ve made in the MBC community (and elsewhere) have been vital to being able to get up every morning and facing yet another day of living while dying.

Third, I am learning to truly accept myself for who I am rather than trying to be something or someone else.  It feels rather odd to say/type that.  I am 41 years old, I have children, and sometimes I feel as though I should have myself figured out, at least.  And yet, I find that I am always learning more.

A friend in the MBC community, Tori Geib, introduced me to the Enneagram personality typing.  I would definitely recommend it to anyone who wants to understand the why behind what they do.  You see, I’d always been more consumed with the what and adjusting what I did to the expectations of others, not usually delving deeper into why.

Understanding why isn’t about making excuses or behaving badly just because that’s one’s “type,” it’s about understanding what growth looks like and why my gut reactions are what they are.  It’s about embracing the basis and the motivations behind what’s going on and using those foundational elements of who I am to drive my energy into something more productive.  I’m learning and I’m thankful to be learning.

For anyone who is interested, I’m happy to share that I’m solidly an Enneagram Type 8w7.  The information in this way of thinking helps me to identify areas where I need to grow and watch for the behaviors that mean I’m sliding into unhealthy reactions.  This focus on growth and understanding why means that I’m kind to myself, I identify what I need to work on, and then I can use what I’m learning to move towards a more healthy way of being and behaving.

And so, I’ve come full circle.

When people comment on how I’m strong, I’m able to see that as the truth.  I am strong, pretty damn strong.  I’ve been broken and I’m still here.  I’ve had bad days, weeks, months, years and I’m still learning and growing.  I’ve made mistakes and I’ve hurt others and I can forgive myself, seek forgiveness from others and move forward.  I’ve been dealt a hand that is not easy to handle and yet I’ve found a way to be available and helpful to others, to advocate and to make a difference in the time that I have.  I am committed to make the most of the time I have and not putting off what is important to me, to my family and to my community.

This living while dying is hard stuff.  It’s not easy and no one is truly successful going it alone.  To be strong and to face what it means to live with a terminal diagnosis with any amount of “success” is simply not a solitary endeavor.  We are #StrongerTogether and, as my dear friend, Emily Garnett, who we lost to MBC in March of 2020, the MBC community is the worst club with the best people.  We stand on the shoulders of others who have come before us as those who come afterwards stand on ours.

I’m thankful to be part of this legacy of strength and to play my part in empowering those who come after my time on earth is done.

Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

Published

40 thoughts on “Strength”

  2. You state so eloquently that which I cannot. Thank you for putting a voice to MBC. Our physical experiences may differ but the similarities in the psychological effects are like looking in a mirror. I appreciate your honesty and willingness to share.

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  5. Thank you for this post. If I were to describe you are strong, it would be in that you have chosen to share yourself here in the public and be very vulnerable and you most certainly do not have to do that. That takes some serious guts. And at the same time, I can see how you might feel like you don’t have any other choice, that to be vulnerable and share yourself helps keep you together at the same time. Anywho, I hope you are having a wonderful day and spending no time wrestling with insurance companies today!

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  6. Abigail, my weekend was rough. I was down about so many things and felt nothing but physical symptoms brought on by my latest issues. I finally had a somewhat satisfactory cry yesterday while on the phone with a friend. I felt a fraction better. Not much. Strength is so much more than resilience and determination. You are spot on that it also rises from brokenness, vulnerability, and for me my tears. I believe this post is going to be one of my favorites of yours. 💕

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    1. I’m so sorry that your weekend was so rough and I’m so glad you were able to let some of the tears out in that call with your friend. We’re in such a similar “boat” with MBC and I’m so glad my musings resonated with you. ❤️

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  8. Amen to all of this Abigail. You have said so many things that I would like to have said but you have done it so much better than I ever could. Thank you for putting those thoughts into words and I know that I am not suffering from terminal cancer but from the effects of a serious cancer. I think you know the circumstances of my life And different though we are there are many things that are very similar and in a sense I to think of living whilst dying. I love the way that you have spoken about strength and also about being broken strangely I was talking to a priest friend of mine about just this at the weekend. I feel indebted to you For putting all of this into words when I couldn’t manage to thank you so much Abigail.

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      1. It certainly is abigail. Sometimes we can think we are off beam or something (not that that matters though) in thinking what we think or feelinggwhat we feel. Gave you written anywhere in your blog about how your thoughrs re God have changed? ❤️

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      3. Oh thanks so much Abigail. My views have changed a lot. I was really interested to discover your thoughts. Thankyou so muc.. I will read it.

