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Archive for the ‘Life’ Category

Note: I wrote this blog nearly a month ago and am just now getting around to posting it because a good friend has been asking for it for ages and I thought she could use a small pick-me-up. This one’s for you, Liz…

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Little darling, it’s been a long cold lonely winter
Little darling, it feels like years since it’s been here

This winter has been one full of challenges, stresses, adaptation, loss, learning, sickness, and love. Yes, love. Without it, I’m not sure I would’ve come out as relatively unscathed on this end.

This winter, New England received more snow than it had in years. It was blizzard after blizzard. It was cold and unrelenting. Even worse, my body appeared to be taking lessons.

One thing that I’ve always prided myself on is being able to rise from just about anything and everything stronger and smiling. After December, I was petering on the edge, still smiling, but straining and struggling not to lose myself. But after the second month of medical hell, I wasn’t sure that I wasn’t going to rise.

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Author’s note: This is a journal entry I wrote the day after my 26th birthday. While much has changed since then, the core of this entry has not. Therefore, I decided to share it again, the day after my 27th birthday, because it still rings true.

Of all the people that I admire – and there are many – three repeatedly come to mind:
1. Gandhi, because he said, “be the change you wish to see in the world”;
2. Ang, our angel, who lived that change for each of her 22 years;
and
3. My mother, because she reminded me of the belief I shared with Ang and Gandhi.

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Ten years ago today, I began dating the boy who would become the man who would become my husband, my hero, my best friend.

Through all the craziness in the past ten years – whether it be medical, family-related, loss, or growing pains – there has been one constant.  Keith.  He has been firmly placed by my side through it all.  I still don’t know what other high school Junior would choose to go bravely, unfaltering, even happily along side all this, but I’m glad I found the one who would.

I had asked him why a few months ago.  Why would a teenager choose this?  He took a while to answer, but his response was the unbearable guilt he would have felt.  My first thought was guilt?!?  He stayed with me because he would have felt guilty if he hadn’t?  No, he explained.  I would have felt guilt for the rest of my life for leaving someone I loved to go through it all alone.

Keith is a child in a grown man’s body.  He likes playing video games, wearing screen tee’s and jeans, and eating Fruity Pebbles for breakfast, lunch, and dinner.  He can’t balance the books, doesn’t know how to use a calender, and has to play 20 Questions just to send a check off.  And yet, he possesses more maturity than almost any other man I know.  He was unhesitatingly there when I spent months bed-bound and home-schooled as a teenager.  He didn’t have a second thought about taking a girl in a wheelchair to Senior Prom.  He only worried about my experience for nearly 5 years of a long-distance relationship while we were in undergrad.  He calmly and compassionately cared for me when I was having seizures daily, episodes that were messy and scary.  And he confidently held my hand as we listened to the doctor’s tell us that I had a progressive and incurable neuromuscular disease.  He’s always there.

I found out recently that not everyone considers his or her spouse as a “best friend.” This shocked me. It makes me incredibly sad. Sure, there’s still love and loyalty that keep those relationships together (as far as I know), but I can’t imagine not having my best friend there with me through it all. I don’t know whether we could have made it through those difficult times without our friendship. Love and loyalty can only get you so far; being able to enjoy and share our time together has made all the difference. We can play board games one-on-one until the pieces wear out. We can goof and giggle through 10-hour road trips. We can talk until 3 am. Or just sit and be. Silently. It doesn’t matter what we do or where we are as long as we’re together.

Weeks before we married nearly 3 years ago, a friend joked that we had already done the whole “for better or for worse, for richer or for poorer, in sickness and in health” deal. And we had. Well, we had done the “for poorer” and “in sickness” parts, at least. So I wonder, would things even out and be for worse if we had health and riches? Because right now, things are so good and so strong between us that I can’t imagine a “better.” I honestly can’t imagine being happier. I can’t imagine a life without him.

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[This is the fourth and final part of my No Longer Starving series, a belated editorial for Feeding Tube Awareness Week. As I noted before, life got in the way during the actual awareness week so I’m raising awareness on my own schedule.]

Phew! Ladies and gentlemen, we’ve made it through the world of tubies! I gave you an update on my own situation, a small glossary of terms commonly used in the tubie world, and an overview on types of tubies (and the corresponding who, what, where, when, and why of each). And now I’m to the most important part: the impact. The “so what?” So how is life with a tubie different? Well, everything is different, but nothing has really changed. Confusing? Obviously, as a person, I haven’t changed, but how I interact with the world has. Some days that change seems insurmountable, but on other days, it doesn’t make a dent. Most days, however, it’s somewhere in between.

I know I’m not the only one who feels like this. And maybe it changes, becomes less (or possibly more?) difficult as the years pass. I don’t know. I’m not there yet. But I do know that the good that comes with it (at least in my case) far outweighs the bad.

Because this series has been full of my words (and I know listening to the same person drone on can get old), I wanted to share the words of my friends who have been so helpful with this process. I asked them what they want people to know about feeding tubes and the people who have them.  Here are some of the responses:

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[This is Part 3 of my No Longer Starving series, a belated editorial for Feeding Tube Awareness Week. As I noted before, life got in the way during the actual awareness week so I’m raising awareness on my own schedule.]

Today’s blog is brought to you by the Letter “W.” Yep, we’re going to talk about the Who, What, Where, When, and ever-important Why involved in the use feeding tubes. There are tons of types tubes and even more reasons why an individual might get one. So I’m going to give you and general overview of the primary classes of tubes. I know everyone who has a tube, or “tubie,” has gotten those looks and questions. Truth is: most people don’t see tubes everyday; they may be curious, weirded out, or even afraid of them. When I first got my GJ tube, my nephew – the sweetest, most empathetic kid you’ll meet – was so incredibly gentle with me. I think he thought he was going to break me by giving me a hug. It took him a while to warm up to it and we talked a ton about it, but I’ve got those bear hugs back.

Tubes aren’t something to be scared of. Tubes don’t necessarily equate to loss of freedom and worsening of disease. In fact, feeding tubes prevent the progression of disease! And I have more freedom with my feeds and infusions than I have had in years. There are very few people that I know with tubies who don’t feel the same.

So let’s get rid of all the stigmas attached to tubes and take a journey with some of my incredible friends who just happen to also have tubes…

I want to issue the same warning I did yesterday: there are some pictures in this post of medical interventions; if this makes you uncomfortable, I advise you not to read on! 🙂

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[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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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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