Four months ago, my shunt failed.
There are more dramatic ways I could phrase that. My brain was under too much pressure. The piece of medical hardware that had been keeping me alive for most of my life stopped doing its job. I had emergency brain surgery the following day and came out of it with a revised VP shunt, another scar, and the slightly surreal knowledge that I had just survived the fourth brain operation of my life.
I’ve already written about some of this. What I haven’t really written about is what happened afterwards.
Not the wound healing, going back to college two weeks after surgery, or the fact that four months is both quite a long time and almost nothing when you’re recovering from brain surgery.
I mean what happened to my baseline.
Looking back, quite a few things I had accepted as just how my body works have either disappeared or become much less severe since the surgery.
That has been stranger to process than I expected.
I Had a Headache. Constantly.
Before the shunt failure, I had headaches constantly. Not dramatic, incapacitating migraines every waking moment. It was more insidious than that: there was almost always some degree of pain in my head.
It became background noise.
If something hurts for long enough, you stop treating the pain as information. It stops being an event and becomes part of the environment. You sit differently. You concentrate around it. You get irritated without necessarily knowing why. If somebody asks whether you’re in pain, you have to stop and check because the answer is technically yes, but the more useful answer feels like yes, obviously, what does that have to do with anything?
Apparently, quite a lot.
Four months after the revision, I barely get headaches.
I still get them. I’m not declaring myself cured of ever having a sore head again; that would be a stupid standard for anyone, never mind someone with hydrocephalus. But the difference is enormous. Something that used to be almost continuously present is now noticeable mainly because it is absent.
Every so often, I realise I’ve gone through an entire day without my head hurting.
Then another.
And another.
There is something bizarre about discovering silence only after a noise has stopped. Before surgery, I didn’t consciously think my head hurts all the time. I knew I had headaches, but familiarity had flattened them into normality. Now I have enough pain-free time to compare against, and the old baseline looks ridiculous.
My head was hurting constantly.
That probably should not have felt normal.
It did.
My Brain Is Also Quieter
The mental change has been harder to describe.
For a long time before the failure, I had an enormous amount of anxiety. Not ordinary I have something stressful happening tomorrow anxiety. Mine could become paranoid, irrational and occasionally psychotic. Thoughts would acquire a level of threat completely out of proportion to what was happening. Small problems became catastrophes. Uncertainty became danger. Once my brain got hold of something, convincing it that everything was fine could become almost impossible.
I’m reluctant to say the failing shunt caused this. I can’t prove that, and brains don’t provide convenient changelogs when you replace a defective component.
But I can describe what happened.
The shunt failed.
I had surgery.
In the four months since then, that particular kind of anxiety has been almost absent.
Not all anxiety. I still worry. I still get stressed. Neurosurgery did not grant me enlightenment.
But that horrible, reality-distorting edge has barely been there.
Things happen that, six months ago, would have sent me into a spiral. Now I get annoyed, worried or upset, and eventually the feeling passes. My brain doesn’t seize on the problem, build an elaborate threat model around it and refuse to let go for the next twelve hours.
It’s difficult to explain how profound that feels without making it sound as though I’ve become a different person. I haven’t.
If anything, I feel more like myself.
There is simply less noise around everything.
Then There Were the Spasms
I have cerebral palsy. Spasticity and involuntary movements are not new developments in my life.
What was new, in the run-up to the shunt failure, was how bad they became.
My spasms had been worsening significantly. They were frequent and severe enough to become one of the clearest signs that something was changing, although at the time there were plenty of possible explanations and no flashing sign above my head saying YOUR SHUNT IS ABOUT TO FAIL.
Bodies remain irritatingly committed to providing no useful error messages.
After surgery, the spasms mostly stopped.
That still feels strange to write.
My cerebral palsy did not disappear. The underlying brain injury is still there, and I still have the body I’ve always had. But the severe increase in spasms that had become part of everyday life largely vanished after the revision.
