O Bendy Gymster: I am the Puppet Master

I haven’t been having a wonderful time with my workouts lately. There have been numerous interruptions – hormonal crap (which results in debilitating pain), piriformis syndrome (where your piriformis muscles get inflamed and then press on your sciatic nerve, causing your hip to buckle), and so forth and so on. This means that when I do manage to drag myself to the gym or to the trail, I feel sluggish and reluctant, and I can’t do what I used to be able to do. This is profoundly discouraging and disappointing. I admit that sometimes I just want to cry. (I work so hard and I’m back to square one! AGAIN.)

(note: one comforting thing is that square one has moved. Square one is now “I can only manage running 3kms instead of 9kms” when once square one was “I am allowed to run for fifteen seconds at a time.”)

When I don’t work out, I get problems. This is the source of my common flippant claim: “I work out so that I don’t fall over.” It’s a shorthand summary of the truth.

I took about a week off from any physical activity due to Crohn’s pain issues. I almost never do this. The end result was that my nervous system forgot how to map a bunch of my core muscles.

This is the part of hypermobility syndrome that’s really hard to explain, but it’s crucial to the whole system. I’ll summarise.

HMS (or Ehler’s Danlos Syndrome, depending on the categorisation) is a genetic defect in collagen production. For some people, it is fairly benign, and for others it is debilitating. What this means in broad terms is that the ligaments that whole your joints in place, making sure that the fulcrum of the lever operates appropriately, are… pretty shit at their job. If you think of your joints as levers, which they absolutely are, HMS/EDS is about having fulcrums (fulcra?) that don’t stay put. They shift. So much power is lost. I have pretty well-developed musculature (if I flex, you can see I have abs, and my body fat percentage is high enough that this shouldn’t be possible), but so much of the power of those muscles is lost simply because my levers are so bad. So much of the muscle is busy just trying to hold steady (it’s probably why they’re so buff, actually. Standing up is working them pretty hard).

(cue: GODDAMMIT LIGAMENTS YOU HAD ONE FUCKING JOB)

I’m lucky in that most of my problematic joint sockets are actually quite deep, which compensates a bit for this problem. There’s only so far my joints can move, because of the bone construction. I have a ridiculous range of motion for some things, but am limited in others. This is a good thing!

The other silver lining in my case is that – because of the coordination issue (which I’m getting to, trust me) – I was a sedentary kid. I didn’t work out. I didn’t exercise. There’s a whole story there about toxic sporting kid culture that is very important to me, but the upshot is that, unlike most people, by the time I found out I was hypermobile (mid-late twenties), I didn’t have two decades worth of heavy impact activity and resulting connective tissue damage. I had a relatively clean slate for a hypermobile person getting into maintenance physiotherapy.

So, to recap: I don’t get dislocations because my bones are helpful. I do get subluxation, which is partial dislocation, and joints moving at the wrong angle and rubbing at the wrong part of the joint. This leads to inflammation, pain and weakness.

Here’s the clever bit, and why physiotherapy helps: if you maintain good muscle tone and tightness, the muscle can actually help support those joints and hold them in place. The downside is that my lower back is always tight, because it’s holding my spine in place. The joints I’m talking about include vertebrae. I can actually over-stretch, because if I loosen those tight muscles, my vertebrae move about very slightly, but enough to cause the above inflammation. By contrast, I do get overtightness in other muscles that I do actually have to stretch – calves, glutes, and the muscle across your chest (I think it might actually be the pecs, feels like a steel cable when I don’t stretch it enough).

Muscle tone (technically: tonus) and strength sticks around for a little while if you don’t work out, but the tightness (that feeling you get after you work a muscle group really hard, which I have to do all the time) loosens fairly quickly.

Meanwhile, you start to lose that extra kinetic feedback.

In order to maintain muscle tightness and tone, you need to be able to activate those muscles. One of the problems with HMS/EDS is that you get reduced kinetic feedback. The human nervous system just didn’t evolve to deal with the enhanced range of motion; there are also autonomic dysfunction symptoms (my feet are ALWAYS cold, it’s like Reynaud’s in that way); and to be fair, the way you learn to move when you have EDS is different from how most people move. You tend to use the wrong muscles to compensate for the angles at which you’re moving your joints, and that means that the right muscles don’t get mapped properly to your brain.

As they say, nerves that fire together, wire together, and the relevant nerves just don’t get to fire.

This is basically an issue of proprioception. I essentially don’t know where I am in space most of the time and I don’t know where my muscles are.

So a big part of my physiotherapy is what we call muscle activation: it’s teaching my nervous system to fucking find the relevant muscles, and map to them. Our brains are extremely plastic in this way, so it does work, but it is hard work. I can’t tell you how many times I’ve been lying on a gym mat, trying to convince my glutes to fire and move my thighs in a clam motion. I can use the wrong muscles to mimic the movement, but the exact, correct movement require a muscle that has gone to sleep.