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      4. Bless you Abigail. I too was a Christian. Much has changed for me and I was a theology lecturer (which is of course very different to having faith, for lots of lecturers). I have wrestled with faith, but that is a long story! I used to be a Methodist preacher! Anyway, I still believe and have a very different kind of a faith now. I will read with interest what you have written. Thank you so much. It is a strange journey isn’t it.

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      6. Thank you Abigail. It is very moving. I have read it and will look for your next part. For me, things keep changing, but something always remains. Bless you. Love and light to you.

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  9. Lately, I’ve been suffering from anxiety and depression. Something that wasn’t even on my radar when I was first diagnosed with prostate cancer. I’m still learning to cope and found writing and sharing openly and allowing myself to be vulnerable extremely helpful. It’s liberating to bare your soul and something I used to avoid as men were taught not to share their feelings. Even though our cancers are different, we share the same mental health issues, and it’s so nice to know we are not alone. I especially like your quote, “I am learning, day after day, that the antidote to anxiety, to struggle, to depression, to the toll of living with a terminal disease, is human connection.”

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    1. I think many more people struggle than most are aware of and I completely agree that it’s liberating. Bringing our struggles into the light means we no longer suffer in silence and that takes away so much of the burden, I think. Love and hugs to you.

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  10. I’m re-reading Viktor Frankl’s MAN’S SEARCH FOR MEANING–and I found your words, Abigail, complementing Frankl’s thoughts. Thanks for the power of your insights: hide no loner; feel like glass; vulnerability. Brilliant and instructive. Thank you.

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  12. Whenever I read your words I see Strength. Funny, but I struggle with people telling me this, too. Mostly I get angry cause I just want live my life and I feel like I dint get a choice but to plow forward. Thanks for your words!

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  13. First thank you my friend. I find vulnerable to be positive – we let our barriers down and although we release what’s hidden behind we’ll constructed walls it also allows love inside – it leaves us able to feel empathy not pity but not only for others but ourselves. I used to hear “if anyone can beat this you can you’re so strong.” That was resilience they did not see the immense difference between the two. And I’m not so fast to raise my hand anymore. When I was first diagnosed I volunteered for everything, I started my blog, I tried hard to get my blog read instead of organically allowing people to find me with using the search engine optimization tools in a very methodical way allowing myself to be found. It takes a lot of courage to admit we “don’t got it.” Hearing one say “you got this!” amazes me in that I’m not as strong I guess as I seem to be. Just because I’m lucky enough and I ask for and demand what I need from my medical team doesn’t make me one bit more insightful to how to deal with this than anyone else.

    By the way I have exactly the same enneagram number as you do. I’ve been studying for five years since I was introduced to it by Michael Lerner at Commonweal at the cancer help program. There’s several videos on YouTube through the new school at Commonweal on enneagram-if you’re starting out with self discovery through enneagram I can’t think of anyone more insight than Michael. He’s a mentor and friend and a person who has given his life to service to the cancer community- he’s the reason I call myself a writer before a metastatic breast cancer patient. He’s a gift that I found by seeking out cancer retreats after going through my first year after diagnosis. He is a big believer and student of enneagram and set my curiosity in that direction. I have a few books I’ll toss in the mail if you’re interested as well. I’m a big believer in sharing hard copies of books (there’s a few audio books but they’re difficult to follow because of the exercises in some of them) Peace to you in this vulnerable life. May the love that’s in your path be a reward for letting yourself feel the spaciousness of vulnerability. As Frank Ostaseski, author of the five Invitations one of my current favorites, said “It seems this is what comes of being vulnerable. When we relax the clinging to our treasured beliefs and ideas, soften our resistance to the blows of life, stop trying to manage the uncertainty and hold ourselves more lightly” I feel lighter than I used to. Dunno. Maybe it’s just my temporary high blood sugar talking 🤣

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  15. Reading your blog brought me to tears. I am also going through this. All of my life people have told me how strong I was and that I could do anything. About 6 months I was diagnosed with a terminal illness. I am so sick and tired of hearing from people you are so strong. I feel like I am building a new life for myself. One of living one day at a time. When I hear that comment you are so strong though takes me back to the old strong person I was. I wish like crazy that I was that old strong person. I am not though, however, I do have courage and strength in other areas that I never imagined I would.

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