Ehlers Quotes

I love the days when my body cooperates.

Every EDS patient knows that one of the hardest parts of our day is the moment we open our eyes and waken into the reality of our bodies, stirred from dreams of ourselves as we used to be, and the futures we imagined we’d have.

I may not want to appear different than every other rider on this field, but I already am.

Over the years I have developed and employed a variety of such coping mechanisms, mostly focusing around a philosophy I call, “Live Because.” “Live Because” is in contrast to what I’ve termed “Live Despite,” which is the idea that people can live rich, full lives in spite of their physical or emotional barriers. “Live Because” takes this a step further by suggesting that in many cases, patients can live a more fulfilling life with their illness than they could ever have done without it. Ehlers-Danlos syndrome has transformed me from a frequently petty and self-absorbed person into the person I am today (still somewhat self-absorbed, but a lot less petty, and with a clearly defined purpose of alleviating whatever suffering I can). I am better because of my illness, and not just in spite of it. But this process was, and still is, a journey. Chronic illness is nearly always accompanied by depression, and the need to constantly remain one step ahead of my illness has left me fearful and exhausted. I could never go through this alone... A part of me will always be angry; such is the process of mourning the pieces of oneself that are lost to chronic disease. I have learned to accept the duality of being bitter and at peace; ignorant and enlightened... while still laying a foundation of hope for the possibility that I can still realize my personal dreams and ambitions, even if not in the exact ways I had expected.

...the pain of mending is only second to the pain of the original injury. Basically another Tuesday.

I block out the pain, lock it behind a wall like I've done my entire life...

EDS is a scary and challenging diagnosis, but the consequences of not knowing are far greater than that of a correct diagnosis. EDS symptoms can range from the very mild to the extremely severe. One thing is certain, though: If I had received a diagnosis back when my symptoms were mild, I would be living a very different life now. Every single day, in my struggle to actualize the person I still can be, I cannot help but mourn the person I could have been.

Everyone saw you lose it,' I whisper, doing my best to mentally block the pain like I have countless times before. It's usually as easy as building a mental wall around the pulsing torment in my body, then telling myself the pain only exists in that box so I can't feel it, but it isn't working so well this time. 'I didn't lose it.' He kicks the door three times when we reach it. 'You shouted and carried me out of there like I mean something to you.' I focus on the scar on his jaw, the stubble on his tan skin, anything to keep from feeling the utter destruction in my shoulder. 'You do mean something to me.' He kicks again. And now everyone knows.

...my hair is the only thing about me that's perfectly healthy. Cutting it would feel like I'm punishing my body for finally doing something well...

Are you calling me weak?' 'No.' Mira squeezes my hand. 'Just... fragile.' 'That's not any better.' Dragons don't bond fragile women. They incinerate them. 'So she's small.' Mom scans me up and down, taking in the generous fit of the cram belted tunic and pants I selected this morning for my potential execution. I snort. 'Are we just listing my faults now?' 'I never said it was a fault.' Mom turns to my sister. 'Mira, Violet deals with more pain before lunch than you do in an entire week. If any of my children is capable of surviving the Rider's Quadrant, it's her.

You can't keep your seat?' 'No.' It's barely a whisper, and the heat of embarrassment scorches my skin.' 'How the hell can you not?' Her mouth hangs open. 'Because I'm not you"' I shout. She rears back like I've slapped her, our hands breaking apart. 'But you... you look so much stronger now.' 'My joints and muscles are stronger because Imogen makes me lift these horrible weights, but that doesn't... fix me.' Mira blanches. 'No. I didn't mean it like that, Vi. You're not anything that needs to be fixed. I just didn't know you couldn't hold your seat. Why didn't you tell me?' 'Because there's nothing you can do about it.' I force a wry smile. 'There's nothing anyone can do about the way I'm made.

I'd let go of all the strings that held me together just to see you smile.

Blinking away tears, I war within myself. Staring intently, the corners of his eyes wrinkle and his lips form a straight line. “You wouldn’t believe me if I told you,” I say. “Try me,” his eyes bore into mine. Glancing away, a tear slips down my cheek. Wringing my hands I say, “You’d think I’m crazy.” He sighs, “I would not think that for a second. Just tell me, please, so I can help with whatever is going on. You’re scaring me, babe.” His fingers smooth under my chin, turning me to face him. “Please.

Henry,” reaching out to shake him awake but my hand lands on top of the sheets. “Henry!” I say, looking around the room. The face cocks his head, the paper around his eyes pinches together. Blood pulsing, the man crawls onto the bed. His head wrapped in paper, words etching it, and nausea swirls in the pit of my stomach. “Not again,” I rasp. Fisting my hands in the sheets, he slinks closer. “No.” Leaning over me, pressing my back to the bed, he breathes in deeply against my neck. The incubus moves his hand down my curves, resting it on my hip. Pressing down, a pain flares in the area and the remembrance of hitting my hip against the counter this morning comes forth. A small groan escapes me. Trailing my hand to my thigh, I dig my nails in till I break skin. Wake up, I think as I squeeze my eyes shut. His breath tickles my collarbone, down to my breasts. Wake up, I scream as blood trickles from my open wounds.

Flipping us around, he arches my back, kissing me down my stomach. Rolling my head back, he nips at the hem of my lace panties. He yanks them off and hefts up my hips, spreading my legs. Tracing his tongue along my throbbing folds, my sex grows moist as his hot breath induces a need within me. Massaging and nibbling, his tongue teases my entrance. Grasping his hair, he dives in. Groaning, my head rolls to the side as I buck my hips higher.