“Just… fire, damn it.”

The muscles that I often can’t find:

  • Glutes
  • Piriformis
  • Various core and abdominal muscles, including transverse and lateral
  • Some weird supportive muscles in my mid and upper back I don’t know the name of

When these muscles are active, when I’ve mapped to them, I feel glorious. I walk like a standard functioning human being. In order to achieve this, I not only have to do my regular physiotherapy exercises, but I also have to do a regular weights regime, clinical Pilates, and running, and lots of walking.

When I don’t do this work, my muscles lose tightness, and my brain literally forgets how to find the muscles. It does come back faster after the first few times, but here’s what it feels like when I forget.

My body feels like a stranger to me. I feel like I don’t fit inside it. It hurts to walk. It is exhausting to do most things (because using the wrong muscles is tremendously inefficient).

I feel like I am operating a badly-designed puppet, and it’s not even mine, it’s a puppet someone left at my house.

When I’m trying to wake it all up again, re-map the system, I go up stairs slowly. I place my foot, make sure it’s straight, and I twist my hip slightly, and push. My legs are twisted because of the way I’ve walked for most of my life and the way the muscles have developed. My instinctive internal rotation is ridiculous, particularly on my right side (which not coincedentally is the side where the piriformis syndrome is worst, and where the hip spasms and collapses underneath me).

I have actually given up on bench press – my favourite lift and the only one of the “big three” that my body can handle – because I can’t map well enough to set my right shoulder. It’s loose.

It’s not all bad news. I made a wonderful discovery recently!

I’ve recently taken up rock climbing, and it turns out that rock climbing encourages the sort of whole-body muscle activation that short-cuts a lot of this work for me. It’s not quite so useful for the legs (at least in this aspect – it is still a workout for the legs), but for my upper back, it is wonderful. A couple of hours at the indoor rock climbing gym is worth a week of rows and face-pulls. I basically reset my loose shoulder in one visit. And it’s fun, super-fun.

As I’m writing this, I’ve just come down with a cold, so workouts will be minimal. I try to balance my need for activation against my desire to not infect the local population with my plague. There is a fair bit I can do at home, so I’ll work on that.

I’m working on re-mapping my body right now. It’s hard work. What I need to accept is that I’ll get back, and I’ll fall down, many times for the rest of my life. I’ll end up back at square one so many times, and I’m accumulating connective tissue damage around my joints that will follow me forever.

But the alternative is to not move, to not use my body, and that’s not something I’m willing to accept.

So. It’s time to start getting back to it.

Up we go.

Singers gotta sing

One of the hardest things about being away from home is that I can’t sing – at least, not without annoying people. When I am at home, in my own space, I probably sing as much as I speak. It’s not socially acceptable to indulge in soaring, echoing vocals when in public, or when in a professional environment.

I always worried that there was something strange about this need to sing. There is a social perception of singers, an assumption that to be a performer is to be bombastic or a diva (this is not necessarily true, any more than the assumption that stage performers are necessarily melodramatic in their private lives), and it’s made me confused and shy about it. This shyness is another reason I never sought out lessons, although I’ve been meaning to do that, and I’ve been talking about it, for a good twenty years. I didn’t really want to add in something else that might make me odd, and in a way, I didn’t want my singing examined in case it turned out to be dreadful after all.

Singing is like flying to me, it’s like breathing and dreaming and I don’t think I could bear to feel bad about it (although I do have bad vocal days, and in a perfectly predictable twist, I have more bad vocal days because I don’t know what I’m doing, and every vocal technique I know has been self-taught and hard-learned in a remarkably inefficient way that could have been avoided if I’d just asked someone who knew what they were talking about). Most of my singing, my Big Voice Belting, is in the car, or in my study. Because I have hypermobility syndrome, I have a good deal of thoracic tightness – or to put it another way, my ribcage is really tight, and it’s hard to open up. It takes me a long time to warm up after a break.

I still do sing in public sometimes, little humming lines under my breath, trying to keep the notes as even as I can on as little air as possible, trying to get the music to echo in my ears. When I am happy, when I am elated, it’s a force that pushes at my throat and I literally bite my lip to keep the notes inside. When I’m happy, I want to express that by singing. I want to express sadness by singing. Even anger is something I can work through by singing.

It’s hard to write about, because of that instinctive self-consciousness, as though my feeling that I have to sing is something to be ashamed of, as though someone’s going to tell me off for “bragging” or “having tickets on myself”. Thanks, Australia. Let’s never let anyone be happy with anything they have, or anything they’ve achieved, in case they seem “smug” or “up themselves” or “pretentious” (or my favourite: “they’ve got tickets on themselves, haven’t they?”).

