Ehlers Danlos Syndrome 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.

...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...

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.

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.

...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...

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.

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.

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.

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.