decks dark

Hi. How are you?

Long time, no talk.

[I’m not going to proofread and edit this, so I apologize in advance for any disjointedness.]

The last time I posted I talked a little bit about “enduring” vs. growing, living, thriving, etc. And about how “wellness” was my word/idea for 2018- how I was going to tackle a bunch of health-related stuff (physical and emotional) to try and figure out what was going on with me.

Well, a lot of what is going on with me is Dysthymia (long-term, high functioning depression). And I had absolutely no idea.

I am not new to depression. When you’re born with a neurological/spinal disease, and you have chronic pain and a bunch of different physical things going on, the [modern] medical profession considers depression part and parcel of the whole thing. This wasn’t the case in the 1970’s and 80’s, when I was growing up, but in the last two decades my doctors have been emphasizing the relationship between mood, energy, and disease more and more so it’s become part of the whole process of having Spina Bifida.

With Spina Bifida like mine, being considered “high functioning” is an extremely successful outcome, so when I’ve expressed concerns about my lower moods these past few years and told my doctors how I am feeling they tell me I’m actually doing really good, not to worry, and to keep my stress low. In fact, I usually get a “you are doing *so* well, just keep it up!” kind pep-talk.

As an adult, I’ve always been very high functioning, even when I feel like crap. It’s just easier for me to stick to my routines. Plus, if something goes wonky with my physical heath it can go into really bad territory very quickly so my life has become all about prevention, Spina Bifida wise. I do everything I’m supposed to every single day and I can rest a little easier at night knowing that I did my share to stave off any unpleasant and terrifying health surprises.

I stick to a very regular schedule- I wake up early, get Gracie up for school, do morning stuff (brush teeth, etc.), feed the pets, do some laundry/house stuff, make a green smoothie, study/write for a few hours, do some health-related stuff for an hour, swim/elliptical for two hours, shower, more health stuff for 1-3 hours (not mentioning all that’s involved because it’s a little TMI but eventually I’ll talk about it), have a meal, maybe a little bit more health stuff if it’s a challenging day, go into my studio and hang out with Grace while she does homework or whatever, work on art if there’s time or energy, fold laundry, do before-dinner prep stuff, have dinner and hang out with Tom and Grace, brush and floss, read a little, go to bed.

I don’t eat a lot of food, I don’t drink or use drugs, and I’m not addicted to anything. I take good care of myself, have obsessive hygiene. I go to all my doctors appointments, I get my hair cut once a month. I go outside every day and spend time in nature. I don’t struggle to get out of bed or exercise.

I always have health stuff going on, and a lot of my energy and time is invested in that, but I’m okay with it. It’s my life, I’m used to it, and if it means I can prevent some stuff from happening health-wise, I’m ready to do it.

But that’s about all I have energy to do.

I can’t bear the thought of anything interactive or social, because I have nothing to give and nothing to say and no energy to do either. Even email or writing a card for someone’s birthday feels like this monumental task, so I just don’t do it.  (I realize the irony, but this is more me thinking out loud and stream of conscious and not actually engaging in a conversation so maybe that’s why this is easier for me. But up until now, I haven’t had the energy to type a word.)

Lately, even opening the mail (not bills- I can open those and pay them quickly, but personal mail…) is too much. I have stopped ordering art supplies and craft things because I don’t feel like dealing with opening them up and putting them away, something I used to love doing. It’s actually kind of a good thing, because I have more than enough washi tape and watercolor paint and I’m on a bit of a minimalism kick, but still… (I do buy art books, though. Loving those lately.)

I haven’t been to a movie in more than a year because I can’t bear the thought of being in the car two hours (there and back) to go there. I feel like my extra time and energy is rare and precious and I don’t want to waste it in the car or in Naples (the nearest town).

I’ve kind of lost interest in most foods because they just taste disgusting to me – I eat regularly and healthy but it’s always the same meals. Making a decision about anything can be grueling, so I just sort of jot a lot of notes and set myself a rigid schedule and follow it so I don’t have to agonize over anything.

My irritability is high, but it’s mainly focused on the current political situation so I enjoy spending time with Tom and Grace. I spend far too much time worrying about if something bad might happen to the world and being frustrated I can’t do anything about it. I have insomnia (although reading before bed has helped tremendously). Anxiety is a common companion, although setting a rigid routine helps a lot with that.


There were a few times when I was in high school and college and couldn’t work the depression out on my own, so I had some help and started medication (which I still take to this day) and my doctors said “you got this.” And since my mid-20’s, things have been stable. I mean, I have never been the kind of person who is GLOWING with joy and happiness, but I had a lot of interest in different things and didn’t feel crappy 24/7. On top of that, I feel very safe in expressing how I feel to Tom and Grace, who are my support system. I track my emotional health along with my cycles so I have a good understanding of my emotional tides and triggers.

I was very stable for a long time. I still am stable, I just don’t feel particularly good. I love my family and my pets and I love painting and reading and swimming and studying. I am not in a place of barren despair at all. That’s not what this is.

But I am not thriving or growing, either. I’m just in this place of… well, sometimes it feels like I am sort of walking a very straight line with no beginning and no ending over a very flat and featureless desert landscape. I’m okay to keep walking it, to keep doing my thing every day. It’s just a lot of nothing. Like I’m on some timeline or something.

I always thought “well, if I feel like I’m done walking this line, that’s when I know it might be something more than me just feeling a little ‘blah’.” And then I found out that the “blah” is Dysthymia/depression.

Depression, itself, is a loss of vitality. A loss of general spark. And that’s what’s going on. I thought I was in the process of recovering, healing these past several years, and I am, but I am also experiencing depression.

I’m talking about this because depression is common, it’s real, and I don’t feel shame about it. It’s a part of my life, it always has been, and it likely always will be.

I’ve been inspired and comforted and encouraged by countless others who have stepped up the last few months (in response to the early passing of both Anthony Bourdain and Kate Spade) and talked about their experience- artists, writers, bloggers, all sorts of people sharing their experiences. Their willingness to share and talk about it has made me feel eons better about my own experience, so I felt like I should do the same.

So I think in the next few posts I’m going to talk about this. I’m going to use this journal as a place to explore this, out loud. I know this isn’t everyone’s cup of tea, and I respect that. The beauty of this vast internet is there is a lot of content out there, SO much of it, so I’m starting to realize that if I can’t deliver on what people have come here for, I can feel confident that there *is* another site out there that delivers exactly the kind of content they might want to see.

Thank you, as always, for reading.



In case you are interested:

The title of this post is taken from an absolutely beautiful, haunting Radiohead song called “Decks Dark“:


“And in your life, there comes a darkness
There’s a spacecraft blocking out the sky
And there’s nowhere to hide.

You run to the back, and you cover your ears
But it’s the loudest sound you’ve ever heard.

And are we trapped, rag-doll cloth people?
We are helpless to resist

In our darkest hour…”

I was watching the show “Ozark” on Netflix (screenshot above- it’s a dark show, but highly recommended) and this song was at the end of the first episode, and I was moved *so much* by it. It really resonated with me not just because of what I was seeing on screen, but also what I was feeling about the current state of the world and the current administration…

Radiohead has been around forever, but when they released “Creep”  I HATED that song so much it made me averse to them and I put them in my “not interested in this band” list. So discovering them now was unexpected. They have several albums worth of music and now I get to hear all of it at once.

There’s something so amazing about discovering a band and sort of binging on their music in a short period of time. It’s like discovering a whole new country of experience.

So good.