The contrast is difficult to ignore.
Looking back, several things were getting worse at roughly the same time: the headaches, exhaustion, anxiety, spasms and general sense that I felt absolutely fucking horrible without a useful explanation.
Then the shunt failed loudly enough that the explanation became unavoidable.
I sometimes wonder how long it had been deteriorating before that point.
I don’t think I can ever know.
Thirteen Hours
The thing that has not disappeared is the tiredness.
Today I slept for just shy of thirteen hours.
Thirteen.
I would love to report that I woke up feeling as though I’d absorbed enough sleep to power a small city. Instead, I woke up and remained tired.
Some days are better than others. There are days when I can sit at my computer, write software, talk to people and feel reasonably functional. There are other days when my body looks at the schedule, deletes it and decides we’re sleeping now.
I mentioned this briefly in my birthday post: recovery doesn’t always look impressive from the outside. Sometimes it means doing things. Sometimes it means your body rendering you unconscious for half the day.
The latter does not make for a particularly good GitHub contribution graph.
I’m four months out from brain surgery. Four months feels long because an entire season can happen in that time. I’ve finished college, turned twenty-one and shipped software. Life has kept moving around the recovery, so I sometimes catch myself thinking I should be finished with it by now.
Then I remember the sentence.
Brain surgery.
Four months ago, somebody opened my head and replaced part of the system responsible for draining fluid away from my brain.
Perhaps being tired is allowed.
Some of this may also be chronic illness doing what chronic illness does. I have never operated from the factory-default human configuration. There may not be a future point where I wake up after eight hours, leap out of bed refreshed and begin enthusiastically jogging somewhere.
That would be out of character for several reasons.
I don’t know how much of the sleep is recovery, how much is my usual chronic fatigue becoming more obvious now that other symptoms have quietened down, or how much is my body taking the opportunity to recover from a long period of stress.
Probably some mixture.
I’m trying to stop treating sleep as wasted time.
If I sleep thirteen hours because my body needs thirteen hours, I have not failed to use those hours productively. My body used them. I just wasn’t invited to the meeting.
Existing Is Tiring
Chronic illness makes ordinary life involve a lot of calculation.
If I’m going out with friends, I have to think about how much walking there will be. How far is the station? How far is the destination from the station? Are we going somewhere afterwards? Will there be somewhere to sit? If I use most of my energy getting there, will I enjoy being there? How much am I borrowing from tomorrow by doing this today?
I don’t want to think like this. I would like to hear “do you want to go out?” and have the only question be whether I want to. Instead, there is often an invisible spreadsheet running in the background, tracking steps, energy, pain and recovery time before I have even left the house.
Disabled and chronically ill people are generally expected to adapt to society, rather than society adapting to us.
Most of the world is built around a particular kind of body and energy level. People are expected to walk a reasonable distance without thinking about it, stand for a while, get up at roughly the same time every day, work or study for hours, travel somewhere afterwards, socialise and do something similar the next day.
These assumptions are rarely presented as assumptions. They are treated as neutral.
The stairs are the normal entrance; the ramp is the accommodation. Walking half a mile from the station is the normal journey; needing a taxi is the adaptation. Eight hours of work followed by an evening out is an ordinary day; needing to lie down halfway through it is the abnormal part.
The environment gets to remain neutral.
My body becomes the problem.
Even when accommodations technically exist, using them can involve more planning. Is the lift working? Does the venue have seating, or does “accessible” only mean step-free entry? Is the accessible route twice as long? Is the thing technically possible but still going to leave me recovering the next day?
Accessibility is often framed around whether a disabled person can get through the door.
That is a low bar.
Being able to enter a building does not mean I can comfortably participate in what happens inside it. Being physically capable of walking somewhere does not mean doing so has no cost. Being able to push through fatigue does not make the fatigue disappear.
