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Archive for the ‘Hope’ Category

After the storm

Posted in At the Doctor's, Blessings, Boston, Hope, Hospital life, Immune Deficiency, mito, Seize the Day, Stealing words, The storm, Tummy troubles on 11 April 2011| 2 Comments »

When it rains, it pours.

It often seems like all the bad stuff gets clumped together in one big barrage of awfulness. This hospital stay is surely no exception.

First, we’ve dealt with a few episodes of dystonic storms. These are often triggered for me by exhaustion, physical pain, and exertion. When these three things are combined, the storms are worse. Dystonia is a movement disorder that causes involuntary movement and posturing of different muscle groups. I’ve suffered from dystonia in my left side for about 9 years. Recently, the storms have caused me to have bilateral leg involvement. It’s painful and the treatment often given cannot be used on me due to the underlying mitochondrial disorder. In short, it sucks.

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No longer starving: An update

Posted in At the Doctor's, Boston, Hope, Life, mito, Raising Awareness, reality, Realizations, Tummy troubles on 15 March 2011| 1 Comment »

[This is Part 1 of my No Longer Starving series, a belated editorial for Feeding Tube Awareness Week.]

Today I went to see my tummy doc for the second time since I got out of the hospital in January. In honor of that visit, I’m going to start off what I intended to be my series on Feeding Tubes for Feeding Tube Awareness Week back in February. As one of the newest inductees in the tubie world, I want to take you on a journey. A journey through feeding tubes, why they’re necessary, and who may have one. But I’ll start it off with a bit on today’s visit and an update on our progress and my current state.

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For you

Posted in Coming together, Friends, Hope, Love and loss, mito, Raising Awareness, Stealing words, The way I see it on 7 February 2011| 8 Comments »

People are often unreasonable, illogical and self centered;
Forgive them anyway.
If you are kind, people may accuse you of selfish, ulterior motives;
Be kind anyway.
If you are successful, you will win some false friends and some true enemies;
Succeed anyway.
If you are honest and frank, people may cheat you;
Be honest and frank anyway.
What you spend years building, someone could destroy overnight;
Build anyway.
If you find serenity and happiness, they may be jealous;
Be happy anyway.
The good you do today, people will often forget tomorrow;
Do good anyway.
Give the world the best you have, and it may never be enough;
Give the world the best you’ve got anyway.
You see, in the final analysis, it is between you and your God;
It was never between you and them anyway.
-Mother Theresa

Sometimes I can find no words for what’s going on in the world around me. For what’s happening to those I love. For the pain and hurt I see. My solution? I steal words.

Mother Theresa is one of my favorite sources. She finds the words that my heart wants to say but is too distraught, too lost to find.

When I am hurt or see a loved one in pain, my first instinct is to pull it all back, to retreat. I often describe myself as being as vulnerable as a sea cucumber. I’m sensitive and out in the open. My only defense is looking pathetic and harmless enough that no one would want to harm me. (I mean, seriously, have you ever seen a sea cucumber?) But that’s not the answer.

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