I realized recently that I have some hard truths to face and that those of the medical variety are kind of the least of it. After all, I’ve been living with my illness for a long time now, whether I’ve known what to correctly call it or not. Yes, it’s been a bit of a mind-fuck to contemplate changing the name of my disease and how I care for and protect myself (yet again). Yes, it’s been very difficult realizing that many of my behaviors over the last 20 years has caused permanent damage to my body and I have lost mobility I can never get back because I listened to idiots (many of which who have medical degrees) who assured me that being active would not come back to haunt me in my later years. Yes, I am afraid that this is probably the best I can ever expect my mobility to be ever again. I mean, fuck. Who wouldn’t be upset by all this? There is a whole truckload of upset on each subject alone. Still, the atrophy of the physical self hasn’t caused the dragging-me-down-so-I-can’t-sustain-that-fake-ass-smile-for-longer-than-10-seconds-without-toothpicks-propping-up-the-corners-of-my-mouth kind of miserable; it’s the severely stunted emotional growth that somehow came along with it.
My first clue? I can’t stand to be alone in a room with myself and will make any and every excuse not to be, for oh—the last 8 years, give or take. I fill my time and my mind with anything and everything I can to not have to think about my life, my fragile mental state, the constant inner turmoil, the tears I’m constantly holding back or the deep well of loneliness and terrible abandonment issues I’m refusing to address. I read, I listen to books, I research, I chat, spend hours in support groups on other people’s problems, shop on the internet at the level of obsessive pro, watch hours of stupid television shows I care nothing about, watch makeup and nail polish tutorials and experiment with the gobs of crap I have shipped to my home. I spend countless hours perusing stupid memes on Facebook which I like and share and comment on and tweet and blog and on it goes until there is no more I.
I do these things so I don’t have to think about the family and friends that pushed me away and I pushed away in this maniacal game of reverse tug of war, how much I loved them and how much that love hurt. I do these things so I don’t have to think about the kids I could never have and weren’t allowed to adopt. I do these things so I don’t have to think about how my self-esteem wasn’t quite as strong as I thought it was when everyone walked away and the accolades in my professional and academic life dried up. I do these things so I don’t have to think about how every community of which I was ever a part slowly turned its collective backs from me in silent agreement that because I am homebound and disabled I no longer count. I do these things so I don’t have to try to figure out how to make peace with being a people person forever without a people.
My avoidance of these things is only perpetuating my inability to let go of them. I know this from my extensive experience with therapy, interpersonal growth and overcoming a childhood filled with neglect and abuse. Knowing this doesn’t always make it easier to get to work, though. If anything, all those childhood problems have commixed and intermingled with the emotions brought up by my disability,muddying the waters and making it very difficult to tell where one problem ends and the others begin. Am I rehashing old issues or are they new? Are they rooted in old bad habits and I just need a tune up (a few reminders) or do I need to start from scratch? These are questions I ask myself from time to time, feeling like I’m getting somewhere, even reaching understanding, but sometimes this knowledge seems obtrusive and even unhelpful because yes, I know the theories, but it doesn’t always help me get them into practice.
Another big problem with making any strides in my emotional health since I’ve become disabled comes from the nature of my illness and dysautonomia. Some of what I deal with is organic. How do I know when what I am feeling comes from life circumstances or is being heavily influenced by my dysautonomia? Sometimes I do, sometimes I don’t. Panic is clearly felt. Anxiety is sometimes clearly felt. Depression has layers. Sometimes I need objective help to see it clearly and it’s really not conducive to work on my emotional health when I’m in the grips of an organic episode.
Certainly it would help to have professional help figuring some of this out, but I live in an area where there is a massive shortage of qualified counselors. It takes months to years to see a counselor. Every time I get on a list by the time I get an appointment, either my insurance has changed or the provider no longer takes it. I can’t win. It’s truly ridiculous and impossible to get help unless you are ready to do harm.
Waiting for an appointment with a practitioner here has just become another stall tactic. I have to take things in my own hands and I know I have the tools I need to do it. I’m beginning by clearing away the distractions. No more Facebook or twitter except for blog interactions. Therapeutic art projects only. No more shopping (my budget will thank me) or unnecessary TV viewing. No more endless hours of meaningless chats or help sessions for other people.
In place of these old bad habits, I am once again taking up my regular meditation practice which I know is good for both my emotional and physical health. In addition to this, I have been seriously considering my spiritual health and the many stupid reasons I allowed it to lapse and the ways I want to embrace the natural and spiritual world again.
One tool that has always been key to my emotional health is journaling. It’s how I came to writing in the first place and it’s how I originally found positive emotional and spiritual health and wellbeing. I will write everyday on a topic that I’ve been struggling with, dissecting it and trying to understand what it is that I’m getting hung up on about it and how to move forward in my thinking about it. What ideas can I replace it with? How can I shape my life differently or what things might I look forward to or find rewarding instead? Those kinds of things.
Another thing I can do is look for information about these subjects from other people who have struggled with the same issues. Maybe they have a unique perspective that I’ve been missing or some insight that will help me, too. I may not have access to a professional, but there are plenty of resources to be had out there, including some workbooks and other options that might help me on my journey.
At this point, I am dedicating myself to spending some time every day on meditating, journaling, or doing some sort of therapeutic art. Anything that will provide me with the headspace to think about my life and put it fully in perspective, learn to be alone with myself again and actually enjoy it. To learn to like myself again, because I just realized that I really don’t and that tells me just how dire I’ve really let the situation become.