so your lymie went M.I.A…

IMG_1754My dear friends,

It’s been a while since my last post, and the reason can be summed up entirely in this picture.

We all laugh at silly memes like this, but there is a lot of truth in this for people who are chronically ill. I laugh at this photo not because it’s silly and ridiculous, but because it’s exactly how I feel much of the time.

And then there is a part of me that doesn’t laugh. It’s frustrating how true it is. Many of the sick people I know, including myself, fight against the guilt of how many things we “ought” to be doing, or “ought” to have done, people we feel like we’ve let down, and people we feel we are letting down in this very moment. And yet all the “fight” we can muster is to breathe and maybe blink…

When your Lymie loved one goes “dark” (my term for going “M.I.A.”) for a while, rest assured that it’s frustrating, it’s necessary, and it’s disappointing to them. I want to plead with you not to take your Lymie loved one’s radio silence as a statement about you. It is merely a statement that they are fighting with everything they’ve got to get through a debilitating wave of symptoms.They are trying so hard just to make it through the day, that even very important, dear plans fall away.

For my part, I so badly want the people in my life to know that I love them even when I’m not around. I try my best to communicate that love… But I know that I’ve not always communicated clearly, and that loved ones haven’t always felt “in the know”. I am always wanting to do better. I’m always wanting to learn how to communicate in the most helpful way. BUT, it takes practice for me, and it will take practice for your Lymie loved one as well.

Can I just say… I know it’s deeply hard for both the sick person and for the loved ones—so hard for both that it’s even difficult to express in words. The person with the illness has the responsibility of learning to be cheerful in the midst of great disappointment, learning to “fight” to get better when they have no energy left, and learning to communicate with you about an unfolding life that is foreign to them. Your role—should you choose to “lean in” to being in this with them—is to learn to be unrelenting in patience and forgiveness, to be compassionate to the point of bringing happy tears to their eyes, and when you don’t see your Lymie loved one for a while, or if they take a while to get back to you, to simply assume that they love you dearly, but are focused on breathing and blinking right now.

Typing these words is hard for me. When I intentionally spend so much time being cheerful (because it’s who I am), it is hard to be more serious about the pain and sorrow of it all… particularly the emotional pain and disappointment of misunderstanding and “space” between loved ones. I always want to end on a happy note, but a sobering ending feels more appropriate today. I hope you feel the affection I feel for you, and the compassion that I have knowing the depth of sorrow that you feel in this limbo time.

May we all grow in understanding, compassion, patience, and love. Disease is sobering, but it can also be a tool to bring great depth and richness to relationships. May you find that to be true of yours.

Blessings to your Lymies and to you, their loved ones.

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