How I Am Still Breathing

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I felt the cold sweat racing down my back. I felt like I was drowning, but there was no water around. By this point in my life, I had experienced anaphylaxis without exaggeration, about 100 times.

However, this reaction was different… so very different was this day: January 23, 2017. Within an interval of four hours, I’d administered three EpiPens and I was surprised the powerful drug epinephrine had not yet stopped my heart. I grasped my grandmother’s hand, providing myself with something to focus on. I knew if I became unconscious, I would die.

As a child, my first experience with death was when I was five and my great aunt died. I was utterly and completely petrified by her death. Simply mentioning her name, brought forth the unforgettable image: her body rotting, with her skin blackening and separating as it slid off her body, bugs crawling over and inside of her. I can clearly remember feeling the bugs crawl on my skin despite being above ground.

All these years later, when I truly was so close to death, I no longer thought of death as a terrible, unfortunate occurrence. I did not picture bugs, or rotting, but I pictured peace. The transpiring events had allotted me a choice.

My two choices were:
A.) Call 911.
B.) Continue to the hospital even though you’ll be dead by the time you arrive.

I made the greatest decision of my life within the span of seconds. Our car pulled over to the side of the highway and my grandmother dialed 911. I had chosen to live.

When I’m in pain, when I experienced headaches due asphyxia from severe stenosis in my cranial vasculature, when things got difficult, when things become difficult, I wonder why I chose in that moment, of all moments, to fight.

At this point in my life I had utterly abandoned all hope. I had abandoned hope because anaphylaxis on a monthly basis, brain stenosis, immunodeficiency, dysautonomia, dislocations, Ehlers-Danlos syndrome, 21 surgeries, a continual decline in my quality of life, along with so many other things had pressed the life out of me as a cider press drains an apple until there is nothing remaining. Joy and happiness had vanished and frustration and despair stole their rightful place.

I was frustrated by many things, but in the end this frustration proved meaningless. Because despite the misery I felt, I did not want peace, I wasn’t ready for peace.

When the paramedics arrived my oxygenation rested at 72%, but gradually improved over the next twenty minutes. I slowly felt life filling my body and although my throat was as the EMT worded it “looks like she never used the Epi.” I was no longer in death’s company, and I began to miss this friend, who had taught me a priceless lesson without speaking or acting. I chose to live and in doing so, I filled my life with inspiration, joy and gratitude.

I am inspired by the concept that we will never know what the next day will bring. I am filled with joy because the beautiful experiences life brings have not yet ceased. I am grateful because I know now I have enough love for life that I chose life rather than death and I would choose life again.

I have found myself wholly reluctant to question what my purpose in this world is. Perhaps it is because of experiences like these. Purpose is a ghost, which has never ceased hunting my conscience. I am ashamed to admit the fact that I fear the future, but I do. Fear is a natural emotion. As natural as a mother bird regurgitating half digested insects into it’s babies mouth. I understand that with my many health conditions I could die tomorrow, but should I allow this to impinge on my dreams?

Truthfully I don’t think of myself as dying and I don’t want anyone to think of me in this way. I do not wake up every morning and wonder if this new day could be my last, despite the reality being that it could. Life is far too beautiful to burden oneself with such thoughts.

A long time ago I allowed my illness to define me.

My many syndromes locked me away in a cold, dark and empty jail cell. The type of jail cell one would see in pirates of the Caribbean, the type you dread most. I walked into this cell, locked myself away and sat in the corner alone. I saw my illnesses as the key… The only way to be free of this prison was to be cured. I sat in my jail cell and wallowed in my self-pity. All the while the Earth was spinning around on its axis and making another trip around the sun. The world does not stop when you want the world to stop. The world will never stop. I may oscillate with a different frequency and I may be majorly out of phase, but I am still in this world. It was my freshman year of high school when the realization hit me like a ton of bricks: I can stay in bed with a migraine, or I can live with a migraine.

Although I suffer a great amount, I also live a great amount. If I die tomorrow, I will never know and so why should I walk around carrying the heavy burden of death when in the end it’ll never matter to me?

My purpose is unclear, but my goal remains consistent: to live as if I never knew.

I pretend to believe my struggles are normal. I pretend that my quality of life isn’t at a disadvantage, even though it clearly is. I do what I want, and I do it when I want to. I cannot fear my illness and how it will affect my future because illness is something that will never vanish from my life. I must make bold decisions regarding surgeries and treatments. I have to disregard the future, not because I may not have one, but because in such a complicated life, the bigger picture is an absolute mess and the only sensible pieces are those small aspects, which remain salvageable.

My aim is to conquer this life. I am not the apple, but I am the cider press. On miserable days I remind myself of the beautiful sunsets and sunrises. I remind myself of the rain hitting my face on an unbearably hot summer’s day. I remind myself of the shades of orange the leaves turn in autumn. I remind myself of these things and I am happy. Because I am here to experience the world spinning around its axis and making another trip around the sun.

About the Author: Karen Richards is a high school student living with multiple rare diseases including: Connective tissue disorder of unknown origin, Dysautonomia, Complex Regional Pain Syndrome, cranial vascular insufficiency due to stenosis, immunodeficiency, mast cell activation disorder and mitochondrial dysfunction. However you will soon learn this long list does not speak much for Karen. Karen’s passions are what speak loudest in her articles. She is passionate about advocating for the chronic illness community, and writing. Karen loves to spend her free time writing and hopes to share love and joy with all readers. Karen is the author of the children’s book: When I close my eyes. She also manages the website sweetlemonpies.com.


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1 COMMENT

  1. As always Karen, you articulate how we all feel living with EDS, dysautonomia, MCAS, and the rest of our alphabet soup diagonoses….love you lots!

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