I originally published this on my main site – laurenbersaglio.com – but wanted to share it here, too…
Those of you who are close to me or who work with me know there has been a lot going on over the past few months. I moved from there to there and then had to move from there to here. That was fun. But more imposing than the moves has been the difficulties I’ve had with health.
I haven’t talked about it publicly because I’m never sure just how personal I’m supposed to get in a blog. I also find with some things I need time to process before writing, rather than the other way around.
In the grandest scheme of things, all is well. However, at the same time all is not well.
I don’t want to sound dramatic; it’s more that I find when discussing this I need to keep at arm’s length. Probably because there is actually more emotion involved than sometimes I care to admit.
A few weeks back I was watching the Backstreet Boys special on Netflix (morbid curiosity I suppose? Don’t judge). And I was shocked, but not in the way I was expecting.
You know how sometimes you go through something and it seems like nobody really gets it? Like no one you know can relate? And no matter how hard you try to explain to people, and how much they sympathize, you still don’t get that connection of knowing, of understanding.
It’s the loneliest feeling.
Brian Littrell is a member of the Backstreet Boys, and in the Netflix documentary, he speaks candidly about being diagnosed with Dystonia–a tightening of the muscles around the vocal cords, which causes the vocal cords not to work correctly. He says, “It’s hard for me to talk about…I try really hard to be optimistic about it…but I’m faced with it every day…it’s frustrating because i just want to be me…and i want to have the carefree attitude that i had years ago.”
I never thought I’d tear up during this special. But I’d finally found my equal.
See, I haven’t been diagnosed with Dystonia, but I have been diagnosed with something similar. The medical term is Achalasia, and it effects only 1 in every 100,000 to 200,000 people. And it is less common in women. Not linked to the ability to talk or sing, Achalasia is linked to the ability to eat and swallow. It is defined as the chronic tightening of the Lower Esophageal Sphincter (LES). Simply put, when you swallow, the esophagus pushes food down, and the LES relaxes and opens to allow food to pass down into the stomach. When I swallow, this does not happen. Instead, my LES remains constricted, allowing little to no passageway for food or sometimes even liquids.
At one point, Littrell said of his ability to speak and sing,
“We take it for granted because it’s something that’s a given. For me, it’s not a given right now. It comes and goes.”
This is true for me of my ability to eat and swallow.
Eating has now become a burden for me. I can’t say I had ever taken it for granted, though. No one who as recovered from an eating disorder ever fully takes their ability to eat for granted. But I did take my ability to swallow normally for granted a bit. As well as my ability to eat without thinking.
It has been years since the thought of eating out with friends has brought on anxiety, since eating has become a chore that I dread rather than something I enjoy. I woke up one day and my life was mimicking the way it was in years passed. Years I’d sooner have forgotten.
Though on a psychological level everything was different, on a physical level it appeared the same.
It’s hard to escape the irony:
Before my body wanted to eat but my mind wouldn’t let me. Now, my mind wants desperately to feed me, but my body won’t allow it.
But before I wander too far down that path, I will allow this post to take a turn.
I don’t want anyone to feel sorry for me; I am trying my best to not feel sorry for myself (somedays this is an easier task than others). The truth is, I know about reality. I understand about life. And I am fortunate. I realize there are many with diagnosis equal to and often much worse than my own. However, I also realize there are diagnosis more bearable as well. What does an ingrown toenail hold up against a terminal diagnosis? What does an eating impediment hold up against an eating disorder?
When my mind wanders this way, I can only think of Charlie,
“I think that if I ever have kids, and they are upset, I won’t tell them that people are starving in China or anything like that because it wouldn’t change the fact that they were upset. And even if somebody else has it much worse, that doesn’t really change the fact that you have what you have.” (The Perks of Being a Wallflower)
Perspective is important, but gentleness towards self is, too.
I am not sick, I am not dying. I have the ability to lead a full and satisfying life. But somedays this involves being able to only eat liquids and mush. Somedays I am never full. But other days, I can enjoy pizza and soda and I almost feel normal again.
I cannot give in.
By the time I was diagnosed, I had spoken with two different specialists, a medical professional, and read multiple articles by those in the same field. The consensus is this: There is no cure. You can go in for surgery, they can slice your LES open, and then as the scar tissue builds up and creates another blockage, they can repeat the process. Or if you are lucky, the balloon dilation will do the trick; but hopefully you won’t need to repeat it because your esophagus could collapse in.
At the end of the day, though, despite whatever procedures you endure, there ultimately is no cure. You will never eat like a normal human being again.
But this I will not accept.
Though there are days I want to throw in the towel, there are mealtimes spent sobbing on the bathroom floor, choking on food rather than eating it, and there are nights when I don’t want to go to bed because I know I will just face chronic coughing and exhaustion, there are also days filled with hope, with hints of healing–and those are the days I will focus on and cling to.
The medical field told me there was no cure; but alternative fields are on their way to proving this wrong.
No, I did not sign up for surgery. Instead, I did my research and I’ve developed a Plan A, and this is it:
- Acupuncture (to relieve the nerves clamping the LES tight)
- Visceral Massage (manipulating the muscles linked to internal organs)
- Supplements (Magnesium and Vitamin B to name a couple)
- Stress Management (although not a cause stress is a huge contributing factor to flare ups)
After only a month of these treatments, my swallowing–though not comparable to a “normal” person–was hardly a concern.
But then an unexpected move, combined with landlord stress, and work overwhelm-ment and I feel as though I’m back to stage 1.
However, how I feel and how I am are not always the same thing. The truth is I can never go back to stage 1, because at stage 1 I felt no hope. At stage 1 there was no Plan A. At stage 1 I was doomed to a life of either eating dysfunction or ongoing surgery.
The difference between today and 2 months ago is not how I feel physically, but how I feel in every other way.
I will “beat” this by not letting it beat me.
And if that means ultimately I have the surgery, or they use a balloon to “pop” my LES back open, so be it. Maybe I will have to endure the side effects, or maybe I’ll be one of the success stories. Either way, it will be on my terms, not theirs.
But for now I am sticking with my Plan A, because at the end of the day, as woman at a health store once told me: only you can fix you.
Only I can fix me. And that’s exactly what I intend to do.
But please bear with me if I fall a bit behind, disappear for a few weeks, or excuse myself to spend a weekend watching Downton Abby.
If you are reading this and have experienced this condition, please comment below and share what’s worked for you. Also, here is the most hopeful (and helpful) piece I’ve read on Achalasia: http://www.remedyspot.com/content/topic/1632325-non-invasive-treatment-for-achalasia-memo