I hate this. I hate this undecorated life and frail body. I hate that when I try to explain to my friends what has happened to me they stare at me uncomprehending, uncertain of what the right thing is to say. I hate having to listen to the wrong things from people who don’t know me as well: “everything has a purpose,” “God has a plan,” “acceptance is the key,” “opportunity for spiritual growth.” I literally cut someone off last night. She started to ramble on about a spiritual purpose behind pain and I wanted to strangle her. Instead, I just interrupted her, smiled and said thank you, and squeezed her arm and walked away. She looked a bit confused, but you know what? I just don’t care.

If all you have to offer me are platitudes then do me a favor and shut up. SHUT UP. For god’s sake, leave me alone. You know nothing about what is happening to me right now. I am not a vessel for your latest spiritual discovery. Don’t tell me how strong I am. You only know what this looks like when I’m out in public expending all of this extra energy to appear normal-ish. You don’t know what it’s like when I’m alone inside my house and inside my body. And you really, really, do not know what I need to hear.

No-one is willing to say any of the things I need to hear. I need to hear that this is all a dream I will wake up from. I need to hear that once this is all over I can go back to my old life again. And more than anything, I need to hear someone tell me that it’s going to be OK and I don’t understand why no-one seems able to bring themselves to do that. Perhaps they’re afraid I won’t believe them. My doctors are probably too distracted by trying to repair as much of my broken body as they can to worry about how lonely and damaged I feel on the inside. It hasn’t occurred to them to reach out to me, close that clinical gap, and tell me I will be OK.

But it’s how it feels on the inside that scares me. The outside is tangible and knowable; there’s a beginning and an end. But the inside is bottomless, and I’m frightened of it. It’s daunting to wake up inside this fragile, unreliable body every day and wonder what my day will be like, and what my pain will be like, and whether I will be able to sit through class or drive to the store.

Tell me I will be OK, whether it’s true or not.   I know you don’t know what or where the end is and whether I will be OK with it. I just need someone to stop trying so hard to figure out what the best thing is to say to me and put their arms around me instead. Stop treating me like something that will break if you touch it. I know I terrify you but I’m still me on the inside. That woman you knew before is still here, trapped inside this enormous thing that’s happened to her, a thing that’s so big that she can’t see around it, or through it or past it. I need you to see past it for me; I need reassurances, not explanations. But instead of coming closer, people shy away. I never understood why my friends were so grateful when they would confide what they were working through and I’d just hug them and tell them it would be OK. I felt as though I was being incredibly unhelpful. But now I’d give anything for that seemingly small, unhelpful thing.

Because I don’t want your help. I don’t want you to try and make me feel better. In fact, all of your attempts to do that just belittle what’s happening to me, as though mere words could shorten my journey through this life change, or alter what will happen at the end of it. And it keeps you at a distance and keeps you from sympathizing with me, as though you could keep the awful reality of what’s happened to me at bay by not stepping into the psychological muck that surrounds me. So stay away if you can’t handle it; I don’t need you to solve my problem, or tell me how to make my way through it.

But if you’re not afraid to be here with me, then just be here. All I need is for someone to hold my hand while I’m doing this. I just need to know you’re there, and you won’t let me slip away.