It should be at like 4:12-4:38. Just listen. (I’m so fucking specific, but not totally committed to the idea that I did that correctly.)
Admittedly, I’m a pretty obsessed Halsey fan and also a bit high. But I’ve listened to that 30-second statement at least six times now and I still don’t know quite what to do with it.
Clutch this brazen, tantalizing idea tightly to my chest, hold my breath, picture myself laughing too loudly and talking too much; writing blindfolded or on my skin, in the dark or in a bathroom; dancing because I have a body, singing because I like it, listening, really listening to music all day long, stopping only to make my own?
Or drop it before it burns me, this foreign thought, forgiveness, appreciation even, of a chaotic mind, a rollercoaster ride, a river of tears; give back this moment of not-wrongness that is not mine; apologize (again) for being crazy, broken, volatile, for being at all; try not exist too brightly, feel too hard, want too much?
It took me 40 years to even like most of me. I’ve never thought that I could–maybe should–love the side of me that is impulsive and inappropriate and creative and damaged and yes, passionate, about so many things. The side that cries as easily at the beauty of a sunset as at the coldness that crept into love’s voice. The part that needs to “calm down.” The unreasonable side; the “crazy” that I make jokes about because it’s easier than trying to explain what mental illness feels like. The side that feels everything, all the time.
I can love…my temper, my inability to stop saying, “fuck,” my awful dancing and worse voice, my nervous talking, oversharing, failed parenting, broken heart?
What I really want to know now is:
WHO TOLD ME I COULDN’T?
No piece of me is perfect. But I am not in pieces.
I am not a broken thing to be discarded. I refuse to only love and cherish my shiny best-self, the self that’s seemingly so easy to love. Because THAT me couldn’t exist without THIS me. I don’t get to pick one or the other, and neither do you; it’s all or none, my best and my worst, my past and my present, my heart and my mind, my laughter and my tears, my opinions and my insecurities.
All this, this mess, this disaster, this madness, this me? It’s not what I ever thought I ever should be. It just is. It’s me. The whole damn thing. Brave and fearful, weak and strong, obnoxious and honest, funny and ridiculous, hideous and beautiful.
I don’t see any reason to start using my head now; generally, that fucker is trying to take me out anyway.
It's easy to share this post. Not like sharing pie. I would never ask you to share pie.
I’ve been pretty open about my physical and mental illnesses since I started this blog. I haven’t posted anything in a long time, for a lot of reasons. But I finally feel like I can look back at everything that’s happened, the many mistakes I’ve made, and all the heartache, confusion and fear and anger and pain…maybe because I survived it. I just know I have a strange feeling that I think might be hope.
The last year and a half has been one devastation after another. I’ve cried, I’ve screamed, I’ve wanted to die, I’ve been so afraid of what is happening to me physically that I’ve begged people to help me die if I become unable to do it myself.
Maybe you know and maybe you don’t, but I’m disabled. Mostly because of chronic migraines, depression, and PTSD, but I have so many other diagnoses that I’m not even going to attempt to list them all.
I spent a lot of my life in debilitating pain, both physical and mental. The only post I ever wrote that went viral was about being a mom with disabilities and feeling like I was failing, even as I loved my children so damn much and tried so hard. That was before what I’m about to tell you.
Probably 3 or 4 years ago, strange things started happening. I couldn’t walk straight. I started losing words, so I’d have to say “those cutter things” instead of “scissors.” I’d get lost in my tiny hometown. I forgot how stoplights worked. My body would feel so exhausted sometimes that it was hard to even lay down; literally doing nothing was too much work for it.
Of course, I had test after test, and MRIs, and saw a million doctors and no one knew what was wrong. My family doctor and I both thought multiple sclerosis at first. I felt like I was losing my mind–all the medical shit I already had, and now something else invisible?! It was scary, it was depressing, and I did not handle it well.
