This is what it’s like

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 plain heartbreaking. I’ve disappointed many people who cannot grock the depth of my disability. When I disappoint those I love it’s pretty devastating.

The rub is those who talk to me on the rare occasions I actually can manage a conversation actually have a more skewed view of my capacities than those who never speak to me at all. Since they don’t see me, all they know is that my voice sounded okay for those few minutes on the phone. The fact that the rest of the day I cannot speak nor sometimes get out of bed is lost on those who never see you. I so much want to rejoin the world of human beings I can touch and smell. Oh yes, I do.

Though I write well, that too, I can only do it at brief intervals. I also have a very hard time keeping up with email of all kinds. Again, brief intervals work, but I cannot manufacture the energy to respond on demand. Pretty much ever. I don’t think many people can conceive of such exhaustion as I seem to frustrate and alienate people again and again. Or some people just don’t pay attention and request from me things I cannot do. (this is not a daily occurrence and there are many people who are able to, at the very least deeply respect my limitations, but the misunderstandings happen at intervals throughout this illness again and again, reminding me of all I’ve lost…grieving is an ongoing process when illness robs you of a normal life) I’ve lost the capacity to have normal friendships too and that hurts even while I’m very fortunate to still have many people who love me in spite of my great limitations.

When my brother was dying of cancer he too had this weariness, this deep, deep exhaustion. I did not understand it. I was at times hurt that he could not make emotional space for me, even if only to tell me how HE was doing. That was all I wanted sometimes.  I am glad I gave him that space though. I never challenged him. I respected his distance even if I didn’t understand. Of course it came to an end when he died. My exhaustion has gone on many years now and I, nor those who love me, know when it might come to an end.

I have an illness without a name. So people often cannot figure it out even if it’s described rather explicitly. My sister-in-law often writes me emails in which she asks me to do things. Like visit her in Boston while she is traveling to this country. Or move back to California to see family with her. Why are you in NC she asks? We’ve told her so many times how ill I am. She never asks questions in order that she might better understand my predicament. Only comes with requests of me. Requests that indicate she has not understood that I can’t leave my house on a daily basis even if I want to (and this in spite of being told this very fact several times). It’s so odd to me. This inability for most people to understand grave and chronic illness. It’s odd and painful. Sometimes I just want to stop communicating with people at all. But that is something I cannot do it seems. I love people as much as it’s difficult now to interact with them now and I do trust that this will change in time as I continue to learn how to live with the limitations I have.

For those who understand what this is like I  have a section at the top of the page to support those with Chronic Illness. Check that drop-down menu too or click here.

Update 2017 — See also: When medicine and doctors almost kill you…

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About Monica Cassani

Author/Editor Beyond Meds: Everything Matters