Chapter 16: The 37 Pills
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At one point, I was taking 37 medications a day.
Thirty-seven.
I had a pill organizer that looked like a tackle box. Morning pills, afternoon pills, evening pills, bedtime pills, middle-of-the-night pills. Pills for pain. Pills for spasms. Pills for the side effects of the pills for pain and spasms. Pills for my mood, because apparently getting your neck broken at 24 is traumatic and you need chemical assistance to process it.
I didn't feel like myself anymore. I felt like a container for pharmaceuticals that occasionally talked.
Let me paint you the picture of a Tuesday morning on 37 pills.
The alarm goes off at 7 AM. Not because you slept. You stopped actually sleeping around pill number 18. You get a kind of pharmaceutical horizontal downtime. Not sleep, more like a supervised blackout. You open your eyes and for a brief, merciful second, you do not remember where you are or what happened to your body. And then it all lands on you at once, like it always does.
You need your morning pills before you can even think about breakfast. Because some of them need to be taken with food. Some of them need to be taken before food. Some need to be separated by two hours because they interact with each other. Except you are taking them together anyway because you have approximately zero options given the logistics of having someone help you take your pills in the first place.
There was a sheet. An actual printed sheet with columns: pill name, dosage, time, purpose. My mom kept copies. My nurses kept copies. My pharmacy had a copy. At one point I joked that we should laminate it and use it as a placemat. Nobody laughed. That is another thing the pills took from me. The room for dark humor. Everyone was too tense to laugh.
Let me walk you through the stack.
Baclofen for the spasms. My legs would clench at random, which sounds dramatic until you realize it is actually uncontrolled electrical misfires from a spinal cord that no longer knows what it is supposed to be doing. The baclofen was supposed to quiet that down. It did. It also quieted down everything else. I stopped having strong opinions about things. I stopped caring about sports. I lost interest in music. And if you know me at all, you know how strange that is. Music used to feel like jet fuel. On baclofen, it sounded like elevator background noise.
Gabapentin for nerve pain. This one I understand intellectually. Nerve pain in SCI is its own specific hell, a burning and electric sensation that does not respond to the same things regular pain does. The gabapentin took the edge off. But it also made me feel like I was thinking through wet concrete. Every thought arrived late and half-formed. I'd be mid-sentence and lose the sentence. Not the word — the whole sentence. Gone. I started writing things down just to track my own thinking, which should have been a flag.
Oxybutynin for the bladder. One of the things a C6-C7 injury takes from you is the ability to manage your own bladder on schedule. Your body stopped sending the right signals. So you're on a catheter schedule, and you're on a medication to keep your bladder from contracting when it's not supposed to, which has the side effect of making your mouth permanently dry, which means you're drinking more water, which creates its own complications in the catheter math. It's a very elegant system, if by elegant you mean a trap.
Lisinopril and a blood pressure medication I can't spell from memory, because my autonomic nervous system also got the memo that it no longer had to follow the standard rules. People with high cervical SCIs get something called autonomic dysreflexia — your blood pressure spikes suddenly and dangerously in response to things below your level of injury. A full bladder. A pressure sore. Tight clothing. Your body triggers the alarm but the signal never fully reaches its destination, so your blood pressure keeps climbing while your brain has no idea why. The medications are a firebreak.
Tizanidine. Another anti-spasticity medication, different mechanism than the baclofen, which tells you something about how many angles spasticity needs to be addressed from. These two together were supposed to be synergistic. What they were in practice was sedating. I was drowsy by noon on a good day.
Omeprazole because everything else in that stack was destroying my stomach. You take enough pills and eventually the pills need a pill to manage what the other pills are doing to your digestive tract. This is not an exaggeration. This is just Tuesday.
Vitamin D, B12, magnesium — because people with limited mobility don't absorb certain things properly, and you need to supplement. These at least felt benign. I took them like they were proof I was doing something healthy in the middle of the pharmaceutical carnage.
Sleep medications. Two kinds, at different points. Because the nerve pain doesn't care that it's 2 AM and you need rest. It doesn't have a schedule. It just burns, and it burns whether you're awake or asleep, and the difference is that when you're awake you can distract yourself and when you're trying to sleep you cannot. So you add something to knock you out hard enough that the burning becomes someone else's problem for six hours.
Then there were the antidepressants. That is where things get complicated.
The pharmacy counter became its own kind of character in my life.
