I get it now

fullsizerenderMy grandmother was a very unusual woman. Set in her ways and her home. Never “needing” to get out. In fact getting out of the house was quite an event in itself. Just heading across the street to chat with a neighbor she’d lived across from for 40 years took hours, no, days of preparing for. Thinking back, we’d invite her to gatherings, celebrations and dinners, her response was always the same, “we’ll see how I feel.”  She certainly wasn’t lazy. She kept busy “working, and working” in the house moving things around, cooking and cleaning. She was always dressed and her hair always pinned in a vintage 40’s style. I hardly ever saw her sitting down, and if I did, it was never on the more comfortable choices of furnishings she had. When I slept over, she was last to bed and first to rise. She was a chatter box to put it mildly. She had a tendency to ramble on about nothing of interest or importance to those around her, and continuing on even when no one was in the room to listen any longer. She complained a lot too. About how Grandpa was always off helping out the neighbors, or her aches and pains, pointing out her bulging veins and showing off her crooked, misshapen fingers. My cousin and I developed the perfect impersonation of these complaints, contorting our fingers, we kept each other laughing for hours. We didn’t laugh when Gran was going on about it though. Nope, we were planning an escape route and a hiding spot so we didn’t have to endure the incessant chatter and hovering. Gran was famously avoided by kids and visits from the adults were very limited by just about everyone in the family. When I became an adult, it really took a lot of mental mustering for me to go to grandmas house. We didn’t visit very often. My own kids hardly knew her.

I get it now.


I’ve been dealing with autoimmune & chronic pain for several years. My most recent diagnoses, Lupus with overlapping RA. In addition my already existing Thyroid disease and Fibromyalgia. My body fucking hates me. My very first exposure to the word Lupus was way back in ’98. The arts and crafts world was going insane with scrapbooking and little shops were popping up in towns all over, filled with scrappy goodies all the crafters wanted. I was very lucky to have a store open up just blocks from my house. It was great! But shortly after it opened, maybe 8 or 9 months, they started packing up and closing out everything. When I asked the owner why, she replied, “I have Lupus.” I had no idea what it was or what it meant, but I imagined it had to be severe enough to close a business at its height of demand. For some reason, I’ve never forgotten the moment she said those words to me. My diagnoses is very recent, but I know I have had it a very long time. I just started taking the Hydroxychloroquine today. I instantly had diarrhea and hard waves of nausea which brought on chills and the need to use alllll the hot water the tank would provide. I don’t know what it is about the shower. It provides this magical portal to ideas, thoughts, memories and understanding that I just cant access any other time. All of which usually fades away just like the steam in the room. Today I fought hard to retain all the notions the shower gave me. Especially the deeper understanding of Gran. I’d bet money she had an autoimmune disorder. I wouldn’t be surprised if it was Lupus. Man, if I could talk to her now… I’d definitely listen to her. She was indeed an introvert. Like me. She positively had anxiety. Like me. She had to have felt lonesome. Like me.  I used to cringe at the thought of being like her.  I get it now.

I’m Sorry Gran.


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