Unspoken Ink

Many people reading this blog post will know that I have a Bachelors degree in English with a Literature concentration. That basically meant that once I got the general education classes out of the way, I spent three (3) years in college reading a variety of literature, then analyzing and discussing the meaning, themes, or lack thereof. Once I graduated from UCF and went to law school, those same skills came in quite handy, but for a completely different reason. No longer was I focused on uncovering the symbolism in the word usage or discussion the themes of a variety of works, I was focused on the issue, rule, analysis and conclusion (IRAC) and trying to survive the Socratic method when sometimes I had literally no idea what was going on. At least I’d mastered the art of sounding like I knew what was going on in my literature classes, it was much harder to fake it in law school. Plus, all of a sudden I wasn’t the most intellectual, the fastest to make connections. Suddenly, my classes and the assigned reading was hard and took all of my focus and effort.

I left the art of reading behind when I went to law school and then left it even farther behind when I started working. Yes, I still read for fun, but I mostly focused on light reading to escape from the seriousness of dealing with legal cases or read books that would help me develop some necessary skill, leadership or otherwise.

I re-embraced my rusty creative writing skills once I was diagnosed with Stage IV metastatic breast cancer and started my blog.

Writing was fun again.

Instead of using my ability to put words together to accomplish some goal, I could write with no apparent goal. I could write for the sake of writing. Deadlines were no longer looming and time was available. My energy level is nowhere near what it was before obtaining a terminal diagnosis and the side effects that come from the medical interventions and necessary medications; yet, now there is space for me, space for me to write.

Writing has always been how I work out my feelings. When they stay locked up in my head or wherever feelings are, they are intruders, inexplicable and unknowable. When I can lay them out in black and white, with maybe a handy metaphor to make some sense of them, I can understand them. I think I’ve always been this way. I can focus on the here and now, but feelings often make me uncomfortable to the point of wanting to run away.

Writing keeps order.

The rules of spelling and grammar and structure give me a framework.

Without this structure, I feel awash, drowning in emotion, most of it dark and unwieldy. There just aren’t enough words or images that convey the reality of living with a terminal diagnosis, to seeing what was slip away, to watching everything I’ve known and relied upon changed irrevocably.

So I began to write. I began to give some structure to what I was feeling and seeing and experiencing. And it helped.

But I was still missing something.

Blogging is truly a solitary endeavor. I write my posts. I publish them. I add a picture or two and then I go on with my day, with my doctors appointments and the inevitable tasks that come with being a mom and a wife. Sometimes people comment. Sometimes it seems that a lot of people are reading a particular post. Sometimes I get feedback. Most of that is secondary to the catharsis of writing, of creating word images that reflect the moras in my mind.

And then I heard about the Unspoken Ink writing workshop with Lacuna Loft from my dear friend, Meg Chase.

And the sky opened up.

The act of writing and discussing and providing feedback and reflection with other women experiencing something so similar to me has been what I didn’t know I was looking for. Despite the vulnerability of sharing intimate thoughts while we all look at one another through the computer screen via Zoom, it is both a safe and an exposing experience. There are tears, laughter, kindness and yet a fearlessness that is necessary to particular.

I highly recommend this workshop. It is life changing, life affirming, awe inspiring, and oh so necessary.

The workshop is designed for early stage survivors and for younger women; however, despite the fact that I’m stage IV, I am getting a lot out of it. Despite the fact that it would seem that my perspective is darker, more grim, many of the women in the class are dealing with very similar issues as I do. Also, we have a few women who are older than I and that different perspective brings a different level of insight as well.

Bottom line, we are better together and when we are vulnerable together, it builds community, it builds our connection to others and it leaves us feeling less isolated.

Check out Lacuna Loft’s offerings and maybe I’ll see you during the next workshop series!

4th of July

I’ve lived in places where the 4th of July is the biggest party you can imagine. I still remember seeing the fireworks set to music on the radio in Washington DC when I was a kid and I went to law school in Virginia Beach, which has 5 military bases in very close proximity. Many of our men and women in uniform are truly some of the most patriotic people I’ve ever met.

When it comes to my kiddos, we do talk about how the United States is very different from other places. My husband is a naturalized citizen and truly loves his adopted country, so he is able to talk to the boys from his own unique perspective.

Anger and Depression

I was listening to a piece on NPR a few months ago about how Anger and Depression go together.  I’ve heard that a definition of depression is anger turned inward, so this link is not surprising to me.  As an introvert, I’m pretty familiar with the inward turning concept, that’s my normal modus operandi and I’ve a bit of a temper, so anger is not an unfamiliar concept, depression, though, that’s a new one.

