She had been ill for a very long time, losing her ability to walk, to use her arms to paint (she was a skilled oil painter and sketch artist), to see, hear, and then to talk.
What’s interesting, though, is that for an AF patient, she lived an extra-long life. She died at 67 when most AF patients die by their mid-40s. Her life partner, Jonathan, took excellent care of her right up to the end, and maybe that was the reason why, or maybe because she comes from a long-lived family, the parts of her genetic makeup that were not the cause of her ataxia were the cause of her longevity.
We may never know, although a researcher in Albany, NY is studying her pancreas—where AF begins–to see how different it may be from the pancreas of other ataxia patients.
She was super smart with a genius IQ, taught herself to speak Scots Gaelic, wrote poetry like nobody, and loved animals: dogs, cats, horses and wildlife. She loved the outdoors, too, and one of her most enjoyed activities was sitting in the sun, soaking up the rays. She loved to go on car rides in the Vermont countryside. I think she imagined herself walking the fields, or riding a horse across the hills. She never told us.
Why am I telling you this?
First, I’m sad to lose a sibling. Sad to have lost her by a disease that had robbed her of so much her entire life. Sad that she’s not here anymore.
And sad to learn that grieving is necessary, overall healthy for you . . . and difficult.
I don’t want to talk about her death. It’s actually easier for me to write about it than talk about it. And that lack of talking is making me tired. I want to be able to work, write content, run the workshop I had to postpone, market to new clients. But I can’t and may not for at least another week, and that is actually okay. I have many memories to process and need to adjust to this new paradigm. The work isn’t important relative to the loss of a sibling. Not important at all.
I am also learning that, although I run a business (two, in fact. One of my own and one with my husband), my personal life is not very separate from my business life.
In fact, I left the business I run with my husband because my personal wishes and yearnings were starting to overflow into my workday, which consisted of driving to a retail location and working there until the end of the workday, followed by a long drive home, a later dinner (most often), bedtime, and then rinse and repeat the next morning.
The schedule was killing me—destroying my creative spirit, and making me physically ill from the stress. I opted to work my Write Stories Now company from my home office, and the change has changed everything—my stress levels have dropped, I’m happier, and I love what I’m doing.
And then life taps me on the shoulder and reminds me that some life changes are not only inevitable, but permanent. It’s time to stop and reconfigure.
This is my blog post this week and it took me hours to write it. How do you write content during difficult times? With great care, effort, and sometimes not at all?
Instead of working this week, I’m drinking tea, thinking about my childhood when all of my siblings were young and carefree, and waiting for this fog that has me in its grip to lift.
Surely it will lift?