“I think, these symptoms are just what we will always be dealing with. Motility is the issue, Mitochondrial disease is the cause. We can’t fix either”. That was my doctors closing statement at my last appointment. They are words that I have been waiting for roughly 20 years to hear; a verbal confirmation of what I already knew to be the truth. And yet, in that moment I felt like I had been kicked square in the teeth.
My medical history is extensive. I like to say that I came out special, and my mom should have asked for refund right then and there. Lucky for me, she decided to hang on to the baby born with a large cyst over her eye and tear ducts that drained non stop until I had tubes placed at six months. Both are common, benign, issues; but in my case it was just the beginning. I was in and out of doctors offices and hospitals for testing throughout much of my childhood. I had a kidney issue no one could quite figure out. When I hit puberty, I grew in to horrible allergies. At 14 I was diagnosed with my first ulcer, as well as, “the youngest case” of Barret’s Esophagus my doctor had ever seen. At 21- Gastroparesis, Chronic Esophagitis, and Eosinophilic Esophagitis, 23-Poly Cystic Ovarian Syndrome, 24-overactive gallbladder with stones, 25-Chronic sinusitis/tonsillitis, 28- Sphincter of Oddi Dysfunction, 31- Superior Mesenteric Artery Syndrome, 32- Mitochondrial disease (specifically Glycogen Storage Disease 12), 33- Small Intestine Bacterial Overgrowth (SIBO). And those are just the big ticket items, my friends.
As you can see, I am no stranger to doctors, hospitals, and all the fun things that come along with them. I have had 13 major surgical procedures, 8 Endoscopes, 5 ERCP’s, countless cat scans, MRI’s, x-rays, and blood draws. All in an effort to diagnose and correct whatever might be “wrong” with me. And yet, here I am, 33 years old sitting in front of the doctor I first saw at the tender age of 14; having him finally admit there is no “fixing” me.
I’d be lying if I said that I handled this news “well”. I did not. I was shaking and sweating and flustered. I wanted to laugh and cry hysterically at the same time. I wanted him to be wrong. I wanted to go back and find the point that things could have been changed, to the point where I was still fixable. I wanted to scream, loudly, and at anyone who would listen to me. But most of all, I wanted to know, how does one proceed from here.
Well, I wasn’t sure, so I just let it be. I didn’t think about it, I didn’t want to talk about it, I didn’t want to try and find some positive silver lining to being told “feeling like crap is likely the best you’ll ever feel”. Then, it was Rare Disease Day and I found myself looking through pictures and posts that have related to me medical odyssey. I felt a strange obligation to post something, to make it profound, to find my new starting point and build upon it. Que one of my favorite quotes of all time “I, myself, am entirely made of flaws, stitched together with good intentions”- Augusten Burroughs. As I was sitting there, looking at the physical evidence of a quest to find a cure I had an epiphany. I am the living embodiment of this quote. My body is flawed, every mitochondrion in every cell of my body, is flawed. I have spent 2/3 of my life getting poked, prodded, tested, radiated, cut wide open and stitched back together with nothing but the best of intentions. And in that moment, I realized it was enough. My efforts were enough. My families and friends’ efforts were enough. And perhaps most importantly, my doctors efforts were more than enough.
I have been asked on countless occasions “So all of it was for nothing?”, “that surgery didn’t help?”, “what do you mean they don’t know what’s wrong?”, “what do you mean there is no cure?”. Well folks, when you are medically complex, it comes with the territory. I have had brilliant doctors tell me “you’re a conundrum, wrapped in a riddle”, break up with me because they can no longer help me, and tell me with such confidence that they will “fix me” only to have their confidence shattered. My most recent surgeon; a wonderful, wonderful man, openly admitted that he lost countless hours of sleep over my case. A case he was convinced would be “fixed” with one surgery, then all my problems would be solved. Boy, was he wrong, and boy was it hard to watch his confidence wane throughout the time under his care. Should I be mad about it? Maybe. Am I? Absolutely not!
And here’s why? He had nothing but the best of intentions in his efforts to improve my quality of life. He went above and beyond researching, discussing with colleagues, and reaching out to all sorts of other professionals to help me. He didn’t have to do that. He could have told me, at any point in treating me, that he could no longer help me. But instead, he set his ego aside and asked for help to get me the best doctors/care moving forward. And I can say this about every single doctor I have had the pleasure of encountering during my journey. So no, I am not mad. I have not done any of this “for nothing”. What I have lived through has made me the person that I am today. It influences how I view the world, and how I choose to live within it. These doctors have played an active role in shaping the person that I am, and I have zero issue with it. They tried. They are human beings who tried their best to fix the unfixable. Their good intentions are more than enough for me.
I am a 33 year old woman, and the way that I feel today is likely the best I will ever feel. That’s a daunting thought, terrifying some days and overwhelming on other days. And that is ok. I didn’t think I would ever find the answer as to how to move forward from here, but I think I have it. Live with good intentions. Take the good days and do what you can, take the bad days and appreciate how great the good days are by comparison. Remember that every doctor you come across is a human being just trying their best to treat conditions they may not fully understand. Remind them that while they were trained to look for horses when they hear hoof beats, you are in fact the odd Zebra. I am going to wear these scars like a badge of honor, because they are evidence that I did everything in my power to get better. Life takes guts, ladies and gents, I may be down a few feet in that department, but I still have fight to give. And I intend to fight for each good day that I have. This is my life, and the only thing I have control over is the intention with which I live it.
Chronically Sarcastic 