There is also a strange moral value attached to endurance. Getting up early is good. Working long hours is good. Being busy is good. Walking instead of getting transport is good. Going out despite being tired is good. Cancelling because your body has had enough tends to require an explanation.
Sometimes I internalise that too.
I catch myself wondering whether I’m being lazy because I don’t want to walk somewhere, when the actual calculation is that I probably could walk there but doing so would use a stupid amount of the energy I have available.
Those are not the same thing.
I should not have to run myself down to zero before I’m allowed to make something easier.
A day out with friends can involve transport, walking, standing, noise, keeping up with everyone else and recovering afterwards. Most of that calculation is invisible because, ideally, I have done it before leaving the house.
Sometimes it is worth it.
Usually it is.
I like seeing my friends.
I just wish the cost were lower.
Apparently Twenty-One Is Too Young
I am twenty-one, and some people still hear that number and assume disability should not apply to me yet. There is a persistent idea that youth comes with physical ability by default. You are twenty-one, so you should be able to walk everywhere, stay out all day, sleep for six hours and do it again the next day.
Except I have been disabled my entire life.
There was no healthy, able-bodied version of me at eighteen who suddenly broke at twenty-one. I did not age into cerebral palsy. I did not acquire hydrocephalus because I left my teens.
Disability does not have an age requirement.
The assumption that I should not be disabled because I am twenty-one is both ageist and ableist. It treats youth as synonymous with health and disability as something that only becomes believable once somebody reaches an arbitrarily chosen age.
That is not how bodies work.
It gets stranger when the disability is not immediately obvious.
Some people seem to want evidence.
I don’t mean a doctor, benefits assessor or someone responsible for providing an accommodation needing documentation. I mean ordinary people deciding that because they cannot identify every condition by looking at me, I should be prepared to prove it.
As though I should carry my medical records as evidence that my body works the way I say it does.
My medical history is not a verification API.
I should not have to explain the neurological history of my brain, list surgeries, disclose diagnoses or produce paperwork before somebody accepts that I cannot comfortably walk that far or need to sit down. The fact that a disability is not obvious to someone who has known me for thirty seconds does not make it less real.
There is a particularly irritating irony here. Disabled people often spend years learning how to manage symptoms and navigate a world that was not designed around us. When we become good at compensating, much of that effort becomes invisible.
Then the invisibility itself gets used against us.
Apparently I’m supposed to struggle visibly enough to be believed, but not so visibly that I become inconvenient.
Too Healthy to Believe, Too Disabled to Respect
Then there is the stereotype that disabled people are lazy.
That turns needing support into a moral failure.
There is a persistent idea that anyone receiving PIP, Universal Credit or other state support must be sitting at home doing nothing while everyone else pays for them. People talk about disabled people living off benefits, scrounging, taking taxpayer money or being a burden on society, as though a social safety net becomes suspicious when somebody needs it.
The contradiction is difficult to miss.
We are expected to overcome barriers largely by adapting ourselves around them, and then some people treat needing financial help with the cost of being disabled as evidence that we have failed to adapt hard enough.
Apparently the acceptable disabled person is one who works exactly like an able-bodied person, asks for very little and costs the state nothing.
That person does not exist.
More importantly, productivity should not determine whether somebody deserves a decent life.
Plenty of disabled people work, study, care for others, create things and contribute to their communities. But even if somebody cannot do those things, they still deserve housing, food, independence and dignity.
Some people cannot work. Some can work only part-time. Some can work for a while and then become too ill to continue. Some can do far more than an observer expects but need support because doing it costs them more.
None of that makes somebody a leech.
This is where the standard becomes impossible. If you appear capable, your disability is questioned. If you need substantial support, your character is questioned.
Too healthy-looking to be believed.
Too disabled to be respectable.
There is apparently a narrow acceptable middle ground where disability can affect your life enough to be convincing, but never enough to inconvenience anybody else.
Disability also does not discriminate.
