Four years ago I was frozen by the conversations we began to have about my future following specialized medical testing, however, I still understood the big picture. The consensus of the conversation went along the lines of the doctors agreeing with the suspected diagnosis of Mitochondrial Disease, like my brother. I have total digestive tract paralysis in nearly every section of my gastrointestinal tract - medication would not make a difference in the functioning of my gut, and surgical routes no longer became an option. They said I would be dependent on IV nutritional support for however long my body chooses to hold out due to the long-term complications of IV nutritional support in combination with the overall condition of my body. While all of what he said has proven to be mostly true, my body has continued to hold out fairly well. No teenager should be forced into conversations like the one my family had in 2014. Unfortunately, every single day teenagers just like me are being forced comprehend and decide how they will respond to the devastating diagnosis.
When the news dropped, every thought racing through my head filled me with fear. For a little over a year prior to that day my life already felt as though it was crumbling underneath me. Everything I had built myself to be had began to had fallen apart. The news that the doctors told me was the final straw that broke me. Why did this have to happen to me? It wasn't supposed to be me. It's not fair! I wished I was an average teenager with an average teenager life. I wanted to be me, again. The me who played soccer every weekend, me who was an honors student, the me I was before I got sick... I was so angry with God and everyone even if it wasn't their fault. I did everything that was asked of me, I sat there and I took it. I stuck it out through all the scans, all the needles, the surgeries, the fifteen million medications, fatigue, sleepless nights in the hospital and the earth-shattering pain that seems like it will never end.
The days were long and each conversation we had with the doctor's left me feeling defeated. Even the doctors didn't have hope that things would get better, so how could I? I thought it was the end of my world. I was a terrified fifteen-year-old girl who was scared out of her mind while trying to process a very adult-like situation. No one could blame me for feeling that way though, even the doctors said they didn't think of much could be done to help my situation. I walked out of the hospital that day with a blank expression on my face. I didn't cry, I didn't speak, none of us did. We were all still trying to process what was happening. We got home a few days later as all of this information set in; I cried myself to sleep. I knew it was bad, but I didn't think it would be that bad. The thought of it being this bad didn't cross my mind because stuff like this isn't supposed to happen to someone like me.
It is only now, years later when I can truly understand how far I have come since they thought I had no hope for a future of good quality. That doctor told me there was no hope but he was so wrong. I'd like to think I am filled with more hope now than ever. I realize each person has a different mindset regarding the concept of hope. Maybe that doctor and I had our eyes set on different goals. His idea of hope was that one day he would be able to restore my broken body. He had hoped I would get the chance to return to "normal" or whatever that may look like after going through a serious illness.
However, my hope is much bigger than a doctor saying, "I am sorry, there is nothing we can do." My hope is larger than life. My hope focuses more on being thankful for everything that I am, rather than everything I am not. I changed. A serious illness does that to people. The emotional scars leave bruises that will never go away. I am not the young girl that I was before I got sick. I am a writer, a big sister, a photographer, and a college student. My hope for nothing more than to get back to living. I don't care whether or not that idea of living is filled with fifty million medications and needlesticks as long as I can use my life to reach out and fight - not only for myself but for others who don't have that chance. My very last hope was and still is to advocate, speak out, lead and preach it. As Matthew West said in a song of his, "Because if not us then who?" So Lord, let it be me if you must. There are hundreds of terrified teenagers like me, who cry themselves to sleep as pain stretches over every inch of their failing body. Let my life be the reason that our society wakes up and makes a difference in how we support teenagers with serious illnesses.
Now more than ever my hope is roaring like a lion.
My hope is in the hands of God.
