In The Dark

It’s nine in the morning; I’ve been awake for several hours, moving through my daily routine which I’ve talked about before—the one with stretches, coffee, sitting with the cat and the dog, watching the window—but now, the sun’s fully up and bundled up like it’s January, I head out into the garden that I guess I’ve planted too early.

My neighbor tells me not to put plants in the ground until after Easter and she’s absolutely right for this swampy little place in which I live—the weather is completely unpredictable and we’ll go from 90°F to 30°F in a single day without warning. I just couldn’t wait, though. I couldn’t wait when last weekend, I had a few extra spoons lying around to use while also worrying that some sprouting plants were outgrowing their little, recycled plastic containers. (y’all better be reusing your plastic plant containers or recycling them, at least! *wags a mom finger at ya*)

Now though, on this bird-chirpy, sunny morning, I have to figure out a way to effectively cover my little sprouts because tonight, we’re dipping back into the 20s out of freaking nowhere. I’ll probably secure little cups over everything and then lay some blankets over that. The following day, it’ll climb back up and my little sprouts can sun themselves again.

Weather roller coaster.

I don’t have too much time though because surprise, surprise, I must head to a doctor’s appointment in an hour. It’s a follow up to discuss some imaging I’ve recently had and hopefully a discussion of helpful next steps.

Medical roller coaster.

I had a conversation with a very close friend and I told her that I’m not okay. She’d asked me how I’ve been and I just said it: I’m not okay.

When you let a little bit of pressure out like that—a mere conversational comment that you’re “not okay”—you fall onto an unstable foundation. Standing on a cracking sidewalk with nothing but pits of black beneath it, you think to yourself:

“Should I have said that?”
“I don’t want to burden my friend.”
“I’m a failure.”
“Other people have it much worse, so how can I say I’m ‘not okay?’”
“She might think I’m just seeking attention.”
“Am I really ‘not okay’ or am I just being dramatic?”
“I don’t want to worry anyone.”
“I’m really not okay, so why should I feel guilty?”
“She’s your friend and has told you that you can talk to her and you believe her.”
“If she told me that she wasn’t okay, I wouldn’t feel burdened; I’d want her to tell me so I can be with her.”
“This is all in your head.”
“I’m okay, really, it’s not that bad.”


As I paused in this [very familiar] beehive of racing thoughts, she said, “What’s wrong?”

“Oh…” I began. I wanted to say “nothing, it’s okay. It’s not that bad,” but then, I guess because some pressure had already leaked, more spewed out, “it’s everything.”

“Do you want to talk about it?” she asked.

I wanted to talk about it. I wanted to say everything, real and honest and un-sugar-coated. I wanted someone to see me for where I am and just…. just hear them say they see me. Validate my feelings. Tell me I’m not crazy or being dramatic, or if I am, tell me that too.

I want to grab someone’s hand so they can walk through this darkness with me. I don’t want them to feel it, but I want them to be there so that I don’t feel so lonely all the time.

“I don’t want to burden you,” I said. And I meant that, I didn’t want to burden her. Why should anyone else have to be dragged down with my situation? It’s my situation after all and I love her and don’t want her to worry.

She sighed and I think it was because she knows I’m a [recovering] people pleaser. She’s called me out on ill-advised decisions before that I was clearly making at my own expense because I didn’t want to make someone else unhappy.

So, I opened the valve. I let sentences escape that I didn’t even know were in there. Some were about how I was scared, some about how I felt ashamed. Some were about how much it hurts that people have actually held this thing I can’t control against me. How I’m angry. How I’m sad. How it feels to grieve a life I was planning that’s slipping away because of something I can’t control.

I let all the bad, scary, ugly phrases come out and when I was done, I felt so vulnerable. In the moment of silence after I poured and poured and poured, I worried about the same things I list above—about how embarrassing it is to admit that I’m a fucking mess and there’s absolutely nothing I can do about it right now. I can’t control this.

I said to her, “I’m sorry, I don’t mean to—” and before I could finish the apology, she cut me off and said,

“No, don’t apologize. You didn’t do anything wrong.”

She went on to tell me that she didn’t know what to say, that she didn’t have experiences she could apply to relate, but that she could listen. She would listen. She told me she would sit in the dark with me so that I knew I wasn’t alone.

She would sit in the dark with me so that I knew I wasn’t alone.

My friends, this is a profound thing.

I think sometimes that’s exactly what we need: to just have someone sit with us…to listen if we have pent up emotions suffocating our hearts. We just want to know that we’re not alone—the dark is a lot less scary that way.

Living with an often-debilitating chronic illness in which absolutely nothing is straight forward and in which symptoms are as unpredictable as swampy, East Texas weather is, is hard. It’s isolating. It’s upsetting. It’s painful and it’s scary.

I think sometimes we (the chronically ill) just need someone to wrap a blanket over us every once in a while, especially when unpredictable freezes come along, and tell us they’re there. We can’t fix or change the weather but we can help protect each other from slipping deeper into a muddy pit of depression and hopelessness.

If you know someone going through something like this and you’re in a place in your life to be that friend for someone, reach out to them. Let them know you’re there.

And on the flip side, if you’re drowning from the inside, ask a safe person if they’re able to sit with you for a while and then let them. We, especially women, get so caught up in maintaining a certain level of “I’ve-got-this-ness” that we deny the opportunity for our safe people to be there for us. You don’t mind when your person needs you, so why do you think they mind when you need them?

We need to bring back the safety and access of community, even if that community is your friend who lives too far away. Whether you’ve been conditioned to think this or not, we can’t do this alone…especially if you’re chronically ill with a rare disease that isn’t your fault. (I say this because my friend reminded me of this…that this isn’t my fault. I didn’t ask for this. It reminds me too of that incredible appointment I had last year when I was nearer to death than I’d ever thought I’d be without actually, well, dying. If you’re interested, that story here.)

Sometimes maybe you want to be alone, and that’s okay. But if your pressure’s built up so high that you’re spewing little bits in conversation and then falling down the rabbit hole of “what ifs” like I do, then maybe it’s time to let someone come sit with you for a while. If you don’t have that safe person, message me and I’ll listen (when I am in a place to. Boundaries, remember. We all need them.)

To my friend who sat with me and the many others who have grabbed my hand when I’ve been blindly reaching and walked into the darkness with me, I thank you so much.

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