Chapter 12: Today's Forecast
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Every morning starts the same way. Before coffee, before brushing my teeth, before I've done anything that qualifies as being a person — I check the weather.
Not like you check the weather. You glance at your phone, see a little sun icon, think nice, and go about your day. Maybe you grab a jacket. Maybe you don't. The stakes for you are "slightly uncomfortable for twenty minutes."
For me, the weather is a tactical briefing. It determines whether I can leave my house. Whether my body will cooperate. Whether today is a day I live my life or a day my life lives me.
Ninety-three degrees with eighty percent humidity? I'm staying inside. My body can't thermoregulate — the whole reptile situation — so a Louisiana summer afternoon isn't "hot" for me. It's a medical event waiting to happen. I overheat, I can't sweat it off, and the next stop is the ER. I've done that trip. It's not fun. Zero stars.
Forty degrees and raining? Also a problem. I can't shiver to warm up, and a wet wheelchair cushion in January is about as miserable as it sounds. Plus the chair doesn't exactly have all-terrain tires. Rain turns every sidewalk crack into a slip hazard, every parking lot into a small lake, and every helpful stranger into someone who wants to push me somewhere I didn't ask to go.
The sweet spot is about sixty-eight to seventy-five degrees, low humidity, partly cloudy. I get maybe forty days of that a year in Louisiana. The rest is either swamp or monsoon. I didn't pick the ideal state for a guy whose body runs like a cold-blooded animal, but here we are. You don't always get to choose the climate. You just learn to read it.
Let me explain why this is true. Because it sounds like complaining and it's actually biology.
A C6-C7 spinal cord injury doesn't just disconnect your legs from your brain. It disconnects the brain from most of the body's automatic systems. The stuff you never think about — the systems that run in the background like your phone's operating system, invisible and essential — those get cut off or scrambled below the injury level.
Thermoregulation is one of them.
Your body normally sweats to cool down and shivers to warm up. The signals for both of those things have to travel down the spinal cord from the brain, tell the body what to do, and travel back up reporting the result. After a C6-C7 injury, that loop is broken. My brain sends the signal. The message doesn't get there. My body doesn't sweat the way it should, doesn't shiver the way it should, and doesn't report back the way it should.
So in the heat, I bake. My core temperature climbs and there's no automatic relief valve. I don't feel it building the way you'd feel it building — you'd be drenched, uncomfortable, obviously too hot. I can be dangerously overheated and still think I'm fine, until I'm not fine at all and it's a 911 situation.
In the cold, I freeze. Same logic in reverse. My body can't generate enough heat to compensate. And since I'm not moving my legs, there's no muscular heat production happening down there. My feet and legs are just sitting there losing temperature while my brain sends messages into the void.
This is not hypothetical. This is Tuesday.
But the thermostat is just one system. The other one is the one I have to explain carefully because people underestimate it until I describe it correctly.
Autonomic dysreflexia.
Say it slow. Au-to-nom-ic dys-re-flex-i-a. Medical term for a medical emergency.
Here's what it is: my injury level means my autonomic nervous system — the part of the nervous system that runs heart rate, blood pressure, digestion, all the background functions — operates in a disconnected loop below the injury. Something triggers an irritant below my level of injury. A full bladder. A pressure sore starting to form. A tight shoe. Something that, if I could feel it normally, would register as mild discomfort.
Because I can't feel it normally, the nervous system below the injury doesn't send a normal signal. It sends a full alarm. Everything below the injury kicks into emergency mode and starts spiking blood pressure. The body is screaming, but the message can't get through the normal channels, so it turns the volume up to eleven.
My blood pressure can go from normal to stroke territory in minutes. We're talking 200/100 and climbing. I get a pounding headache — the kind behind the eyes, immediate and relentless. Flushing. Sweating above the injury level, nothing below. Sometimes a feeling of dread so specific and unmistakable that I've learned to recognize it before the blood pressure cuff confirms it.
Left unaddressed, autonomic dysreflexia can cause a hemorrhagic stroke. An aneurysm. It can kill you. It's killed people.
And the trigger might be a catheter kink. A wrinkle in a sock.
The treatment is: find the cause and eliminate it immediately. Check the catheter. Check the legs. Check every pressure point. Sit up to let blood pressure redistribute. And pray you figure it out fast enough.
I've had episodes. More than I want to count. The worst ones happened before I fully understood what was happening, before I had the routine down. I'd wake up at two in the morning with a headache that felt like my skull was being inflated, drenched in sweat from the chest up, and have to troubleshoot my own body like it was a piece of malfunctioning equipment.
Which, on some level, it is. That's the reality.
The thing about AD — the thing that makes it different from most medical conditions — is that every episode is a small crisis on an unpredictable schedule. I can go months without one. I can have three in a week. There's no forecast for it. I can't look at an app and see a little warning icon: Autonomic event likely, 40% chance, plan accordingly.
You just learn to stay vigilant. You learn your triggers. You learn the early warning signs. And you learn that no plan survives contact with a dysfunctional nervous system.
So when I say every morning starts with checking the weather, I mean the outside weather and the inside weather. Both forecasts. Together.
