Sometimes life is so tragically hilarious that you could laugh or you could cry, but when you’ve shed enough tears to fill a pool, laughter is nearly the preferable way to go. If you can swing it.
I’m laughing because it’s New Years Eve, I’m in 5 day old pajamas and have only left the house by being driven by my parents to urgent care over the weekend and for x-rays, blood work and an ultra sound at the clinic today. Now I’m at home, listening to the coonass neighbors set off what sound like homemade bombs, Monty is never more than a foot away from me as he’s afraid of what I can only assume he must assume are the end times out there…
OK so then on top of this somewhat sad, funny setup, there I was watching The Antique Roadshow with my parents. Marc was already half-asleep in his chair. Well, I’m 34, I’m going to kiss Monty for NYE, and it’s anyones guess how late I’ll stay up. Then around 10ish my mom told me she was exhausted and going to bed. I’m at home now, attempting to write, which I’m deathly afraid I’ve forgotten how to do so excuse the caca that may emerge through the next few posts while Stella gets her groove back. The point is, I’m 34 and peeing every 20 minutes and I doubt I’ll make it to midnight. Now that’s comedy! At least we’re not watching My 600 Pound Life…that show can really get you down.
Anyway, I wonder how many other asses were kicked besides mine due to the intrinsic chaos attached to the Holidays. Because you can considered mine booted. Crashed and burned. And it’s raining outside! Some easy reasons to be blue, but rain is actually a huge part of why I love living in the south. My dad always said rain was a sign of balance–and on every occasion some small shower falls from the sky and comforts us all in some way that he’s still there…still looking out for things, even when they’re a catastrophe. Maybe this year it means the scales will tip a little further in the direction of help for the MECFS demographic–help even the ‘playing field’ when it comes to our efforts for change. Maybe I’m just a hopeless romantic. But hey, he’s helped out before.
The biggest bummer besides my body failing is that cognitively it’s been spaghetti brain all over the place a lot of this year. Especially the last 6 months. And it seems like the brain needs rest the same way a physical crash requires one. But writing is my outlet. I feel angst when I don’t write here. Doing it forces me to remember, be patient and grateful and most of all, to help restore my hope. It’s aways been something I can do despite being sick. So to not feel like I can creates a void among voids I’m already fighting. It’s hard to know when to just stop and take a break, or when to just keep writing through it, even when it seems to kind of…suck.
I write through a lot of it and post very little. I tell myself I’ll stop doing that because that fear of bad writing can really tailspin into no writing, and that’s the worst you can do. Inspiration can hit you in the middle of doing what feels like crappy, worthless work. And it seems less likely to be struck by anything meaningful when you’ve turned your back on trying because you’re afraid it will be bad. Sometimes it will be…I think you just write through it. Or you become a lowly loser blogger whose only readers consist of your sister and your aunt Amy. They were the first followers of this blog :)
Writing and thinking and speaking coherently have become so much harder this year. Half of it do to the meds I have to take to control the RLS and skin crawling, where life is just not possible without the treatment. When I picture my brain I see a six lane highway with bumper to bumper traffic that spans for miles with no way to exit besides getting out and walking. It’s so cluttered up there, forgetful and all out-of-order. Luckily it is the pace of writing, its’ patient ability to wait for me to think of words, that allows me to continue. Unluckily, it takes me so much longer to write than before, and by the end I can’t gouge if it makes any sense so I skip it and say I’ll come back to post later. Guess who doesn’t post later? So there’s about six….thousand… of those suckers just open on my computer, waiting to go somewhere. I just need to stop being a pansy and post. What’s with this damned hesitation? Good grief.
It hit me this year how hard it is to be around people who aren’t sick simply because it brought me up close to what a typical life looks like. I tend to forget how dysfunctional mine is. I watched as they would make breakfast and listen to loud music in the morning and carry babies and take showers like it was nothing. Of course it’s nothing. That’s what a healthy life permits you, and so it can be a bitter reminder of the things that are marathons for you, when you see just how easy they could be thoughtless tasks. But this is why sickness is always encouraging consciousness if you’re to live with it and find peace at the same time.
