September 9, 2021 - One decade... be present.

It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...

August 13, 2019 the story I'm living




I told Christina that I felt stuck because I'm not independent. The truth is I'm not as dependent as I used to be - I can function pretty well at home. The stuckness comes from something different, from a feeling of "where's my life going?".

I realized the other day that on my blog site, I hadn't said in the "My story in a nutshell" piece, that I was a musician. Well, I was, and I suppose I still am. For five minutes a day when I play my flute. For a few minutes occasionally when I play our piano keyboard. I'm a writer, too, obviously. I'm not published anywhere else. Maybe someday, but for now I have my blog.

I realized that I really don't want to hold my daughters back, or my husband, for that matter. I don't feel jealous, so much as wistful. It's really about what happened to my own life. I ache for the musician I used to be. The connections I used to have. The possibilities. Sometimes I think I shouldn't share the pain, the frustration, as raw as I feel it. But if I want to paint an honest picture, then I have to share, to speak.

I also wonder if maybe I'm really speaking for people who can't find the words, or choose not to share. Part of me doesn't want to share, but then the words start to feel like this impossible weight inside of me. So I'm speaking.

Occasionally I feel a stab of anger, of bitterness. But mostly I feel sadness, an empty, lonely sadness.  Frustration that I live with invisible disorders that are so hard for others to understand.

I want - really, really want - actually need, to find joy, happiness, that I can hold on to - that sticks.  It's very hard sometimes. I know I need to keep busy, keep my mind occupied. 

I know I'll keep going, because it's in my nature. I have too strong a streak of a sense of responsibility.  I also think that life has to, in order to feel purposeful, meaningful, good - to feel like more than fulfilling responsibilities. Maybe I need to shift my perspective, post-illness, on where I find that meaning.



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