Ever since I was a young child I always had a persistent fear, a fear of the unknown. This fear correlated into many other fears I had… Fears of unknown in the depths of lakes and oceans, fear of unknown in natural disaster situations, fear of somehow being separated from my family and the unknown of how to get back to them… From a young age we are asked what scares us. Our minds are instantly trained to acknowledge fears and things that burden us. As we grow older those questions remain and stay by our side. It is a conversation that come up in many ways: sleepovers, classes, hallway chatter. What are your fears? What are you scared of?
My fear remained the same for a very long time. It scared me like every other individual is scared of their fears. Once I became ill in the 6th grade I questioned if my fear of the unknown correlated to being sick. I left that alone and tried to focus on other things. The summer of 2016 I went into intestinal failure. I lost the function of my stomach, small intestine, and colon. After that decline my fear of the unknown fully became a part of my illness. I began to wonder what was to come out of this unknown… Intestinal transplants, clinical trials, adapting to this, and much more. I worried about those around me. How it would affect them seeing me so ill. I thought that was the worst of my fear of the unknown. In November of 2016 I took a turn and became more ill. Neurological symptoms ravaged my body rapidly. My muscles wasted away, I lost most of my independence, and went into stages of sever respiratory issues. I have spent months since working to regain basic functions. Now I strive to work in my home without the walker. However, these events all marked my fears and further deepened them.
The unknown from that time period grew even more in those winter months. Would I be able to do stairs again? Would I loose all of my diaphragm function? Would I get better? Would I get off of Hospice? Would I never recover? Would I leave those that lvoe me suffering and in pain from all of this? Would I forever imprint this agony on the hearts of my closet humans? What about those around me? What about the others? What, what, what.
Even as I fight with determination I can still feel these ever present thoughts. Today I still have that fear. It sometimes grips me with anxiety. I feel my mind fluttering around with thoughts chasing it. It’s hard to ignore fears that we have. Each day I strive to live my life without the worry of fears. I try to live in each moment. To be grateful for each moment. I am constantly trying to make myself a better individual to boost those around me. In these times I have realized one of the biggest concerns related to my fear of the unknown: how it will affect those around me. When the physical body is so ill it is near impossible to not feel scared. Living with a combination of rare diseases leaves no guidebook on what the trajectory is.
Treatment options are always limited, and some have high mortality rates. Clinical trials for Chronic Intestinal Pseudo Obstruction are rare to none, and transplants come with the operation that alone could be too much for the body to endure. As I go through the second week of transplant evaluation at UPMC I feel the stress of this process sinking in. The desperation is there. It is the fears that drive the stress. If the team decided to do a transplant, then it is a race to make it through the wait for the operation. If they decide not to, then it is a race to figure out other options to save my future. Now we must bear waiting to hear what this center decides for my future. The fears fuel the search for better days, no matter what medicine says.
It is important to always keep in mind we can die from anything. It may sound vulgar to say, but it is the truth. That helps us keep perspective. Life on this Earth is only so long. As I have gone on this journey, I learned this at the young age of 16 when I was faced with worrying about these things for the first time. I now am so aware of this. These fears. How life can end. How it is so precious, yet fragile and delicate.
As a result: I choose love. I am striving each day to take all of this as a blessing to appreciate life even more. Each moment. No matter how hard it is with these fears, I am going to strive to care and help those around me. The people around me, that’s why I work to shut out fears. It is the fear of the unknown and how it impacts those I care for that makes me realize fears are a blessing. They are a blessing in the sense they create the urgency to enjoy life. To treasure it. To make the most of it. I may not have the glass orb that shows my future, if I am strong enough for transplant or not, but I can choose now. Now is the time to make the most of life and truly enjoy it.
We are all human, we all have flaws and fears. However, learning how to use those fears to thrive, that is how to live.
Living with fears as fuel, fuel for love,
Thank you to each soul for embracing my family and I with love as we go on this adventure. All the way in Pittsburgh we can feel the good vibes radiating from all over. I am constantly humbled and blessed by the support. I hope one day I can return the favor! This precious photo of the amazing staff at Prairie is one exhibit of what this world is made of: love.