Terminal, Terrified, and Traumatized.

Reactive is the exact word to describe my current self; a volcanic emotional eruption after years of collision, change, pressure, politics, and overall what gradually morphs into traumatic stress. Many would define the results after a life changing — or life threatening event, but what had I experienced? Just a “bad” diagnosis and a few pills honestly. Until almost six years later when I felt comparably to unraveling like a cheap sweater, and finally diagnosed with severe Post Traumatic Stress Disorder.

Only eighteen at the time of my Pulmonary Hypertension diagnosis, I did not fully comprehend what would happen to not only my body, but my entire existence. In those beginning phases I showed up to a vastly overwhelming amount of appointments, collected pills, listened to results, and attempted to force myself into continuing a life that at the time felt right for me. I believed that I would do what everyone else was doing; find a career, get married, have kids, and just endure within the definition of normal. I took the “your disease is terminal, you can’t have kids, your life will forever change” and shoved it to a deep dark corner titled denial. In it’s place I painted a brave portrait of a “strong, happy, chronically ill human” to obliterate my reality’s truth. I received quite a bit of compliments on doing so too utterly convincing my conscious and others that I was truly happy, and most of all okay.

I don’t even know how it happened, or when it happened. It was a daily transition into this anger, grief, and outraged person that I harvested a special hatred for. Deeply I felt compelled and pulled to be another individual who others, including myself, did not understand. Unpredictability, obsessed, overwhelming sad compiled with anger — Why was this happening? Despair and outrage will bring you to your knees only to find a crevice of that darkened place that only you thought erasable. The truth is unpalatable, alienating, and disturbing. Underneath it’s crushing embrace I collapsed into this final form of who I had no choice in becoming — I just am.

In simplest of terms, I am being held hostage by my own brain to be kept inside a “reactive mode” because I am experiencing anxiety related to a past traumatic event. The diagnosis of a terminal disease is traumatic. The paranoia of keeping my central line in tact as well as my pump, and mixing my medication is traumatic. The constant hospital stays, checkups, surgeries, and mandatory IV’s are traumatic. Healthcare coverage being a constant threat in America is traumatic. “Will I die from my disease, or without treatment?”

Wrapping your mind around the fact that you will have your organs replaced is indescribable — and just when you think you have escaped these continuous phrases of “you will have a normal life” — the line that doctors rely on for relaxation, you see Facebook updates of people having babies right next to your twenty-year old friend who succumbed to her fight with this disease. Just when you thought you could continue on with your Saturday morning cup of coffee you receive the news that the grant organization, Caring Voices Coalition, is no longer covering any expenses for your medication for 2018. How will you cover your $60,000 a month co pays?

Your perception of reality is a fight for survival which is vastly too intense for others, especially when reaction is what you are currently wired to produce in result of these perceived, and very evident threats. While I am currently seeking help so that I can improve my well being, I have broken down and transformed. I will never be the same because the skin which holds my body together has new tubes, scares, and shed repeatedly. It is okay to change amidst your survival.

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I wish in this country we completely understood the toll of a disease on someone, and that the consequences bleed into all parts of our life: it is not contained to a hospital room. Someone who is chronically ill becomes limited not only by the failing body they are trapped in, but employment, relationships, insurance, housing and mentally — disease can envelope you. Chronically ill people are so anxious about current day America and their future that while taking care of these defeated organs we ignore the health and well being of one our most important; the brain. Why would a country of plenty make the checkups and healthcare of an important member such a challenge? Well, quite frankly, our lives are too expensive and non existent to begin with. What did you call us Senator Pat Toomey? Burned down houses I do believe?

While the intentions and thoughts behind caring about a chronically ill person are pure and vibrating from what we think could be a good place, we have to be willing and prepared to fully encompass the mental obscurity that will plague this human. It is an exhausting exchange of interactions in which patients are losing their sure footing among this journey. Their entire way of thinking, reactions, and beliefs are developing and brewing among damaged cells, treatments, therapies, and IV fluids.

I didn’t withstand a war around me, but instead within my own body. Developing trust issues against my own being and country takes up my free time, and flashbacks to moments in surgery or ICU that I would love to avoid forever. I live in terror because I know they are coming back with vengeance, generous strange organs, rib saws, and a high chance of death in the form of treatment…or lack thereof.

-haley.

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