If you kept a list of “can no longer do’s’, you’d run out of paper and possibly lose your mind. In day-to-day life, you have this *creative challenge* we’ll call it, to just hang tightly on to what you can do, what you have, and squeeze the hell out of that lemon for all the juice inside it. Years ago I had to learn to start counting up, not down, in my everyday life in order to keep going. To find momentum, purpose, laughter, creativity–all that cheesy crap they write on picture frames at TJ Maxx–you’ve got to find your small pieces of joy and feed them until they start to return the favor tenfold.
It would be easy enough to be depressed on a day like today. It’s New Years Eve, and I know my friends are picking out fancy outfits for the night. They’ll drink and dance and party. Since we spent most of today at the doctor getting x-rays and ultra sounds and blood work after a bladder infection seemed to move to my kidneys, I think it’s safe to say there’s no partying for my NYE. But that’s OK. I mean it sucks, it’s OK to say it sucks, but it’s OK too. I mean here I am talking about my bladder to strangers on the internet! Should I get into my bowels? I won’t, they’re fine.
I really wanted to write tonight because I was thinking of all the people in similar situations as me–particularly all the sickley’s out there. I just wanted them to know that if you’re feeling low, well 1, that’s understandable. But 2. try hard to remember you’re not alone in all this, even if you’re by yourself. I know it’s difficult to take that seriously. But I also know how isolated it can feel when you turn on the TV and see two million people partying in Time Square while your miles away in PJ’s, in bed, etc. I hope you remember how many others of us there are, going through the same or similar experience, missing out on overhyped parties and whatever else is happening out there.
We’re still connected to each other in some way, and I don’t know how to convey it exactly in a way that really eases the loneliness that nights like these tend to reinforce–but the numbers don’t lie. There are millions of us, all in similar boats. And we don’t have to know each other deeply to know we’re out here. I’m one right here!
Let’s also not forget, we tend to imagine these elaborate parties with tigers on leashes and super models serving champagne on a rooftop with views of NYC, but they’re never as good in reality as they are in our minds. Tonight is just a change of numbers. Tomorrow will be back to normal.
The difference is that it’s 2019, and I plan on working so hard and creatively with my efforts in getting the NIH to see what they don’t appear capable of seeing. -We’ve already made a breakthrough, (more on that next time) and established an important connection. Was their response satisfactory? Haha, NO. Not by a long shot. But this was just one of the first steps, and there will be many more to come.
I would ask anyone at midnight to just stop and focus their attention for even a few seconds on major change for MECFS. Think about the things you want to happen, even if it seems obvious, and send it out into the world. Maybe the desperate changes we need will converge somewhere in the universe, meet over some remote place above the Atlantic Ocean and help make things work in our favor. I believe we can do what we’ve set out for. We just have to continue to help each other, support and carry one another through when the work is too heavy, and never lose hope that we will get through to the right people and that the work we’re doing is crucial. We will attain the change we need, I know it. At midnight that’s what I’ll be thinking of, and I hope you’ll join me.
I truly hope everyone had a happy holiday, sick, well, or in-between. I’ll see you tonight in the stars somewhere. I wish you all the best, and if you’re like me and you’re going to kiss your dog at midnight, maybe also make your wish, kiss your fingertips, and blow it out into the cosmos. I believe in the power of energy if nothing else. Whatever you do, don’t lose hope, as impossible as that can feel. Try to imagine how amazing it will feel when our efforts come to fruition. The advocacy world has made some major progress this year. Now, we just need to get the government to follow our lead :) easy peasy! I think 2019 will have much bigger things to come, so hang in there with me. I need ya.
Health, Happiness and HapPEE New Years!
**I promise this is the last blog that’s so long. I’m fixing it, ok? My brain is thinking in non-sequiturs. I’ll fix it.