Some mornings I wake up and everything is fine. The spasms are mild. No headache. Good pressure reading. Body cooperating. Those are the days where I feel something close to normal — or whatever normal has come to mean since July 4th, 2009. I'll get dressed without a fight, roll out to the kitchen, make coffee, and sit by the window watching Covington wake up. On those mornings, I can work. I can plan. I can run CT Solutions like I know what I'm doing. I can be the version of Chase that functions.
Then there are the other mornings.
The spasms wake me up before the alarm. My legs moving on their own, involuntary, nothing I can control — the body twitching like it's trying to reboot. The spasm itself doesn't hurt the way pain hurts when you can feel the source. It's more like watching something malfunction. You see it, you feel the strain of it, and there's nothing to do but wait for it to stop.
Or the headache that's already there when I open my eyes. Not bad yet. But I know that headache. It's the one that says: something is wrong, and you need to figure out what before it gets worse. The autonomic warning shot.
Or the shoulder. My shoulders carry everything — every transfer, every push, every hour of compensating for what my legs can't do. Some mornings the shoulder is just done. Already at its limit before the day starts. And I still have the whole day to get through.
Those mornings, the coffee can wait. The forecast says rough. Adjust accordingly.
The adjustment is the part people don't understand.
When your body is unpredictable, you stop making fixed plans and start making contingency plans. I don't say I'll be there at noon. I say I'll be there at noon if today's body cooperates. There's always an asterisk. There's always a conditional clause. And explaining that asterisk, constantly, to the people in your life — explaining why you can't commit to something you fully intend to show up for — is its own kind of exhausting.
Beka gets it. My dad gets it — Thursday nights, chicken tenders and cocktails, but never with a hard start time because some Thursdays I need an extra hour. The people closest to me have learned the language. The rest of the world hasn't.
I've canceled things I wanted to go to because I woke up wrong that day. Not sick in any way you could explain to a doctor, not injured in any visible sense. Just — wrong. The body was in one of its moods. And going out anyway, pushing through, ignoring the forecast — I've done that too. I've paid for it every time.
There's a version of stubbornness that's admirable and a version that's just self-destruction dressed up as toughness. I spent years confusing them.
The real show — the main event on the Louisiana weather calendar — is hurricane season.
Hurricane Isaac, 2012. My first big one after moving to Covington.
I stayed. This was stupid. I want to be very clear about that: this was the dumbest decision I made post-injury, and I once dove headfirst into four feet of water, so the bar was already pretty high.
I stayed because I thought I was tough. Because evacuating in a wheelchair felt like admitting something I wasn't ready to admit — that I was vulnerable in a way other people weren't. That a storm could come through and I couldn't just deal with it like everyone else. Board up the windows, stock up on water, ride it out. That's what people do in Louisiana. That's what I was going to do.
Then the power went out.
Here's what happens when you lose power and your entire independence runs on electricity: you stop being independent. My wheelchair is electric. No power, no charge. No charge, no movement. I've got maybe a day and a half of battery life if I'm conservative, and "conservative" means I don't move unless I absolutely have to.
My phone was dying. My backup charger was dying. The thing about modern quadriplegic life is that it runs on batteries — all of them, simultaneously — and a hurricane kills every single one.
The water started coming in on day two. Not a flood — just enough. An inch, maybe two. Enough to make the floors slick. Enough to make my wheelchair tires slip. Enough to make me sit in my chair, in a dark apartment, with six percent battery on my phone, thinking: I should not be here.
My neighbor — a guy named Marcus who I'd maybe said twelve words to before that night — carried me out. Physically picked me up and carried me to his truck, which was parked on higher ground. Then came back for the chair. Then drove me to a shelter that turned out to be exactly as "accessible" as you'd expect a high school gymnasium in rural Louisiana to be.
Which is to say: not at all.
I slept in my wheelchair that night because the cots were too low for me to transfer into, and there was nobody trained to help, and I was too proud to ask Marcus to lift me again. I sat there in a gym that smelled like old basketballs and anxiety, listening to the wind outside, and I made myself a promise.
Never again.
Here's the thing about Marcus. I barely knew the man. Twelve words. Maybe a wave across the parking lot. The kind of neighbor where you know their face but not their last name.
And he carried me out of my apartment like it was nothing. Like it was just the obvious thing to do when your neighbor's apartment is flooding and he can't walk.
I never forget that. Not because it was heroic — though it was. But because it taught me something about people that the voice in my head had been lying about for years. The voice said nobody would be there. The voice said I was on my own. The voice said the world doesn't stop for guys in chairs.
Marcus didn't get the memo.
People surprise you. Not always. Not reliably. But enough. Enough to keep the math from being as dark as the voice wants it to be.
After Isaac, I became a hurricane evacuation machine. When Ida rolled through in 2021, I was out of the state forty-eight hours before landfall. But "evacuation" for me isn't what it is for you. You throw some clothes in a bag, grab the dog, and hit the road. For me, it's a full military operation.
