TubeFed Traveler: Ally Quirk
My name is Ally, I’m 23, and a year ago my life fell apart. I went from hiking, traveling, doing hot power yoga, and working full time, to being predominantly bed-bound or hospitalized. Now I get 100% of my nutrition through a hole in my abdomen that connects to my small intestine!
I have a genetic disease called Ehler’s Danlos Syndrome and it’s caused a whole bunch of wild stuff in my body, but it’s absolutely not a death sentence and I refuse to treat it like one. I am immensely privileged to have access to amazing doctors who have helped me get to where I am today, and I want to honor them and myself by living my life to the absolute fullest.
The past few months I have worked harder than I ever have in my life to regain my strength, and ultimately my independence. I’ve had setbacks, been hospitalized, struggled with my mental health, and wanted to give up countless times. But I chose to hang on and seek the beauty in life and now I want to take you all along with me in discovering just how many incredible reasons there are to keep fighting when you want to give up.
Travel and spending time in nature have been in my soul since before I could consciously understand their significance. Then I got sick and I lost the ability to do any of those things— or so I thought. But now I am in the AMAZINGLY privileged position to have appropriate healthcare that has stabilized my medical conditions for the most part. So, I’m going to do what I want.
Here’s to proving myself right and living the life I want to live right here, right now. I have no clue what my body will do in the future, how EDS might affect me, but what I do know is that right in this moment I want to enjoy every second of every day.
So welcome, to my journey of traveling with multiple chronic illnesses and a feeding tube. Here’s hoping I can convince my body to cooperate enough to let me live the life I want— with a few modifications
As far as why I’m going on this trip:
Elher’s Danlos can be progressive; meaning it can get worse. I recently spoke to my doctor and asked him if he’s worried about more of my organs being affected or failing. He told me he can’t promise me anything, but that he believes in me and that I need to go live my life NOW, exactly the way I want to. I’ve stopped waiting until the ‘timing is better’ to do the things that matter to me, because I’ve realized that no one truly knows what the future has in store. My plan for the next year is to convert a van into a camper van and travel the west coast with my dog, Sadie. I’ve had this dream for years, but kept putting it off until ‘after.’ Now. I’m making it a priority right now. No one can promise me what my body will do or what my life will look like five years, ten years, however long down the road. So I’m going to enjoy the life I have right now, and not take a second of the freedom my feeding tube has given me for granted.