I think I wrote on this very blog not that very long ago about my need to change my thinking. I was having one of those rare quasi-positive days when I like to tell myself that my mind is in control and this body only needs to finally get on the bus so we can all roll down the road to Wellville and be ourselves again.
The thing is, it’s not all that easy. I can see Cheryl in my mind’s eye right now shaking her head very slowly and chuckling at me because she’s only been trying to teach me how to change my thinking for over a decade and I resist this lesson most passionately. I hold on to my broken thinking like I’m in the middle of the North Sea and my broken thinking is my only life raft. If I let go, I will drown a cold icy death. So I cling to it with all of my might.
The trick of this disease is that you cannot think your way out of it. And I would know, because it’s officially been a year now since my diagnosis and I’ve spent every conscious second of these last 365 days trying to think my way out of this. Around this time last year, I was feeling human for what felt like the very last time as I was shot full of magical (but dangerous) steroids that made me feel like super woman for a few weeks. God I really loved those few weeks!
In the course of the year since then, things have changed a lot more than I’d like to admit. I am slower for sure. I am far less social. I barely leave the house these days except for the occasional work day (and I do that only to keep myself from losing my mind because I can actually get more done working at home).
My outfits have changed drastically along with the shift to sensible shoes. My days of wearing very intricate, carefully applied makeup have gotten fewer and fewer not just because the cats don’t really appreciate a well executed cat eye or because it’s no fun putting makeup on a face covered in middle-aged acne. It’s mostly because who has the energy to take it off again before falling into bed at night? Or early evening? As the case may be.
A few appointments ago when I went in for hair day, my most favorite day of the month, I said to Dana my hairdresser, “I need handicapped hair. Hair that doesn’t need to be messed with. I want hair that doesn’t give a fuck.” So we did that and because she’s that good, it doesn’t really look like handicapped hair, but I know what it is deep down inside. I also told Dana that day and I think I meant it…I’d shave my entire head if I thought I could get away with it. I’m just over all of it.
I find myself looking in the mirror and not recognizing myself. I look tired. And old – like someone who’s just given up a tiny little bit.
I’m not embracing this new me, I’m hating on her with all I’ve got. I wish her to go away. I want old me back. The one who cared more, liked more, felt better and was up for a good time. I want to want to be her again. I want to have the energy to be her again. The trouble is, I just don’t have her in me anymore. I feel like she’s left on a long sabbatical and all that remains is this new version of me that I’ve definitely not welcomed with open arms. She feels like an unwelcome house guest who arrived for the holidays last year and just won’t leave already.
I’ve been focusing my changed thinking on pretending I don’t feel the effects of this disease. I’ve been telling myself that if I only think positively, and not focus on the obvious, I won’t need to sleep for three days after one night out. I won’t need to rest after running two short Sunday afternoon errands like I did today. I won’t look so tired if I don’t let myself accept that I really am that tired. I’ve been trying to pretend and at the same time beating myself up for failing because the thing is, no matter how positively I think, my goddamn legs are not playing along. And there you have it. There, my friends, is the rub.
Maybe I’m changing the wrong thinking. Maybe the thinking I need to change isn’t about my physical limitations because that shit is just real. Maybe it will get better someday. Maybe there will be a miracle. Maybe this next new drug will be the one that has me dancing and running up steps again (ok…I never ran up steps but I could try in my delusional brain when I think about miracles). But I don’t think I can count on that. It just doesn’t feel all that realistic. It feels like empty hope.
I think I need to figure out how to embrace the new me. Welcome her in. Give her a comfy place to lay her head, maybe some really nice expensive sheets to cozy up in. I need to stop beating her up for spending so much time at home and start teaching her to be more grateful that she has this wonderful home at all. I have to teach her that the face she sees isn’t just old and haggard. It’s been through it’s share and it’s showing it’s wear but it’s survived it all and it will likely survive more because I’ve come to the conclusion that is what life is all about.
I need to figure out how to let the quiet be OK. I did that once before but I’m resisting it hard right now, filling it up with social media and computer games and television all of which is often just plain noise. Maybe I’m resisting it so hard now because it feels like giving up? It could be because this time, the need for acceptance comes when I’m almost 50, not just-turned-30, and my whole life is no longer in front of me. That’s just a fact.
I want to stop being sad about new me and start liking her. I just don’t know how. I guess that’s why I have Cheryl. She really has her work cut out for her. I need to change my thinking but not about accepting that I have this goddamn cursed disease. It’s here! It’s not going away. Nor, it would appear, am I because no matter how few actual humans see me in the wild I still continue to exist somehow. I need to start figuring out what’s next.
I won’t miss 2016.
I know a lot of us won’t for a lot of really good reasons but I really won’t be sad to see this year pass. This year has chewed me up and spat me out and left me feeling utterly confused and rattled. As it winds to a rather quiet end I am going to try and focus on changing my thinking about the right things this time. I’m going to try and give New Me some space. I’m going to try and teach her to love the slowness, and the quiet and her newfound wrinkles.
She has certainly earned that much.