Life With PH, Personal Life

My Best Decision.

A few months ago someone asked me what the best decision I ever made was. I’m a girl, and on a small level that answer changes daily. Sometimes it’s a vintage find I purchased, or a club I danced it. But, when we’re talking about the big overall lifetime one…I had just a simple answer for that.


Months I spent trying to exist in this life, and fight to remain normal rather than fight for my life. I thought because I newly alone, newly diagnosed, and because I had an incurable disease that maybe my purpose was in fact to die, I mean, why else would anyone be diagnosed with such a fatal disease? My small, closing arteries were a powerful force not only dominating my lungs and heart, but my brain, and it felt more natural to hate myself than to attempt to move on. I resisted moving forward with treatment, and daily, had to listen to my doctors trying to talk me into abiding by their rules. I pushed life away, because in my eyes I was no longer worthy to live, and I was no longer normal. My body spent most of its time lying in bed processing negative thoughts yet death never came. My lungs did not receive the medication they needed to move forward, and my relationship didn’t defy my social life. I continued to exist, I was in fact alive, yet still, I was never normal. I realized that I was never normal, I was never meant to be normal, and that I’ve always been phenomenal. The thought of my family lowering my casket into the ground, wearing their purple ribbons and realizing that their daughter or sister didn’t even attempt to fight, overwhelmed my mind. I lifted myself off my bed, walked to my dresser, unscrewed the cap off my pill bottles and ingested the medication after almost three months of no treatment. Soon, slashes of self abuse on my wrist began to heal, and the pain in my chest disappeared along with the rising pressure in my heart. I saw the joy that overwhelmed my doctor and nurses faces, as they showed me that my treatment was successful, and I was going to actually live. I then made attempts to get involved with the Pulmonary Hypertension Association, creating my own T-shirt design, and launching them on my newly created blog. It has been an intense, yet ecstatic feeling to see such uplifting words from readers, newly diagnosed patients, and even moms contacting me for advice, because finally I was acknowledging not only this invisible disease, but the mental side to fighting a disease that is too often ignored. Thank y’all for making all of that possible. At eighteen years old I was handling emotions, hospital bills, surgeries and mental struggles that sometimes even adults are not prepared for. I’ve never had a chance to be a young adult, because beyond my expectations I was definitely propelled into the real world with Pulmonary Hypertension being one of the many options it has to offer.

On my own as a new adult, I have had to rise up out of my depression, and my messy bed to progress through life, becoming brave enough to see other options. Daily, it’s a scary thing to actually confront this world, and consciously choosing to exist in it despite the frightening realities that consume our minds and hearts. The best decision I have ever made? Why that’s simple; to live.


P.S – Our song of the week is Space Cowboy by Jamiroquai. 🙂


6 thoughts on “My Best Decision.”

  1. Haley, I so love this post! It speaks to me in so many ways. You know some days, I do feel like giving up but I keep moving forward and know that I have to fight this fight as best as I can…Having a 21 year old Daughter myself(no I am not that old, LOL)I see so much inspiration in you and I love your zest for life…you are one amazing young woman ❤

  2. your post reveals some of the biggest fears I have for my daughter that was diagnosed at age 9 with IPAH, 18 months ago. Your post also gives me hope. She has a great faith but I fear the teen years and the “dark” thoughts I know she can have at times. thank you

    1. I definitely know what you mean by dark thoughts. It will be tough, but surely her IPAH will be a second nature type thing by that time. Keep being supportive, open to new ideas and raising her that way. Support makes all the difference, especially with her “romantic” relationships. Thats what almost killed me. Sounds like you are doing a fantastic job already by acknowledging the darkness. Keep PHighting like a fantastic mom, y’all will be great. 🙂

  3. Haley, I read this and it made me cry. I see Shaye ( my 13 year old with PH) struggling mentally, phsyically, emotionally, just wanting to give up sometimes. She is quiet alot lately and I wonder what goes through her mind, because she won’t talk about it. Doesn’t want to admit she has this awful disease. Hates that she has a hole in her chest with a central line, carries a pump ( tries to hide it and does quite well). Other days she is a force to be reckoned with. Thank you for the inspiration, and I am so looking to meeting you in June. Hugs and keep up the PHenomenal PHight Haley!

  4. You are an amazing young woman, and that definitely was the best decision. I have a 9 month old grandbaby who was diagnosed with PH at 4 months. Your courage and bravery is something I hope for her.

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