I am trying something a little different today. A Chronic Voice has a monthly linkup to connect people with chronic illnesses. Each month, there is a different set of prompts(5 words) that they encourage you to write about. This is my first time participating. If you are also interested, please follow the link above!
I find my mind connecting and reconnecting experiences with one another.
There was this one nightmare day as a child when I was walking home from school, and a whole bunch of boys in my grade swooped down on me, mocking me, yelling at me, calling me names.
They surrounded me, and one started yanking on my backpack, releasing it so it would bang painfully into my back – slowing down my escape. There is nothing I can do, except keep walking, and hope it doesn’t get worse.
I walked, head down, towards the library. Wanting to be in a sanctuary of books, safe from their voices and words and arms – safe from their jeers and taunts. I eventually made it and was safe.
I didn’t tell anyone about it for days, and I did my best to forget it ever happened. I was probably 12.
More than 20 years later, I walk down the nature trail near my home.
A bunch of kids are playing around by the water. One of them keeps saying something about their ‘wavy stick’ apparently referring to a branch they hold and occasionally dunk in the tidal creek beside them.
I walk by, just wanting to get past them, to not get their attention – already my brain is back to when I was 12. They laugh, at themselves, at one another. I know there’s an inside joke there somewhere and I do not want to be the butt of it. ‘Wanna hold my wavy stick’? one of the boys calls out to me.
I cringe into myself a little more but keep walking. Maybe I can get out of their reach before…something happens.
I keep walking down the trail, the kids’ laughter trailing behind me. I curl into myself a little more, waiting to hear them pounding up behind me, waiting for the attack. Waiting for my non-existent backpack to be pulled back and slammed into my back, a reminder of my inability to protect myself.
These kids don’t follow.
These kids keep playing.
Nobody is behind me, nobody is near me.
I am safe.
But there were too many common themes and my brain made that connection – and it takes hours for me to feel safe again.
I talk about good self-care a lot. I think and talk a lot about healthy eating, building routines, working efficiently, not falling prey to distractions. I talk about the importance of meditating, of feeling gratitude, of doing what I really need to do for myself. I talk about this, I think about this, I aim for this.
Often my aim falls short. I don’t follow my intentions, I don’t carry through with my goals. This morning I meditated. Something that’s on my habit list every day as part of starting my day. Today I meditated, for the first time in over a week!
The last few weeks, I’ve been obsessively playing a computer game when I could be working on my blog and my time bank and helping FND Hope. Instead of doing these things, I’m playing my game – using my decision-making energy to decide which character to heal, or what I want to work on next, rather than picking my next project, or searching for the perfect title for my next blog post.
I haven’t done my’ evening routine’ in weeks – I’m too tired and tend to just fall asleep when I lie down on the bed – yay I’m not having those sleep problems, but I’m not doing the exercises I should, or writing out my gratitude list.
I haven’t cooked a meal in weeks. The heat in our apartment has just sucked away my energy, and there’s no AC in the kitchen.
Al hasn’t felt up to cooking either – so we’ve been going to his parents for dinner some nights, having meals with friends, going to the drive through others – and hitting up the grocery store to find the manager’s specials that can keep us going. Not so healthy, is it?
I can forgive myself though, and I still love myself. I may not be doing it perfectly, or even close, but I’m doing the best I can most of the time.
My willpower itself is limited, and I know that. I’ve been thinking about doing gratitudes in the morning, instead of meditating – it’s tough to meditate when your meditation space on the porch is just too hot to go to.
Meditating first thing in the morning is hard when the only room with AC also has your partner peacefully sleeping. Meditating is hard when your body is now demanding ten hours of sleep a night, rather than 6.
I can forgive myself – sometimes you just need those low-risk decisions in the game – get some feelings of success in without a fear of failure. Besides, I’m hitting most of my big goals for my work, and the game time is occasional, often a response to emotional fatigue, or just a way to relieve stress, which I seem to have in abundance.
If I don’t sleep enough, I really don’t function well. So, falling asleep before I do things certainly isn’t the worst issue ever. Maybe I need to start my bedtime routine earlier, or maybe I need to adjust what I do before bed. Either way, getting needed sleep isn’t something to be upset about.
So I haven’t been doing a lot of cooking lately. It’s okay – when we eat out, I usually order healthier options.
When we shop the manager’s specials, same thing. I’m just not managing the heat super well, and as the weather cools down, I’m likely to have more energy, and more desire and ability to enjoy the kitchen and make some meals for us.
In the meantime, Al’s parents love to see us, getting manager’s specials are cheaper than eating out – and most of the times we go out for dinner, we’re doing so with a group of friends to get in some high-quality social time. We need that social time.
So, all in all, I’m really not doing all that badly.
One of the most relaxing things I’ve been doing recently is floating in the ocean. The waves crash around me, people jump and splash out of reach but within earshot, and my body is held up by the salty waves.
My world is spinning a little, as the currents push me this way and that. Occasionally I stand up and wipe my eyes and get my bearings – making sure I haven’t drifted too far from our spot on the beach or keeping an eye out for the big wave that may be coming.
But then, knowing all is well, I lean back and bring my feet up, stretching my arms to the correct angles of the moment. My hair drifts away a little, my legs bob near the surface. I’m not touching anything but the water. Everything is floating.
The main sound that I feel/hear are the waves crashing onto the shore – I can just hear the hissing of the sand hitting itself or other stones or shells, as the waves draw back.
My world rocks slightly with every wave – as I bob over – occasionally I feel the gathering sensation that lets me know the next wave is a big one, and I close my eyes more tightly, and maybe hold my nose as the wave jounces me around more violently, occasionally wetting my face.
I lie there, relaxed and vulnerable, trusting the waves and the water to hold me afloat and not sink me. Feeling the sun on my body. The water surrounds me. The tides gently rock me as I relax.
I want to share myself with the world, and I want those of us struggling with our own conditions and identities to feel free to share ourselves too!
The web app that I’m creating, building, thinking about – is all for our community to help one another. I have skills and talents and abilities that could really help others.
I’m already helping- I’m getting my partner in with the doctors he needs to see when he needs to see them. I’m making sure that the right information gets to the right people at the right time. I’m fighting for him when doctors are unhelpful or fail to see the right information.
But I can help many others too. Help them think about if they are seeing the right doctor. Help them figure out what their options are, help them take the next step in their journey of recovery.
But I want to help the people who are actually going to act. The ones who are going to do it! I don’t like having my knowledge or effort wasted, or doing paperwork that never gets filed.
I want and need my tribe – the people who want to make their lives better and would like to help others who want the same. So, I’m building my time bank. Structuring it so that skills and needs can be connected. Structuring it to encourage the growth of new friendships.
Structuring it to reward a good balance of actions, without punishing people for taking a lot when that’s what they need, or giving a lot without taking enough time for themselves.
I know each need has a season, and I know it all can be an effort. But I so want to make a space where sharing is easy, where sharing is comfortable, where sharing is the norm, not the exception.
If you want that too, join me in the facebook group – and together we can share our experiences, our knowledge, and our skills, so that we can all create a better world for sharing ourselves and helping others.