Round Here. . .
One thing that's hard about Congenital Heart Disease is that it is a "silent” disease. No one really knows what's going on unless they pick out the little clues: the scar, the exhaustion, the shortness of breath, etc. This makes it hard for others to understand what it's like to deal with. No one really “gets it” when you are having a bad day. People can't fathom what living with chronic illness is like because they can't quantify it or qualify it.
One of my favorite coping mechanisms for life in general is listening to music; I love music in general, but one day I was in a rough place mentally (actually, I was dealing with preparing for a difficult procedure), and I heard one of my favorite songs in a WHOLE new light. It has changed my view on things as well as helping me get a better grasp on what it's like to live with and grow up with chronic and invisible illness. It has also given me an easier way to explain things to others in a more tangible way. (it's amazing what a little perspective will give you) The song is "Round Here" by the Counting Crows, and parts of the song really hit home…
“Step out the front door like a ghost into the fog where no one notices the contrast of white on white.”
When you have an invisible chronic illness going on no one gets it: the only indication is the scar, inhaler, etc It's not tangible to the outside world, because it's not visible, therefore, it's hard to quantify.
“I walk in the air between the rain through myself and back again Where? I don’t know” while I’m doing my daily routine, especially when I am having a rough day I’m “in my head” a lot trying to deal with the mental/emotional part of living with chronic/invisible illnesses, I'm putting a face on to just get by. It hardly ever gets me anywhere, but it's definitely a journey mentally and physically.
“Round here we always stand up straight Round here something radiates”
Again, a picture of normalcy, busy doing day to day things, conforming to the norm and trying to give off positive vibes, because if you aren't positive, people around you tend to feel sorry for you.
“Round here we’re carving out our names Round here we all look the same Round here we talk just like lions But we sacrifice like lambs” back then I was busy at school and work trying to continue with the semester, trying to prepare for the procedure I was going to have mentally, and getting ready to take my boards; now I’m day to day at work trying to become the best I can be trying to make a living. I look no different than any of my classmates and co-workers, and therefore I am no different in most people's eyes. It's hard to be understood when your symptoms aren't visible. If symptoms were visible, I'd have a hell of a lot of "well, why are you still trying to work" comments. My co-workers may understand clinically some of what I am dealing with, they know what SVT or Ventricular Bigeminy looks like, they've had patients who were short of breath but they don't get it, they don't know how it feels, they don't see how it applies to day to day life, and how it affects my performance and my ability to work. I go to work every day, I advocate for my patients' best interests. I try my hardest to be the best I can be, but sometimes I just can’t be that all the time; sometimes I just need to break down and cry.
"Round here hey man we got lots of time Round here we’re never sent to bed early and nobody makes us wait Round here we stay up very, very, very, very late"
Chronic illness can make you feel alone at times, especially when it’s silent, this lyric represents to me feeling alone in the work environment, but it also represents me feeling alone in having to take over my healthcare no one’s running that show any more. I have had to learn to advocate for myself, I've had to learn the in's and out's of what’s going on with my body and how to deal with it. No one's going to be there to tell me to take my meds, or when to go to the doctors, but on the other side of that, I'm the one who has to buck up and deal with the consequences when I've forgotten my meds, or missed appointments, or not gotten to the doctors when things aren't right.
“See i'm under the gun round here oh man i said i'm under the gun round here and i can't see nothing, nothing round here.”
I’m under a lot of pressure day to day, needless to say, sometimes it’s hard to get perspective, sometimes it’s hard to see the forest for the trees, but sometimes it helps a lot when I’m not feeling well to be really busy, because I can put my head down and just get it done, but that can lead to not taking care of myself, forgetting to take meds, not getting enough sleep, not listening to my body, etc.
It's amazing how preparing for a big undertaking medically can put you in a frame of mind to see things differently. It's also amazing how your mind can give you a perspective like this to help you through a tough time. To this day I listen to this song, and it speaks to me.
I think the key to living with chronic and invisible illnesses and living well with them is to find coping mechanisms, to reach out and connect with those who you can relate to. Listen to music, have fun, listen to your body, and most of all: Live life!!! Life has strange ways of teaching us lessons, all we have to do is be open and receptive to them. This is one of the biggest life lessons I have learned so far
"One Life, One World, One Chance, and I Don't Wanna Wait, Wait!!!"
About Morgan and her Congenital Heart Disease:
Morgan was born with several defects in the structure of her heart. She has had two open heart surgeries in early childhood, and most recently, an ablation to try to control some arrhythmia she has developed. Recently she has been diagnosed with a condition called cardiomyopathy, which is causing her heart to fail, and she’s been on a regimen to control her symptoms, and improve her heart's function for a period of time. Learn more about Morgan here.