The reason I’m writing about it now is that I’ve become aware, ever so slowly, in the face of near-overwhelming evidence, that I’m not alone in this. There are other people who just plain desperately need to sing. Singers gotta sing. It’s not bombastic. It’s not necessarily performative (although there is certainly an element of that for me). It’s okay to want to sing.

It’s just – music. It is just living in the note.

A Day In The Life of My Picky Jerk Brain

Due to the way I am built, I function best in a world laden with routines. I need to tick off tasks in a regular way, progress on my various ventures, and not have too many interruptions. This makes me happy, and it calms my anxiety, my tendency to sensory processing issues, and other gigantic red flags which will surprise no-one who knows me. I am not adaptable to changes in my schedule. My brain just does not shift focus well. It’s hard to make decisions on the spot, so if I don’t have a plan, I just kind of sit around and fizzle and panic.

Due to the way my life currently functions, a proper routine is almost impossible. I work multiple contract jobs, and medical appointments are sprinkled throughout my calendar like confetti, writing off entire days that would otherwise be spent running errands, working, and doing the other things I need to do to keep myself sane.

My makeshift solution, after discussions with the appropriate healthcare professionals, is to make sure that I have a schedule or list of how I want tomorrow to go. Stick to the plan where possible. Build flexibility into the plan (sometimes that means being able to shuffle times around, but mostly it means constantly reminding myself that things might have to move, I might not get things done, and that is okay, as long as I get the bare minimum done, it’s okay, it’s okay, don’t panic…).

Today, I had a fairly simple plan: go get my blood test. Go to gym. Go to the post office to pick up a parcel. Then go to the train station and go to work. While on the train, call my surgeon’s office to explain that I turned out to be allergic to the terrifying immune suppressants (that’s another story). Meet friend for lunch (I’m not actually planning to eat – today’s a fasting day, but that’s also another story). Go back to work. Eventually, go home. Within the work plan, I had decided I would do either one or two batches of purifications. These are dead boring and I find them stressful, so it would depend how I was going. If I only did one, there are other useful things I can do with the extra time.

See? Flexibility. How boss am I?

So. It’s not even 10am, and let’s see how my plan is going.

I potter around the house until the pathology collection centre opens, making sure the bedroom is tidy and neat, the cat and dog each have water, and my bag is packed. I brush my teeth and go through the whole skincare regime, because I have time. I’m already wearing my gym clothes, so I pack clothes to change into when I get there.

Ooh! It’s 8am. Time to go

I head down to the place where they bleed me on a disturbingly regular basis. On the way, I start to have ideas for a story I want to write, wonderful ideas that flesh out the world and the characters and the plot. I am so happy with this that I nearly take a wrong turn (safely. I indicate and do head-checks and all that, I’m just used to turning there and today I shouldn’t).

“Whoops,” I think, turn off my indicator, wave an apology to the person behind me, and keep going to the pathologist. I get there just before ten past eight. The place opens at eight. To my surprise, when I take a number, that number is 6. The place has just opened. I expressed my surprise online, and two people pointed out that these were probably fasting blood tests and so, people were very keen.

That’s my first hurdle. That wait makes a difference to my schedule. I play Boggle on my phone for a bit before realising that I can do stretches in a waiting room without even standing up. So I do that. Long hip-openers, glute stretches, and hamstring stretches. Efficient use of time. This is okay. This is good.

My number is called. I get my blood test. Just after the lady (who remembers me from last time) finishes the draw, she eyes my outfit and says, “Are you going to gym, or have you already been?”

“Oh,” I said, “I’m going after this.”

“As long as you don’t lift weights. No weights for a couple of hours after a blood test.”

I blank for a moment. That’s a problem. That was my entire plan. And a couple of hours delay is not acceptable – I still have to go to work. Alright. Alright. I can cope. I can do this. My brain starts the panic cycle, but I slap it down like the experienced badass that I am.

“What about cardio?” I ask.

“That’s fine.”

Alright, I think, as I get into the car and prepare to drive to the gym. I’ll just do some treadmill time. I’m not equipped to trail run today, and it’s too sunny anyway. My bloody piriformis syndrome (fucking hypermobility, fucking hip pain, fuck, fuck, yes, I’m angry) is still calming down, so I won’t be able to do much time on the treadmill, but I can probably manage a gentle run if I warm up properly.

I get to the gym. My gym is currently undergoing renovations. Nearly half the parking spaces, never numerous to begin with, are taken up by utes and skips full of wood and other renovation trash. There is one parking space free. I instantly see from the way the dumpsters are arranged that if I drive into it, I won’t be able to back out.

