For those of us well-versed in epilepsy, the connection between seizures and their psychological effects is a no-brainer (pun intended). However, the lack of available providers and treatments is all at once infuriating and devastating. This is a topic that comes up all too often during my interviews for CURE Epilepsy’s Seizing Life podcast. It is also one that this week’s guest blogger, Yarrow Rubin beautifully describes in a powerful essay.
Inchstone celebration coming at you! I’m not entirely sure when I reached it exactly, it sort of snuck up on me, but at some point I started thinking about the future again. And not just thinking about it, but actually looking forward to it – even planning for it. Some future thought is inevitable: schedules must be made, kids activities signed up for, babysitters booked. The kind of future thought I’ve caught myself engaging in is more like daydreaming or borderline manifesting. It is equally hopeful and utterly terrifying.
“Pause it.” I told Miguel. We were on our couch watching The Last of Us. “I’ve had a realization and I need to say out loud so I don’t forget it.” Miguel acquiesced accustomed to my sporadic needs to verbalize my revelations. “Why is it that most of the time when a tv or movie character experiences deep loss, especially the loss of a child, they are forever depressed, sulking and generally unlikable? I mean its no wonder that people struggle as much as they do in grief and guilt when their main entertainment examples are so miserable!”
It dawned on me this week that I am real-time witnessing Jackson’s gradual shift from childhood to pre-teen teendom. That we only have years (months?) of childhood left. And we are all clinging to his vanishing childhood like Strawbaby to a piece of cake.
In honor of Rare Disease Day (which was this past Tuesday), I am highlighting the story of a fellow rare disease zebra: Fiona Wilson, who was born with Turner Syndrome. Rare diseases can be so very isolating because they are, by definition, rare. It makes finding a community that understands imperative. Fiona’s diagnosis may be rare, but her experience is far from it. And her lessons are universal. Just ask Stephen Sondheim (“Alexa: play ‘You Are Not Alone’ from Into the Woods”).
Strawbaby is officially older than Adelaide ever was. I thought that milestone would hit harder than it did - but the day came and went. So I hoped I might also make it through Strawbaby’s fourth birthday unscathed. And I almost did, until we sat down at the nail salon - or the nail salam as Strawbaby called it. Still, I was proud of myself for how I managed the day even if I slipped a little at the end.
This is not a drill. It’s happening. It really freaking happening.
My publisher let me know that Normal Broken would be available for online presale at some point in February. Sooo… I may or may not have been stalking Amazon and Barnes & Noble each day to see if it was listed yet. Then as I refreshed my search, there it was: a close up of a large green palm-style leaf with a little red ladybug crawling along. Normal Broken: The Grief Companion for When it’s Time to Heal But You’re Not Sure You Want To is available for purchase.
I did it! I had my author headshot photo shoot this week and I didn’t even need to take any Xanax to get through it. My friend and make-up artist Kat assured me it would be like riding a bike and she was right - by the end I was even having fun. From where I sit now it’s hard to believe that I used to have my picture taken for a living, which got me thinking about 25 year old Kelly and what she would think of my life now.
Every three years or so Miguel and I have taken a just-us/no-kids vacation. We cherish this time together where we get to be just us, as a couple, away from the exhaustion of regular life. Last week, in Mexico with Miguel I found a certain stillness, a peace and acceptance of this incredible life I’ve been gifted. Reentry into our typical life though has not been nearly as smooth or successful.
My body image issues felt like a dirty dark secret and while I assumed that most people felt negatively about their body shape, I was also simultaneously ashamed that anyone would find out how I felt about mine. Because I had normalized my negative body thoughts, I had never addressed them. There’s nothing quite like sharing your writing publicly to force you finally do something.
For decades now I have struggled with body image and an urge to obsessively control that image. I haven’t talked much about this because honestly, my story is a dime a dozen. But with New Years’ resolutions, Miguel and I’s upcoming trip to Mexico and booking my author headshot photoshoot - my body has been on my mind a little more than usual lately and it’s growing harder for me not to obsess. So, as always, here is me being honest with you all and where I’m at.
It’s been three weeks since my last blog, yet I was still struggling with what to write about this week. Before going on hiatus I assumed that my first blog of the new year would be inspired by some holiday effected grief moment. But our Christmas and New Year’s celebrations lacked the emotional ferocity of years past. In fact, the holidays felt – dare I say it – normal.