I’m aware that there is still a stigma around mental illness, that anyone who relies on medication to manage their pain, mental or otherwise, is viewed differently.  I’ve also heard that cancer patients don’t often tell their medical providers how they are feeling, during or even after treatment.  There is huge pressure to be “fine,” to leave the experience of cancer behind once the active treatment is done.  That leaves so many men and women in a dark place without hope.

Fuck that.

Yep, I just used the “f” word.

I don’t curse often, but this is a subject that I feel rather strongly about.

I’ve been diagnosed with depression and anxiety and I’m taking medication for that since early on in my diagnosis, which occurred in mid-2017.  My normal coping mechanisms weren’t up to the task when I received a TERMINAL diagnosis and I still need help to manage my emotions.  I need help to get out of bed in the morning and I need help to deal with the bone deep anger I feel.  I need help to be able to be present for my children rather than wallowing in a deeply dark place.

My terminal illness is invisible at the moment, at least when I’m wearing regular clothes.  You can see about half of my scars when I wear a bathing suit.  The scars on my legs show where I was cut to accommodate the rods inside my femurs and the screws to hold said rods in place as well as some of the tattooed dots from radiation.  My bathing suits usually hide the scars on my belly from the robot assisted hysterectomy, the oncoplasty reduction where the cancer was removed from my breast, the rest of the tattooed dots from radiation and the two C-section scars.  These scars tell the story of some of the physical affects of my treatment, but they don’t tell the story of the mental and emotional affects.

It’s hard to put into words how difficult a terminal illness is on the psyche.  It’s hard to put into words the ambiguity of continuing to live life and deal with the minutiae of “real life” while dealing with constant pain and scans and the threat of progression and death at any moment.  It’s hard to put into words the affect of watching friends die every day.  It’s hard to put into words how dealing with medical professionals and my insurance company and all the stupidity of the medical system can be infuriatingly complicated.

I can handle most of this most days by compartmentalizing the hard stuff and focusing on what is in front of me.  I also take a good amount of medical marijuana.  Before anyone freaks out that I’m high while driving or taking care of my children, relax.  I am responsible about this.  I take CBD during the day and use THC at night to pleasantly float to sleep.

There are days when I can’t deal.  Literally, can’t.

I don’t feel shame at admitting that I need help, chemical and otherwise.  Seriously, no one is naturally equipped to deal with finding out that death is a heck of a lot closer than one originally thought.

I’ve become accustomed during my life to pushing the bad stuff to the back of my mind and making myself move forward, one step at a time.  I’m actually better at this than I thought; however, being diagnosed with a terminal illness has been a different experience for me.  I’ve had to learn new coping mechanisms and I’ve had to learn to give myself space.

I’m not good at self-care.

I’ve gotten better, but I’m still not very good at it.

Here is my list of the things I’ve utilized to help cope with living while I’m dying, in no particular order:

  1. Yoga.  The combination of physical exertion and the focus on mindfulness, breath, and being present has so many physical and mental health benefits.  If I don’t go to yoga regularly now, I really feel it.
  2. Sleep.  Sleep has really always been a core value of mine, but as a mother and a business owner, sleep started to take a back seat at times.  Now, I consider sleep as part of my medication regimen, it’s an integral part of my self care.
  3. Support.  I’ve dealt with a lot of stress over the years and, frankly, been around a lot of people who I didn’t like and didn’t particularly like me.  These things aren’t healthy, especially on a long term basis.  Now, I focus on being around people who are supportive of me and avoiding situations and people who are toxic.
  4. Medical Intervention.  I see my psychiatrist and pain management doctors regularly.  They help me evaluate where I’m at with my pain and how I’m doing overall, as objectively as possible.  I trust both of these doctors to notice and intervene when necessary.
  5. Family.  I spend a lot of time with people who think I’m amazing.  My family watches me closely and they are quick to notice when there is something bothering me.
  6. Medication.  When I learned I was Stage IV, I started taking anti-depressants.  I’ve taken a few different ones now and experimented with the dosages to get them right.  Right now, I’m taking medication that both helps with my mood and also the hot flashes resulting from my hysterectomy.
  7. Advocacy.  I’m a product of my German genetics and upbringing in the Midwest.  Being useful, helping others, and speaking up when I can makes me feel as though I’m utilizing my diagnosis to make a difference.

What is working right now for me is not what will always work and won’t necessarily work for others.  Perhaps this list and my description will at least spark a conversation for others.  Dealing with the weight of a terminal illness amongst the regular stresses of life cannot be discounted.  If you or anyone you love is suffering in silence, please speak up.  Help is available, but you have to ask for it.

Love and light.

Other places my writing is Published!

