“The spinal cord is a well-organized structure that functions like a multi-lane highway for the transportation of very specific forms of sensation up to the brain stem, and motor action down from the brain stem… As the name implies, intense pain will fly up from the site of the wound into the brain stem at record speed and automatically trigger a constellation of predictable responses that include vocalization, screaming, ‘Bloody murder,’ along with a fight response for counterattack or push away.”
— Dr. Jill Bolte Taylor, Whole Brain Living
That is how the body is supposed to work. A pain signal comes in, the brain gets the message, and the body reacts with a survival response. When you live with a spinal cord injury, that smooth “multi-lane highway” gets disrupted. Signals do not always make it to the brain, and sometimes the body reacts in ways that do not make any sense at all.
This brings me to one of the strangest and most frustrating parts of life after injury: autonomic dysreflexia (or as I call it, “feeling like garbage”).
What is Autonomic Dysreflexia?
The technical version first:
According to the Christopher & Dana Reeve Foundation, autonomic dysreflexia (AD) happens when there is an overreaction of the autonomic nervous system, the system that controls things you do not have to think about, such as blood pressure, digestion, and heart rate. A noxious stimulus, something painful or irritating below the level of injury, sends signals up the spinal cord. Because those signals cannot pass the injury site, the brain never receives the message. Instead, the body responds with a reflex that ramps up the sympathetic nervous system, tightening blood vessels and sending blood pressure soaring. The brain tries to step in and calm things down, but the message cannot get past the injury. The result is a confused body caught in a dangerous feedback loop (The Christopher & Dana Reeve Foundation, n.d.).
Translation: my nervous system freaks out when something is wrong below my level of injury, and instead of feeling pain the way you would, I get slammed with a variety of symptoms.
How It Feels
Here is where “I feel like garbage” comes in. Since I cannot feel from my chest down, pain shows up in other, less straightforward ways. For me, that can mean:
- Goosebumps down my arms
- Flushed skin on my neck and face
- Pounding headaches (ranging from hangover bad to “boxing match with the Italian Stallion” bad)
- Random sweating and chills
- Muscle spasms
- A sudden spike in blood pressure (the dangerous one)
Most of the time, these are just uncomfortable warning signs. If the root cause is not fixed quickly, things escalate fast, and a dangerous spike in blood pressure could lead to a stroke.
Why It Is Both a Curse and a Gift
As scary as AD sounds, it is also a built-in alarm system. It is my body’s way of telling me that something is wrong, even if I cannot feel the actual pain. Without it, I could easily develop pressure sores, bladder issues, or infections without realizing it.
Over the years, I have learned to read my symptoms like clues. Everyone is different, but here is my personal “garbage system”:
- Goosebumps plus deep breath test: Usually means gas or I need to use the bathroom.
- Flushed face plus fast heartbeat: Time to pee.
- Bad chills: Usually just cold, but sometimes infection, especially if spasms increase.
- Sharp headache plus sudden goosebumps: Likely from a quick, sharp pain such as a scratch or bump.
- Mild headache plus annoying chills: Something small but irritating, like tight clothes or wrinkles in my cushion.
- Full-blown blood pressure spike with severe headache: This is the emergency. Immediate action is required.
I learned these through trial and error, and through miserable nights in the hospital. These days I am quicker at recognizing the signs, which makes it easier to prevent things from spiraling.
The Takeaway
Autonomic dysreflexia is a constant balancing act. It is uncomfortable, unpredictable, and sometimes downright scary. At the same time, it is the only way my body can flag that something is wrong below my injury level. When I say, “I feel like garbage,” this is usually what is happening.
So if you see me get distant, distracted, or bundled under a heated blanket in the middle of summer, just know I am probably trying to play detective with my own body.
Thanks for sticking with me through this explanation. I hope this helps anyone new to spinal cord injury, or those around them, understand what AD is and why “garbage days” happen.
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