I’ve had a lot of surgeries. When I was nine years old, I had a neurosurgery that required a fairly lengthy ICU and hospital stay. The day before the surgery I had to have a test done. I don’t remember everything, but I had a bunch of wires glued to my head and a device was put on my ankle that delivered little shocks so a machine could map out something about how my nervous system was working. I really only remember that it hurt and I was pretty emotional by the time it was done. I remember trying to be really good and polite to everyone involved but feeling like I had failed to do so.
The morning of the surgery I hadn’t been able to eat anything, it was ridiculously early in the morning, and the butterflies in my stomach had risen to my throat. I was really scared. There was a possibility that I would have to be woken up during surgery to move my legs to make sure the surgeons were cutting in the right place. Did I mention I was nine years old?
Well, during the pre-op wait, a nurse brought me a Gameboy. It was a gigantic brick one with a tiny black and white screen (this was the late 1990’s). But it helped. A lot. I started playing the game and having something to focus on helped me relax. I didn’t feel like I was on the verge of panic or crying. Most of the butterflies even went away!
I remember this very vividly and I think it was the first time I consciously engaged with myself somatically. It meant a lot to me to discover this way of calming down, as I had been doing similar things before, I just hadn’t realized it yet.
Even though I couldn’t have articulated it at the time, I hated feeling upset. I knew when I felt upset, I acted upset. And that usually didn’t work out well because then the people around me would then act upset and the situation would grow chaotic. So from a pretty early age I learned to keep it all in. But it’s very difficult to keep it all in. It’s uncomfortable. You want to crawl out of your own body, it feels so terrible.
I’m really grateful for The Gameboy Experience, and it led me to seek out things to focus on when I became upset or overwhelmed. I’ve always been a daydreamer and a reader, so it was interesting to be consciously aware that these things could be tools in regulating my emotions or stress.
But the adults in my life didn’t see it that way. I got in trouble for reading when I shouldn’t have. When I felt like I was going to blow and I quietly went to find something to distract me for a bit, I was reprimanded for not staying on task.
I was told withdrawal and distractions were bad for me. I was supposed to face and deal with my problems, not escape them.
And I wanted to yell, I’m at school aren’t I? I’m in pain and dealing with surgeries and getting made fun of by other kids, yet I’m here. Isn’t that facing my problems? Give me my damn book back.
Of course, my ten, eleven, twelve year old self didn’t say this, so then my coping mechanism was taken away and I’d blow up. Then I’d be told “This isn’t like you.”
Yeah, no sh&t.
Well, let’s fast forward. I’m an adult now. And I still use withdrawal or escapism as a coping mechanism, including but not limited to: Journaling. Watching art history documentaries. Laying in bed and imagining stories in my head I may or may not write someday. Coloring. Writing poetry. Reading fan fiction. Reiki ASMR videos. Crystals.
And every once in a while I encounter someone who tells me “Uh, you know that really doesn’t work, right?” or “That’s a waste of time.” Or “That’s not real self-care.”
Look… I get it. As snarky as my tone gets sometimes, I’m not bitter. Most people who say these things are trying to help, and the ones that are just looking to tear other people down aren’t worth any of my energy anyway.
And I also know very well that withdrawal does have a destructive side. If you’re using distraction or withdrawal instead of taking a positive action that is reasonably available to you, that can be dangerous for your wellbeing. If you’re simply wallowing in shallow self-care methods instead of using them to support doing difficult or important work for your health, you will suffer. And if you are using these things to chronically avoid problems instead of supporting you to show up and face them, eventually the bottom will fall out and you will find yourself in a crises.
In 2017 I threw myself into survival mode to get from point A to point B, but the problem was… there was no point B. I did not have a plan to get out of my situation. I just kept overdosing on my meds, pumping my body with caffeine, and locking myself in a dark room every night to listen to music turned up as high as the volume in my headphones would go. I showered myself in shallow self-care and distractions because what really needed to be done seemed too big. (You can read more about that whole thing here.) By the end of it I lost my job, my hair was falling out, and I weighed 76 pounds. After I climbed out of that hole, I went on a rather anti-self-care crusade, but I’ve balanced my views again since then.
What I’m saying here is that yes, these things can get out of hand and be destructive… but sometimes withdrawal or distractions can be important tools in managing your life with chronic conditions.
Right now I’m in a situation where I’m feeling sick again, but I’m having surgery in about two months that will help. Due to the hospital schedule and my job, I can’t have the surgery sooner. But it’s not life threatening, and when I take care of myself I can manage through feeling sick.
But that doesn’t mean it is easy. There will be many days coming up I want to call in sick to work. But I need to preserve my sick leave, so I need to do as much as I can to make it. Some of this will be prioritizing rest and continuing to eat as healthy as possible and drink a lot of water. But some of it will be the citrine or carnelian I carry in my pocket to give me a little boost in energy.
Do I think that “really works”? I don’t know. But from experience, it gets me to work and through the day, even if it is just a placebo or a mindfulness object.
Unfortunately, knowing when withdrawal or distraction is a creative or destructive force in your life is largely a matter of experience and genuine self-awareness. Our egos like to trick us into thinking stuff that’s bad for us is good for us, because it makes us feel better about ourselves or takes off pressure in the short term. Sometimes we have to push ourselves to keep a job, keep our house, take care of someone, or survive a dangerous situation (or even a whole season) in our lives so it can seem like we are relying on distractions. If we get too used to that, we might not be prepared to take action when an opportunity does open up.
Having a long view helps. I ask myself what action I could take that my future self would thank me for. Sometimes that action is pushing through, sometimes that action is stepping back. Sometimes it’s drinking water and making myself take my meds when I don’t want to. Sometimes it’s zoning out and watching house restoration videos on YouTube. Sometimes it’s going to work with crystals in my pockets.
Another thing that helps is to look at the results. If my responsibilities are being met and I feel like I have a reasonable amount of control over my life then I don’t feel guilty for the tools I use to keep myself on track that others might deem mere distractions. I look for red flags and change my behavior when they show up. If I have to go into survival mode, it is with my eye on point B, and I make sure that point B that is serving me and not someone else. I also continue to balance the hard work with my withdrawal coping mechanisms.
Managing chronic conditions is not easy, but it is possible. Resilience is unique to each individual and must be built through practice over the long term. We must use all the tools available to us as wisely as possible. Physical ones, psychological ones, and spiritual ones. We must face the creative and destructive sides of each and be honest about our own coping mechanisms to make use of what works best for us.
‘Til next time, be sharp, be delicate, and don’t forget the crystals.