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Archive for the ‘reality’ Category

Hope only makes sense when it doesn’t make sense to be hopeful.

When I first read this speech, I was in a place of great uncertainty.  My health was failing, I was seriously struggling academically for the first time in my life, and I was 3000 miles away from many of the people I love most dearly. Hawken’s words were earth-shattering and life-changing. They resonate with me each and every time they come to mind. (I encourage everyone to read his words as the quote above is just a tiny sample of the way words can move mountains by speaking to one soul at a time.)
As an environmentalist (and humanist), his speech refers most directly to our relationship with the environment, but it certainly doesn’t end there. In fact, it barely begins there. When asked whether he is optimistic or pessimistic about the future (specifically of the natural world), he responds that a scientist can’t help but to be pessimistic when given the data. However, a human being can’t help but see the abundance of “ordinary people willing to confront despair, power, and incalculable odds in order to restore some semblance of grace, justice, and beauty to this world.”
In the last few years – and more specifically the last year – the data about my future has been pummeling my spirit to the ground. It is incredibly difficult – and nearly damned-well impossible – to hear about my failing systems and what I have to look forward to in the future without losing all hope. To hear that these continued sustained infections are not compatible with life.  To be disappointed each and every time you make a plan and have to cancel.  To awake upon a new day and find that you feel absolutely no better than you did just twelve hours before.  And indeed one does become hopeless.  It only makes sense when given the data. Luckily, it doesn’t end there; humanity gives endless hope when reality attempts to strip it away.
There is a shelf in my living room where hope collects like dust. Over the last twelve months, I feel shame that the shell of my former self has found such difficulty in expressing just how dearly I appreciate the love, care, and hope that has come my way, but please know that the cards, pictures, books, jewelry, pillow cases, balloons, and tokens of love serve as a daily and fervent reminder that hope is most definitely worth having. Especially when it doesn’t make sense.

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Wednesday morning we set off for our first big adventure in nearly a year. The destination? Chicago for the 2011 UMDF Symposium. The goal is to learn more about mitochondrial disease (you know, that pesky neurometabolic disorder that we can’t seem to shake) and the current treatments and research as well as meet up with members of the mito community from across the country. We’re pretty stoked to say the least.

But it certainly wasn’t easy to get here. First, we had to apply to a bunch of grants to pay for the trip. You see, Keith’s still a grad student and my work hours are few and variable; we just don’t have the kind of money necessary for this kind of trip – or any kind of trip for that matter. Luckily, we were able to get a good chunk of it covered.

After that, we had to coordinate all the medical mess. Because I have numerous medical interventions intended to keep me healthy and happy, nothing is ever exactly “easy.” For one, I’m on 24/7 intravenous infusions to provide nutrition, keep my autonomic nervous system content, and my blood glucose stable. The infusion bags are heavy, bulky, and many. And they have to be refrigerated or the contents will become denatured and useless. Bummer.

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One year ago, a very special little girl came into our lives. Eithene (pronounced Eth – eh – nee) Rose was a 4-year-old beautiful ball of spunk who, like me, lived with a combination of Mitochondrial Disease (an neurometabolic disorder) and Ehlers-Danlos Syndrome (a connective tissue defect). She was also born with numerous birth defects which are together known as VACTERL Association.

Over the last year, Keith and I have visited with Eithene and her family (mom Jessica, dad Sean, brother Gabriel, and Aunt Jill) whenever we were in Boston. We have grown to love them. We couldn’t leave a single store without Keith seeing something that reminded him of Eithene or one of the other mito kids we regularly visit. Eithene’s story, however, is somewhat unique. Over the time that we’ve known the family, Eithene has only left the hospital for about five days last July. Other than that, she’s mostly been in a room on the ICP (Intermediate Care Program, a step-down of the ICU) at Children’s Hospital Boston. We’ve visited through numerous infections and medical crises and seen the strength she exhibits on a daily basis. Her mother’s love and faith have been unwavering and inspiring. Not only that, but mom Jessica has helped me through a large number of my own medical crises.

Saying "hi" to True

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