Orlando Mom’s Blog: https://orlando.citymomsblog.com/?s=Abigail+Johnston+&submit=Search

Wildfire Magazine: you should do yourself a huge favor and just subscribe to Wildfire right now. The online/digital subscription is fine but the physical subscription where you get a magazine chock full of amazing writing by men and women living with Stage IV metastatic breast cancer in a convenient purse sized paper edition. I’ve written several articles that have been published and if you sign up for a years worth subscription, I’m happy to autograph any article of mine you end up with!

Cancer diagnosis story and updates: https://itsabouttimemets.com/mets-stories/abigail1

SurvivingBreastCancer.org: https://www.survivingbreastcancer.org/abigail-johnston

Nancy’s Point: https://nancyspoint.com/storm-cloud-abigail-johnston-metsmonday-featured-post/

Global Girl Community: https://globalgirlcommunity.com/Living-Life-Like-Youre-Dying-When-You-Really-Are/

AdvancedBreastCancer.net

  1. https://advancedbreastcancer.net/living/scars-seen-and-unseen/
  2. https://advancedbreastcancer.net/living/ask-the-advocates-relationships/
  3. https://advancedbreastcancer.net/living/coping-metastatic-diagnosis/
  4. https://advancedbreastcancer.net/living/coping-cancer-related-fatigue/
  5. https://advancedbreastcancer.net/living/functional-allopathic-medicine/
  6. https://advancedbreastcancer.net/living/medical-mistakes/
  7. https://advancedbreastcancer.net/living/atm-mutation-part-1/

Dealing with prejudice/Racism, PART II

In my last post, I talked about a recent encounter we’ve had with racism where we live. That experience is not over and I’m plotting a few lawsuits as I type this; however, I’ve been struggling with something related to this experience that I want to share.

Let me first say that I trust my husband to keep my children safe. He’s had more than 4 decades of experience with racism and how to deal with it in corporate America as a banker. He understands and gets so much that I overlook.

However

As a mom, I cannot help but look at this situation and be terrified for the future. Terrified that my brown skinned boys will find themselves in even worse situations when I’m not around, when I can’t use my legal knowledge and love for them to protect them.

Isn’t that what every parent wants to be able to do? Protect their children?

The need to protect my children from racism is more than just name calling or looks or exclusion, it’s the need to protect them from literally losing their lives. When I hear stories about children fired upon or killed or beaten or otherwise abused just for being black or mixed or simply “other,” my reaction is extremely visceral. I see my boys in the faces of the murdered children. I see myself and my husband as the grieving parents.

I have no tolerance for people breaking the law and we are teaching our children about the rules, about the law, about how to conduct themselves. They will, of course, fail in some way. They will do something monumentally impulsive and won’t be thinking of the consequences. As we all did as young people.

And I won’t be there for that. Because breast cancer will kill me.

So, while I can, I am going to fight racism. I am going to look for the best way to punish those who are ugly to and around my family. I am going to take every opportunity to show my children how things can be handled. That people have to speak up. That we can’t be silent. We can’t walk away. We can’t allow bullies to thrive.

But I won’t be around forever and my kids will encounter racism in a variety of ways in their lifetime.

I know my husband and my family will do their best to protect my kids.

At the same time, I have a request of every person reading these words. The only way the way black people are treated will change is if everyone speaks up. Everyone changes. Everyone says no, this will not stand. Everyone says to the bullies and the racists, we don’t do things that way.

Will you speak up? Will you be a part of changing how black people are treated?

I am asking because my mixed race brown boys need a world that treats them with respect and I won’t be able to protect them.

March of 2017, ring bearers in my brother’s wedding right after my diagnosis.

2018, ring bearers in my sister’s wedding, January of 2018

2018-2019, beginning and end of school pictures.

An Open Letter to my Husband on his Birthday

I vividly remember the day we met at the Panera in Waterford Lakes. I was so nervous that I think I talked the entire first date and I don’t remember all of the likely nonsense that I spewed the entire time. Yet, you overlooked that as you overlook so many things. You saw through the babbling idiot I was that night and I’m so thankful for that.

The last nearly 11 years of marriage and a few more of knowing you through being engaged and getting to know each other have been intense and fraught with challenges. At the same time, knowing that we each have a partner in handling job loss, infertility, buying, selling and renting houses, family challenges, children, surgeries, health issues, family health issues and all of the other awe inspiring experiences that have happened to us, can often make the difference between a breakdown and a breakthrough.

Just writing the list of all the things we have weathered in our relationship reminds me how lucky I am to have a real partner in all of that. I’ve never felt like I was facing any of our challenges alone. When we’ve needed to make changes, to adjust, to pivot, you are always in the thick of it, always joining me in whatever we have to do. Nothing can be a better example than your choice to leave Orlando with me and the boys and live with my parents after I was diagnosed. You put me and our marriage above yourself and your comfort, something you do naturally and regularly.

