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Archive for the ‘Stealing words’ Category

When it only makes sense

Posted in At the Doctor's, Blessings, Chronically cool, Hope, Life, reality, Stealing words, The storm on 26 September 2012| 2 Comments »

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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An invincible summer

Posted in At the Doctor's, Birthdays, Blessings, Boston, Change, Chronically cool, Coming together, Family, Friends, Home sweet home, Hospital life, Immune Deficiency, Invincible Summer, Kiddos, Life Line, Love and loss, mito, On the road, Party Time, Sick and Tired, Sleep, Smiles, Stealing words, Sunshine, Symposium, The Cans, The storm, Tutoring, umdf, Vampires on 8 September 2011| 6 Comments »

In the depth of winter, I finally learned that within me there lay an invincible summer. ~Albert Camus

Sometimes those of us with chronic illness get so caught up in the can’ts. The shouldn’ts. The mustn’ts. I decided to focus this summer on the things I can do. From embracing the lives of loved ones lost to adventures in lands (not-so-)faraway. So we celebrated, joined, conquered, ventured, traveled, laughed, cried, and smiled. And we experienced life. It didn’t matter that I did most of it hooked up to at least 3-4 tubes at a time. It mattered that I did it.

Now that the summer comes to a close (thank you, labor day), I thought I’d go through the tradition of writing the back-to-school essay “What I did this summer.” Then I rethought. And decided I’d show you.

What I did this summer:

{And wished her Happy Birthday}

{At the 2011 UMDF Symposium in Chicago}

{With my Great Aunt Arden at the Sears Willis Tower}

{Lab safety is a must while tutoring}

{Sisters Day Out – Southwick Zoo}

{First time at Niagara Falls – Maid of the Mist}

{Seneca Falls, NY – With two of my most influential people – On the bridge from one of my favorite movies, It’s a Wonderful Life}

{For the first time since my license was revoked for seizure activity}

{TPN bag, enteral tubes, and all!}

{White Mountains in NH with my favorite in-laws}

{Haven’t attempted this since I was a gymnast – take that mito!}

{At the 2011 Mighty Matthew Benefit in Plattsburgh, NY}

{We love you, Princess Eithene!}

{So blessed to live in Boston, the Medical Mecca of the World!}

{With 4 adults, 2 kiddos, 2 dogs, and a partridge in a pear tree}

{Disappointing from the weather standpoint, but fun nonetheless}

{With a grand closing to a grand summer!}

And no one can say I didn’t do. Because I did. I really did.

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Happy

Posted in At the Doctor's, Change, Family, For better or worse, Friends, Keith, Kiddos, Life, mito, reality, Show of Hope, Smiles, Stealing words, The Future, Tummy troubles on 29 April 2011| 3 Comments »

Today you are You, that is truer than true. There is no one alive who is Youer than You.
-Dr. Seuss

Sometimes it surprises me how happy I am. How comfortable I am in my own skin. A year ago, I’m not sure if I could’ve seen myself this happy despite all that has changed (my zip code, my health, my occupation, my income, my aspirations, etc.). But I’m honestly, truly happy.

Keith and I deal with a ton of stressors with our daily life that shock many people. For instance, every day this week, I’ve had at least one medical appointment, over half of which were in Boston. (This is not out of the ordinary.) In addition, we’re watching my niece and nephew while my sister recovers from surgery. (This is something that Keith likes to call “birth control.”) We also deal with daily medical regiments including IV nutrition, stoma care, catheterizations, sterile procedures, and medical interventions. (This is in addition to Keith’s full-time student status and my work tutoring, researching, and volunteering.)

(more…)

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