After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

Remembrance  - Accepting the Unacceptable

Remembrance - Accepting the Unacceptable

I am a private person. I don’t easily share my struggles, as anyone in my (physical) world intimately knows. I mentioned in the Introduction that I was finally swayed to write this because of constant encouragement (really beratement), of one of my pillars; she was a butterfly in front of the most beautiful sunrise. She lost her own short, yet hard-fought battle to cancer last year. It is not something that I cope well with.

In today’s blog, I share something that I shared with her. It comforted her, and she urged me so to share it with others. So, My Dear Angel-Friend, this is for you.

When you have a chronic illness, daily life is filled with a battle of struggles - from the obvious to the “behind the scenes”. While the obvious is one I no longer struggle with but hold hands with, I do have enormous, stuff-in-your-closet (out-of-sight, out-of-mind, we hope) guilt for the upheaval I have caused in my family’s life, especially my mother’s. Her life path was as much affected as mine. My family’s lack of freedom and sacrifice rarely escapes my notice. I am aware of all that I take from them, including their plans, attention and need of care. The guilt is most consuming when I am most weary and emotionally done in.

The only thing I have learned over the years is that you truly have to stuff the thought in a closet and bury it. I have to remind myself (and they remind me, as well), that while yes, they would rather be doing something else, living another path, it would only be if I were well, healthy and there. But my fight is their fight, and they wouldn't have it any other way. And that's okay. I tell myself that it’s all right to accept their love, attention and tender care. My brain knows it, even if my heart has to hear it a gazillion times (that is probably a literal estimation - not an exaggeration). Yet, since my heart can’t accept it, I have learned to find it as a simple gift of grace—one too big to comprehend, but that I couldn’t live without. (Even as I write about it, I tussle with how it really isn’t okay; see, after fifteen years, I still struggle with it).

Goodness knows I am no saint; I am not easy to live with (I wouldn’t want to live with me), and I truly can only accept such enormous acts of daily love in the form of such a large, mysterious gift; the kind you only take because you need it, and know you can never repay or deserve it.

If you have a situation where you are reliant on your loved ones and struggle with the “burden” that you feel you cause, I hope you will remember this: Accepting the unacceptable in this circumstance really is the only way to not just survive, but to thrive.

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