No problem, I’m a hills driver. I reverse down steep hills and around corners every day just to get into my own driveway. I’ll reverse into this parking space. I start to get into position, and realise that I can’t do that either, because now there’s a ute that I’ll scrape and bump if I try to angle my car. I stop, fighting the panic cycle again. Okay. Now I have to reverse all the way back out of the parking lot in order to leave. I manage this with no difficulty, but I’m stressed.

Is there anywhere else near the gym I can park? No. It’s all full.

Fuck it. Fuck it. I can go to gym after work. It’ll be packed, because due to the renovations there’s not much room, but I can do that. I continue to soothe myself with promises of flexible plans, and am comforted by the fact that the iPod in the car is playing my Good Singing Day playlist, which includes Sarah McLachlan. Sarah Mac is very soothing, fairly easy for me to sing properly without stretching either the high or low ends of my range, and requires mild concentration for some surprise trills and lilts. This keeps the anxious part of my brain busy as I start up the road towards the post office.

I ignore the fact that, in my current state, there is no way I can manage an after work gym visit without hyperventilating. Monday evenings are packed and I don’t cope well. There’s a reason I joined a 24 hour gym. Right now, it’s more important to lie to myself.

My house is on the way. Maybe I should go home and change. Then I can get my keep cup, which I forgot. Also, I can call my gastroenterologist from my landline, which is more reliable than random mobile coverage on the train. Brilliant.

I get changed out of my gym clothes and pack them into a spare bag to put in the car (just in case I go to gym after work. Which in the back of my mind, I realise I am not going to do), and I call my surgeon’s office. “We are unable to take your call right now. Please leave a message…”

I hang up. I can’t deal with waiting for a call back to explain the problem and then wait for yet another call back from my surgeon. One call back is all I can manage. I sit there for a moment and wonder why they’re not taking calls. “But this is important,” I think to myself, as though only my business is important and other people call the office of a highly priced gastroenterologist for shits and giggles.

Well, shits anyway. Heh. G.I. pun. I’m on fire, people.

I dial the number again, with the same result. I close my eyes. Okay. Okay. I’ll call later, that’s all. And if after 10am, I’m still getting the same result, I’ll leave a message like the fucking neurotypical grown up that I am not, and deal with it.

I go and check that I haven’t left anything in the bedroom, and I spy Ridcully stretched out on the bed. He murrps and stretches out a paw to me. I pet him. He rolls over and shows me his belly. This cat. Goddamn it. This cat. I gently rub the belly and he purrs happily, stretching out his paw again. This is soothing. This is good. He’s very fluffy and for me this is tactile and emotional bliss. Thank god for cats.

I end the love session and walk out the front door, stopping to make kissy noises at my dog through the window. He looks at me, waving his tail happily, and then proceeds to gallop up and down the deck and bark at another neighbourhood dog currently having a tantrum. It’s going to be one of those days. I feel a bit sorry for my neighbours. He’s not usually like this.

I get in the car. I drive up the street. “Fuck the post office,” I think, “I’m already so behind and today is fucked.” I start to turn towards the train station and stop.

“Today is not fucked, you just have to rearrange things,” says the soothing voice in my head that I have worked very hard to train up. “It’s okay. It’s okay. If you go to the post office, it’s all done and dusted and you’ll feel better. Plus,” and here the soothing voice starts to cajole and coax, “You can get a coffee at the post office café and sit down and calm down, and deal with a few online tasks while you’re there, and then you can try to call the surgeon again. You’ll feel better.”

This is good advice. Thank you, soothing voice. I take myself up to the post office, still singing Sarah Mac. I’m admiring the golden autumn leaves and the sun lancing through them. It’s like a fucking poem up here sometimes, like I’m living in an Anne of Green Gables novel, only with more tourists and less Canadians.

Out of nowhere, the thought bubbles into my head that there are ulcers and lesions in my small intestine, burrowing through the mucosal layer as my immune system works to destroy my gut, and I’m so horrified by this I want to cry.

I yank my thoughts back. PRETTY LEAVES AND SOOTHING MUSIC, I insist to myself. AUTOIMMUNE DISORDERS ARE NOT FOR THINKING ABOUT RIGHT NOW.

Somehow, I succeed. I get to the post office. I manage to collect my parcel, make small talk with the guy behind the desk, and then go into the café and order a coffee. It’s perfectly decent (it’s a long macchiato, half the places I go burn them), if a bit watery. And I sit down. And I breathe.

I check my email. I sent two messages to two different people. I discreetly add a small tab of Splenda to my long mac, because “decent” turned out to be an excessive kindness. I’m about to RSVP to an invitation from my work email (I tried to do that earlier and it didn’t work, which also makes me panic).

(Word just crashed, by the way. I stared at my laptop and just said “No. NO. NO.” Fortunately, I had just saved. Thank fuck.)

