Ghosts in My Bones: Love Letters from a Haunted Body

Original art by Annie ig: houseofkaramazov

Light, once easy, soft and kind

The beauties in my life were taken for granted. Love of music, that one special chord, the frequency that makes your skin sing (mine is A flat, by the way), or waking up with the sun in the spring, stretching so your bones crinkle right before your body relaxes, or typing 100 words per minute when you're feeling inspired, fingers flying across a keyboard faster than thought. I loved calligraphy. These beauties were easy.

Pain arrived and changed my mind

The summer had been the hardest on record. There was chaos and injury and stress and finally loss, but I thought I was coping. Then I woke up and it felt like my bones themselves were bruised. I assumed I'd slept funny and carried on as usual. Chloe Cooper Jones has a way of distracting herself, "a method for dissociating from physical pain" (17) that involves counting, but this soreness made everything seem laughably small. It radiated. It throbbed. I couldn’t have counted to eight even if I’d thought to; it was so new and so consuming that all I could do was cry.

I felt angry and confused; it was "one more damned thing I have to deal with in this hellscape of a year." I had no context for it. It seemed absolutely absurd that I couldn't lift my arms anymore, just...suddenly. I was strong but now I couldn't brush my hair, let alone wash it, or even myself. I slept and showered in my clothes. My fingers stopped working. My hands shook; they swelled up and were rendered immobile. I was dropping things and having to leave voice notes instead of texting because I physically had no choice.

I didn't build this thing that attacked me–that continues to attack me–my disease called lupus that came upon me all at once. I say "my lupus" like I own it, like it's mine, like I chose it, or it belongs to me instead of being something waiting in my body to detonate. I feel sometimes like I belong to it. I say "my lupus" because distancing myself from this pain is impossible and like it or not, we're bound together now.

My mother apologized to me, because after all, she had it too and it was from her I inherited a predisposition for this immunological prize. It hid in her body until 2011, when she lost all her hair and 20 pounds in a month that she couldn't afford to lose. She was skeletal in the hospital for weeks, we all thought she was dying. Lupus is one of those things you don't really positively diagnose insofar as you rule everything else out then treat and hope for the best. It's serious. It's a slow suicide in which your immune system turns on its home, YOUR body. Your hair? Skin? Joints? Fair game. Your organs? On the chopping block. It unceremoniously removes 10 years from your existence and fills the rest with agony and a collection of doctors and specialists.

It took 6 months for a diagnosis. The average time is about 5 years but my mother's history made it a pretty done deal. I was LUCKY, if you can believe it.

Body broken, still I learn

My hair fell out and I was confronted with vanity I would have denied having. I had shaved my head for years by choice and now I had to because it was patchy and loose. I didn't have a choice this time, not really. My skin was dull and the high-dose steroids I took for months to control the joint pain made my body heavier–it made it foreign. Nothing whispered against the pain otherwise. I was exposed to perspectives I was not expecting. My movements had to become deliberate; I dropped things and stumbled and my spatial awareness had become non-existent. I suddenly had "limited mobility" that required "accommodation" and "patience."

In March, a month after diagnosis, I woke up screaming. I literally screamed myself conscious. My rheumatologist had warned me that the cocktail of drugs I was taking could cause clotting and if I experienced any pain or trouble breathing, to go to the emergency room immediately. So when breathing felt like being stabbed, I was worried; but I didn't want to be a bother. I argued with myself.

"I'm probably fine though."

She said any pain AT ALL. She emphasized it.   

"Yes, but what if I'm being dramatic?"   

Yes, but what if you could be dying?

My sister resented having to take me to the hospital so early (I come by my worries about being dramatic honestly). She doubted it was serious until I told her my symptoms and she looked up deep vein thrombosis and pulmonary embolisms. Then she went pale. Turns out I was kind of dying. Add breathing to the list of easy beauties that I took for granted.

Grace is something hard to earn

I've had to accept help from people now. To ask for grace when I'm sore. To set aside my pride and independence and ask for help sometimes. I had to allow my friends, my always beautiful friends, to come to my aid and walk my dogs or change the laundry and to help me clean my apartment. I already knew I was lucky, that was never in doubt, but my fortune is unquestionable.

I was confronted with new limitations that antagonized me. My existence itself is limited. My bones and tendons are kind of loose, so rides at fairs are out of the question. I have to wear special socks on airplanes. I have to take 8 pills in the morning (whittled down from 15, I'm lucky!) and 3 at night (down from 6!) but if I miss a few doses I get really sick. I can't even take anything for pain other than Tylenol.

I still see, and that's divine

As the pain moved away from me, pushed back into its columns by the handfuls of drugs I have to take, the scars of perspective never vanished. Holding a book became beautiful because my wrists were strong again. Climbing stairs is still terrible, but I can do it. I'd still rather take the elevator (especially if I haven't stretched) but I'm not stranded anymore, I'm not trapped. Making tea is a beautiful luxury because I can lift and fill the kettle, then pour the water and carry the mug. I can trust that my hands will hold on tightly enough that I won't spill. I love walking more than ever before because for a little while I couldn't.

I never blamed my mother. Chronic pain is no longer hypothetical to me. The pain of my lupus–because it IS mine, I DO own it–clarified how important small beauties are. It stripped away the vanity and the arrogance of ability and left only the demand that I accept and embrace the reality check I so violently received. I was immediately and forcibly slowed down. I needed to stop and take a breath, so my body stopped me being able to breathe. I had to appreciate what "not breathing" really felt like, and now I can and it's wonderful. I'm not mad at the cold anymore because all I can think is that it smells so good.

I and my body are one thing. All I can do now is make incredibly dark jokes at my own expense that I mean completely sincerely because perspective itself is beautiful, especially if it rocks the foundations of what you thought you knew but you're still standing afterward. It has become a goal in my life to make each of my Pokemon collection of doctors and specialists laugh when they didn't mean to because there is beauty in surprise and in laughing about something that would otherwise make me cry. I jokingly call my body a "faulty meat suit" and a "haunted carnival and there are ghosts in my bones."

This endurance I was forced to develop is not about "use it or lose it," it's not a threat; it's an offering. It's a chance to really love and appreciate this body that will one day slow to a stop but hasn't yet. I can breathe, after all. Easy beauty breaks so quickly, you should have a stockpile of the tricky, difficult stuff to pull from when you need it. Write letters by hand because you can lift a pen. Breathe in the cold because you can trust your lungs to expand. Endure the terrible pains not as punishment, but in order to appreciate what it's like to miss something. I'm not angry. I'm grateful.