The Zebra’s Stripes

This is the post excerpt.

*Note* This was written in 2018. I did not feel brave enough to publish it until now, September 30,2020.

In the still moments between peace and pain, I find myself questioning my identity. Am I the girl with invisible stripes, forever marked by the zebra, the mascot of rare disease? Am I the adventurer I always dreamed I would be? A titanium heart, a body made of glass; every day involves fighting for the strength to keep me from shattering.

Ehler-Danlos Syndrome is my enemy. It’s a rare connective tissue disorder that affects the makeup of collagen. Imagine discovering the most beautiful home in the world. Everything about it is perfect. Then, without reason, the house begins crumbling. You research for days, months, even years, before realizing that the brokenness is resonating from within. 

Welcome to my life with EDS: joint hypermobility.

It began with scoliosis along with an unexplainable bulging disk. Years later these symptoms were followed by repeated spontaneous knee dislocations, shoulder subluxations, and rib dislocations. I used to believe I could protect myself from injury by limiting risk and adventures. I was wrong. In reality, EDS is a relentless battle. The fear of pain has all but choked the life out of me. The thing about EDS is that the flare ups are unpredictable. It doesn’t take much to trigger a flare. A simple wrong step or breath can be a personally cataclysmic event. 

There was a time where I was filled with wanderlust. I saw myself as a world traveler, a musician, a motivational speaker, a volunteer distributing restoration to impoverished communities. As a teen I built houses in Mexico on spring break trips. In my early 20’s I visited Australia and raised awareness about human trafficking in local community outreach projects. Currently I find myself in my mid-20’s aspiring to hike as often as possible. Music is becoming more of a passion as I sing and write and learn the language of guitar. I’m entering into the world of nonprofits and grant writing by volunteering at a local foster care agency. 

The truth about my glory days is that they weren’t without problems.  There were sleepless nights in Mexico from migraines and the effects of scoliosis. The adventure to Australia occured just weeks after completing physical therapy and learning how to walk again after a severe knee dislocation. At the time I was still undiagnosed and my physician dismissed my feeling of patellar instability, explaining that it was my subconscious causing the insecurity. Therefore,(believing my doctor’s diagnosis), I began my travels without any knee support while also recovering from tendonitis. The dislocations resumed the moment I stepped off the plane.  Add into the equation that my ribs were also dislocating without benefit of proper aid and diagnosis. I simply lived with my ribs out of place for the six month excursion. 

While the good days are full of hope, the bad days are completely defeating. Living with an invisible illness can feel suffocating. I know how to smile through the pain. I know how to hold myself together with tape and braces and compression garments. I hide my fear: fear of another injury, fear of continuing to break apart until all that’s left are shattered pieces, fear of not being able to accomplish my life goals. I hide my depression that comes with the realization that I am slowly losing the job I love. Teaching preschool has been my identity and my passion. However, as my condition worsens, I find myself with infinite work restrictions such as limited bending and lifting. While understanding that these restrictions are in place for the safety of myself and the children, I silently struggle with feelings of incapability. I hide my anger that is rooted in the fact that my body is failing me. It’s painful to see able-bodied peers loading their own groceries, jogging on the street, carrying children; all carefree and without trepidation. I hide my uncertainty of motherhood and child bearing. As is it right now, any change in weight can throw my body off and cause multiple dislocations. I don’t dare let myself imagine what it would be like to grow a little human inside of me, knowing that there’s a 50% chance of passing this disorder onto my children. I hide my heartbreak, locked away inside–just like my invisible illness. 

One of the breaking points in this journey came before my diagnosis. I had been sick for months, with what turned out to be pneumonia. I remember attempting to quietly enjoy a choir concert while being plagued by uncontrollable coughing attacks. Suddenly I felt a shift and twist in my entire right side, accompanied by a crunching noise and extreme pain. By this point I had become familiar with the unusual workings of my body, enough to know that I had just dislocated multiple ribs. The next few weeks were spent lying in bed and doing my best to hold back the tears. The smallest movements, even those made from breathing or crying, felt like being stabbed by with a sword with was then ripped through me several times over. I became angry that chiropractor visits brought no improvement, because as soon as I’d sit up everything would slide out of place.  Depression and despair filled every inch of me. Paralyzed by pain, I held on to this spiritual phrase “Now I know just what they mean. In you I live and breathe and have my being”.

Reflections of Friendship

It was a Tuesday evening, the band was playing, I was observing the people surrounding me. That’s when I saw her, the girl with the dreads. Her heart was engaged in worship, entirely. I knew in that moment, we were to become the best of friends.