There's a specific face that pharmacy techs make when you hand them your list. It starts professional, moves to careful, and lands somewhere around concerned. I got that face a lot. The pharmacist — this was the CVS on the corner I went to for years, a man named something I want to say was Marcus, who had rimless glasses and the steady patience of someone who had seen everything — Marcus learned my stack. He knew it better than I did in some months. He'd pull the bag before I finished saying my name.
That sounds warm. It was warm. It was also humiliating in a way I couldn't fully articulate. I was twenty-something years old and the pharmacist knew my name on sight because my medication list was so extensive he needed advance notice to have it ready. That is not a life. That is a maintenance schedule.
I got to know the rhythms of refill timing the way you know a recurring bill. The baclofen ran out on the 27th of every month. The gabapentin was a 30-day supply but I sometimes burned through it faster in bad months and then spent three days waiting for the prescription to authorize. The sleep medications required a new prescription every time — no standing refills — because of the schedule classifications, which meant a phone call, which meant phone tag with the clinic, which meant days sometimes. You learn to panic-refill a week early once you run out mid-month and find out what three nights without it feels like.
What three nights without the sleep medication feels like is not sleeping, combined with nerve pain that has no competition for your attention, combined with the specific existential clarity that only comes at 4 AM when your body hurts and your brain is fully awake and there is nothing to do but think about how long this might last. I don't recommend it.
Missing one pill was an event. Missing a whole category was a crisis.
One time — this was maybe 2011, 2012 — I had a nurse who forgot to order the baclofen refill before a long weekend. I was not going to have it for four days. My doctor, when I reached him, was genuinely worried. Not about the pain. About withdrawal. Apparently abrupt baclofen withdrawal can cause seizures, hallucinations, fever. I did not know this. I had been taking it for two years and nobody had told me that going without it cold turkey could put me in the hospital.
I spent that long weekend with a friend who was a nurse, who watched me for signs that I was going to seize. I did not seize. But I was not comfortable, and I was not functional, and I thought about that a lot afterward. I was depending on this chemical so completely that its absence was a medical emergency. What kind of life is that?
One day, I just stopped.
Cold turkey. All of it.
I know what you are thinking. That is dangerous. That is stupid. You should taper. You should consult your doctors. You should do it responsibly.
You are right. It was probably dumb.
But here is the thing: I got my personality back.
The fog lifted. The flatness faded. I remembered what it felt like to actually feel things. Good and bad. I would trade the bad feelings for the nothing any day of the week.
The world came back in stages. First the irritability, which was actually a good sign, because it meant I cared about something enough to be irritated by it. Then the humor. Real humor, not the polite version I had been performing. Then the music. I put on something loud and it hit me in the chest the way it used to.
And then the hard stuff came back too. The grief. The anger. The 3 AM lies your brain tells you. But here is what nobody tells you about those feelings when they return after a long chemical absence: they are actually manageable. They feel intense after nothing, but they are still yours. They are still data you can work with. The nothing, the pharmaceutical flatness, that is what is actually unworkable. You cannot fix a problem you cannot feel.
Here is the thing about antidepressants and me: I never needed them.
I know that sounds dismissive. Mental health is real. Depression is real. The chemicals in your brain can genuinely need adjusting. I am not discounting any of that.
But my experience was different.
There is a story I have never told publicly. It happened in the hospital, during those early months of recovery.
I was lying in bed at 7 AM. You know, that special hospital 7 AM where you have been awake since 4 because someone came to draw blood. And I asked a question.
I do not remember the exact words, but it was something philosophical. Something about whether people develop natural coping mechanisms after trauma. Whether the brain adapts. Whether kindness and resilience are skills you can build, or whether they are just there or not there.
A normal question, I thought. The kind of thing you ponder when you are staring at a ceiling tile for the fourteenth consecutive hour.
The next thing I knew, my room was full of people. Therapists. Social workers. A psychiatrist. All of them looking at me with that concerned face, the one that says we are worried about you.
They thought I was having a mental health crisis.
I was not. I was just thinking. Out loud. Apparently, that is a red flag when you are a recently paralyzed young man in a hospital.
Looking back, I understand it. If you are a psych resident and you walk into a room and there is a twenty-something with a new spinal cord injury asking philosophical questions about the nature of human suffering, your clinical training is going to start firing. All the flags are there. The demographic profile alone is a checklist of risk factors.
But what none of those assessments captured is that this is just how I think. This is how I have always thought. I was the kid who would ask his dad why the sky was blue and then follow up with a question about what blue even is if everyone perceives color differently. I was a philosophical pain in the ass long before I had a medical chart that made it look like a symptom.
