As I look at my reflection in the mirror, I see what anyone who first meets me would see, a perfectly healthy young woman. I try to look deeper to see the difficulties and struggles a person with my illnesses has experience, but see nothing. Perhaps it’s not until you hear the sound of my cough as the mucus build in my lungs and my body becomes overwhelmed with the coughing attach, as my face turns red while I gasp for air. Or maybe it’s not until you hear of or see me in the hospital, time and time again, because of hymoptisis, liver disease, a lung infection, etc. It could be that you see the palmful of medications I take every morning before breakfast or every night before bed, or watch me doing treatments, taking insulin, or simply just exhausted from performing a simple daily activity. Maybe, it could be hearing the conversations I’ve had to have as the youngest person at UCLA for liver transplant evaluation. Perhaps that’s when people start to realize how severe my illness is. Even then I realize that to really know what my illness is, one would have to live it with me.
Since I was young I’ve always been afraid people would judge me and think I’m using my illness to get out of something. I feared saying no, calling out of work, missing school, etc. would make people think I was dramatic or even weak because to them I looked fine, simply because they just didn’t really understand the severity of my illness. This would sometimes force me to push myself past my limits. Living with CF, described as an “invisible illness” has often been very difficult. I have struggled most days with this since I was diagnosed, but have eventually learned with age and experience my health comes first no matter what. Regardless of what anyone thinks or believes.
I have recently had some intense conversations. The most unexpected thing for me to process was I already knew everything I was told, but after being personally told by my doctor face to face as I get closer to this inevitability, it became such a new reality. I absorbed the information a lot differently, as it weighed a lot heavier on my shoulders than I expected. As I sat there and listened to the words come out of my doctor’s mouth, “Transplant is an extremely invasive high risk surgery, it’s like a trade, not a cure, things won’t get easier, they will just change.” I sat quietly trying to listen to everything he was telling me without much to say, hearing “life expectancy is about 9 years after transplant, if you make it passed a year.” I knew this, I knew all of this. “Transplant can cause cancer, deadly infection, or rejection.” It felt so different sitting there and hearing it, like I was being forced to walk straight into my future without being able to turn back or ignore a future my illness would most likely endure. It had been over a week since my appointment and I was having shadows of fear come over me. I hate this shadow, I don’t want to fear the unknown or worry about the future. I believe in living day by day because we are never promised a tomorrow. It just gets a little blurry when being given this information by different doctors all within such a short period of time.
What I mostly fear about this information is not being able to be the mother I want to be for Paisley, or experience most things a mother wants to experience with their child. I will never doubt I can love, support, and teach her for the rest of my life; but one day I am afraid I might not be able to physically be there when she needs me because I am in the hospital or simply too sick to be there. When my lungs start to become progressively worse, as they over the past 2 years, I will slowly need to rely on other people and support systems just to live my daily life. My future brings a constant need for Oxygen, tube feeding due to being unable to absorb food and gain weight my body needs to survive, help walking from one place to another due to frail lungs and shortness of breath, etc.
Imagine being told at a young age you most likely won’t make it past 18, then making it past that age and being told you probably won’t make it past 36. It makes me feel like I am in a race with the clock, afraid the time might run out before I get to see the people I love grow, to be apart of their evaluation, not have enough time to tell someone I love them or enough time to remind them, to miss out on the lives of the people who have shaped mine and miss out on the moments that will shape theirs, not having enough time to experience life and reach goals I strive to achieve. I never want to leave the people I love so deeply, the people who loved me so deeply, inspired me, shared advice, picked me up on my worst days, taught me the greatest lessons, and gave me a hundred reason to fight for tomorrow. But one thing I am so grateful to know, every morning I wake up, and every night I fall asleep I will never be alone, I will never lack a shoulder to cry on, love, or support. As I stare right back at my reflection, I begin to fear the day my illness will reflect in the mirror.