You do not need to be born disabled, old or responsible for what happened. Illness, injury and bad luck do not care what you used to believe about disabled people.
A person can go from thinking accessibility is somebody else’s issue to needing it themselves very quickly.
That is not a threat.
It is reality.
Bodies change. People get ill. Accidents happen. Genetics happen. Ageing happens. Sometimes a condition appears gradually; sometimes life changes in a single day.
I happened to start life disabled.
Someone else might become disabled at twenty-one, forty, seventy or tomorrow.
A functioning welfare system, accessible public spaces and a society willing to accommodate disabled people are therefore not niche concessions for a permanently separate group. They are part of building a society around the reality that human bodies are variable, vulnerable things.
You should not need the possibility of becoming disabled yourself before you care about disabled people.
But it makes the hostility towards accessibility and support particularly short-sighted.
Sometimes I need help, accommodations or more rest than somebody else.
None of those things are character flaws.
Needing support from the society I live in does not make me indebted to strangers for the right to exist in it.
The Before Version of Me
There is a peculiar problem with getting better from something gradually.
You have to reinterpret the person you were before.
I look back at the months leading up to April and remember someone who was exhausted, anxious, in pain and increasingly affected physically, while still going to college, writing code, talking to friends and trying to behave as though the arrangement was sustainable.
At the time, I thought I was coping badly with life.
Now I wonder how much energy I was spending coping with my own brain.
One of my teachers told me after the operation that I had looked increasingly unwell before the failure. That has stayed with me because I hadn’t fully seen it from the inside. I knew I felt awful. I didn’t know I apparently looked like somebody whose condition was visibly deteriorating.
There is a temptation to turn that into hindsight and identify every bad day as a warning sign.
I don’t think that’s useful.
Bodies are messy. Chronic illness is messy. Headaches happen. Anxiety happens. Cerebral palsy symptoms fluctuate. People get tired. None of these things arrives with a diagnostic label explaining its significance.
The pattern only looks obvious because I know where it ended.
What I can say is that the difference afterwards has been substantial.
My head doesn’t hurt constantly.
The worst of the anxiety is gone.
The severe spasms are largely gone.
I sleep an absurd amount.
I am still tired.
Somehow, that is improvement.
Better Is Not the Same as Finished
I am significantly better than I was before my shunt failed.
I am also still recovering from it.
Both can be true.
There is a tendency to treat recovery as a line between two states: ill and recovered. Time passes, you arrive at the other end and normal service resumes.
That model works badly when you were chronically ill before the acute event.
There is no healthy version of me waiting at the end of this. I had hydrocephalus before April and still have it. I had cerebral palsy before April and still have it. The surgery fixed a failed shunt. It did not install the premium wellness expansion pack.
What it seems to have done is remove an additional burden I hadn’t understood was there.
And underneath it is just me again.
Still disabled.
Still chronically ill.
Still capable of sleeping for thirteen hours and waking up tired enough to complain about it.
Still spending much of my time at a desk or in bed because those are the places my body is most comfortable.
But without the constant headache.
Without my muscles repeatedly going haywire.
Without that particular form of anxiety swallowing entire days.
That is not a small difference.
I Didn’t Know How Ill I Felt
You can become accustomed to almost anything if it changes slowly enough.
Pain becomes background noise. Fatigue becomes laziness in your own vocabulary. Anxiety becomes personality. A worsening symptom becomes one of those things my body does. You adapt around each change until the adaptations become your life.
Then something changes in the other direction and you finally have a comparison.
Four months ago, I had emergency brain surgery.
Today I slept for nearly thirteen hours and woke up still tired.
That doesn’t sound triumphant.
It isn’t supposed to.
But my head doesn’t hurt.
My body is quieter.
My mind is quieter.
After spending so long not realising how much noise there was, I’m starting to understand how significant quiet can be.
I’m still recovering.
I think I will be for a while.
For now, quiet is enough.