But the system does not have a checkbox for just a curious dude. It has checkboxes for clinical presentations. And I checked enough boxes.
From that point on, the antidepressant train left the station. They prescribed. I took. I followed orders. Because that is what you do, right? You trust the experts. They know more than you.
Except they did not know me.
They did not know that my concerning question was just how I process the world. They did not know that I was not depressed. I was adapting. They did not know that the pills were not lifting me out of a hole. They were filling a hole that did not exist with concrete.
After I went cold turkey, I found more peace than I ever had on the medications. The feelings came back. All of them. The good, the bad, the scary, the beautiful. And you know what? I preferred the scary to the nothing.
Here is the part nobody wants to hear, but I am going to say it anyway: pain management in the SCI world is a mess. I do not mean that as a criticism of the individual doctors and nurses. Most of them are working their asses off inside a system that was designed before people like me existed in these numbers. What I mean is that the protocols were built for one kind of pain experience, and spinal cord injury pain is a completely different animal.
Regular pain says: something is wrong in this specific place. Fix the place, fix the pain.
SCI pain says: the wiring between the source and the brain is damaged, so signals are misfiring everywhere, and also sometimes your body is cold when you are hot, and also sometimes your blood pressure spikes because you sat in the wrong position, and also sometimes you are in agony for reasons that do not show up on any scan.
So you treat it with a cocktail. And the cocktail evolves. And you add things to manage the side effects of the cocktail. And suddenly you have 37 pills and a tackle box and you have forgotten what your actual baseline feels like.
I had a doctor tell me once, a good doctor, someone I respected, that managing an SCI patient's pain long-term was more art than science. He said it apologetically, like he was confessing something. But I actually found it weirdly reassuring. Because it meant the uncertainty was not a failure of effort. It was just the reality of the situation.
The problem is that the artistic approach tends to err on the side of adding. More coverage. More management. More chemical buffers. And somewhere in all that adding, you lose the patient. You lose the person. The human being who used to have a sense of humor and opinions about music becomes a carefully managed set of side effects.
That is who I was at 37 pills. A carefully managed set of side effects.
There is a quote I came back to later: I am as limited as I plan on being.
That one did not click until I was off the medications. On them, I could not tell if a limitation was real or pharmaceutical. Was I actually struggling with this task, or was it the gabapentin fog? Was I genuinely not interested in that project, or was it the emotional flattening?
Getting off the pills gave me back my internal compass. I could finally feel the difference between I cannot do this and I have not figured out how to do this yet. Two completely different sentences. Only one of them is true about me.
My pain, the real stuff, the SCI neuropathy, the spasms, the daily physical reality of this body, is data. It is information. It is telling me something about what my nervous system needs. Chemically suppressing it to silence was not healing. It was just noise cancellation.
I understand pain now as a form of fear. And fear as a dilemma. Not a verdict. A dilemma. And dilemmas can be worked through.
The moment I stopped treating pain as the enemy and started treating it as a signal, something to understand rather than just survive, everything shifted. I started paying attention. I started making adjustments. I started figuring out what my body was actually trying to tell me.
And yeah, some days that still sucks. Some days the signal is loud and the message is: you are in agony and there is nothing to do about it. Some days are just bad days, and no philosophical framework makes them less bad.
But I am present for them now. That matters.
I do not tell this story to bash medicine. Some people need every one of those pills, and those pills save lives. I am not the poster child for going off your medications. Please do not do what I did without talking to your doctor. Seriously. The cold turkey thing was a gamble and I got lucky. People have died doing what I did.
I tell it because sometimes the system does not see you. It sees a category. A diagnosis. A checkbox on a form.
I was a twenty-four-year-old recent SCI patient who asked a philosophical question at 7 AM. The system saw a crisis. What was actually happening was a guy trying to understand what the rest of his life was going to look like, and doing it the only way he knew how. Out loud, directly, without a filter.
That is not a symptom. That is me.
I live in pain. I do not particularly like it and have not for a long time. But it is mine. It is real. It is part of the operating system now, and I have learned to work with it instead of burying it under pharmaceutical concrete.
Sometimes, the most radical act of self-care is trusting yourself enough to say: this is not working for me.
Thirty-seven pills a day.
I take significantly fewer now. The ones I kept are the ones that are doing something real. Something I can feel and measure and verify. The rest? Gone. And I am more myself without them than I ever was with them.
I have got my personality back. My humor. My music. My bad ideas and my philosophical questions and my opinions about things that do not matter.
Worth it.
I love you, but damn.