God help me, I think I lost the signal.
Writing is my two-way radio, particularly since I spend so much time in solitude, which really depresses me only four to five times a year. A very specific void opens up and I know I need to see and visit with people who find the same things as funny as I do.
Otherwise, Monty and my parents and staying up late drawing or reading or writing have taken up a lot of my life. It’s been a hard but good life, and I imagine all the time what it will be like when I’m not sick anymore. I watch people working their everyday jobs, knowing they can’t know how lucky they are to do such mundane things without a second thought. That’s the typical way, and it will be a really incredible moment when I shower and don’t give two thoughts hesitation until I’m applying face lotion later and realize I didn’t have to plan that shower I just took.
But back to my two-way radio. Something happened. I’m on one channel and the world is on another. Somehow the signals became switched over the last few months, maybe years…I’ve lost count. I only know it was much easier once, this writing. Suddenly the process became very arduous and tied into webs. I still write everyday. I still turn to it. But I know I’ve grown afraid, I’ve let the voices inside get to me and keep me from sharing what I’ve written out of fear. That’s pretty foolish Mary. Thanks, I know. Which is why whether this post is good or bad, I apologize but I have to post it. It’s the only way I know how to hush those voices and thoughts. It’s the only way to grasp some kind of momentum, move on, and not lose my inner voice completely and my ability to hear the world through my radio. I haven’t stopped listening, it’s just been harder and harder to make sense of the output.
This is halfway because my cognitive function has felt toyed with. I lack mental clarity and trust and staying on route. My thoughts meander and pivot like goldfish in the back of my head and it’s impossible to catch one before they’re swimming in a whole other direction. It’s so easy to convince myself there’s too much at stake (really there’s kind of barely anything) and throw in the towel when I’m inches from the finish line.
I’m going to try hard to stop doing that. I’m going to go ahead and hang my dirty laundry out to dry, that way it can’t convince me in some corner of my mind that a fleeting thought should make up such a definite decision.
I can barely keep my eyes open. But I promised myself I would finish this, because I know I’m the only one who can get myself out of this sticky web that has me all balled up and disoriented.
It’s been a terrible a day. I’ve been crashed for weeks and weak as hell. I finally regained a little strength today, but when trying to fill two prescriptions at my old stomping ground, Walgreens, one was denied by insurance and the other has some manufacturers shortage. They told me to try calling back in a month to see if they would have it then. A month? It’s not socks lady, it’s medicine I need and take everyday! All my energy and emotion went to trying to fill this simple prescription, and my poor mom was back at putting out fires all day while still trying to recover from the Holidays herself. Matt has been a lifesaver with his reassuring voice and enthusiasm to help–an encouraging voice that we’ll get what is needed. I’m lucky to have good people in my life. I know it.
I have enough medicine to last me until tomorrow. If Walgreens doesn’t come through tomorrow, I don’t know what I’ll do. Figure it out like we always do, but I hate how much of such precious, limited energy I have all goes to figuring out how to fill a prescription that life is not doable without. This medicine controls my extreme restless legs/body and the skin crawling I get on top of it. It is pure hell trying to exist without some type of medicine to quell the feeling. It’s also hell that suddenly you call to refill what should be easy and are told there’s a manufacturers backorder and “good luck finding that.” It’s a complicated world, and every month is like this. Never is it a simple refill and go.
Still, I’m lucky I don’t have to handle all of this on my own. But it’s just too much some days, and all you can do is let out a good cry and remind yourself it will be OK. It’s just overwhelming, and this is one aspect of navigating an orphaned disease I wish the NIH could see. This tiny aspect of it–nothing compared to what others endure– and still the amount of time and space and energy it takes up in my tiny little life is uncanny. You’re left to fight battles left and right, but you’re not left with any energy to do it. If you’re lucky you’ve got someone to help you–but that is pure luck it seems.
Anyway, this was supposed to be a post that explored my response and take-aways to the NIH reply to our petition. But I’ve been trying to finish the last 10% of that blog for a month now. Everything is slowed down–mind, body, talking for gosh sakes. I will finish it, but first I have to find a way to get the medicine I need, then I need to slow down long enough to get my radio back on the same channel as the rest of the world. It’d be easier if I had some strength and didn’t feel weak as feather carrying a stone of a body, but I imagine that will come back to me in time.
I can’t stay awake anymore. But I didn’t want to let the voice, the hindrances win. The web tangle me up to where I couldn’t emerge whole. I’m the only one who can get myself out of this writing mess, so I’m hellbent on doing it. I ask you to wish me luck that tomorrow goes better, and I can concentrate on ideas and not convincing Walgreens reps that I’m no drug addict and would just like my medicine so I’m not living in misery, with a cherry on top, please.
OK, I’m sorry this isn’t more substantive. It’s just the first step through this damn ring of fire keeping me from doing what I know I’m capable of, what I feel called to, but I’ve somehow been convinced there’s not any value in. I’m breaking through the wall, if only to remind myself that fear gets me no where and if I could just trust myself like 10% more, I’d probably feel better about everything.
At any rate, thank you to those who’ve stayed with me through these writing ups and downs. I know there’s been a lot of downs, but I believe there will be more ups to come.
Health, Happiness, Goldfish In the Brain