Tuesday, December 24, 2013

Tubie-Torials: Foodless Holidays

Hmm...welp. May be a little late for a post such as this to most for this year, but I do still hope you can find comfort in this anyway, being Christmas Eve to those who celebrate (I'm not sure where we are as far as the rest of the holidays. I am not trying to be insensitive to others and I'm going to shut up right about...now) in how to still make the most of the holiday season for those who are unable to eat for any reason and are instead on enteral or parenteral feedings for their sole source nutrition.


Oh! You thought I was going to skip this one? Just because in American society (I'm even along the "Bible belt...and those people know how to eat, let me tell you. Gluttony passes under the radar for this little holiday for some, just please remember the true supposed reason for why we celebrate in the first place...) this holiday is all about food.

For every single one of these holidays I'm going to encourage you to make the holiday your own. So what if every one else you know is aching over the fact the the stuffing isn't like Grandma's (or uncle Henry...sometimes the weird bachelor uncle can make a pretty impressive random dish...)? What does Thanksgiving mean to you?

A couple years ago, when I was able to walk up to the park safely, I took pictures of the trees turning, of the setting sun setting the water ablaze. I really, really wish that that camera could have done justice to the sight I saw before me, but this photo I took will just have to do. As I walked the park, being extremely careful of the huge flock of geese about me (they're very territorial...I'd advise you not to stand still among them unless you just want to know what it feels like to be hissed at then bitten by a a bunch of" pissed off crazy birds", as I have come to affectionately call them), I counted my blessings. That year, I could still count on improving health without question. I had a G/J tube, was tolerating Peptamen 1.5 (formula name) pretty well, and was happily musing over the summer that never went away about how all the more enjoyable it was to still be walking...in the park...in November...without a coat. Or even a jacket. The pullover hoodie was enough.

As my foot falls continued, I counted my blessings...and there was a lot to be thankful for. My friends were near, as well as family, I had a brand new apartment that was neatly decorated that contained staff that were at the time not totally burnt out on their jobs and still enjoyed sharing laughter with my crazy self.

And even in this season now, I have a lot to be thankful for.

I am alive...even if not well...I am alive and enjoying being so.

In short: Thanksgiving is not about food. At all. Thanksgiving is about being...thankful. I am not going to cram that thought into you. You do not have to accept that at all. You are free to be angry in this season and I daresay without shame. Yup, just said that. It's healthy to mourn and grieve and I am not one to judge or chastise that. However, I caution you about becoming bitter. I hope that eventually (if you haven't already) to make Thanksgiving your own. Take a camera and visit a park (now I roll...and with a manual wheelchair alongside people who still stick around amidst all the crazy), volunteer at a soup kitchen, or create crafts to decorate the family table. But in the correct timing, I ask...please remember to be thankful. There is not a single case I can think of the warrants endless bouts of self pity...though of course, if that is your choice, that is also your right.


(an aside, this bear's name is Sunny...and Sunny is a Tubie Friend...I will be doing a major plug in for who these people are, but for right now all you need to know if that Sunny is my Tubie friend, he also has a G tube and a port access, and he was a true gift and he is waiting for me at home. I didn't want him to be saturated in anything gross, but he is tagging along next time...he came just in time for Christmas this year).

Any winter holiday (in all faiths) represent something extremely important (even if you practice astrology, as the folklore is the exact same as Christmas is when you get into the down and dirty). And central to all living beings is celebrating amongst us all is relishing in what nourishes most: food.

Except of course if you are only allowed tube feedings or nutrition via central line (as I sit here right now receiving the last of a bag on parenteral nutrition while also starting continuous feedings as well via G tube, as my doctor is desperate to keep everything going as far as it can be). If that is the case, what do you have left.

Everything. Except the food.

Guys, it isn't that hard. We glorify food as well as we admonish it for its ability to pack on pounds...which is simply insane. If anything at all, those of us who cannot eat have it pretty well made. We don't participate in the crazy making in the effort to find a way to bake a cholesterol free cake for aunt Ethel or outsmart uncle Henry with that random stuffing that keeps showing up and silently fume over how it's gobbled up so quickly even in absence of a turkey.

However, that line of thinking did take years for me to cultivate. The first Christmas was just...horrid. I cried the day before, during the festivities, and for the following week. I was also caught up in the thought of being deprived that I totally missed the point all together.

I am a Christ follower (I don't claim "Christianity", as the two are no longer one and the same), so to me Christmas is about the birth of what I claim to be the Christ. Now, was Jesus born in December? No. However, this is the time of year we celebrate (and borrowed from the holiday yule, but that's comparing apples to oranges and I am going to stop before I stuff my whole foot in my mouth...) all the same.

It is when my friends and I exchange Christmas cards.

It is when my family again comes together.

It is when all of us celebrate togetherness, or the birth of the Son of God incarnate (we have atheists in my family, and I will say that is perfectly fine. I will not brow beat a treasured person in my life for not sharing my beliefs as I think it is abusive), or again being thankful.

Food is not the Holy Grail in this holiday, despite what marketing has told you. You have again the choice as to whether to buy that or not. And in my own journey, I look at the decorations of Christmas lights and Christmas cookies as all the same. I wouldn't eat a string of Christmas lights because they are inedible to me...and for me...technically, so is the cookie.

In short: Again, we run up against the right to be grateful for what we have, as well as the right to mourn what we don't. I will not sit here and make you feel bad for the case as to either. But I will warn you about being pushed into bitterness and hope you don't cross that line. You will miss what is important, but that is your call to make. Spend time with those you love (and who love you all the same), or spend it in prayer. Give of yourself freely, and don't dwell on what you are unable to have. I don't know for any one person if tubes and lines will be a forever thing or not. However I do know this from my own walk: you can miss everything this season has to offer, or partake...even if you cannot eat. You will need to accept that food will not make or break your season. No one had the idyllic childhood or adulthood irregardless of food. So I simply put out there (and is subject to debate):  please do not spoil your appetite for togetherness with the thought of food. You'll miss the brightly lit forest for the trees.

Holidays Of  Appreciation: Valentine's, Birthdays, and all the other Hallmark stuff....

These are still important. Are all of them important? No. Now, Valentine's is up for debate. If you are a female, and you aren't able to eat, I really hope no one send you a box of chocolates. I really hope others in your life will be considerate enough to send flowers (ask for something less hardy, and less likely to aggravate allergies like Japanese ornamental flowers that do not give off a strong scent. Unless you are my mother and can keep anything under the sun alive somehow, merely appreciate the momentary beauty and the thought. It will last longer than Whitman's sampler or whatever people eat on Valentine's day), a card, or a stuffed bear...along those lines.

 Same with your birthday, if you choose to celebrate. I know many do not, but please know that  you are special to someone out there in your life. The best thing for yourself is to let someone treat you to something of your liking.

And finally: maybe this didn't help you at all. Maybe you have tried all this and still continue to struggle.

Know what? That is 100% ok. I promise! you aren't alone at all. This is not an easy adjustment for you, and for those around.

But I can also give you this same exact promise:

One day, if you let it...things will get easier.

If you are unable to draw from the experiences of others...create your own.

With love,


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