Oh where do I even begin? You brought more than anyone could have ever imagined… You brought storms of Herculean strength- volatile and treacherous. You brought the most beautiful moments of clarity and peace. You brought moments of agony and pain. You brought moments of pure heaven on earth. You brought it all- and you showed me how to fight as hard as I possibly could.
This year had painful discussions, and hopeful discussions. I watched as my health continued to decline. I had to fight through the emotional devastation of being denied a transplant, being told I was too systemically sick and complex. I endured my GJ tube dislodging countless times. I began our “Hail Mary”, and stepped into the unknowns of IVIg. I traveled to Flordia to see my beloved Grandma Carol, and I ended that trip becoming incredibly sick. It would be a very short time later that she became an angel in heaven, and we tried to carry on with broken hearts. I watched my class graduate, as I remained behind. I watched them as they crossed the stage and stepped into the next chapter. While I felt sad and lost, I also felt incredibly hopeful and inspired. I got to see these individuals grow up as we went through school together, and I then got to see them open their wings and soar into the sky.
I celebrated turning 19, and cried tears of joy. I felt so grateful to have been able to make it that far in life. I felt so grateful that my body had survived all that it had endured. I felt grateful that 2018 brought me so far. And I knew I had to gear up, as the time to send out my case to more transplant centers was rapidly approaching.
Despite the hardships the year brought, my life changed forever this year. What happened, was nothing short of a pure miracle. After 5 rounds of high dose IVIg, multiple discussions of considering discontinuing it after the 6th round due to seeing no results, my gut proved us all that it still had fight in it. After 5 rounds, I had my first normal gastric emptying scan in years. I had my first improved manometery study in years. For the first time in ages, I was allowed to begin eating by mouth. After tolerating nutrition into my small intestine, we bid farewell to TPN. After hours of crying from pure joy my medical team, my family, and I all thanked God for our miracle. For the first time in years, we felt true hope, we finally were not worried about not surviving this fight. Instead, we knew that we were finally gaining the upper hand of this fight.
My life changed forever from August. By the end of the month, I had surgery to remove my GJ tube and close my gastrocutaneous fistula. While the surgery left me with a post-surgical ileus, an open wound to pack for weeks, and severe pain; it gave me a chance to live life without a tube that dislodged. That surgery symbolized a day we never thought would happen.
The days, weeks, and months to follow would be full of learning. Learning how to drive again. Learning how to swallow all of my medications orally. Learning how to eat again. Learning how to take an almost full load of classes again. Learning how to do things on my own again. Learning how to- well- live again. Learning what my body’s limits are. Learning how I can live life to it’s fullest. Learning that it may always be a continuous process to heal from the emotional and physical trauma that has happened.
I was able to resume attending school. With the combination of at school and online classes, I am one class shy of a full load. I was able to travel out of state for non-medical reasons. I got to meet my soul sister, Madeline, in real life. I have been able to finally live without debilitating pain and nausea every single moment of the day. I was able to graduate from Palliative care, something that almost never happens. I have been able to begin discovering myself again. The list of highs this year are infinite, 2018 has brought endless joy and pure bliss.
I learned that even when I am on the peak of this fight, the slope is still very near and the fight to stay above it is all-consuming. I learned that I must still invest all of my strength and courage into this fight. I must fully dedicate myself to my health… I must remain on a strict regimen of IVIg. I must continue to care for my body and all of its needs. I must accept that there will be very challenging days, there will be days I feel unwell. Yet, those days are not a defeat. They are a part of this beautiful journey, and I am striving to learn that.
I have faced dire situations in these past years… I have had to worry about my future. Yet, today, I am alive. I am fighting. I am thriving. I am surviving.
I look back at this year and I cry. I smile. I laugh. 2018, thank you. Thank you for the incredibly low lows. Thank you for the incredibly high highs. Thank you for giving me a miracle, and a second chance at life. Thank you for putting me through hell, to come out stronger than before. Thank you for letting me live, another beautiful 365 days. Thank you for giving me memories. Thank you for giving me this time where I can enjoy food, and be free from the chains of intestinal failure. Thank you for letting me survive multi-organ failure.
2018 put me through the most challenging and wonderful moments… and once again, I march into the unknown of 2019. Yet, this year, I truly survived, and I walk into the new year with profound hope.
2018, thank you. 2019, hello and I am grateful for the ability to have made it to enter this new chapter. Happy New Years everyone, may this year be full of joy and growth, you are loved.
This year of 2018 would not be possible without God. He carried us through every trial, and guided us along this journey. He kept me going. I also thank my village- my team. To my doctor, nurses, care partners, and countless other medical professionals: thank you for not only keeping my body going, but keeping my spirit alive and happy. You enveloped me with love and support at my weakest moments, and cheered with us at my strongest moments. Dr. Chelimsky, Dr. Humphrey, Dr. Arca, Dr. Pan, and countless others… My dream team of nurses at West 11, and outpatient clinics… The people that advocated to give me the best chance science had to offer. To every person who has followed our journey, liked my posts, commented on photos, sent cards, sent love, prayed, sent good vibes… our little online and in-person community: thank you. You have kept me going and fueled me with profound energy and love. To all of my fellow chronic illness fighters who truly humble and inspire me every single day. I truly believe you all are a pivotal part of how I kept my spirit strong throughout all of this. And to my family and friends… there are not words. To my mom who has advocated relentlessly for me, you are my hero and my role model. I love you endlessly, and thank you forever. You have sacrificed so much to help me, and I owe all of my good days to you all.
I enter 2019 thinking of all of these people and my medical team, and promise to live this year to its fullest in everyone’s honor. The smallest sign of thanks I can give for the profound impact everyone has had on me. The people who have given me a beautiful life.