The room was quietwell, as quiet as an emergency room can be.
I had a room to myself.
My monitor beeped to each beat of my heart.
My white friend left a few minutes prior to nurse her newborn.
I felt accomplished with a heart rate of 89.
I was waiting for tests to see if I had a heart attack or worse.
Akilah Cadet, DHSc, MPH, is a diversity educator and activist who holds a Bachelor of Science in Health Education in Community Based Public Health, a Master of Public Health, and a Doctorate of Health Sciences in Leadership and Organizational Behavior.
Instagram distracted me from the sinking feeling I had and loneliness.
A few more minutes passed.
Out of nowhere, my breath escaped me.
My chest riled in pain.
The peaceful beep from the heart monitor went faster and faster.
At best, I would go into cardiac arrest and be shocked back to life.
I was confused as Instagram is not thrilling enough to get me excited.
My heart rate was just under control and now out of control.
No one came in to respond to the alert.
Akilah Cadet, DHSc, MPH, is a diversity educator and activist who holds a Bachelor of Science in Health Education in Community Based Public Health, a Master of Public Health, and a Doctorate of Health Sciences in Leadership and Organizational Behavior.
I thought I was dying, and I was alone.
I found what little breath I had left in my body and yelled for help.
An EMT came into my room very casually.
He did not ask a question or attend to mehe just stood in the doorway.
Get someone… was all I could say.
I repeated this until the ER doctor came into the room with an ultrasound machine.
My body thinks its having a heart attack every single day.
You must be scared to be here all alone?
she said in a somehow sweet and condescending tone.
Something is wrong with my heart, I said softly with less effort than before.
My heart rate was over 200 beats per minute.
The doctor placed the cold jelly on my chest and said, Must be anxiety.
I see your friend left.
With the episode coming to an end, I said proudly, My name is Dr. Akilah Cadet.
I am your peer.
I do not have anxiety.
I had an irregular heart rate.
If you took the time to review my chart, you would see my cardiovascular history.
you gotta consult with the on-call cardiologist or contact mine.
Her entire demeanor changed.
SVT was a side effect of a medication I was on to treat inflammation around my heart.
I stopped it immediately and saw my cardiologist the next day.
Its Amazing How Its All Connected.
Fun fact: My heart spasmed several times writing this essay.
Its been seven years since my first flutter.
My body thinks its having a heart attack every single day.
I live in chronic pain on my left side from my jaw down to my arm.
I have regular shortness of breath, weakness on my left side, and night sweats.
Coronary artery spasms would be the first of many diagnoses.
Many other things were not normal for me.
My body was doing its own thing, and I just did what I could to keep up.
Bruises would always pop up on my body.
Deep purple and blue.
I would have no idea where I would get them from.
An undergrad athlete told me to put Vicks VapoRub on my bruises and they would disappear faster.
Unaware, I would always say, I use Oil of Olay In-Shower Body Lotion.
The newest product on the market was clearly doin its thang, unlike my left knee.
Dr. Nurre diagnosed me with Ehlers-Danlos Syndrome.
My knees hyperextended just like my elbows.
And I bent down and touched the floor without bending my knees.
But within a few minutes, I knew I had a rare disease that would complicate almost everything.
Why my knee dislocation and ankle injuries werent from playing basketball.
The times I would travel and end up with an urgent care visit or athletic bandage around a joint.
My night sweats, low blood pressure, random hives, and bruises all made sense now.
But for me, it was, I love EDS.
I mean, I dont, but you get the picture.
My life is forever changed.
This also means dealing with a health-care system that picks and chooses when my life is of value.
It could improve over time or get worse.
The pain will remain.
A big part of living with EDS is the fear.
Will something subluxate or dislocate while I am walking or picking something up?
Its the fear of a new comorbidity resulting in a new doctor or ER doctor not believing me.
With EDS, anything can go wrong at any moment in time.
I can break out in hives for no reason.
I can have overwhelmingly large amounts of sadness because of the unknown that EDS brings.
Its the taxing calculation of whether I have enough energy to do something.
Can I go to that dinner?
Can I make it through the wedding?
Even things that bring me joy, like dancing, I will pay for within hours.
I have to choose to not dance, or I have to plan for the pain.
EDS life is hard and misunderstood.
Most people have no idea what collagen is outside of something to make your skin better.
At any moment, I can drop something because my hands will give out.
I stay away from washing dishes as much as possible because Ive cut myself numerous times.
I have to be careful to prevent bruising from opening cardboard boxes.
This also means dealing with a health-care system that picks and chooses when my life is of value.
The ER is also a place of trauma for me.
Black people experience disproportionate health care.
Our pain levels are ignored.
The health-care system polices our bodies.
Providers are taught stereotypes that make our lives of less value than white peoples.
I have to fight for my life while fighting for my life.
…
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