This is what it’s like

Everything Matters: Beyond Meds

I mostly only write. I rarely speak even with my husband. We often communicate via internet when I am having trouble speaking. It’s changed some now and on occasion I can talk more now, but for a long time I communicated solely via writing.

I write through a haze of exhaustion and pain. One in which I’m often unable to talk, but writing works somehow, often it works very well. It leads to many misunderstandings about my capacities by pretty much everyone except those who’ve seen me at home. There are only two people who have seen me at home often enough to understand. My husband and a lovely hospice chaplain who came to me via a volunteer program. She offers me reiki and love.

I find it very frustrating that what my life is like is so invisible even as I communicate with hundreds of people. Sometimes it’s just…

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