When your partner, person, or spouse has a chronic disease, you carry a heavy burden.
They are in pain, they can't control their body, and you find yourself in charge of their duties and yours. In charge of finances, taxes, lawn care, house care, meals, laundry, and parenting, caretaking. All of it.
That is not their fault.
It just is.
This is called living with loss.
With Loss comes Grief.
You know your person is still here. But you grieve that they can't be involved.
You grieve for the loss of the life you had. And the future that will look so different.
And they grieve for the same things from the other POV.
But life doesn't stop.
Loss and Grief travel with you.
But they aren't your only companions.
There are moments of pure joy.
There are experiences to create.
There are dance parties in the dark.
And stories to tell and songs to write.
Humans can feel more than one thing DEEPLY at a time.
If you see me smiling, it's not that I'm forgetting my husband is in pain. It's that we all have a built-in AND function.
We can feel Grief AND Joy. We can experience Anger AND Gentleness in the same moment.
We all live in the middle of Light and Dark. AND we can choose to focus on one, while not denying the existence of the other.
What Can I Say To My Person?
This is hard AND you're worth it.
You're able to do less AND you're giving your 100%. Thank you.
You're not in the way, AND we want you by us.
Questions:
Have you ever had a confusing moment where you felt 2 VERY different emotions? Did you try to ignore one, or did you accept them both as valid?
Do you carry grief from a loss? Do you also experience joy from the memories before the loss?
Do you have someone you can talk about your loss with? Or do you hide from it?
Have you ever used a physical activity to help you experience or work through your anger or grief? (Dancing, Running, Sex, Climbing)
Have you ever used a creative outlet to untangle confusing feelings? (Painting, drawing, songwriting, storytelling)
♥ Sue
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Living with hATTR
There is no current cure for Amyloidosis. 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.
