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“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.”

“To those in need of healing, Who can never quite be healed: May curses be your blessing, And may weakness be your shield. To feel despite the numbness, And to hear the silent sound. To see there still is meaning When no answers can be found. I hope you’ll keep on searching, While you also search no more. For know that sometimes healing Is far different and far purer and far greater than a cure.”

“Learn as much as you can. Part of this learning will be your art, learning all aspects of your craft in depth and always challenging the boundaries of your style and comfort zone. But also study the world, literature, philosophy, politics, science—all the things that combine to form life as we know it. Because art is the portrayal of life, and the more you learn, the more you will have to call upon and be inspired by. Finally, don’t be afraid to market yourself. No one else will do it for you. Know what you’re capable of, and do not rest until others see it, too.”