Gazing back into his eyes, he smiles and I return the favor. Our foreheads touch and we breathe in the same hot air. His hand grazes my bare hip and I realize that he's got me completely naked. This encourages me to do the same to him. Drawing my hand down his side I slip my fingers under the ripped fabric covering him. I slide it down while pushing him onto his back. With both hands moving the fabric I’m able to drag it smoothly away from his body. I toss it away. Bracing my hands on either side of his muscled torso I kiss the length of it, heading south. His knees tremble between my legs, rubbing themselves against my thighs. This gets my heart pounding.

Cutting me off, he smoothly kisses me. Slow and gentle, our mouths work in harmony as I grow weak in the knees. Grateful for him holding me, with my arms around his neck, I pull him closer. Running my fingers through his soft, shaven sides, a moan escapes me as his tongue trails between my lips, then slips in. At my sides he fists my shirt. In his trousers I feel his bulge. Gripping the back of his shirt, the world melts away. My heart pounds, sending throbs towards his chest. He smiles. “I can feel your heart beating,” he says in between kisses. Blood rushes to my cheeks. “Yeah, just ignore that,” I say embarrassed. He laughs.

He rolls his head a bit. "I love you Annabelle," he whispers in my ear. I sigh, "I love you too...." A buzzing erupts around us. I look over to my phone on my black nightstand. It’s vibrating along the slick surface. Groaning I say, "It looks like the real world is calling me." Veering my view back towards Henry, my smile falls when I see that the space he laid in moments ago is now filled with nothing but air. My throat tightens and once again tears well up in my eyes. The buzzing continues ringing in my left ear. My eyes pop open.

Laying on my left side I’m awake, but asleep. In that strange between place, a dream still dancing at the edge of my consciousness. Awareness prickling at my skin, I’m being watched. My eyes gaze past my black bookcase and catch sight of him. My almost waking mind counts the thuds of my heart. He’s crawling along the walls. I sink into my bed in fear, trying to hide, disappear. Naked flesh. Everywhere. Except for the smallest bit of shredded fabric around his groin. But that’s not what scares me. His face is terrifying. It’s covered, wrapped with white paper, black lettering forming sentences all around as if it were pages from a book. It not only covers his face but strands of dreadlocks standing on end. He crawls down and over my TV that sits on my dresser. The beast slinks from the TV, to the dresser, to my bed. Then he’s on top of me.

Hyperextension in the lower extremities, such as knee hyper extension shown here (see figure 5), not only puts added strain on the opposing musculature, but it also leads to added stress on numerous joints and muscles throughout the trunk, spine, shoulders, and even all the way to the cervical spine and tempermandibular joints. Knee hyper extension can cause the foot arches to flatten, the tibia rotate inward, the pelvis to shift and rotate forward, and cause abnormal spinal curvature and excessive forward head positioning. This habitual standing posture can result in what is referred to as upper and lower cross body syndrome (see figure 6). These poor postural habits lead to shortening, weakness and inhibition of key core stabilizers resulting in misalignment and pain in joints. And, what happens at our base of support, sitting or standing, affects the positioning of the rest of the body.

One common problem caused by postural faults is forward head position, in which the head is sitting forward of the spine. In this posture, for every inch the head moves forward, the weight of the head on the spine increases by an additional 10 pounds. People whose head is sitting 3 inches forward of their shoulders are now supporting 42 pounds of weight, compared to what is typically 12 pounds in aligned posture. This can occur in both sitting and standing postures. It can pull the spine out of alignment, reduce lung capacity inhibiting complete lung aeration, contribute to a sluggish gastrointestinal system, cause tension headaches, and decrease balance. Most devastating is if forward head posture leads to cervical spine instability, as a result of constant strain on the ligaments which stabilize the neck. A stable cervical spine protects the spinal cord and brainstem. The laxer the ligaments, the stronger the muscles must be support the head and neck.

What’s wrong with your legs?” She froze at my harsh tone. “Oh, um, I have something called hypermobile Ehlers-Danlos.” She dug her fingers into her thighs. I had to physically stop myself from replacing her hands with my own. “What is that?” “It’s a connective tissue disorder, so my joints aren’t super stable. My hips and knees are the worst. They can dislocate or do something called subluxing, which is like a partial dislocation.

Studies indicate that when people have hope, they are better able to manage stress, cope with setbacks, think creatively and achieve their goals.

Mark Strauss writes, “The Holy Spirit living in the believer is the same Spirit who inspired the authors of Scripture so that, essentially, when we are reading Scripture, the Spirit is explaining the Spirit.

I’d rather have one God idea than a thousand good ideas. Good ideas are good, but God ideas change the world.”13

Every EDS patient knows that one of the hardest parts of our day is the moment we open our eyes and waken into the reality of our bodies.

Mark Waugh, the most fluent and aesthetically pleasing batsman of his generation but also one of the most frustrating to watch. Often, when he appeared to be a class above the rest and to have the bowling at his mercy, he would play a lazy shot to what appeared, more often than not, an innocuous delivery. And just like that his innings would be over. To make matters worse, he didn’t seem to care; he would nonchalantly wander off the field. No shaking of the head or staring back at the pitch to apportion blame. His fans had to learn to accept 30s and 40s instead of centuries and 150s. His concentration, some would say his interest, never seemed to be there in the Test arena. Despite playing some match-winning Test innings, Waugh was never quite able to shake the ‘lackadaisical’ tag.