After I do the above, I will try to call Surgeon Sam again. This time, I will leave a message if there is no answer. I will also call my gym and ask when the renovations are going to finish as I am considering putting my membership on hold until that is done, because I’m not coping with the new setup. Then, I will sit here for a moment. I will breathe. I may read a page or two of my current paperback.

Then I will go and catch the train.

If you’re reading this, I obviously decided to share the panicky nightmare of my morning. If you’re reading this, I decided that it was important that someone see what it’s like when this sort of anxiety takes hold. Everything gets over-thought. Everything is a potential disaster. A brain that adapts poorly tries to react to changing circumstances and marinates in a cocktail of stress hormones while doing so. None of these things are anybody’s fault. If anything, I’ve downplayed the level of stress and panic that has been taking place here.

I have the advantage that I’ve learned pretty well how my brain works, and I have a lot of coping strategies. My “soothing voice” is the main one. I also call it the voice of reason. I’ve learned to listen to it – it’s taken me a long time. I used to think it was full of shit, to be honest, but I’ve learned that I can calm myself down by internally talking to myself and reminding myself that the day is not ruined, everything will be fine, and most of these things are not a big deal. I don’t adapt well, but that’s okay, I can take my time to restructure my mental image of how my day is going.

At the same time, the anxiety is not rational. There’s a basic mechanical reason that I respond to things this way, and the initial response is not something that can ever be trained out of me. It is what it is.

I struggle sometimes.

Diagnosis Roulette: The Metaphorical Cricket Bat of WTF

My long journey towards diagnosis appears to have finally tottered to an end.

I haven’t updated this story in a while – when last we heard, our hero had discovered that 9mg of Budesonide EC was no longer effective in managing the abdominal pain. Since then, I’ve discovered that I had an FC (fecal calprotectin – don’t ask) score of 376 (it’s supposed to be < 50, so let’s hear it for “You Definitely Have Crazy Intestinal Inflammation”), and I’ve been to see a pain specialist, who turned out to be marvellous.

Absolutely marvellous. I’m now on 150mg of Lyrica (pregabalin) per day to manage what is apparently termed “Visceral Hyperalgesia” which is what happens when your viscera (innards) are so used to being in pain that your spine starts sending pain signals even when there is no reason to do so. It turns out that peristalsis should not hurt. I now rarely take my prescription codeine (although it is necessary when I break keto for fieldwork, because my inflammation and thus pain levels skyrocket). I can even take an extra 25mg of Lyrica one hour before a running workout, and the change in blood supply to my abdomen won’t cause me to stagger to a halt from pain.

To continue on this winning plan, I turned out to qualify for a pill cam, thanks to some surprisingly low iron (honestly, I was not expecting that).

This was exciting, I-live-in-the-future stuff. I actually ate a camera. I wish I’d taken a photo of the damn thing. It was probably about the size of a large fish oil pill. Then I wandered around all day with a belt and a sensor attached, while taking Amos for a walk, collecting next door’s dog for a visit, and watching Netflix. It was the most productive medical examination I’ve ever undergone, given that usually I’m unconscious at the time.

Anyway, then I went on a ship for nearly three weeks of fieldwork, during which time I was, unsurprisingly, not getting Telstra reception and thus not able to get my test results. As soon as my feet hit dry land, I called my surgeon.

And got my result.

I was right. I have Crohn’s Disease, ileal (i.e. in the small intestine). Patchy inflammation throughout, so reasonably widespread, although I’ll get more detail on how widespread when I go see my surgeon. It just hasn’t turned up in the first 80cms or so of small intestine that can be examined in a gastroscopy.

At first I was relieved. Immensely relieved. Also, surprised. I wasn’t surprised by the diagnosis – since that’s what I thought I had, for a long time – but by the fact that I actually got one. I’ve been getting medical tests that say “well… sort of?” or “you look normal, honestly” or “that’s a bit weird but…” for so long that, even after the FC score, I was still expecting the result to be inconclusive.

Now, it’s started to sink in that I actually do have an incurable progressive autoimmune disease and, while I feel a great deal better about the fact that I have an actual label I can put to what’s wrong with me (it’s not all in my head! I HAVE PROOF!), I’m not feeling great about the big picture.

My future will probably involve some reasonably terrifying immune suppressants, and it’s overwhelming. Imuran is the nominated drug in question, and Googling that made me want to curl into a little ball of panic. Fingers crossed that my reasonably good luck with side effects continues (I’ve managed to avoid side effects for Zoloft, Lyrica and Budesonide so far, because I’ve been blessed with the medication tolerance stick, but those are relatively benign drugs). I won’t find out more about it – the dosage, the risks, the monitoring plan – until my next appointment with Surgeon Sam, which is – who’s counting? – eleven days away.

