Isn't it amazing how sounds and smells can bring back memories? Unknowingly, we associate memories with the sounds and smells that were present when the memory occurred. You may smell saltwater and remember your vacation to the beach several years ago or smell an old perfume and be taken back to a first date.
On Wednesday, January 24th, as I sat in the large infusion chair waiting for my infusion of Reclast for my Osteoporosis, I felt the rush of memories flood my mind. I was back where it all began: where I received some of my first (and last) Remicade infusions 2 years ago in April. The sounds, the smells, and even the sights took me back to a scary, new time in my life. A time in my life when I had been thrown into a world of medicines, appointments, and hospital stays without warning. I was uncertain and scared, but hopeful and optimistic. My life was changing before my eyes, but little did I know it would change in the ways that it has the last year and a half. If I could go back and write a note to my past self, this is what it would say:
"Dear Kristen,
I know how scary everything must seem right now; how uncertain your future may seem to be. You have been dealt a hand that you did not ask for, nor did you ever expect. You will be tested in ways that you could never imagine: physically, emotionally, mentally, and you may feel like giving up. Please do not give up. Your journey has only just begun. Through the tears, the pain, and the heartache, you will meet countless incredible individuals. Those individuals will lift you up in times of doubt and become beacons of light in your life. And know that when the times comes for you to spread your wings, to go off on your own and say goodbye to these individuals: they may leave your immediate life, but they will never leave your heart. Their kindness, compassion, and love will stay with you forever. Carry their words as precious tokens in your journey and use them when you begin to feel lost.
You will also face many difficult changes and, at times, these changes may carry the weight of the world. Do not be afraid to cry. Crying is not a sign of weakness, rather a symbol of strength. Reach out to family and friends; you are never alone, even if you may feel as if you are.
Whether you realize it right now or not, your story will go on to inspire thousands of other people battling both similar and different diseases. While you inspire, you will be inspired daily by the incredible stories of strength and bravery that you are told from around the world. Use the platform that you have created to raise awareness and use your voice to reveal both the good and the bad of your journey.
Losing sight of the way you thought your life would go is terrifying. You may not feel strong right now, but know that throughout this journey, even during the moments when you feel as if you cannot go on any longer, you are growing stronger. Every setback will yield an even stronger comeback. Have patience and be kind to your body as it works hard to heal and strengthen. Slow progress is better than no progress. You have been given this journey for a reason and, although right now nothing makes sense, you will experience moments of clarity that help light your path to the future.
Stay strong, little fighter. I believe in you."
This journey has not been easy and I feel as if many times I lack the ability to even put into words how hard it is at times. I love to inspire and I love to stay positive, but the reality is, is that I am only human. I have good days. I have great days. But I also have bad days: days when the weight of my illness is too much to handle.
Grief is defined in the dictionary as, "a deep sorrow, especially that caused by someone's death," and is one of the most powerful human emotions. But grief does not just stem from the death of a loved one. Grief can stem from the death of a life you once had: a life that you have lost. I have lost many physical items throughout my illness such as my colon and my hair, but I have also lost something that you cannot physically see. I lost the vision of how I thought my life was going to go. I lost the life I thought I knew so well; the life I thought would never face such tribulations. I lost the control I so craved in nearly every aspect of my life.
I lost my "normal."
Coping with my new "normal" and grieving the loss of my old "normal" is a rollercoaster of emotions and I am a permanent rider. Several nights ago, I sat in front of my mom, tears streaming down my face, and the only words I could get out between my tears were, "I didn't want this. I don't want any of this." I felt as if hearing myself say those words broke my own heart. No one asks for things like this to happen and no one wants them to happen. But that is the thing about life: it is unpredictable and, at times, downright ruthless. But life is also beautiful and miracles do happen every single day. Life presents us with challenges to show us how strong we truly are. So no, I did not want any of this and some days, I struggle with accepting my new normal. But I also recognize that my illness has led me down an incredible path in which I have been able to help so many people going through similar challenges.
I often ponder over the thought that, if given the opportunity to go back in time and cure myself of my disease before the hospital stays and the surgeries at the cost of losing all of the memories I have made and the people I have met along the way, would I do it? Would I give up the lessons I have learned and the connections I have made along the way for my old "normal" back?
My answer is no, I would not go back if it meant losing the memories and the relationships I have made along the way. This may seem crazy and irrational, but the experiences and people that my illness has brought into my life have shaped me into who I am today. I would not trade these experiences because, even on my darkest of days, the words of Esther, my nurse technician/ guardian angel at Johns Hopkins Hospital throughout my 4 surgeries, still resonate through my mind:
"I believe in you, Cosner," she would say, "and you are so loved in this world."
I have a long way to go in my recovery, both physically and emotionally as I learn to accept my new "normal" and begin to enjoy life healthier than I have been in a very long time and I will undoubtedly face many more bad days. But I know that those days are only temporary and are never an indication of my life as a whole, rather a snapshot of a single moment. I have a whole life of adventure ahead of me and the best is yet to come.
I am proud to announce that I have been chosen as an Ambassador for Fight Like a Warrior, an organization dedicated to eliminating the stigma behind chronic illnesses while also raising awareness and empowering those fighting chronic illnesses. It is such an incredible honor to be selected as one of only 20 ambassadors out of hundreds of applicants and I am so excited to use my platform to continue to raise awareness. Check out more on Fight Like a Warrior here: https://www.fightlikeawarrior.org.
