Spoonie Slumber Party
I recently had a Spoonie friend stay with me for a week. It was wonderful. Yes, it took spoons to visit with her, but everything in life does. And even though it might have been physically draining, it was emotionally refreshing. Plus, as someone who also lives with chronic illness and pain, she overlooked my cluttered home and helped “host” herself without a hint of judgment.
My friend and I spent most of our time lounging in our pajamas in the living room. It reminded me of sleepovers spent with the girlfriend you would call immediately after getting off the bus, even though you’d just spent all day with her in school. The one to whom you could tell anything because there was a part of you that she understood in a way that no one else could. Except, instead of whispering about our crushes over cups of hot-cocoa snuck in the middle of the night, we were discussing our illnesses and their reverberating effects on our lives and psyches while sipping semi-illicit glasses of wine in the afternoon. Symptoms, treatments, relationships, thoughts, feelings, individual and global philosophies – pretty much anything remotely related to being human was on the table. Heck, we even discussed being non-human as we flew our geek-flags and watched an entire season of The Vampire Diaries. The conversations were ones that would have sent most Normies running for the hills. They included things that we’d barely admitted to ourselves, let alone to our husbands. And like drinking vampire blood, we both walked away from the experience feeling refreshed and invigorated.
The Smoke-Filled Home
Why were these conversations so renewing? Like I said, many of the things we discussed we hadn’t fully admitted to ourselves. Or they were topics we tried to avoid in everyday conversations. Common sense and experience teaches us Spoonies that launching into a litany of our physical symptoms and their corresponding emotions is not “polite conversation” and leads to jilted interactions and the loss of companions. Not even our dear Dishes can take all of “it” all of the time. So, for the most part we zip our lips. Even though we’re dealing with it in one way or another all day every day, we find that to maintain relationships and the general progression of life, we should talk about it as little as possible. But in these situations, we become like a house without a chimney. Our symptoms, thoughts, and feelings are burning within us. The smoke is multiplying and has nowhere to go but to fill us with its choking darkness. As we’re enveloped in that ashen fog we start losing sight of the positive things in our lives. Our rationality and understanding of chronic illness and its cyclic nature gets obscured. Evil thoughts begin to whisper to us from the fire’s embers and we feel alone, a little crazy, and ready to “Abandon all hope ye who enter here” (Dante, Alighieri; The Divine Comedy). Opening up to another Spoonie builds the missing chimney. We can breathe. We no longer have to endure this overwhelming part of ourselves alone. The evil thoughts lose a bit of their hold and we gain some strength. With our freed up power and energy we might even be able to take the next step and install a window in our home to let in some sunshine.
Confession is Good for the Chronic Soul
We need other Spoonies in our lives. We need to build chimneys and let out the smoke. We need to install windows to refresh our soul. With all that in mind, I’m starting a new section of this blog where we can do just that together. I invite you to whisper your chronic secrets to the Bottled Time Family. These can be anything that you’d like to say to another Spoonie directly or indirectly related to your illness or condition. As I’ve said elsewhere, chronic illness is not all we are, but it does affect every aspect of our lives. Maybe you’ve tried eating toilet paper because someone on a plane once told you her grandmother was healed of all illness after eating 3 rolls of two-ply. Or perhaps you sing “Mary Had a Little Lamb” before each surgery because you believe it’s good-luck. Whatever your situation, it’s time to uncork your confession and pour it into an email to BottledTimeBlog@gmail.com. Preferably add your own artwork, but if you’d like me to add some for you I will. Let me know whatever, if any, identifying information that you would like posted with your confession (ex. name, location, illness, age). Confessions can be completely anonymous.
I will post these confessions as most confessions are stated, quickly and simply. They will not have my usual essay-style (after this one) or plethora of related links. I will however put a few questions for thought and discussion to help Spoonies connect and build their chimneys. As Home-Depot says, “Let’s build something together.” I say let’s make it a chimney.
Uncorked Confessions #1: Fear of Failure
To get us started, here’s one of my confessions. It’s one of those evil thoughts that whispers to me from the embers.
- How do you feel you are doing being sick?
- If you were magically well tomorrow, how would you handle it?
- What do you think it takes to be sick “well?”
Feel free to respond in the comments section below or join in the discussion on the Bottled Time Facebook Page. You can also find Bottled Time on Twitter (@BottledTime) – a great place for connecting and building chimneys!
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