I am extremely enthusiastic right now about, well … everything. To the point of being annoying, I’m sure, but I’ve never believed in subtlety. The “completely out of left field” life-changing mental shift that I am in the middle of has me wanting to be everywhere, to see everyone, and to tell everyone what they mean to me.
Life is too short to not go for it. To say the things. To do the stuff. And strangely, while patience has never been my area of strength, I’m also finding myself making space for it now. Many things are worth the wait. Because for Me, now, it’s no longer about rushing to do everything on a rare “good” pain day. What if that day doesn’t come for weeks? Life still gets in the way of life. Extreme pain and fatigue days are still going to be frequent. Busy work periods are still a thing.
Somehow though patience makes the moments even better now. Because I’ve realized that they can happen even when I’m hurting. I couldn’t see how to make space for that before but it’s no longer the boss of me. If I’m going to be hurting all the damn time anyway, I might as well have some fun.
For far too long, pain has been my entire existence, wiping away who I used to be before. I have felt like a shell of a person, accepting that “this is just my life now”. Years of multiple diagnoses, doctors gaslighting me, months of all day long excruciating pain, and barely enough energy to even exist, these things have felt permanent.
My illnesses have defined me. They have influenced how I interact with friends, with lovers, with family, and the world. Pain and suffering have so deeply become my identity that I have dulled myself, and taken away my sparkle.
Being seen recently, *truly* seen by someone important from the before times, it reminded me that there is more. That *I* am more. That life is more. And that connections are important. That following your heart, and sometimes your bits (yes I said it, have we met?), is worthwhile. That there is joy to be found in other places than *just* baseball, cats, movies, and all of the things one spends money on when faced with eternal doom and gloom.
I will still be grumpy and sad when hurting sometimes; this isn’t a post about happiness. This is about being able to accept it more. To doing things anyway, even when it’s extra hard. Because life is worth living.
In the past few days I have reconnected with people whilst being in tremendous pain. I have gone to places that physically hurt, and had to take extra measures to protect myself. But, as much as I felt the hurt – and feel it intensely now as I write this – it’s secondary. It doesn’t deserve centre stage.
Because it isn’t who I AM. It’s what I deal with.
I get it. If a fellow spoonie came to me and started preaching about “just doing the things even when it’s tough”, I’d want to punch them in the face. I won’t do that to you. I honestly don’t have any advice on how to make your own mental shift. Mine has been a complete surprise, SO complicated, and includes lots of overlapping feelings about identity, (open) relationships, kink, survival, and of course, pain.
There is no magic button to suddenly convince a depressed brain that it should feel better now. I’m riding some highs but I know there will still be lows. But deep within, things have definitely shifted.
There will be plenty of times when pain will continue to win. When my enthusiasm will be defeated by its invasive and hateful nature. I won’t always be able to do the things or see the people. And there will be other times when I will be able to, but it will be much harder to get through than I let on. No amount of enthusiasm can cause it to go away.
But it no longer gets to be captain of my ship. It’s no longer permitted to destroy my sparkle. I have a burning desire to reconnect with those I already know, to connect with those I don’t, and to be open to whatever experiences, – platonic / sexy / otherwise – come along with that.
I feel less awkward, more sure of myself, and for once, excited. I am not only the Me from before, but I am the Me who has lived through a million more traumas and refuses to keep letting them win.I’m still tired and suffering, but I finally also feel alive again.