Humans are built to move forward as a race. We adapt. We change. We overcome. BUT when we experience trauma, we dig in, we armor up, or we refuse to budge. Some of us ignore how we feel, and move on without our heart.
We can lose who we are in the process of surviving. Let's talk about it.
Some people can tap into a pool of hard-won resources, including compartmentalization, tenacity, and toughness, for a limited amount of time, but, if they can’t shift down and pull out — the consequences can be deadly. — Brené Brown
Your Strong Heart
You probably hate having people tell you, "You're so strong."So I'm not going to.
We're going to have a heart-to-heart instead.
Going through tough things is tough.
BUT going through life, while listening to your needs, feeling your feelings, and keeping your heart soft is what your heart is built to do.
Your heart is strong enough to carry your brain through dark times.
Your heart is wise enough to tell you what you need.
Your heart is soft enough and vulnerable enough to love fiercely despite sickness or death.
Your heart is a safehouse with rooms to keep treasures, store up memories, and help you fight the darkness with joy and gratitude.
SIDENOTE:
Your heart is so strong, that sometimes it can overwhelm you. It may be tempting to tame it. Or turn the volume down on what it wants. Because your heart is wild. BUT living soft AND strong is the heart's hidden feature.
“The mark of a wild heart ...It’s showing up in our vulnerability and our courage, and, above all else, being both fierce and kind.” - Brené Brown
Your Flexible Mind
You may not know this about yourself. But your mind is built to be flexible.
That is a cool human body feature.
It keeps our race moving forward. It helps us survive. It helps us adapt. And it helps us heal.
It helps us Grow.
Carol Dweck coined the terms "Growth Mindset" and "Fixed Mindset"
It all comes down to the way you think about your brain. I can Improve. I can't do it YET. | Or I'm stuck here. I'm done.
YOUR BRAIN RESPONSES & TRIGGERS
Your brain is good at keeping you alive. Fight or Flight or Freeze.
Your brain is good at recognizing patterns.
Your brain is good at memorizing what comes next.
Your brain is really good a running on auto-pilot. Meaning, it takes time to learn a new response. To learn a new skill.
When you're in a new or stressful situation, and you've had some life experiences, it can be extra hard not to default to "But this is how I've always done it."
New Challenges call for new skills. And New Skills mean your flexible brain is going to get a workout.
Your brain is MEANT to be flexible. It may take some practice.
SIDENOTE: Your brain can change based on your experience. (Neuroplasticity).
Current practice for treating soldiers or other trauma survivors for PTSD, includes showing them proof that their brains are flexible. That their trauma/survivor responses kept them alive, but the triggers can be changed. Only if they BELIEVE their brains can be re-wired, and they don't have to live stuck in the trauma, can they do the actual work of healing their minds. (CBT therapy, EMDR light therapy, and other trauma-informed therapy can all help)
Bonus: You've Got A Stubborn Ass
Most people with a streak of stubbornness, have been told that it's a bad thing.
But what if all the parts of your personality are there for a reason?
Fire isn't good or bad on its own.
It all depends on when you use it and WHY you use it.
Fire can be used to create or destroy.
It all depends on context.
THE GIFT OF STUBBORNNESS
You're going to get through this. Because if you're in the middle of tough things, and you don't lie down on the side of the road - that means you've got a stubborn ass. AND I'm so glad. Because having a stubborn streak in tough times gets a new name.
You've Got Tenacity.
Doesn't that sound better than being a stubborn ass?
(probably you like the sound of both, if you're feeling grumpy about life's circumstances).
SIDENOTE: When I'm feeling DEEPLY, I like to look up words to help me understand. Here are some of my favorite variations on my stubborn ass not being controlled by my circumstances:
rebellious, contentious, obstreperous, and my absolute favorite: fractious.
They all have a different flavor of "I will fight you" and I like how they feel when I say them.
Unlock Your New Features
Ok, so no fluff at the end. Just facts.
If you're reading this, most likely you're in the middle of things that feel WAY too overwhelming. And I want you to know you're going to be ok.
