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Archive for the ‘The storm’ 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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There and Back Again

Posted in At the Doctor's, Boston, Hospital life, Immune Deficiency, Life Line, mito, Sick and Tired, Sleep, The storm on 21 August 2011| 3 Comments »

There is nothing like looking, if you want to find something.
–The Hobbit, JRR Tolkien

I had to look back at my last post (which was just six short days ago) because so much has transpired over such a short time. Although there were some frightening periods, we have much to be grateful for. The most important is your support. It means so much to me to read notes of love and encouragement. I could not make it through those difficult times without it. Thank you, thank you, thank you!

I’ll try to go through looking and the finding of the last six days as methodically as possible, but there’s much I don’t remember, so I apologize for the holes.

Just minutes after I posted on the latest saga with the positive news that my fever broke, I spiked another fever at 102.3. Despite 2 different antibiotics. Despite round-the-clock Tylenol. Although the fever was miserable, it seemed the treatments finally took hold on Tuesday morning and I went fever-free for just over 24 hours prior to discharge. During that time, we saw the Infectious Disease (ID) doctor who told us the bacteria grew out as MSSA, or Methicillin-Sensitive Staphylococcus Aureus, which is far more favorable than the nasty MRSA, aka Methicillin-Resistant Staphylococcus Aureus. We thought we were in the clear. Although he clearly still wanted my port removed, I was able to doe-eye the hospitalist into allowing us to try to save it so that I could swim and enjoy the last three weeks of summer. We got our discharge papers on Wednesday afternoon and my home health nurse met us at home for a three-and-a-half-hour review.

(more…)

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