At 18 I started asking my friends if their bodies felt old. I felt exhausted and strange injuries were constant.
A finger out of joint, sprains, back out of whack, neck like a five-alarm fire. If something startled me it would take hours, sometimes days for my nervous system to calm down. I would meditate daily, trying to calm myself, telling myself that I was safe. I felt like a hypochondriac, with something always going wrong, and over time my trust in what I was experiencing being so at odds with doctors telling me that I was just accident-prone, left me feeling out of touch with my body.
As a young adult alcohol numbed pain and allowed me to dance the night away to the bands I loved. It also helped me feel less burdened by anxiety as I started my own bands, but thankfully it messed so much with my GI that drinking a lot was short-lived, but the pain was still there. My joints ached. Food sensitivities. Extreme menstrual cycles, laying in a bathtub, unable to function. Random shoots of pain, dislocations, subluxations. I fall while walking. Tip over while standing. Hurt my arm opening a jar. Laughably injure the wrist flipping pancakes. It’s ridiculous. There’s no point in telling people about each injury, they look at me suspiciously. Not explanation. Walk it off.
I meet my husband. I am able to tell him when I am hurt. He cares and believes me. He is so helpful. So kind. I don’t know what will hurt me, so I just keep doing all the things. Pain is daily, debilitating pain is more frequent. There is life to live and I want to live it! Rest is not something I value.
Two pregnancies with my hips subluxated. Extreme pain walking, sitting, and lying down. Caring for a newborn worrying that the pain meant something really serious was wrong. The not knowing became so normal that my distance from my body became the norm. I ate right and was taking care of myself, yet my coping and stress resulted in dehydration being treated in the emergency room. I was so interested in pushing ahead and ignoring the pain and injuries that I forgot to drink water!
I became a runner. I fell all the time. I thought it was normal. I learned to fall onto the grass that lined the path. I read about how to fall safely to avoid injury. I ached and ran and fell and ran.
One day I was walking home from work on a Friday afternoon I twisted my ankle on a small rock in the path. That rock changed my life. I somehow knew this particular fall was significant and I put the rock in my pocket. It sits in my jewelry case, taking on more significance as time goes on because the day I fell and hit the concrete, scraping my knees, my joints were jostled and so many parts of my body were moved out of place, unable to stay put, that over the course of 2 days, the inflammation grew. I could feel the flames, but went to a dance party with my daughter. I could feel the flames, but I climbed down the bluff to catch frogs with my son. Burning, I opted to run to the Sunday afternoon work meeting and found myself stopped. I couldn’t seem to communicate with my legs. They just stopped. I walked slowly, late to the meeting, called my husband to take me home.
I could barely get up the steps to our bedroom. I couldn’t undress myself or put on my pajamas. I am deposited into the bed like one of our children and spend the night terrified. Through fitful sleep, I wake to discover that I can’t move my legs. I have to pee and I can’t sit up. I scream as he lifts me. The rock is sitting on my bedside table. My husband gets the kids to school and when he returns I call the ambulance and ask them to come without sirens. I scream and see colors and lights as they carry me out. My stay at the hospital is a drug-induced haze. The pain cordoned off by oxy, and I start to be able to move my toes, and my legs, use a walked and I’m allowed to leave when I can walk up a step. I attend my son’s kindergarten graduation in a haze, my walker in tow.
Recovery is slow. Months of being unable to sit up. I don’t have an explanation for what happened. Not really. You fell. I fall again walking up steps, tip over while standing and I’m so frequent to urgent care that they ask if I’m addicted to pain meds. I cry. I hate oxy. I have nursed the prescription from the hospital for almost two years and have a half a pill left for when I really need it. If I take it I am sick after. Urgent Care tells me that can’t keep giving me Toradol. They are worried for my body.
I sit in the driveway crying. I have to figure this out. My friend helps me find a doctor. Dr. Johnson understands that I have not had a primary care doctor since I was a kid and spend a couple of hours on intake. We discuss my anxiety, my injuries, and the mystery. She asks me if I have any body tricks. I show her a little, but she doesn’t want me to get hurt putting my feet behind my head or making my shoulders go all the way around. She sends me to genetics. They confirm that I have hypermobile Ehlers-Danlos syndrome (hEDS) and it all makes sense. All of it.
At physical therapy, I keep looking at the pool and ask if I can work on strengthening in the water. I am so afraid of falling. I use an assistive seat to get in the pool and I’m so afraid of getting hurt, but over the course of weeks, months, and now years, I get stronger. I have a recliner put in my office so that I can rest during the day and work from a laptop. I blast myself with Vitamin C.
I get a little doggie to keep my company when I have a flare-up. He is on a constant feedback loop of joy and positivity. I start taking Gabapentin and get a tens unit. I start to notice that my heart needs mending, too. Turns out if you separate from your body, you also don’t deal with your mental health. I am diagnosed with PTSD. I start to heal my relationship with my history and my body.
What once felt impossible starts to open up. I start to understand myself differently. I am not a hypochondriac. My DNA makes too much collagen. My body is too flexible. I am not a hypochondriac. I am a zebra.
I now tend to myself, mother myself. Check-in with your body. Breathe in with your eyes closed. Do you need to recline? Are you tired? Drink water. Don’t forget your meds. Get enough sleep. Swim. Remove alcohol entirely. Eat against inflammation. Swim. Check in with your body. Rest in order to go, go, go! Manage your time to show up for work, for bands, for family, for rest. Budget time for rest. Swim. Swim. Waterproof headphones. Dance in the water to the music. Free! Listen to your body. Rest. Forgive what you did not know. Be flexible.
