Archive for the ‘Tutoring’ Category

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{For the first time since my license was revoked for seizure activity}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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Everybody’s got plans… until they get hit.
Mike Tyson

Before the recent one-two punch from infection after infection, and before the internet snafu and ensuing struggles with Comcast, and before the exciting week with visitors, and before I was finally able to get back to work this week, I had great plans. Well, I guess not great plans – they were nothing compared to those of my childhood, or those of a naive high schooler, or even those prior to the latest major health struggles back in December and January – but they were plans.


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As you may have noticed, I’ve been mostly absent from the internet for over two weeks now. Following an internet snafu at our apartment that took far too long to remedy (thank you, Comcast…), I’m baaaack! And we are now the proud owners of a land-line with a Massachusetts phone number! Yahoo!

I must say that it was somewhat nice not having internet. I didn’t stress over e-mail or Facebook or even the weather. Whatever happened, happened. It’d still be there when I got the internet back. I was able to check for important e-mails and monitor bank accounts and the like by borrowing internet from friends every few days, but it was for minutes at a time and just for the essentials. It was almost as if I were back in the 1990s! And I loved it!

But now that I’m back, I’ll give you a brief update on the last 18 days, you know, in the few hours I wasn’t catching up on sleep! 😛


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It looks like Christmas came to my room and spewed red and green vomit everywhere. And I love it!

I’ll admit it: I was starting to lose my spirit a little after I’d been in two weeks, without an end in sight, and the projection of spending Christmas at MGH. I’d been poked and prodded every which way. Despite what my medical team was doing, my blood work was abnormal. And my first glimpse at freedom (the first attempt at the GJ tube procedure) failed. Fortunately, I’ve surrounded myself with people who make it nearly impossible to lose one’s spirit!


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Sometimes I forget that my favorite tutee is on the autism spectrum. She is incredibly bright and happy. She’s enthusiastic and engaged. But I get occasional reminders.

Today, my optometry appointment was canceled so I called her mother to see if it would be okay if I came earlier (Wednesdays are half-days for her so I usually come quite early). She asked my tutee. All I could hear on that end of the phone was a resounding NOOOOOOO.

Kids on the spectrum usually live quite rigid lives. Rules are absolute. Schedules are absolute. It’s most certainly not easy.

But that’s not the most difficult part. Those on the spectrum also have difficulty recognizing and mimicking social norms. It means many live isolated lives. It does not, however, mean that they do not have feelings and desires to connect.


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Sometimes when dealing with something as ugly as mitochondrial disease, it can be difficult to keep the focus on the good and the cure, rather than the sick and the disease. For this reason, I feel incredibly lucky and blessed to have such an amazing support network of friends and family. Even through the bad, they are able to keep a smile on my face and laughter in my belly. They are able to remind me not to focus on the disease, but rather they push me to fight for the cure, to become part of the cure.

This week is Mitochondrial Disease Awareness Week. But rather than tell you more about the disease – I think I’ve do a pretty good job for the mito-illiterate – I want to share with you all the good and amazing things I am blessed to have in my life. Because living with mito is not just about living with the disease, it’s about living.


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First, I apologize for the delay in updates. It’s been a hectic week!

Last Friday, I had a routine neurology appointment at the Brigham. Not too much transpired, but the meeting confirmed that I am in need of a new neurologist. After the appointment, I rewarded myself with a visit to a couple of my friends over at Children’s. We try to visit my good friend Eithene whenever we’re in the area. As I’ve mentioned before, Eithene has been hospitalized most of her four years. While we were at Children’s, we also visited Eithene’s good friend Matthew. Matthew was in for an ileostomy to help with his chronic intestinal pseudo obstruction. We brought them some goodie bags packed with books and zoobles – an interesting toy that I had never heard of before Matthew professed his desire for some. We had a wonderful time visiting with our friends (and, of course, their parents!) before we were off to pick up Keith’s brother from the airport!


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