I have photos waiting to post. Drafts waiting for polish. A zombie story waiting for writing-life (or un-life, or after-life? )
Keep waiting. My world is the couch with an occasional trip for more orange juice in the kitchen. I’m not sick this time- thanks goodness. Ian has a cough and fever. He’s in good spirits, but he needs serious downtime. And he does not like to be ‘by himself’.
And I have medicine drama, as I was running out of samples, then insurance wouldn’t fill a prescription, so we tried something else. And that something else spun me out for three days before I quit. I know some medicines take time, but I had a bad feeling about it all and I trust my instincts. So I’m full circle back to ‘as needed’ medicine. Which ends up being every day, but still… I’m going to call to see if there might be a pain specialist anywhere near here. I’m sensitive to many medicines- lots of side effects. Not sure why. The quest for relief continues.
My sick boy is holding one arm for comfort while my girl shows off her Valentine’s loot from school. Today reminds me about the bonds of families and friends, the enduring forces that bring us together. I wish you a day of togetherness
I like writing because it makes me reflective. This past week, my well ran dry. The words were dust in my fingers. I could not mold a thing. And the slightest puff of air made all my efforts collapse. Writing every day in September was a good exercise. I enjoyed all the creative discoveries. So . . . what happened?
I think back on my life, and I see an ebb and flow, like the moon’s phases, where energy is sure and strong for awhile. Photographs, writing, socializing, all of it is sparkly-pleasing. Then, I hit a wall. Or fall in a hole. Or run out of steam. Regardless, I get quiet and still. Hibernate awhile. Let opportunities fizzle.
Because I am tired. Beyond the physical tired. Mentally, emotionally, creatively tired. And the things which were fun, which were a glorious defiance, are not fun anymore. They feel like work. It might last a day or a week, or I’ve had a few bad spells that cover months in dark clouds. I guess it could be called a mild depression, but it’s not that I’m sad. I’m just . . . quiet. I don’t think there’s anything wrong with the cycle. It’s just why I can be a difficult activist, artist, and friend. I make wonderful plans and then . . . I’m tired.
I so appreciate the people who can understand me. Thank you for your kindness. Your patience.
Ian is starting preschool so I’m optimistic about getting back into the routine. This month is CMT Awareness Month. I talked about how we share our stories in the disability community. How do we educate about our challenges without feeling tragic? How can we raise awareness about all disability issues?
More questions than answers.
And cool stuff for CMT Awareness Month. Melissa and I are both blogging daily. She is at My Life With CMT. Gretchen has a wonderful collection of art by artists hoping to raise awareness of CMT at Art de Cure. I will be guest blogging at The National CMT Resource Center soon. All kind of exciting stuff. And of course the Charcot Marie Tooth Association has plenty of events, too.
Thanks for being patient with me.
And, big news! Giovanni and I are starting a dedicated technology podcast. We were cramming so much into our time, and we kept finding stories that would interest everyone (not only those interested in accessible tech) so we started the Right Click show. Stay tuned!
A quick post as I pack up for the hospital. I will be so glad to be giving after-reports. All the anticipation is crazy. So good thoughts today. The surgery should be done by within hours. Hurrah!
Anika at the park. Her teeth are growing- no more reverse-vampire . The park has great matting which created a lovely marbled effect. This was a picture where I called her name and snapped it before she could really pose. The quick surprise
Hello! I am a writer, teacher, artist, photographer, crafter, and mama. I started this blog to celebrate everyday life. I have two children that are magic. I want to capture these amazing years for them.
I also have a degenerative neuromuscular disorder called Charcot Marie Tooth that causes nerve damage, leading to muscle atrophy, joint problems, and more.
I want to rewrite what it means to live with chronic health challenges. I started the Disability Community Podcast to share ideas about living well with limitations.
I love technology. The Right Click podcast finds the latest and greatest- especially for accessibility.
I am also co-creator of Forest Fairy Crafts. We love whimsical crafting with children.
I teach kindergarten/first grade at the Nevada City School of the Arts (part-time), take many photos, and write indie-stories. Life is an adventure. I adore java-chip frappuccinos, beaches with easy access, and werewolf stories.
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