2 a.m. Anthems

I’m pissed.

I don’t know if I’m pissed at my situation or pissed at God or pissed at myself. I don’t know if this is temporary or just a cycle or if this is something more permanent. I’m here writing this at two in the morning while my beautiful dog sleeps soundly at my feet, and still I don’t know if anything will come of getting all of these emotions out, if I’ll write my way back to hope by the end like I always used to.

Even the one thing that used to be my catharsis seems hollow.

I’m trying to so hard to come back to myself. I’m trying to so hard to take all of the spiritual tools and all of the experiences and all of the learning I’ve done these past few years and put them into practice: quiet the ego mind. Focus on the gratitude. Be present.

I’m grateful for my house that I have no idea how I’m going to pay for come a few short months. I’m grateful for my dogs that I have no idea how I’ll provide for and maybe I’m actually a shit dog-parent because I don’t walk them enough or play with them enough because I’m always working trying to figure out how to keep the house with the fenced-in yard for them and, besides, Riley is old and going deaf and having trouble walking, and I don’t want to uproot his life near the end of his life.

Well, I can see this is going splendidly already.

Maybe this is residual trauma from living with Lyme disease—where every single day felt like a struggle to survive. Every single day, I fought to survive. Every single day, I had to make the conscious decision to wake up when my body was plagued by fatigue and pain, and opening my eyes was literally all I could do and even that hurt.

Even that hurt.

No one knows what an experience like this does to you. And you can do all the healing in the world, look back and know that you’ve come so far, and still feel the shadow of that trauma every single day. How you fought with doctors to save you—when they mocked and gaslit you and told you, “sweetheart, you’re fine,” when your body was shutting down and you were anything but fine. You fought to keep yourself alive just long enough to find the doctor that would help you save your life, and then—when that miracle came—you collapsed in relief because you didn’t think you’d have to fight anymore.

But you did. Because treatment was another hell.

So you fought through your mind screaming its paranoia and hallucinations and your body screaming its pain and fatigue and your heart crying for relief and begging you not to give up all in the same heartbeat, and moments felt like hours, and hours felt like years, and it was all you could do not to give up because your dog needed you and your parents would be crushed and you made it this far, you made it this far, you made it this far…

You fought to stay alive. Stay alive you did.

You fought people who didn’t understand your illness, who tried to invalidate your experiences, by showing compassion and educating them instead. You fought judges who denied your disability because they can’t see that while you’re striving to get better and put your illness behind you, you still don’t have the day-to-day stamina necessary to exist in a world that continues to thrive on the healthy and forsake the sick. You fought with others on the steps of the state capitol building, advocating for patient rights; you fought for those who are sicker than you as you build an organization that promises you don’t have to fight this alone.

You fight every single damn day for every last ounce of joy available to you.

And I’m tired. I’m tired. I’m so tired of fighting.

I’m tired of struggling for everything I have. There are times when I just want to let it all go—everything I’ve built for myself, rising from the ashes of my darkest times, everything I’m proud of, and still I want to let it go. Because it doesn’t seem like enough.

What good are my books if no one reads them? How can I create more through my businesses if no one finds value in what’s already there? Who am I really helping through my organization if we don’t have the funding to reach them? Why am I holding onto relationships that don’t care about holding onto me? I try to be of service to the world because that is my greatest joy—to love others. To help others. To serve others. But what if I myself find myself in need of that love, that help, that service? I look around, and I see others thriving rather than just surviving—and I want that. I want that so dearly. And for moments at a time, I have a taste of that. I know what it’s like to laugh again. I know what it’s like to be spontaneous and follow the path of adventure and hear the call of my own heart singing, “I’m alive.”

But then in this joyful pause where I’ve left my struggles behind, I look around and see that others are accomplishing more in minutes than I have in a year, that there are those who have already experienced what for me seems like a faraway dream, and that there is someone who holds the interest of one who was never mine in the first place, but that I wanted, that I believed in… And I think, I don’t want to have to fight for what I want anymore. I don’t want to have to fight for what I need. And I definitely don’t want to struggle just to survive. I surrendered long ago, knowing that nothing is in my control. But what changes in this state of surrender but the crumbling around me of everything I fought so hard to build back after my life fell apart again and again and again.

“Susan, I want to validate for you everything you’ve done,” my friend Amy said on a mentorship call between our Lyme organizations. I’d come to her recently for guidance on how to continue to grow LymeBrave when I was feeling so disconnected from the community, from my experiences, from my life. “You published three books, you almost single-handedly built three businesses, you’re running an amazing non-profit organization that has so much to offer already, and you’re still sick and struggling with your own needs. Do you see how incredible you are?”

I didn’t. I don’t.

I started to cry.

Because what is so broken inside of me that I can’t see this? Consciously, I’m proud of myself, but it’s like that pride stops short of believing it in my heart. Why can’t I accept that I’m not only good enough, but that I’m amazing? Why, when others call me inspiring, do I shake my head and immediately think of a dozen other people who deserve that accolade more? Why do I feel like I’m constantly paling in comparison to others? Is it my ambition? Do I have too much? Do I expect too much for myself? Because all of the things she listed were born of passion and purpose and necessity. I couldn’t not do them. I couldn't imagine it—I wasn’t just nudged by the universe but shoved, and doesn’t everyone experience that? And what if I hadn’t done any of that? My own self-love and self-worth says I would still have a purpose, still have value, still have a place in this world. What you do is not who you are. What I’ve accomplished isn’t what makes me worthy of love. It’s who I am—the soul beneath—that creates that worth, and I know that. You’re meant for love because you are love. You’re meant to be here simply because you are here, blessed to be alive.

But I fought to stay alive, I fought to stay here. And now I want so much more out of life than to merely be in a state of existing again. I want to make it count. But I also want to feel that joy. I want to feel what it’s like to live without struggle, to feel at ease in my own life. I want to feel the wind on my face and not anticipate an impending storm. I want to appreciate the water and not wonder about the flood. I want to bask in the sun of love and not fear the risk of getting burned.

I don’t have any answers tonight. Fifteen-hundred words, and I haven’t been able to write myself back to myself. Not this time. Not right now. I woke up from sleep, these words screaming their anthem, wanting to burn my life to the ground because what use is anything I’ve built if I’m constantly fighting to hold onto it.

My ego mind is dying.

That’s the real crumbling away, and I know it. Come the sunrise, things will be different. I’ll feel that peace and hope in my heart again. I’ll know that what I’ve built is something beautiful. I'll know that I'll have made my loved ones proud. I’ll know that I am loved. I’ll know that I am worthy. I’ll know that I’m so much more than good enough. But tonight… Tonight my ego fights to hold on, fights to survive. It’s what we know how to do. It’s OK, my heart whispers to it. That period of your life is over. The trauma has come and gone. Things are different now. Things will be different now.