To the Chronic Illnesses That Thought They Could Destroy Me
I hate what you have done to my body. I hate that you have taken away 22 years of my life and forced me to spend so many years in hospitals all over the country staring at the same four walls. I hate that you’ve taken away my athleticism and ability to play softball, basketball and soccer. It hurts to watch baseball and soccer practices going on right now and long to be out there playing. I hate that you’ve made me miss years with my family and many happy celebrations and big events because I was hospitalized or too sick to go out. I hate that I have lost friends because of you, and their lack of tolerance of the unpredictabilities that come with you. I hate that people have judged me because they don’t understand you. I hate that you took away my social life in college because on Friday and Saturday nights I had to spend my time just trying to keep up or catch up with my work.
I especially hate that you have stolen so many dreams from me. I wanted to go to grad school to be an art therapist, but you made that impossible. I also wanted to be a children’s book illustrator and you have stolen that as well. I wanted to get married, have kids and own my own home. It is not possible for me to have children anymore.
However, no matter how hard you have tried and how much you have taken away, you have not destroyed me. I don’t know what your plan was when you invaded my body, but you haven’t fulfilled it. It anything, you have made me a much better person and have given me more than you have taken away.
You see, I am a 10-year, five-organ transplant survivor due to the complications you created due to gastroparesis and chronic intestinal pseudo-obstruction. When you thought you brought me down by prohibiting me from attending grad school, you gave me a new passion by giving me the time and desire to start a nonprofit organization, G-PACT, to fight you — a nonprofit which has since become highly commended by top physicists nationwide. You have given me the opportunity to meet, help and connect with thousands of people struggling with the same issues and provide hope, resources, services, and education unlike any other. Without you, G-PACT would not exist and millions of people would not have a place to go for help for so many needs.
When gastroparesis and chronic intestinal pseudo-obstruction didn’t stop me, you decide to move on and attack other body functions. You decided to allow the mitochondrial disease to attack other parts of my body. You took a shot at my brain, my vision, my heart, my bones, and then attacked my colon again after my transplant. You took away my ability to travel for G-PACT, be as active in its growth, to make rational decisions, and to even enjoy my hobbies and pursue other passions by taking away my vision and color vision so I couldn’t even create art or pursue illustrating. You took away my ability to drive in my Jeep Wrangler on beautiful days and miss out on my passion of feeling the wind in my hair as I relaxed to the surrounding nature — a crucial coping strategy through my fight.
What you didn’t realize when you decided to attack my body is that you chose the wrong person. You chose someone who would always continue to fight. You chose someone who could look beyond the challenges you brought and find a way to use them for good. I’m a much more loving, passionate, caring individual with a stronger purpose than ever. I see the importance of life more than most. I wake up every day thankful to be alive.
Ironically, you actually took away my depression and low self-esteem by helping me realize that my life does matter. It’s worth fighting for. If I give up, so many others I lead will follow my example. Those friends that you took away only brought newer and better friends. Friends who care about me, love me, and don’t abandon me when I am not able to do everything with them. You have helped me understand unconditional love by helping me realize that some, especially my parents, will do anything they can to ensure I have the best quality of life possible and that all my needs are met. Because of you, I have discovered how sacrificial people can be by taking out time from their own busy schedules to help me when needed. That has inspired me to respond the same way to others in need. I know how to do this because of the first-hand perspective you have given me.
You know what? You may have slowed me down. At times you have even brought my life to a standstill. But you have not stopped me. I have always come back even better than before. Perhaps not healthier, but stronger. More driven. More passionate. More loving. And with so many more dreams focused on making my life and the lives of others better in any way I can, whether through teaching them how to laugh through the pain, offering a listening ear, visiting them when they are struggling, being real and sharing my story openly, or developing programs to meet certain needs. You have helped me meet some amazing people to share my love and life with.
Just when you thought you had me down for good, I looked at you and said, “You do not have me. My life is not over,” and I came back better than before. You made it harder to fight back. You fought to take my life and any form of quality of life away from me, but you lost. Again. Now I’m even working part-time. I bet you never expected that! People see a difference in me that they don’t see in others. A strong desire to make sure I’m doing all I can to ensure their satisfaction, and they see that I care about every single one of them and go out of my way to meet their requests with a cheerful spirit.
I’m planning on writing and illustrating a children’s book. I’m volunteering a lot of my time. I’m advancing my work in G-PACT again with an even stronger desire to do more. You will not win. I will destroy you instead. One way or another, I’m going to make a positive impact on the world that I never would have if not for you.
One of of my favorite songs is Brad Paisley’s “Hard Life.” Part of it says:
Yeah, it’s a hard life
But I’m OK
If I didn’t have this, I wouldn’t be who I am today
And I have lots of friends
Oh, and I have love
And yeah, I have a hard life but in some ways everybody doesThere’s a lot I can’t do
But don’t be judgin’ me
I’m in a body I hate
But I have my faith, more then what you seeSo what if I can’t kick a soccer ball into a goal?
I feel like I can lift 500 pounds with my soul
That’s what happens when bad things try to bring down determined or even weak people. It only makes them stronger and more determined. Thank you for helping me become who I am today.
Your Fierce Warrior,
Carissa
Carissa Haston is the founder and president of G-PACT, Gastroparesis Patient Association for Cures and Treatments, the leading nonprofit in the U.S. working on a cure for DTP. Digestive tract paralysis includes gastroparesis (GP), chronic intestinal pseudo-obstruction (CIP) and colonic inertia (CI). At 23 years old she founded G-PACT in 2001 (you can also connect with G-PACT on Facebook). She had to have a five-organ transplant because of gastroparesis and CIP (small bowel, stomach, pancreas, liver and duodenum). She had to receive a liver because her liver failed on TPN (the IV nutrition). She had lost all of her veins for central lines due to sepsis and was 62 pounds at time of transplant. She’s still kicking over ten years later! Carissa also suffers from multiple other conditions including mitochondrial disease, dysautonomia, Raynaud’s phenomenon, osteoporosis, long QT syndrome, optic neuropathy, dumping syndrome, a swallowing disorder, advanced brain atrophy, other neurological conditions leading to frequent falls. and generalized chronic pain. She has no colon, has an ileostomy and is fed through a j-tube. Carissa has a B.A. in studio art with a double concentration in graphic design and illustration. Her dream has always been to become an art therapist because in addition to writing, creating art has always helped her cope. She also dreams of writing and illustrating her own children’s book someday. Currently, she is working part-time at her local public library.
carissa-haston