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The Beautiful Gift I Received That Changed How I Manage My Illness

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I am 26 years old and two years ago I was diagnosed with juvenile rheumatoid arthritis. From a young age it targeted my temporomandibular joints, reducing my airway to the point that I needed orthognathic surgery to reverse and repair the damage. At first, the diagnoses felt manageable. It blended into my life like weekly staff meetings or Wednesday night runs. I learned to compartmentalize it into a few boxes on my weekly schedule. I went to all of my appointments; I took my medications like clockwork. I ran in and out of the doctor’s office as fast as I could, my lists of questions jotted down on the backs of old receipts, ready to be pulled out swiftly and efficiently. I was determined to make it as non-existent as possible.

And then, before I knew it, my beautifully scheduled life came to a sudden and grinding halt the evening I awoke from surgery and found my face swollen, my jaw wired shut and a morphine drip chugging at my side. It was something I had anticipated for months, yet no amount of planning or optimistic note-taking could prepare me for the utter trauma of having my life come to a swift halt. Nothing could prepare me for the immense guilt, anguish, fear and loneliness that would engulf me once the morphine drip ran out and I found myself in a house in Santa Barbara awaiting a month of recovery.

The recovery that I imagined as a peaceful excursion within myself turned pretty nasty. For the sake of withholding the gorier bits, I’ll simply say that I was not a pretty sight, physically, or emotionally. Thankfully, the physical reality wasn’t anywhere close to that, but it wasn’t easy. The swelling, as any orthognathic surgical patient can attest, is brutal. It is suffocating in its persistence and its pain. 

I’ve read studies about how surgical patients experience post-surgical depression. It makes sense, of course. Life as you have lived it slows dramatically; physical movements are inhibited, if not completely stalled. And perhaps the hardest part of all: you’re on your own in this. Even for those of us who have immeasurably supportive people in our lives, they simply can’t go through this with you. You walk along this path on your own and inevitably your old demons come out of the shadows. Those dark and ephemeral voices of insecurity and self-doubt love to strike when you’re your most vulnerable. They stopped me in my tracks and berated me with angry accusations and mean comments. Why wasn’t I at work? Why hadn’t I checked my email this morning? Why hadn’t I replied to the 10 messages waiting on my phone? Here I was, days after a life-changing and invasive surgery, frantically trying to reclaim bits and pieces of a life that I determinedly separated from any and all diagnoses.

And then, just as the spiral was reaching a sickening pace, I experienced a timely intervention. In an effort to reduce some of the post-surgical swelling, I decided to visit an acupuncturist. And while I was there, the acupuncturist said something truly remarkable. He said, “Cherish this time to heal and allow yourself to be vulnerable. There is nothing else you need to do right now than to sit quietly. This is the most important thing.” And then he left me in a dark room with 30 needles in my body, and the parting message, “Let yourself be quiet.” It was the most beautiful gift in the world.

It is an odd thing to be given this special moment of silence. It’s a gift you feel almost inclined to reject, to kindly hand it back to the giver and say, “Why don’t you take this, I have somewhere else I need to be right now, and a few more things on my to-do list. Maybe tomorrow.” But I gave it a chance, and I started to breath, and I started to relax, and I started to feel my body unwind, and then all of a sudden I was crying. One of those belly deep cries that seem to come out of your very pores. This was a cry that resonated from the soul, that erupted from the heart, that felt like an extension of myself. The tears came swiftly and with ease, flowing like rain down a glass windowpane.

I cried for my body: for my bones that seemed so weak, and for my immune system that was working as hard as it could but seemed to have the wrong way of going about it. I cried for my face, and the plates and screws that were now holding it all together. I cried for the fragility of me. I cried for the vulnerability of me. I cried because I knew, deep in my bones, that this was inescapably, intimately me.

As the tears continued to fall, I started to form thoughts in my mind, specific phrases that I began repeating to myself. “I have arthritis. It hurts. It really, really, really hurts.” It was the first time I felt angry, the first time I felt like it simply wasn’t fair. I began to embrace the weight of it, the heaviness of it. A medical condition such as this can never be separate from you. This illness, and by extension, this surgery, will stay with me for the rest of my life. It will rest in the titanium plates in my face; it will linger in my blood and hover in my fingers and toes. And it will simultaneously weaken and strengthen me.

Since that day in the acupuncturist’s office, I have managed my arthritis in vastly different ways. When I’m feeling tired and sore, I take a hot bath and I turn off my email, put aside my phone. At the end of the day, I make time to stretch and do yoga. In the mornings I light a candle because it smells nice and for some reasons brings me a lot of relief. I tried to stop multi-tasking and to practice mindful presence. I cook healthier meals, and I have never missed a medication since. I have learned to care for and love a part of myself that before had seemed so foreign and unnatural.

For months I tried to fit arthritis into the spare parts of my life, to squash it into the corners of my week, convinced that as I checked off appointments, the arthritis would wait quietly in the corner until the following week when it would take its turn again. Unfortunately, by doing that I was extracting an integral part of myself, tossing it to the side without ceremony, and splitting my being into pieces in an effort to manage time and obligation. Little by little I chiseled away the most formative part of who I am, and I treated it without the attention and care that it deserved.

It wasn’t until I reached out and grabbed onto the diagnosis with dear life, feeling the weight of it and the realness of it, that I began to understand how to care for myself wholly, without question, and without exception.

Originally published: September 20, 2016
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