In my last piece, I talked about the difference between understanding disability as a healthcare provider and actually living with it.

There is another version of that same lesson:

Knowing what a stroke is and knowing what it’s like to live after one are two very different things.

I knew the medicine.

I knew the signs and symptoms. I understood blood flow to the brain. I understood ischemia, hemorrhage, blood pressure management, medications, rehabilitation, and fall precautions.

Then I had multiple strokes.

Suddenly the PowerPoint presentation became considerably more interactive.

Stroke 101

There are two broad categories of stroke: ischemic and hemorrhagic.

An ischemic stroke happens when blood flow to part of the brain becomes blocked. An embolic stroke, which occurs when a clot or other material travels through the bloodstream and lodges in a vessel supplying the brain, is one type of ischemic stroke.

The brain is an extraordinarily needy organ. It requires a continuous supply of oxygen and glucose from the blood. When that supply is interrupted, brain cells begin to become injured and die. The longer the interruption lasts, the greater the potential damage.

A hemorrhagic stroke happens when a blood vessel ruptures and bleeding occurs in or around the brain. The skull is a closed space, and the brain doesn’t particularly appreciate suddenly having extra material shoved into its living quarters. Bleeding can damage brain tissue directly and can also increase pressure inside the skull, creating additional injury.

Neither version earns a five-star Yelp review.

In my case, my strokes were ischemic rather than hemorrhagic. Treatment ultimately meant addressing both the risk of further clotting and the underlying factors contributing to that risk.

That’s where the medical explanation usually ends.

Unfortunately, that’s about where living with it begins.

Welcome to Blood Thinners

After certain ischemic strokes, treatment may include medication intended to reduce the risk of additional clots. Depending on the cause of the stroke, that may mean an antiplatelet medication or, in some circumstances, an anticoagulant.

Most people simply call these medications “blood thinners,” although technically they don’t make your blood thinner. They interfere with parts of the clotting process.

The practical result can nevertheless be memorable.

Cut yourself accidentally and suddenly the bathroom looks like you’ve severed a limb.

Bruising is another entertaining feature. You can discover bruises on your body and have absolutely no recollection of how they got there.

Someone asks:

“How did you get that bruise?”

No clue.

Apparently, I had an altercation with a coffee table and the coffee table won.

These things sound minor when you’re discussing them clinically. They’re different when they become part of everyday life.

Blood Pressure: Now With Gravity

In my case, controlling my blood pressure also became extremely important, which meant blood pressure medications at doses and combinations I hadn’t needed before.

Blood pressure medications are funny things. Sometimes one medication does the trick. Sometimes it takes several medications working through different mechanisms to achieve adequate control.

The body also needs time to adapt.

If your body has become accustomed to an abnormally high blood pressure, lowering it can initially feel too low even when the new number is medically appropriate. Some medications can also contribute to orthostatic hypotension—a drop in blood pressure when you stand—which can cause dizziness, lightheadedness, or even falls.

So now something as simple as standing up may require a strategy.

Sit. Pause. Stand. Pause. Make sure the room hasn’t decided to relocate itself. Proceed.

It sounds incredibly easy when someone explains it to you.

It is considerably less easy when you’re the person who has to remember to do it every single time.

And if you’re also taking medication that increases your tendency to bleed or bruise, falling becomes an even worse idea than it already was.

Welcome to adaptation.

Where’s My Damn Stimpack?

This is the part of healthcare I don’t think we always explain very well.

We diagnose something. We treat it. We prescribe medications. We recommend rehabilitation and adaptive strategies. We schedule follow-up appointments.

All of that is important.

But somewhere in that process, the patient goes home.

There is no Stimpack.

There is no magical injection that restores your health bar and allows you to continue wandering around as if nothing happened.

Instead, you get prescriptions, pill organizers, physical therapy, assistive devices, alarms, calendars, fall precautions, follow-up appointments, and a growing list of things that used to be automatic but now require planning.

You adapt.

And adaptation can be exhausting.

That’s something I understood intellectually when I practiced medicine. I don’t think I fully appreciated it until I became the person doing it.

Healthcare providers understandably focus on keeping people alive, preventing another stroke, controlling risk factors, and preserving as much function as possible.

Those are the priorities.

But eventually the person we saved has to figure out how to live the life we saved.

That’s the part I want to talk about more.

Not instead of medicine.

Alongside it.

Because sometimes the CT scan, MRI, laboratory values, and medication list tell us what happened to the patient.

They don’t necessarily tell us what happened to the person.

In the real Wasteland, sometimes survival isn’t restoring the old character.

Sometimes it’s figuring out how to play with the character you’ve got.