I know, I know, it’s been a minute since I’ve written. Several things have kept me away from here, mainly that this is supposed to be a largely positive blog, and I just haven’t had a lot to be chipper about. The neuropathy I’ve had in my feet for ten years has been kicking my ass lately, which has forced me to hide under the covers for days at a time. You think I’m kidding, but there have been weeks running where I didn’t get out of bed for days. Even my cat started sleeping in the other room, either because I smelled or because she was sick of me being in the bed with her.
All of this has led me to try an extreme treatment: I’m now getting ketamine infusions to see if it can’t convince my neural pathways to be normal again and not tell my feet they’re in pain all of the time. You might know ketamine by its party-drug name, Special K, that is known for putting users in a “K Hole.” So yeah, basically I received six daily treatments where I went to the doctor, got an IV shoved into my arm, and they pumped extremely high doses of a drug that then made me trip big hairy balls. More on that in another entry. I can’t tell you how surreal it is to come down from a world where everything is beautiful and I realize we’re all interconnected back into a world where everyone is angry and everything is terrible all of the time.
The neuropathy I’ve had for more than a decade is so severe that I’m never not aware that I’m in pain. Just think about that: literally every moment of every day of the past ten years I have been in pain. That’s 3,650 days, 87,600 hours, 5,256,000 minutes, or 315,000,000 seconds of unrelenting agony.
Just typing it out like that makes me wonder why I ever beat myself up for becoming depressed and anxious. Of course I’m fucking depressed! You would be too after 3,650 days of someone holding your feet in hot coals. It has made me angry, lethargic, hopeless, uninspired, sluggish, antisocial, introverted, and unmotivated. I won’t go so far to say I’ve lost the will to live, but I cannot possibly explain the hopelessness one feels when staring down another 30 years of life like this.
Hence, the decision to try ketamine. I was told this was a sure bet, that it has nearly a 100 percent success rate in treating neuropathy. It doesn’t cure you---the neuropathy will eventually return---but it gives you windows of relief. The idea is to titrate your treatments to lengthen those windows.
The results have been disappointing. After the second treatment, I have experienced a slight reduction in pain levels, but my feet still hurt if I walk more than a couple of blocks. I guess they are “better” but the improvement is negligible. The Wife and I had a dark moment where I lost my shit and told her I couldn’t see a bright spot in however many years I have left on this planet. To be clear, I am not suicidal; I never have been. But the weight that settles in on you when you realize you’ll never experience a pain-free moment in the years that loom ahead is an oppressive one. “Hopelessness” doesn’t even begin to cover it.
Then yesterday---four days after my last ketamine session---I woke up and immediately noticed that I didn’t feel the blinding burning that is my first thought of every day. I sat up and put my feet on the floor. One thing about neuropathy is that you lose the joy of being able to walk barefooted. The pain is too much. But as I stood and walked to the bathroom, I noticed the absence of the familiar burning and tingling. I almost held my breath as I showered and got ready for my day. I went to the coffeeshop and still I was pain-free as I walked back to my car. I got back home, did some work, and noticed that instead of crawling back into bed after I finished, I was ready to knock out a bunch of shit I needed to do. I started laundry, I spent two hours in the kitchen cooking stuff for our lunches this week, I made some phone calls I’d been putting off because I just didn’t have the mental energy for it.
And all the while, I couldn’t help but notice the lack of that oppressive weight on my shoulders, that dark cloud that is my constant companion now. I looked out my window and thought “It’s a beautiful day.” I scrolled through the news and my social media without feeling that creeping anger and anxiety. I was as light as air.
I got six hours of these glorious feelings. Six hours where chronic pain didn’t define who I was. I was just a normal person doing normal things, with only the usual cares of an adult instead of worrying constantly about the blinding pain. And for six hours I was reminded of the person I used to be before all of this started---vivacious, excited, fearless, confident---and it felt like coming home. If anything, it made me realize how heavy this burden had weighed on me, how it affected my every waking moment. Walking around without that burden was a relief I cannot begin to convey.
And then, just like that, the door slammed shut, and I felt that old familiar burn and tingle creeping into my toes again. I closed my eyes and began focusing on my breaths, willing it to disappear again. But nope, the light had been extinguished, and I was back to toting my impossible burden just like that.
The doctor who started my treatments squeezed me in at the request of a friend because he was going on a three-week vacation the next day. When he returns, I’ll go see him again. It could be that since I’m trying to undo ten years of fucked-up neural pathways, I need more than the usual dosage. But six treatments cost me $1,500 since insurance won’t pay for me to trip big hairies, no matter how much research tells them that this is a legitimate treatment. If this is something that will have me strapped to the IV pole for dozens and dozens more treatments, I don’t know that it’s financially feasible for me. Plus, there’s just being gun-shy of dropping another $1,500 and not getting any more relief.
I take heart that yesterday, for those brief moments I was pain-free, I was happy-go-lucky and energetic. Be depressed for long enough, and there’s the added bonus of the constant self-shaming that you are wasting your life in bed, that a better person would be able to “play through the pain,” that all of your angst and anxiety and lethargy aren’t because of pain and the subsequent depression, that maybe it’s really just laziness and an unwillingness to participate in life because you lack some fundamental piece that other people who move happily through life have, that maybe a “stronger” person would be able to function better, that you are worthless.
But I saw it, y’all. I saw, for six short hours, that I am not the person that I’ve feared I’d become in this past decade, that it really was living with constant pain that has shaped me into the angry and depressed person I’ve become, that without the pain I was the person I remembered being before all of this started. I saw it. It is in me.
And I don’t know if that’s hopeful or heartbreaking.