Take a deep breath.
And one more.
And the 3rd one.
Phew.
Now. From this place of calm, let's look at your new features. (You can decide to use them or not).
Flexible Mind Feature
Strong Heart Feature
Stubborn Ass Turbo Boost
Remember, new features take a while to learn. (any new technology can be frustrating).
Here are some ideas to help you practice.
What Can I Say To My Mind?
Wow, I've never had to navigate the health system before. It's ok if I don't know how. I'm not dumb. I'm learning. I can ask someone for help. (People to ask: social worker, case worker, healthcare navigator, another family going through the same thing)
This is new. New things are hard. But I can do hard things. (Say this out loud when you feel like a failure in the middle of being a caretaker or patient. Your brain believes what your mouth says - Tammey Evans Brown)
WOW. That was a big fight. I wanted to escape this situation. And so I lashed out. My brain was trying to protect me. BUT I can think of a new way to get through this other than just fighting or fleeing. Next time, here is what I can do instead. (Brainstorm ideas when you're calm. Create a plan with your partner/spouse for actions you can take next time, or plan a space to calm down, or how you can avoid the situation in the future).
What Can I Say To My Heart?
Hey, Heart. I know you're feeling overwhelmed. Do you need a snack, a nap, a hug, or to call a friend? (The BEST thing you can do for your heart is to listen to it. AND when it hurts, to ask it what it needs)
Ok Ok, Heart. I know you're feeling ANGRY AND GUILTY. That's ok. You can feel them. AND you can let those feelings go when you're done feeling them. You don't have to store them in a room in your heart. (It's ok to feel ALL the feelings. Even the confusing ones. BUT you don't have to keep the ones you don't want. Absolutely no one needs a room in their heart for fear. Or a collection of "If Onlys" on vinyl. Or a china cabinet filled with cracked anxiety. Feel the feelings, then release them.)
Heart! WOW! That was SUCH AN AWESOME MOMENT. And now, you're feeling happy and full of joy and energy. And guilt is creeping in because you're happy, and there are so many hard things happening to your person, or around the world. Let's pause the guilt and think about it. Joy and High Energy, and Gratitude are how we fight the darkness. SO, instead of feeling guilt, we're going to change it to gratitude. HOLY MOLY, you're so good at fighting the darkness with this JOY! Let's absolutely store this in a room in our heart so we can look at it later. In fact, I'm going to go write this memory down. (Just me, or is it sometimes hard to feel joy without guilt? Sometimes you have to feel feelings and release them, but sometimes you need to shift focus to another feeling.
You're allowed to feel joy. You don't need to feel guilt you don't own.
Press pause. And then decide.)
What Can I Say To My Stubborn Hide?
Am I being stubborn or tenacious? Am I fighting help or my circumstance? (remember, your stubbornness is like a turbo boost. It works best if your car is aimed in the right direction)
What motivates me to move my stubborn ass? Is it fighting for someone else? Is it when someone tells me I can't live more than 3 years with this disease? Is it helping me, or keeping me from help?
Where can I use my tenacity to help other people?
You're stubborn, strong, and flexible. You've got this.
♥ Sue
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Living with hATTR
There is no current cure for Amyloidosis. – YET. But in the last 9 years, there are significant advancements in NEW medications that can slow the disease down, and change the story.
We believe that living with hATTR = living with hope.
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ABOUT THE AUTHOR
My name is Sue Skavlem.
I'm a visual messenger – not a doctor.*
My husband has Amyloidosis. And it took me a year of googling to understand what an "adult-onset multi-system genetic disease" was.
After learning that "Amyloids have the tensile strength of steel", I came up with the "Accumulating BBs Theory."
My hope is to promote awareness of the disease, update our friends & family on our journey, and create resources other families with hATTR can use.
*Information in this article is meant to inform, but is not medically reviewed, nor should it be used to self-diagnose. Please talk with a medical doctor about free genetic testing if you or a loved one may have hereditary Amyloidosis.
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