Help Hope get excision surgery

Okay, for starters, thank you for clicking through to get here. Even if you don’t have anything to spare, I really appreciate you considering me long enough to stop and take a look. That means something. If the past few years have taught me anything, it’s that every kind of support—mental, emotional, financial—is deeply necessary to survival. And I don’t mean just mine. I mean for all of us. Nothing more than truly, desperately needing help from my friends and family has made me understand how we as people just… need each other. Need community.

I have always really loved people. When I was little I wanted to be a therapist, and then an author, then a teacher. I wanted to help, and to tell stories; I wanted to communicate, to touch the people around me. To talk to them and love them and share them, so that everyone else could love them, too. I still want that. I want so many things.

But illness makes wanting hard.

I thought it would be obvious. If I were to get sick, really sick, to the point where I felt differently, thought and planned differently, did less, was less, I thought I would notice immediately. Like illness would write me a little notice once I crossed the threshold. But why would that be the case? No one ever tells you they’re going to steal from you before they do it.

When I was first told I had endometriosis, it was thrown out there as kind of a nothing thing, a “oh, the pain is probably just this.” Like it didn’t matter—which is what I told myself. The cramps that ripped me out of a dead sleep and kept me company through hours of nighttime, the blood that eventually found its way into my stool, the adenomyoma—one benign tumor, a cluster of endometrial cells grown into the wall of my uterus just ahead of my cervix, nearly half the size of my uterus itself—partially blocking my rectum, the bloating and gas, the violent episodes of depression and rage that needed to be medicated, the weight gain, the shooting pains in my legs, the sciatica. It didn’t matter. The shortness of breath, the ache behind my right shoulder, the pain of just emptying my bladder. It didn’t matter.

A number of well-meaning, well-educated doctors gave me benign smiles and shrugs. “Well,” said one gastroenterologist, “do you get diarrhea when you’re anxious?” As if I had sat for three hours in a waiting room on a day I’d had to take off work, because very occasionally I’d have to take a big test and it would upset my stomach. Over and over I was asked whether I simply had anxiety. My primary care, upon seeing me only a month ago for blood work, checked the scale and said, frowning, “Well, you’ve gained ten pounds. Are you exercising?” I’ve cancelled plans and slept through alarms, exhausted beyond the point of being able to do anything—even something that ordinarily would bring me nothing but joy. I’ve lost a job. I’ve had to give up trips. I’m contemplating whether I need to cancel having my twin sister come for our thirtieth birthday because I’ve exhausted any time off I’d be able to get from work. And even then, yes. I have been exercising.

But my body doesn’t obey me like it used to. I wear a brace during the time I’m not able to work out, for my wrist. I recently sprained my ankle just going down the stairs. My body is, in every way it knows how, screaming at me that I am more than anxious. I do not have IBS, I am not exaggerating, I am not lying about my diet or exercise or failing to be compliant with my vitamins. I have taken probiotics, and yes, for the love of God, I have taken fiber. I’ve even done pelvic floor therapy. My therapist herself, hands over my appendix, widened her eyes and said, “What is that?” For years, no one knew.

Now, they do. I won’t deny that it feels incredible just to know I’m not crazy, that every doctor who tried gently suggesting that I was hysterical, that maybe I needed to do yoga or get outside more or drink more water or try deep breathing or NSAIDs or even narcotics, was wrong. Which is not to say that I didn’t appreciate any attempt to help. It was only that the idea that my pain was in my head, or maybe even just my fault, did not line up with my experience. The gap between the theory and the reality was too big for my brain to bridge, and the effort was driving me, to be really frank, fucking crazy.

But however good it feels to have an answer, it doesn’t change how I feel, or how my body has been impacted. Effective treatment for endometriosis that has advanced as mine has comes only in the form of excision surgery. I’ve done all I could to manage the pain and growth on my own—including four different forms of hormonal birth control—and my methods have reached the end of their usefulness. Which is a shame, because my methods were (slightly) more affordable. But needs must, and I need relief. I need my life back.

Once upon a time, I would’ve said I want my life back. I would have thought I could manage. That was the me that believed it must not be that bad, if I was up and moving, and shouldn’t I keep quiet? Why complain, when it could be so much worse?

I want to shake that me until her bones rattle around all loose, like a science classroom skeleton. Why, for the love of God, would you want it to be any worse?

I didn’t know how much worse it could get, and so quietly, like light stealing into a room. I didn’t know how horrible it would feel, alone inside my body with a pain that ate everything: my energy, my patience, my good humour, my memory. I didn’t feel worthy of sympathy. Who but me believed in the monster under the bed?

My community.

I’ve never stumbled so badly in my life as now, and every time I’ve thought this is it, this is how I finally go down, hands have been there to catch and hold me. I can’t get into it; I’ve been struggling to write this during my down time, and if I cry right now it’ll be the third time I’ve cried on the train this month and that’s too many times, I’m almost positive. But God, horrible as it’s been, I’ve never felt so free to be the ugliest, neediest, messiest version of myself, the version of me that needs help and gets it.

Because I ask for it.

I still hate to ask for it. I do. But never once have I resented anyone for needing or wanting my help, for being sick and wanting to be well, for feeling alone and wanting to be supported. So, I’m making the effort to give myself the same grace, and allowing myself to ask for a whole lot of help, because I need it.

Endometriosis is a tricky disease: you diagnose it and treat it in exactly the same way. Which means we won’t know how much there is until we’re in and removing it. I could be in surgery for two hours. I could be in for six and a half. I most likely will need my appendix removed, and of course the adenomyoma. I’ll need to take at least a week off of work, maybe longer, to recover, and already I’ve lost a ton of time and spent far more money and energy than I could have ever imagined I would.

When I said anything counts, I meant it. The other day on the train a little girl told her mom she loved my outfit and I almost started crying at the reminder that I’m still any part of the me I was before, and that I’m able to make anyone happy despite feeling that happiness more and more rarely myself. That counts. Any kindness counts.

But recovery and healing costs money, and I’m going to need a lot of it. My goal is to raise $10,000, which feels obscene, but you’ll never believe how expensive surgery is! Or maybe you will. I hope it doesn’t stem from experience. But if I raise even $10, $100, I’ll probably start writing overwhelmed poetry in honor of everyone who has ever smiled at me on the street.

And now that I’ve said far more than I need to, I’ll sign off by saying in advance, from the bottom of my heart: thank you for holding me. Always remember that I am here to hold you back.

Hope x