Lost and Found

P.S. (in this case meaning pre-script…is that a thing? If not, it should be) I’m writing this in the middle of a bad bout of nausea, so I’m not blinded by a symptom-free day or anything like that. I really do mean what I’m saying.

I don’t know exactly when it happened, but somewhere along the way I lost some perspective.

It’s hard when I still feel nauseous every day even though I have this feeding tube. And it’s hard when I’m fighting a painful infection around that same tube. Feeling left out doesn’t help either, which is how I felt when, for the first time in 19 years, I wasn’t part of my studio’s year end dance recital, and when my Facebook feed was flooded with so many peers and classmates graduating from university with me wanting so badly to be among them. It’s hard to accept the way this disease has changed everything. And It’s hard not to feel like this thing that’s keeping me alive is simultaneously ruining my life.

All of that is hard, which makes losing perspective easy.

So time to try and find that missing perspective…

I looked in the fridge, the microwave and under the kitchen sink,

I looked in my closet, on my bookshelf, in every place I could think!

I searched under my bed and even in the trunk of my car,

I looked high and low, then I looked near and far.

Not actually, but nothing says procrastination from schoolwork like a silly rhyme. The good news, however, is that I found my missing perspective!

How? A friend of mine is facing the decision of whether or not it’s time for a feeding tube (thank you to the internet for allowing me to meet people all over the world who are struggling with the same diagnosis, or different diagnoses but the same issues, as me). I remember making that decision not too long ago, and I remember the constant turmoil and self-doubt that accompanied it, so I did my best to answer some of her questions and show her a different side to all the horror stories the internet holds. It was in doing so that I looked back on the last six months and lo and behold, I found that missing perspective!

Before I got this tube, I couldn’t even stand long enough to have a shower without nearly passing out. I ran out of breath walking up the stairs. Talking on the phone for five minutes exhausted me. I didn’t make plans and I barely left my house. I tortured myself on a daily basis trying to eat and I was under constant pressure to get enough calories.

Then when I first got this tube, I was in constant pain. I remember a little while after surgery saying that I hadn’t had a pain free day in eight weeks. I wished every single day for my tube to come out because I hated what my life had become. I desperately tried to cover it up with long, baggy clothing so that no one would know it was there. I spent over an hour a day on tube maintenance. And I still didn’t make plans because I was too overwhelmed trying to adjust to this new life.

But you know what? My life isn’t like that anymore. I regularly go for hour long walks. That constant pressure is gone. I feed anywhere and everywhere thanks to my back pack and I don’t care who sees. I’m thankful every single day that I have this tube to keep me alive. I’ve got my routine down to a science so tube maintenance takes far less time and causes far less stress. And the biggest change? I’m not afraid to make plans. Sure, there is always the stipulation that if I’m having a rough day I might have to cancel, and there is still a recovery period associated with following through on these plans, but that doesn’t matter because the thing is, I’m making them. I’m dipping my toes back into the real world.

It’s so easy to get bogged down by the day to day aspects of chronic illness and life as a tubie. And because I’m the one living it day in and day out, I am more often aware of all the hassles that come along with this new life (trust me, the hassles are many) than I am of all the opportunities that it opens up for me.

When I found that perspective, though, the bigger picture came into view. I have come so far in the last six months. No, I’m not getting my degree yet, and no, I’m not teaching dance again, but my identity has become so much more than that. Because I found that perspective, I was able to watch my best friend of 21 years graduate yesterday with nothing but happiness for her, knowing that my time will come. Because I found that perspective, I am more accepting of my limitations, working within them instead of succumbing to them.

Even though I may never be the picture of perfect health, and even though I’m sure to face many more set-backs and health hiccups in my future, I’ll never stop learning from it and I do believe I’ll be a better person for it.

So thank you, Leah, for reminding me that the bad and the ugly are accompanied by the good. Thank you for allowing me to see how my life has changed. I was looking at the ways it had changed for the worse, but now I can see the ways it has changed for the better, too.

What about you? What’s getting you down these days? If you’ve lost your perspective like I had, try and find it in the bigger picture.

I hope you find it. And I hope you realize what I did:

Life is good.

Grad 2


5 thoughts on “Lost and Found

  1. I am certain your friend appreciated whatever you had to tell them. You always give the best advice and are so so insightful.

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