The Relapse
I like this episode-esque title hehe.
I haven’t written here since August 2023 because things have been fine. My pain attacks were under control, and I quit my medication. Imagine, being hit by shock waves on half of your face with burning sensations on your cheek and lips, while a hammer is hitting your forehead… every day for seven years. THAT was under control. I remember Feb 4, 2023, being the happiest day of my seven-year journey with Trigeminal Neuralgia (TN) because I talked to my neurologist and we decided it was a good time to end my medication. I was delighted.
But fast forward to January 2024, TN returned… with a vengeance. More intense and frequent this time. Plus, on both sides of my face. I relapsed in my recovery journey.
I was in the USA for the Consumer Electronics Show then. I remember being hit by one, two, and then a few more pain attacks in a span of thirty minutes. I had to cancel a briefing — my only chance to play with the Rabbit R1 (the AI gadget). I’ve never let TN take away anything from me in my professional life easily. I’ve worked extremely hard during this journey to be where I am. And canceling that meeting had me disgusted.
That’s because TN has taken away a lot from me. My heart breaks for my 19-year-old self who saw his education, youth, and career crumble in front of him, helplessly. He wasn’t at fault. Nobody was, but the universe. It took him years to make peace with the fact that this is his life now and he’s going to have to live with pain attacks on his face. I’m also super proud of my early twenties self for the way he sought out ways to make a living, despite the despites. I didn’t know I had that kind of perseverance and ability to live through this madness.
I mention this here for my future self because my current one is struggling, and to remind myself that I’ve been here before and gotten through it.
But this wave of TN is different. It also gave rise to worse anxiety attacks, so much so that the psychiatrist diagnosed me with “severe anxiety disorder.” I discovered only recently how frightened I am constantly… Of when will the next pain attack hit? Will it be less painful or more intense? Will it be the shockwave type or will it be the sustained kind? Will it hit when I’m in a meeting next? Will I ever have a pain-free day?
As a result, my brain is constantly in awareness and ready-to-fight survival mode. I’ve lived with my survival instincts turned on since my college days. And as it turns out, there are only so many years you can live like this without succumbing to anxiety. It has happened before, and I’m scared that TN will take away whatever I’ve achieved.
My anxiety disorder is not the “oh I’m anxious about the phone call or the next meeting” kind but the “my heart is thumping out of my chest and I don’t know what to do” kind. I don’t have a fight-or-flight response anymore. In the past three months, my anxiety has gotten to a point where I get stuck. I can’t do anything. I can’t reply to messages, I can’t write, I can’t think and I can’t breathe comfortably. It’s best described by my favorite, Jenny Lawson in her book Broken, and I relate to it 100% -
Sometimes my anxiety gets hard in ways that you might not expect. If you struggle with anxiety, you probably know this feeling, the paralysis. I get stuck and suddenly it’s been days since I replied to people on the internet and the pressure gets worse and I panic that people I haven’t responded to are mad at me, so I ignore their emails and I don’t look at my DMs or my texts and I don’t answer my phone or listen to voicemails, because if I just wait until my mind gets better, maybe I can deal with this then, but I don’t, because it doesn’t.
This is on top of my worsened TN pain attacks. I don’t like when I’m not doing justice to my work or letting people down who rely on me for getting things done on time. There’s nothing more unpleasant to me than putting out work that’s dull or template-written. And that doesn’t help when I’m stuck.
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I realize that I’ve accomplished a lot in life but it doesn’t change the fact that I only have a few days a month where I actually feel like I am good enough at life. I go to bed thinking about what I did during the day, and most of the time I can only think about the incomplete tasks on my to-do list. Or how I’m letting people down or not doing enough with the trust they put in me.
At such times, not having a person you can rely on hurts more. I have amazing friends but they don’t understand. In fact, people don’t understand the gravity of the situation here. I sigh at every “get well soon” or “I can relate” message I get because I’m not getting well anytime soon — only better than I’m currently, and no, you can’t relate because TN is an unimaginably painful condition.
I only need a couple of “I don’t understand this but I’m here if you need me” from my close friends but I don’t get those. I’ve realized that most people don’t know what to say or how to help in such situations. They either go mum or treat it like a cold.
I’m also at fault because — First, I don’t want to meet when I’m not doing well. I don’t like putting out negative energy into the universe. Second, I don’t have the energy to get out of bed. How do you expect me to come to your home or meet in a cafe?
Here’s a tip if you have a friend, partner or relative who has a chronic pain condition: Try to understand their condition. There’s a ton of material on Google. And talk to them with assurance. If you can, visit them, occasionally. There’s nothing more comforting than knowing you have a person who is there for you.
I’m very good with my solitude (I love it) but the loneliness that a persistent chronic pain condition carries is bothersome. Pain demands to be felt. And it disassociates you from the community.
I often talk about it in Harry Potter terms, and say, “TN is like Voldemort.” There’s a scene when Harry feels he’s alone and Luna Lovegood tells him, “But I suppose that’s how he want’s you to feel. Well, if I were you-know-who I’d want you to feel cut off from everyone else. Because if it’s just you alone, you’re not as much of a threat.” You can substitute Voldemort’s reference here with depression, too. The pain attacks are like dementors where each pain attack soaks the energy and happiness out of you.
This is where I miss having “my person.” My youth was spent surviving each day, so I didn’t pursue any love interest. How could I bring anyone into this chaotic life? That thought process changed as I read more and put myself out there. But dating is hard, especially in this era because people are either stuck on their exes or have too many options. I have the patience for it but I don’t have the energy to get along with unsure people. (I’ll write this rant sometime else).
But hey, I’m turning 27 this May 20th. I’m frightened by the thought of TN worsening because in the past few weeks I’ve had the most painful pain attacks in eight years. I’m scared it will affect my work, friendships, relationships and every aspect of my life… AGAIN. The thought of going through all of that once more is paralyzing.
“I can’t do it again,” I tell myself as I go through it with grace. This reminds me of another paragraph from Jenny Lawson, “I don’t know what’s up the ass of the universe lately but I’ve HAD IT. I AM GOING TO BE FURIOUSLY HAPPY, OUT OF SHEER SPITE… I’m going to destroy the goddamn universe with my irrational joy.”
My neurologist told me I’m “too sensitive,” and need to be “more like others,” who give less shit about everything. But I feel things deeply. I’m broken and tattered but still ecstatically happy. I consider my sensitivity a gift. After all, it’s better to feel pain than nothing at all. Can you hear that, universe? You can do all you want but I won’t quit being the person I am.
I am going to be furiously happy out of SHEER SPITE of what you’ve done to me, universe. Also, I’m going to find my person this year.
Toodles.