Here's the checklist: wheelchair charger. Backup battery pack. Two weeks of medications — because if the pharmacy floods, there is no Plan B. Catheters. Extra cushion cover in case the main one gets wet. Adaptive utensils so I can feed myself wherever I end up. Laptop and phone chargers, because those are my lifelines to everything. Medical documentation, because if I end up in a strange ER, they need to know what's going on with my spine. The van has to be loaded in a specific order because my chair goes in last and comes out first.
Beka — this was before we were together, but she's heard the stories — once asked me how long it takes to pack for an evacuation. Three hours. Minimum. And that's if nothing goes wrong, which something always does. Last time it was the wheelchair ramp on the van being jammed. Spent twenty minutes in the driveway with a rubber mallet and a vocabulary that would make a sailor blush.
The drive is its own special hell. I-10 westbound during a hurricane evacuation is a parking lot. Eight hours to go a distance that normally takes three. And here's the thing nobody talks about: rest stops aren't accessible. I mean, technically they are — there's a blue sign on the door and a wider stall. But when every rest stop between Covington and Mobile is packed with three hundred evacuees, and the accessible stall is being used by a family of four who needed the space, and there's no way to navigate a wheelchair through a crowd that's standing shoulder-to-shoulder — you just don't stop.
Eight hours. No bathroom break. Do the math on that when you've got a bladder that doesn't send you signals anymore.
The hotel in Alabama said it was accessible. I'm going to need you to really hear me on this: the word "accessible" in the hospitality industry is the single greatest lie since "I'm fine." The bathroom door was twenty-six inches wide. My chair is twenty-five and a half. I could technically fit, if I didn't want to keep the skin on my knuckles. The shower had a grab bar that was mounted at a height designed for someone standing up. The bed was too high. The thermostat was on the wall behind the desk that was bolted to the floor in front of it.
And all of that — every logistical indignity, every undersized doorway, every inaccessible rest stop — lands differently when your body is also dealing with an internal forecast nobody else can see. The thermoregulation is already compromised because the evacuation stress has my nervous system running hot. The catheter situation has to be managed in hotel bathrooms I can barely fit into. Autonomic dysreflexia doesn't care that you're in the middle of a natural disaster. If something triggers it, it triggers.
So I'm managing the hurricane and managing myself, simultaneously, on no sleep, in a space designed for someone else's body.
Accessible. Sure.
I managed. I always manage. That's not the point. The point is that a hurricane — a natural disaster that threatens everyone — threatens me in about fifteen extra ways that you don't have to think about. And every single one of those ways is invisible to the people designing the evacuation plans, the shelters, the hotels, the rest stops.
They're not trying to exclude me. They just never thought about me.
That's worse, honestly. Malice you can fight. Oversight just sits there, looking apologetic, while you try to fit a twenty-five-and-a-half-inch chair through a twenty-six-inch door without leaving skin on the frame.
That's the weather for a quadriplegic in Louisiana. It's not small talk. It's not "nice day, huh?" It's a daily negotiation between what I want to do and what the sky will allow — and what my own body will allow, which is its own separate negotiation running in parallel.
Some days the forecast is fine and I roll out the door without a second thought. Some days it's a hundred degrees and I stay home and pretend I wanted to anyway. Some days the big red blob on the radar is spinning toward the Gulf Coast and I've got three hours to pack my entire survival infrastructure into a van. And some days — the hardest days — the external weather is beautiful, seventy-two and sunny, and the internal forecast is terrible, and nobody can tell from looking at me because the storm is all on the inside.
There's one day a year that hits different. July 4th. Independence Day.
You'd think I'd hate it. The irony isn't subtle — the day the country celebrates its freedom is the exact day I lost mine. July 4th, 2009. 1:20 in the morning. Oxford, Mississippi. Same date. Every year.
But here's what actually happened: I kept going back to it. Publicly. On Facebook, year after year, I'd post something on July 4th — not to be dramatic, not to fish for sympathy. Just to mark it. Because that's what you do with the moments that define you. You don't hide them under a flag and wait for the parade to pass.
2011 — two years out: "2 years ago... gained more than I've lost." That's it. That's the whole post. Two years of learning to live a completely different life, and I summed it up in nine words because nine words was exactly right.
2012 — three years: "Been a crazy 3 years. I give it one more year to get my butt out of this chair." That one's complicated now. The optimism was real. The timeline was wrong. But I'd rather have been wrong and hopeful than right and hollow.
2014 — five years: "I used to think Independence Day was just the ironic national holiday when I lost my independence." Used to. Past tense. Five years in and I was already rewriting the story. Still am.
2018 — nine years: "9 years ago this hour my life forever changed." No editorial. No takeaway. Just the fact, standing there, nine years heavy, asking nothing of anyone.
2020 — eleven years: "11 years ago this hour I had my freedom put on notice." Notice. Not taken. Not revoked. Put on notice. Because somewhere in me, eleven years later, I still believe the thing hasn't been fully decided.
That's the real forecast. Not the humidity. Not the hurricane track. Not the blood pressure reading at 2 AM. Those posts, one per year — that's the weather report for my actual life. And the trend, if you graph it, is clear: same storm, different man standing in it every time.
Today's forecast: unpredictable. But then again, so am I.