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'Someday' Is No Longer My Illness Mantra

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I have sat here for almost two weeks mindlessly staring at my calendar. I wake up in the middle of the night with an urge so strong to pack my car and just go places. For the first time in my life I truly do not know what to do with my life. Should I change my career goals and be an interior decorator in New York? Should I buy a sunflower farm down south? Should I move to New Orleans? Or should I pick the Eastern Coast mountains and spend my days waiting for fall foliage and making homemade apple cider? Should I finally apply to medical school? To be honest I have no clue what to do. All I know is that for the first time in almost a decade of being sick, I am going to actually live my life. To do all the things that I keep putting off, saying, “When I get better,” or, “When I am more stable.”

To answer the question that you’re probably asking internally, nope, I didn’t get “better.” In fact I am less stable than I have been in years. I have spent over 26 weeks in the hospital inpatient in 10 months. You know how many times I have said that on my Facebook page, to explain the sudden change to being a horrible friend? None.

If I go and read my physician notes attached to any medical visit from 2010 on, they all comment on similar attributes:

“Patient is pleasant and calm.”

“Patient is extremely motivated to increase quality of life.”

“Patient is motivated to achieve wellness.”

“Patient willing to try treatment X to achieve wellness again.”

If there was a poster advocate for being positive – it would be me. In fact my favorite thing to tell people as a Facebook admin for a large online illness support group is, “Take baby steps. Even if they are super small, its still a step in the right direction of healing and your old life.”

I have spent almost a decade telling my friends and family what my plans were once I was better. The countries I would travel, the colleges I would graduate from, the jobs I would take. How I am going to take my son and hike the Appalachian Trail. We are going to see every National Park in the Continental United States. My dream vacation is to go backpack Banff National Park in Alberta, or at least camp, swim, and hike. Everything had to wait though – for when I got better. For that someday healthy me to emerge

Even my personal life has been on hold. I am the queen of waitlisted promises. Ireland vacations near the coast and a cottage with a garden. Going to the mountains and watching the weather change for hours with a beer and a tent. Date nights, downtown dancing, hand holding and kisses. None of which include an ER visit and another lengthy hospital admission. None of which include long romantic walks down the hospital hallway with my pole. Definitely don’t include becoming tangled in my infusion lines while trying to cuddle.

I had to wait for all this though, for when I was well, as those experiences seem like they would be less being ill or that those were things granted to someone only when they are healthy. If they cannot be done easily from a medical standpoint, they weren’t worth doing yet. Someday became my mantra.

My son has never known me healthy. He doesn’t know the mom who was going to save lives. Who did save lives. Who joined the ambulance crew as a 5’5″ female and didn’t allow the men to intimidate. The mom who was going be the best cardiac physician assistant she possibly could. The mom who rock climbed all day and loved to go dancing, albeit horribly dancing. The mom who loves mountains with all her heart and used to take hikes, daydreaming of a log cabin in mountains with books and coffee. I realized with sadness, he doesn’t really “know” me. He knows someday mom.

I have spent eight years cherishing every moment of his. Every step, word, milestone – I was there with amazement and determination to soak in every moment of his childhood. I was happiest when I felt like I was spending my days with family watching them live. I mean, we all know the statistics – patients with positive outlooks and good support systems tend to heal faster and have better outcomes. I had all of those, why wasn’t I better so I could make memories with my family already? I waited eagerly for the day I could create memories for my family too. They were not going to include sick girl extraordinaire, they were going to include healthy someday me.

All of this incessant rambling has a point I swear, so if you have read this far, thank you. What brought all this on you may ask? I was told something a few weeks ago, “You may not get better.” This stopped me completely, my world turned, and I didn’t know how to cope. My entire foundation for illness has been living for the time period of healthy, known as when. My entire life for the last decade has been spent waiting for the next chapter. The healthy version of me, the one who will tell stories of medical anomalies and surgery. The time period of my life where I could say, “I used to be seriously sick.” It occurred to me that I have spent almost 10 years waiting for my life to begin, all the while not comprehending that this is my life. For someone who cherishes the moments and wants to be there for every second in fear someday I could not be, I literally was sitting watching my life go by. For a few weeks I was so angry, it would wake me up from sleep.

Then it happened – I realized that while I cannot do somethings the way I used to, what made the previous healthy path anymore superior to an ill one? If I want to be the mystical wild silver haired grandmother full of stories, who reads way to many books and drinks whiskey on the beach, then I would have to actually live.

My sickness is intwined with me, whether I like it or not. It does not define my self-worth. I am no less intelligent being sick. I shouldn’t shield the parts of my life that are sick to appease others, to make myself more attractive, or to be taken seriously without pity. There should not be a “but she’s sick” included in my description. This is my one life. My wonderfully twisted, chaotic, awful, beautiful and messy life. I have missed out on so much, just waiting around for my life to change, which is so tragic. One of my favorite books is “Be Here Now” by Ram Dass, and I am finally doing listening. I have absolutely no clue what I want to do with my life now. I no longer have a “someday” board on Pinterest. My mountain path is a bit more rocky, and I sure as hell need more backpacks and medical supplies to climb it, but I can’t keep waiting. So I have started to live again, and actually live. I am enjoying this moment and don’t feel the need to replace it with a healthy one later on. This is unapologetically me, and I am here now.

Getty Image by Astarot

Originally published: September 26, 2018
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