What else my future will involve… is unclear. I’ve been brushing up on Crohn’s, reading the books that I’d already read albeit now with closer attention. Previously I’d been reading up out of curiosity, a bit of concern, and suspicion, as well as the comforting notion that if I did have Crohn’s Disease, I had a relatively mild form of it (this is still true. Mild for Crohn’s). Now I’m reading it with the reality that this all applies to me, at least potentially. This changes things.

My short-term goal is to get into remission. This will aid my long-term goal, which is to reach a ripe old age with my small intestine intact. This is now a goal I have to actually think about, as opposed to a smart arse off-side remark about something I might or might not have. I have to consider the literal possibility that I might have loops of my intestine resected (which is, as near as I can tell, a fancy medical term for “taking out bits of you and joining up the other bits, you’ll never notice, I swear”).

I probably have carbohydrate malabsorption (hence, why I do better on keto). I may have some iron malabsorption (hence, low iron, in spite of the vast quantities of iron-containing foods I consume on keto). There are huge categories of nutrients my damaged gut might be unable to absorb, leading to long-term issues. Iron, calcium, magnesium, folate, and the reabsorption of bile salts are all a matter of some concern (that latter one will explain the agonising gall bladder pain I occasionally get. I am hoping to hold onto my gall bladder for as long as possible, since I eat a high fat diet and I use the damn thing). The giant pile of supplements I started taking to account for deficiencies in my diet now morphs from paranoia into necessity.

Here’s my dream outcome: the terrifying immune-suppressants work, and I get into remission. I slowly wean off the steroids – and the immune-suppressants – and get to be a person who is just monitored. My flares are rare and separated by long periods of happy, non-active-Crohn’s time. My fatigue issues go away. My pain issues go away.

This is medically possible.

Whether it’s likely – and whether it’s more likely than other outcomes, which involve surgery and long periods of being unable to work – I don’t have the expertise to say.

So this is an emotional rollercoaster, but on the bright side, at least now I can stop wondering, and I can access more aggressive treatment, and I can easily describe what’s happened to me (this is crucial. Labels are very important to me).

It’s very hard to think about anything else. I might be a one-trick pony for a while.

Happy Diagnosis Day.

Motion on the Ocean

 

There is something extraordinary about sleeping on the sea, held safe in the belly of the ship. I sleep deep down in the dark, in my cabin next to the engine room, that beating, clanking, thumping heart. I feel like I am curled up in the thoracic cavity of a mighty leviathan, a sea beast that could choose to dive back down to the depths at any moment.

There is so much space beneath us, mile upon mile of water and dark.

The waves feel like the beast breathing – rising on a vast inhalation, falling down on an exhalation – rocked by a deep, slow rhythm.

The waves are soft, now. We’ve had good weather. During the day, my legs and the muscles of my belly fire and swerve to keep me upright, a rolling dance of compensation for a gravitational force that has suddenly turned as capricious as some old Hellenic deity. I try to move with it, but I am clumsy with these steps, and I end up fighting it half the time.

At night, I go limp, and I let the movement take me; and take me it does. It throws me up (softly, softly) and my weight lessens on the mattress, ever so slightly; then I fall, and press more deeply, and it catches me once again. The dance goes on, and on, and in between the steps of it, I feel like I am swimming, or flying.

It is like lying down in a dream.

 

 

Intellectual Curiosity, Passion, Downtime and Compartmentalisation

The first season of House, M.D. is, hands down, the best season. The writers are still exploring the possibilities of toxic brilliance and medical problem-solving, and it’s significantly less ridiculous than the subsequent seasons. Besides, Hugh Laurie is a gem, and we all know it.

In the episode “DNR”, a famous jazz musician with ALS (John Henry Giles) has trouble breathing, and because it’s House, wackiness ensues. There’s an exchange between John Henry and House that has always stayed with me. He commiserates with House – or celebrates; it’s not entirely clear – that they’ve sacrificed the other priorities in their lives (family, friends, other interests) for “that one thing.” That one thing that holds their interest, their passion, their furious commitment. They think about it constantly. It’s all they do and all they want to do.

That was a scene that really stuck with me. I know people like that. In writing. In science. I know people who are committed to that one thing. People who never switch off, not really.

It’s a bit of a trope, and it’s become something of an expectation.

I don’t have that. I don’t have one thing. I have numerous things, and they are all vitally, terrifyingly important to me. It’s true that I love science. I also love writing fiction. I love singing. I love music. I love narratives of all kinds. I prioritise my relationships and my friendships very highly. I prioritise my health (and let’s be clear, my health is an ongoing project. It’s not just “eat healthy and exercise.” It’s a ridiculous, time-consuming gauntlet of physiotherapy, weight training, running, gastro-intestinal specialists, diagnostic procedures, complicated recipes to stick with my complicated diet, and maths. There’s actual maths).

Most of the scientists I know are actually fairly well-rounded people. They have families and hobbies and social commitments – but they are also very committed to their work. Many of them don’t seem to have a strict demarcation between work and not-work time.