Our hang out sessions consisted of coffee, cards, and good times. In the early days things were lopsided, but in a beautiful balanced way. I was in a season of deep depression, seeking compassion and empathy that had long been lacking in my life. Morgan was an answer to my prayers. She so graciously and patiently loved me. There were demons that I was fighting: Darkness and Despair. They had their hand around my heart, slowly crushing me. Morgan walked in a Light so strong it could almost outshine the Darkness.

Often times I would show up, too deeply lost, unable to find words. Morgan didn’t mind. She’d fix me a coffee, hand me a warm blanket, and go about tidying her home. Simply being in the presence of someone so warm was enough to melt my walls. Over time my heart healed and I grew to know how to give love just as well.

A favorite season of life, with Morgan, was celebrating the gift of her first pregnancy. She had waited for so long for the right time to come. I dreamt of her baby girl. Blonde, spirited, full of wisdom and light, just like her mom. When the boy arrived I had visions of joy and laughter, strength and steadfastness.

It’s been a decade now, since the beginning of our friendship. We’ve both had our fair share of ups and downs. Once again, I am in a season of depression and trying to figure out how to stay put together. I’m rediscovering the importance of our bond.

Morgan, our nearly nighty visits mean the world to me. I treasure the exchanging of daily struggles, joys, and human-ness. I feel thrice blessed as my dear sister, Kim, has joined our circle. I admire your faithfulness, patience. You remind me of Love, Almighty. Being a part of your family feels like Redemption. Your children are everything I thought they would be. They help lift me out of my deep darkness. The Light radiates from them, and fills the cracks in my heart. Thank you for so graciously sharing your life with me.

Heart Speaks

Writer’s Block. It’s taken me so many years to breathe my life into words on a paper. I was born for this. I can feel it in my heart. I was made to speak truth, and love.

Fear. It fills me. Controls my every move. I want to be brave enough to live my life out loud. I can’t. At 28 years, I still care what people think. I’m worried I’ll upset, disappoint you. I’ll act a fool, bringing shame on myself.

Paralyzed. I’m frozen somewhere in space. Between the past and future, in no reality. I don’t dare let myself reach for the stars. I just can’t bare the thought of falling short, becoming a failure.

Broken. My dreams are shattered by the life wasted while I was young. I could have done more, I wanted to. But I chose to stay stagnant. My body has become a prison, just like my mind. It aches, it’s weak, it holds me back.

Faith. It’s the only thing I have to hold on to. Everything is slowly crumbling, out of my control. I’m desperate for a promise that it will be ok. With each tear I cry I pray for some release. Hold me. Help me let go.

Heart Speaks. I find freedom by giving a voice to my heart. With every word, a chain breaks, walls are torn. I learn that who I am is nothing to be ashamed of. There are others out there like me. I am not alone.

Grieving the Loss of Ability

For those of you with chronic illness or chronic pain, how do you deal with grieving the loss of the life that you thought you’d have?

I had always imagined that I would be strong, capable and independent. I would travel the world, excel in hiking/outdoor activities, work with kids, live alone, be able to take care of myself and my future family, basically do everything a normal person can do. I feel like I’ve hit rock bottom. I’m not as young as I once was. My body is taking this a lot harder than it did in the past. My knee is still dislocating even with KT tape & brace combined. My hip is messed up and painful from compensating for the knee. My ribs sublfux from the crutches (even though someone loaned me forearm crutches which do help a lot). Doing my PT exercises hurts my hernia which leaves me in further pain and discomfort. As soon as I got here I started doing everything I can to get better. Lots of rest and PT, supplements, cleaned up my diet and quit drinking. I know getting better doesn’t happen overnight. I know that it probably won’t look like what I thought it would. I know not every day will be this hard. I know grief comes in waves.

I’ve taken the advice of reflecting on what I am grateful for. Things like my sister so gracefully taking care of me full time for the last few weeks, my girlfriend meal prepping for me and helping take care of me to give my sister a break, my dad for doing everything he can to make my home more accommodating to my condition, friends and family that check in with me. All this does help my heart. It makes me less angry – to know that I’m not going through this alone.

I have a list of things I’m looking forward to when I get better, like car camping, regular camping, hiking, taking my dog for walks, seeing people for the holidays. A lot of people have offered to be there for me when I need it. I am grateful for you. I honestly don’t know what I need to get through this…so I don’t even know what help to ask for. I guess I just need you to know that I am hurting, in so many ways. I need to know that even though I have an invisible illness that I often try to hide further from, that you can see me. I need love, prayer, encouragement. Maybe I need a support group for chronic pain sufferers. Maybe I need special guidance or counseling.

Where do I start? How do I come terms with what is happening to my body? I am doing everything within my control to fix it. But for everything outside of my control… How do I learn to grieve and grow past this?