1 year ago 💘 for day 191, 2020 with 759 words.

The never list

I got a haircut the other day. It had gotten quite long, for my doing, and so I had my mom lob it all off again. Before long I had the semi-bob that I was sporting in the photo on my about page on my art website again. When I saw that photo again recently I thought about how I needed to update it, since it looked so outdated.

Ever since my haircut, when I look in the mirror I look old. It's not the cut. It's the face that looks at me from behind the haircut. It's a face that looks strained. A face that has been pulled taut from holding in the pain. I thought about that as I walked away from my reflection. My face looks pained. And of course, that's just what it is.

I spent random moments last night and this morning falling apart in tears. For the first time since getting the diagnosis, I felt crushed. My reflection told me, I felt broken. Old. Older than I'd ever been. For the first time this diagnosis didn't feel like a starting point, or a point of reference to use as I move forward. It felt like a death sentence. A living death sentence. One where I could look forward to many decades of pain. Many decades of seeing my connection to the world fade away. A life of being happy for everything everyone else got to do. That I didn't, and wouldn't, ever get to do again. As I was falling apart, my mind running in circles, I started compiling a never list.

I'll never.. Go to lunch outside again. See my friends again. Go for dinner in a fancy restaurant. Eat Ramen. I'll never.. Travel again. See the Japanese countryside. Visit New Zealand. See Taiwan or Indonesia. Do that bike tour across the UK or Norway. Visit any place that isn't my own. I'll never.. Get married. Have a family. Make new friends. Learn a new skill. Open a cafe, or shop or gallery or bookstore. I'll never.. sit in a hot spring. Go to a concert. Go to a festival. Play laser tag. Finish 30 days of yoga challenge. Do yoga. Make love to my boyfriend with abandon. Over and over as if it could sustain us better than any food ever could. Forget about the time. Let the day take me from place to place, discovering events, people, places, as I go. With an open mind and an open heart. I'll never be surrounded by friends as they chatter away, making stupid jokes and laughing. That warmth in your belly from a mixture of alcohol, love and joy. Bike home in the night after a lovely night with music in my ears and butterflies in my belly, with that summer breeze that is just on the right edge of chilly. Bubbling with joy from a night well spent, so happy that I can't help but laugh out loud, dancing my bike from side to side on an empty street in a sleeping town. I'll never.. feel like myself again.

I felt.. Heartbroken. I still feel heartbroken. But maybe, the pieces are a bit closer together. My attempts at inviting friends over are failing. My brother and I still haven't talked and apparently he hasn't spoken to our parents either since our falling out. I'm in pain all over. But I'm not crying all the time anymore. Because my love came to me. And held me. And made me a sandwich and quietly, with no big actions, put the pieces a little bit closer together.

I don't know if it was the walk after, the new CBD oil I bought, or just that my period is tapering off (thanks for the surprise hormonal rollercoaster ride female reproductive system!) but although writing this out chokes me up, I feel a bit better than I did. Less broken. I grabbed my copy of fibro manual again and even just reading two paragraphs made me feel like there is hope. There are explanations. There is research. There are possibilities.

Sometimes, saying never makes me help come to terms with my reality. I don't have to worry or stress out about doing X because that is no longer an option. Door closed. But maybe never shouldn't be the word I go to. It closes off too much of myself.

..did I mention I also ordered an inflatable bathtub? So if nothing else, I've got that to look forward to ;)

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By Leonie Jonk 💘

Artist & Spoonie I write about my life as an artist and as a person with chronic pain, the struggles, the rewards, the inspiration & the downfalls. Oh and occasionally the odd piece of fiction :)

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