I’m writing from my iPhone, supine on the couch. It’s the first time doing this because up to now I’ve experience so much frustration typing on this keyboard that the idea of writing a whole blog post on it felt out of the question. I could just imagine the many many predictive text failures and me growing angry and tired. But, alas, I can barely move. I don’t feel strong enough to sit upright and feel comfortable. All my limbs are weighted, my head feels like a bowling ball supported by a twig. All my appendages hang like deadweight to the floor. Mostly I feel really brittle.
I had a bunch of nerve-racking dreams last night with intermittent nightmares. I wake up with 5 or 6 vivid memories of all these scenes playing out in my mind. Many times it’s in the middle of the night and I wake up to the sound of my own voice saying “Mmmmmm” but unable to get the word out, my jaw straining and my mouth tight. This is also happening in the nightmare; I’m unable to speak, often unable to move, and I’m trying to call out. The “Mmm” sound is for Monty. He is who wakes me out of the dreams. Almost always I awaken, sweaty and afraid, and next to me is Monty, standing close to the bed panting loudly. A few times he’s pawed at the bed or whined to get me out of it. He is my relief. I pet his head and slow down my mind, my breath. He grunts and quickly goes back to sleep. I’m continually amazed by his visceral nature and intuition. He’s more than a therapy dog. He’s a rescue dog.
So many times, when I fall back to sleep, I return to the terror or anxiety or the inability to move, or be heard. Sometimes picking up right where the last dream stopped. Even when they’re not nightmares, they’re usually taxing and filled with angst. Or I’m just too sick to keep up with the characters. This morning just before my eyes opened, I was trying to keep up with my brother and sister who were packing up and moving from our house. My brother was mad that someone had dirtied the bathroom walls and I had a washcloth, sluggishly trying to wipe them down but struggling with my shaky arms. I could barely complete the task. I explained I was trying my best and to go easy on me, that I was exceptionally weak. ‘Why are you so weak?’ he asked, looking me straight in the eyes. ‘I don’t know’ I said discouraged, returning his dead pan. That was it. I opened my eyes to Monty on the bed and my whole body aching, but worse was the heaviness over me. It was so hard to move my cement limbs. It took way too much effort. As I struggled to get out of bed and merely stand up I thought “Ah, well, that explains the dream.”
In fact I think my dreams have deeper meanings than just their physical implications, mirroring my condition. But certainly my symptoms heighten the scenes and details. A while ago I dreamed that metal shards were sticking out of my kneecaps and my legs had a bunch of broken glass stuck in them. (Having glass shards in my skin is a recurring detail) When I woke all my joints were aching, most of all my knees for some reason. The rest of me had that general ache, and it was interesting how my subconscious was using those symbols to reflect my physical reality. Anyway, when I think back on them later, I think, did I get any restorative sleep? I wake up feeling like I ran a horror marathon all night! Not all nights, but most. And it’s interesting to me. Many of my days aren’t filled with a lot of action, but it’s like I have this whole other life when I go to bed at night. And sometimes it’s really amazing. This year in particular, I’ve been able to ‘decide’ to fly and I do it a lot now. It truly feels like I have actually flown, I am amazed and exhilarated in the dream, knowing it’s an incredible thing. As soon as I believe I can (like thinking a happy thought in Peter Pan)!or remember that I did it in another dream, I do it. And I experience it fully.. Looking down at roofs of houses, flying and landing onto branches of tall tress. Last night was theatrically hilarious: I flew real high up above this pool, turned upside down with my arms out like Superman and nose dived while doing full 360 spins into the pool. And I knew that I looked like those Olympic divers who land perfectly into water without hardly making a splash. I was showing off, and it felt great! This was just before I realized we had to leave and I was heavy and weak trying to get out of the pool. I didn’t seem to function on dry land. That flying part was fun though.
Unfortunately the rest of the day so far has remained in a crash state. Extremely weak and fatigued, super dizzy every time I stand up, with my hearing becoming totally muffled and my heart doing all kinds of weird things. I’m short of breath and winded even though I’ve barely moved at all. I was supposed to go to a wedding which I was looking forward to tonight, but I knew exactly what would happen if I pushed it and went, so here I lay, with Monty next to me waiting for any movement that looks at all promising .
Days like these are hard, but they used to be much harder. I’d fight them, racking my brain for a way to make it work– to keep plans, to fulfill my own or others expectations, to demand that I was in control and not my body. If I gave in and said no, I’d torture myself imagining all the fun I was missing, and grow angrier at my circumstance. I’d feel hopeless and my mind would exaggerate the ‘unfairness’ of my life with this disease. But saying yes always yielded the same bad result–a deeper crash and an extended amount of recovery time. Which would make me miss out on even more. Now I feel more in touch with my body–I usually know deep down whether or not I can or should do something, and when the answer is no, I spend as little time harping on it as I can. I’ve practiced surrendering faster and divertig my attention to what I can do while I’m in whatever state I’m in. And honestly there is plenty– the iPhone alone can busy you for hours. Yes it stings to miss out, but my wisdom in making the better decision and my acceptance with whatever that is has grown. I think with an illness like this it’s almost a lesson you’re forced to learn. The alternative is just suffering on top of suffering, and ain’t nobody got time for dat.
I’ve got two good books: A Return to Love by Marianne Williamson and Dance Dance Dance by my favorite Murakami. There is Mad Men Season 6 I haven’t seen yet. There are rain storms that continue popping up that I like to close my eyes and listen to. There is food in the fridge, (my mom texts me,) and there is the gift of time I’ve been given to rest and recover through days like this. And it wasn’t always that way. I have to reming myself what a gift that actually is.
As for the dreams, I’ll try to write them down, and since I’ve learned how to fly, perhaps I’ll learn how to shed my physical issues in that world too. Or I won’t. Either way, in this sedentary life of mine, sometimes those active dream-filled nights give me an adventure that invoke my mind and heart, and that’s pretty cool in itself. (Minus the glass shards.) Especially because I remember them so vividly. Anyway, sometimes it takes stepping back and changing the filter through which we see our experience to see all the treasures that it contains. For me that comes with writing, and having the chance to do that on a blog and being able to connect with people is one of the greatest gifts I have right now. So thank all of you for being so supportive and reaching out often. It’s been huge for me.
Now, back to nothing.
Health, Happiness, Recharging.