“Sometimes,” said my colleague, a friendly young post-doc, “reading papers is fun, though.”

“Noooo,” I said flatly. “Reading papers is work. It is always work.” I mean, of course, that it is always work for me, because I see it as work. I have to engage “science self” to read papers, and that in itself is work. It’s not that I don’t have that passion, or that intellectual curiosity, it’s just that if I’m trying to have downtime, I need it to be actual downtime. I need to be reading fiction, or playing games, or something like that.

If I have time when I’m not running analyses, working in the lab, writing to deadlines, writing on my own projects, working on my own health in some way, running basic household errands, or catching up with my friends (a hugely important priority but a very different kind of down time as far as my brain is concerned), I need it to be actual nothing time.

I think I learned this in my PhD. It’s possible, with a PhD, to be always working. There are always more papers you could read, or more analyses you could run, even if you’re not in the lab. Unless you set very strict rules for yourself, you could be working all your waking hours.

You’ll burn out. Most people will burn out. I burned out, for a very long time, and that’s one of the reasons I’m so wary about reading papers for “fun”, or about using my cherished spare time for anything but easy, cruisy fun activities. It took – actually, it’s a work in progress. Let’s employ the present tense. It is taking a very long time to recover from burnout. I am still burnt out. I still have panic attacks (bonus: nausea) when trying to work on data from my PhD. When I open up those documents on my laptop, I find myself trying not to cry. Burnout is a very, very bad thing. I did something to my amygdala, and whatever I did, it hasn’t healed yet.

So I need to compartmentalise. Even if I like what I’m doing, I need to stop, and do something else. I need to watch movies and drink whiskey with my husband, or cross-stitch while watching Daredevil, or play Pillars of Eternity while patting the cat. I need to spend a ludicrous amount of time working out. I need to write stories.

It sometimes makes me feel out of place. I’m here among people who are working constantly, who are driven by their projects and their work and excited by the possibilities. I’m excited by the possibilities, but PhD burnout has left me with a giant bleeding wound in my sense of intellectual curiosity. I’m wary of getting involved, emotionally, in a project. I’m wary of dropping everything else I love and throwing myself into a problem.

It definitely fuels the imposter syndrome. Because I switch off, and play games and read novels (and those novels are not literary canon, or non-fiction analyses of ecological disasters, or biographies of great political figures), I feel like I don’t deserve a place at the table.

I’m coming to terms with this. I resent the trope, and the expectation, that everyone should experience their enthusiasm in the same way. When I am switched on, when I am on shift, when I am meant to be present, then I am present. I work hard. I do good work. I contribute. I ask questions. I solve problems. But when I am off shift, I am damn well off shift, mentally as well as physically. I am not “doing science” any more (except in the very basic way that, when you’re a scientist, you have a tendency to question processes you encounter in every day life out of curiosity. That just sticks around, much in the way that, as an English major, I can’t help analysing pop culture. That mostly doesn’t have an off button either).

When I am off shift as a scientist, I become something else. I’m a writer. I’m a gamer. I’m a singer. I’m a friend and a partner and a person managing two chronic health conditions. I can’t spend the rest of my life feeling guilty for not working all the time. I am not interested in using my social media accounts to promote scientific discoveries – I use them for being my off shift self, not my on shift self.

I’m finding it hard to articulate this problem, and I’m not sure if I have succeeded. Let me put it another way.

Life is short. We don’t have much time. We have the hours that we put into our work. If we’re lucky, it’s work that you’re passionate about. Also, because we’re mammals, we need to sleep. Between sleep, and work, you have to fit everything else that you love into the other hours of the day and night. Everything else.

So even though I love what I do – and I do, I love all my jobs, and they are numerous – when I switch off, I switch off. I deal with the surprised looks when I explain that I’m writing a blog post or a story, not a paper; that I’m reading a fantasy novel, not a biography of a famous scientist (side note: again, having a major in English literature, I’m relatively secure in my reading habits. I might read several hundred trashy novels a year, but I’ve done my dash); that I’m not concentrating on some difficult analysis on my laptop – I’m actually watching old episodes of Daria (or, possibly, the Flash).

This mental screed has been brought to you by shift work and too much coffee.

Wait. Stop. Listen.

Wait. Stop. Listen.

There are worlds within our words. I think that sometimes people don’t know this. We speak to each other in voices full of echoes, words that carry the weight of our experience, but what we hear only carries the weight of our expectations, and these are universes apart from one another.

I understand the nuance of written language very well. I love the delicacy of it, the subtle richness and layers held within a single word. The commonality of cultural interpretation. The concept of a loaded word, as though it were a loaded gun, and it might go off at any moment.