As I shared during my toast at Anna’s wedding, you showed me in the biggest and best way that you love me. Ours is not the love story of grand gestures and high peaks and correspondingly low valleys. Our love story is quiet, steady, consistent, loyal, true, trustworthy. Our love story is like us.

Two years ago on your birthday, we were living with my cancer diagnosis but did not yet know that I am terminal. This is the second birthday we’ve been together since we received the news that you will likely be a widower and our children motherless with it 2 to 3 years of my diagnosis. Despite the fact that we’ve both been struggling with this reality, you have put up with all of the things I’ve done and said in order to cope. You’ve given me the room to do what I need to do.

Know this, no matter what happens, no matter where we are tomorrow or 10 years from now, our love is forever. I will always love you and want the best for you, no matter where I am. I may not always show it, but you are pretty freaking good at this husband thing and even better at the father role to our two boys. Our boys, as well as I, know that you love them in visceral and tangible ways.

On this day of celebrating your entry into the world and every day, know that the boys and I love you, truly, madly, forever, bigger much (per M). We appreciate all that you are and everything you bring to our family.

xoxo

Abi

Redemption

What does this word mean to you?

The dictionary meaning I found is as follows:

“1. The action of saving or being saved from sin, error or evil: God’s plans for the redemption of his world.

  • [in singular] a thing that saves someone from error or evil: His marginalization from the Hollywood jungle proved to be his redemption.
  • 2. the action of regaining or gaining possession of something in exchange for payment, or clearing a debt.
    • Archaic the action of buying one’s freedom.

    The origin of the word “redemption” is late Middle English: from Old French, from Latin redemptio(n-), from redimere ‘buy back.'”

    I’ve written before about how going to the Metavivor Stampede and METup Die-In in DC last October redeemed October/Pinktober/Stinktober for me personally. To me, turning the angst that October brings into something productive (or that felt productive) reframed how I thought about a difficult time period. Sort of like taking the lemons life brings and turning them into lemonade or, in other words, taking something not palatable and turning it into something that is at least tolerable.

    Thinking about Redemption in a larger scope becomes slightly more complicated.

    Recently, I’ve been watching a relatively new show, 9-1-1 on Hulu. In his past, one of the main characters negligently caused a fire that killed several hundred people. He feels incredible guilt over his role in their deaths, particularly because included in the deceased were his wife and children. In an effort to “balance the scales” or redeem his life, he vows to save a corresponding number of people and, since he is a first responder, he is in a unique position to do so. He plans to commit suicide to join his family once this job is done; i.e., once he has redeemed his life.

    This example is a bit morbid, but it illustrates how I’ve been thinking about redemption where it applies to me and my diagnosis of Stage IV metastatic breast cancer. The wide and lofty goals I had before my diagnosis no longer feel right, they aren’t representative of the trajectory that my life is taking now. So, I need some new goals, a new focus that reflects what life is like after those fateful words, “you have breast cancer” and “your cancer is now terminal.”

    So, is redemption a balance sheet? A list to tick off in order to fix something? A wider more subjective concept? How does one know when one is done?

    I’m don’t fully understand the answers to these questions yet. I can say that, for me, to find meaning in the experience of living with a terminal illness is akin to a search for redemption. The action of regaining or gaining possession of meaning or purpose is quite strikingly similar to the action of regaining or gaining possession of something more tangible. Evaluating when one has achieved the end goal is very different, of course, but the metaphor still rings true for me.

    I’m still figuring this out. I’m still wondering if I can find purpose and meaning in how my life has changed. I’m still figuring out how to figure that out.

    What I do know is that doing something helps. Doing something keeps me busy and not dwelling on negativity. Doing something shows my children how to handle adversity. I’m constantly aware of how they are watching and taking note of how I do life. I want them to remember that I didn’t just curl up and sleep away the rest of my life, that I put my big girl pants on and fought back. That I have bad days, yes, but that when the good days come, I do what I can that day.

    My boys won’t grow up seeing me going to work every day like their dad does. The feminist inside of me is still pretty upset about that. There are other women in their lives who do work, who do have big and lofty work goals. I try to remember to point that out, that Mommy would be doing that but for cancer. They are too young for that to mean much yet, but I know that their future wives and female friends need them to think that men and women can do that, if they want.

    Maybe my boys and the way we are raising them is my redemption. They are certainly my legacy, the piece of me that will remain in the world far longer than I will.

    Maybe that’s the answer.

    It is part of it, I know. Maybe I won’t know when I’ve reached the point of redemption, of redeeming the affect that cancer has had on my life. What I also know is that I have to keep going, keep putting one foot in front of the other, keep trying to figure this out, keeping doing what I can while I can.