August 31st, 2018, my husband and I separated. Shortly after that, my youngest child, my 10-year-old daughter, went to live with him. I felt like I absolutely could not survive it. Even though I was getting sicker and sicker, losing my vision, had to stop driving, all these things that made it impossible for me to care for her alone, I just could not bear this pain. I didn’t lose her–she comes home every other weekend and school breaks–I just got the shit deal that almost every divorced dad in the world gets.
I’m not going to discuss my boys; they are 17 and 21 and I don’t think they’d appreciate being blogged about right now. (Or ever, lol.) But I know that none of this was easy for them, and the state I was in, both mentally and physically, only made it harder. That is another pain that I will always carry.
From the time my husband and I separated until just a few weeks ago, my health deteriorated so fast it was unbelievable. I was walking one day and the next I was literally crawling. My limbs not only stopped working, they started hurting in an excruciating way they never had before. I had to sit down to do anything at all, and even then my arms became too heavy to lift within minutes.
There were days that I didn’t eat because I couldn’t get up, and days I only had bananas because it was so hard to chew and swallow. Then my vision, which had been going in and out, started getting really bad–because I couldn’t hold my own eyelids open. Speaking wore me out. Sometimes I wasn’t able to hold my head up.
Taking a shower standing up was impossible, as was walking more than 10 feet. I couldn’t answer the door, as if I would ever do such a ridiculous thing anyway.
One neurologist suggested myasthenia gravis or some kind of muscular dystrophy. I gained 30 pounds. I was still having migraines and all my other issues, but now I also lived alone and was barely mobile even with a cane. The pain was so bad that I sometimes cried before I even got up because I dreaded it so much.
To say that I was depressed is a huge understatement. I was nearly 40. It seemed inevitable that at the very least I would soon be in a wheelchair. I saw my kids regularly, but I was always sick. I was never able to do anything for them or with them, and the more I tried to force my body to cooperate, the worse it felt.
Since I often couldn’t operate my eyelids, I had a lot of time to think. And I kept thinking that if I could go back to when I “just” had 5 million ridiculous things wrong with me, instead of being nearly paralyzed, I would do so much differently.
This was hell. I’d lost my husband and best friend of 16 years, my children, my ability to think clearly, speak, walk, brush my hair…and it just kept getting worse. I was so embarrassed, I avoided everyone I knew. I didn’t want my friends to see me like this.
Then, a few weeks ago, I had 4 really bad migraines in one week. When I recovered, I realized that I was walking better. I didn’t want to get too excited. But it became clear that whatever it is that I have has gone into some sort of remission. I can drive. I can see. I can walk.
I don’t know how long this will last. But now it seems like the things I thought were disabling years ago, in comparison, were kind of just a huge pain in my ass. I’m not saying that living with treatment-resistant depression and chronic pain and a fucked up brain and a migraine nearly once a week is awesome or anything, or that any of that has gone away, or even that I’ll be able to walk tomorrow. I’m just saying that, right now, while I can, for however long it lasts, I’m going to take advantage of it. I’m going to do the things I cando in this moment, and let the future worry about itself.
I have felt more joy in the last few days than I remember ever, ever, in my entire 40 years. I’m back in counseling. I’m going to the gym. I’m eating better. I’m laughing more. I’m singing LOUD, and I am a terrible singer. *shrugs* Sounding stupid just doesn’t bother me anymore. (I mean, obviously it bothers anyone who hears me. Super not sorry at all about that.)
I’m dancing. (Or at least moving my body in as close an approximation of dancing as I’ll ever get.) And I’m not going to stop until these legs decide they need a break again. Now that I know that it’s at least possible that no matter how dysfunctional my body acts, it can cut me some damn slack every once in a while, I’m not going to waste anymore time.
Things are not perfect. But, somehow, surviving this shitstorm has made me appreciate even the not-terrible. It’s crazy to me that I had to be so weak and feel so broken to finally know my own strength.
I don’t know what will happen next or when or what it will take to get through the next half of my life and keep this light inside me. But I’m also not dwelling on it.
I’m busy dancing.
It's easy to share this post. Not like sharing pie. I would never ask you to share pie.
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