These things are instinctive for me and I feel like they always have been, although obviously that can’t be true. At some point I was a child learning to read, and words were a little thinner then. Back then, the triumph was in making these strange markings on the page into stories. That was victory enough for me. I didn’t even realise that I was finding layers and nuance in sentences for years afterwards, when I learned that two people could read the same thing and experience something entirely different.

I am not so good with spoken language. There’s a reason that I use a lot of disclaimers, with the written word and especially the spoken word. If written words contain oceans, spoken words are like galaxies – except that I can’t see them. They might as well be infrared. I can feel that there is heat, but I don’t know what’s going on.

I learned at a young age that I was easily misunderstood. Those galaxies of meaning, of emotive spoken language, the body language, the tone, the intent, and even the social rules governing the interpretation of words themselves? They were invisible to me. I could neither see them myself nor make myself seen in them. When I delivered words, they were flat and blunt. I can emote when singing – there are galaxies in music too – but not when speaking.

I hurt people, and was hurt. I still remember a friend who stopped speaking to me when I was eleven because of something I said, something I didn’t consider particularly insulting or offensive. As far as I knew, I was just making conversation. Perhaps I was too blunt, and too careless.

I got older. I tried to be more careful. I was still blunt, and still careless. I still hurt people by accidental speech, and still I was hurt when I was misunderstood.

I watched people when they spoke. I tried to learn. I watched their body language. I listened to their tone of voice as though it were the readout from sonar mapping equipment, something that would stop me walking into walls, and in a way that is exactly what it was.

In a way, learning this consciously, by paying attention, gave me an advantage. I realised, with horror, that people speak past each other all the time. I realised that what one person says is not what the other person hears. I realised that two people can be being factually correct and honest and still be having two completely different conversations. I realised that people would over-interpret body language, and come to opposite conclusions, fuelled by what they wanted and what they feared, and not at all by what was being said.

My instinct – one that I still have, so strong that it is almost overwhelming – is to say “Wait. Stop.”

“Wait. Stop. Stop. Listen. Listen.” To point at one party. “You are saying that X, because of Y, is Z.” To point at the other. “You are pointing out that, given the fact of Y, Z and X are the same thing. You are saying the same thing. Stop arguing.”

If you think this sounds an awful lot like an undergraduate humanities tutorial, you’d be right. I can think of at least six subjects I took, off the top of my head, where a good half the time was wasted by people talking past each other, because they didn’t stop to think about the baggage- the nuance- the expectation- of speech.

Watching characters arguing in TV shows is a special torture. “Wait. Stop.” They don’t say or ask the simple things that could resolve the situation. They don’t wind back to find out what they really mean. They leap to wild conclusions about what has been said. Their inability to understand one another, to sit down and find their common language, is a plot device, and it is almost physically painful to me. I once put down a book I loved for eighteen months, because the big misunderstanding, as a plot device, gives me profound anxiety.

I am terrified of being misunderstood.

I’m human. Being misunderstood is inevitable.

I now take a great deal of care when I communicate. I add in disclaimers. When I say that something makes me happy, that I love something, I always add that “this works for me. It might not work for you.” We live in a world where, whenever you say you are happy about something, whenever you say you have done something that works for you, you are supposed to be judging people who do different things and want different things. I’m not. I’m honestly not. I love exercise, and I talk about exercise all the time. I love the way it makes me feel. I love that I can walk around without pain. But my talking about gym does not mean I think everyone should go to gym. My love of diving and writing does not mean I think everyone will love diving and writing. My fondness for my monogamous, married, heterosexual relationship does not mean I think everyone should be monogamous, married, heterosexual or in a relationship.

I do not expect people to share my preferences. I do not expect people to share my fears or my drives. I fully believe myself to be odd, but then, I also believe that everyone is odd.

That’s the problem. We speak the same language (well, let’s assume that for the moment) but everyone is carrying a different lexicon.

I wish I did not have to use disclaimers. I wish I could just happily, boldly say that I am not interested in something without it being an insult to the person who is interested in that thing. I wish it was alright for people to like different things, want different things and need different things, without having to state outright, every time, that I understand this, and it should be assumed in everything I say.

But my lexicon is peculiar to me. My assumptions, and the nuance that I inject into words, are peculiar to me. There are some common cultural associations, but these are so layered. They all mean slightly different things to different people.

Now, I see, I’m belabouring the point. It just bothers me. Being able to communicate with one another, being able to speak clearly, to dig through the baggage and the confusion to find out what you’re actually trying to say – these are so important, so crucial to being a human being who has to relate to other human beings. The people we are closest to get to build a new dictionary for us. They’ve learned our language.

I just wish that wasn’t such a painful process.

Maybe one day it won’t be.

Until then, I will keep trying to be very careful, and sometimes I will be blunt and careless. I will misunderstand. I will be misunderstood. I will hurt, and be hurt, and I will say sorry.