Marie Brown (43, USA)
"Look for the blessings even in the worst situations. They will always be there if you keep a heart of gratitude." - Marie
Q: Tell us about you. What health conditions do you live with and how have they affected you?
A: My name is Marie, I am 43 years old and I live in Texas. I was born with Gastroschisis, which is when a baby is born with the intestines outside the body. Unfortunately, the surgery at birth created scar tissue which would lead to several blockages throughout my life which required more surgery (and more scar tissue).
I always bounced back…until I didn’t. My last blockage ended with a diagnosis of Gastroparesis and things were never the same.
At the time of my last surgery I was a special education teacher, I wanted more children and had lots of friends. Within a few short months, all of those things were gone.
It was like my life exploded and there was nothing I could do but lay on my couch and watch.
Marie with her husband Robby
I have not eaten anything since that day without fear it would land me back in the hospital. I went from planning to grow old with my husband to begging doctors to keep me alive long enough for my daughter to go away to college.
The guilt I felt over ruining my family's lives was all consuming. We could no longer eat dinner as a family and our world revolved around trying to keep me at a healthy weight. I started planning my “sick times” at night so they wouldn’t have to see - I spent the next few years in the bathroom throwing up or in bed with the heating pad feeling lonely and tired.
At my lowest moments, I even prayed to God to just let my heart stop so it could all be over…but I always took that back quickly because I am a mother and I know leaving my daughter would be selfish.
Marie with her daughter Molly
Learn more about Maries Chronic health conditions by clicking on the links below:
Gastroschisis is a birth defect where a hole in the abdominal (belly) wall beside the belly button allows the baby's intestines to extend outside of the baby's body. The hole can be small or large and sometimes other organs, such as the stomach and liver, can be found outside of the baby's body as well.
* Information from cdc.gov (centers for disease control and prevention)
Gastroparesis means paralysis of the stomach. It's a functional disorder affecting your stomach nerves and muscles. It makes your stomach muscle contractions weaker and slower than they need to be to digest your food and pass it on to your intestines. This leads to food sitting too long in your stomach.
*Information from clevelandclinic.org
Q: What has been your biggest challenge, or hardest thing you have had to come to terms with, since your diagnosis?
I would say that my biggest challenge is knowing that my life will never be like what it was before. I will never be the same person I once was.
Some days I am stronger than others and on very lucky days I get a glimpse of the old me. I really miss that girl…she was fun!
Marie's symptoms include nausea, vomiting, bloating and weight loss.
I will carry this load until it gets too heavy, and then I will be gone.
All I know to do is hold on for now.
Q: Despite your challenges, what keeps you going and brings you joy on difficult days?
A: A few years back I started to attend a group cycle class for an hour every Sunday. My husband would have to drive me because I would get so exhausted and sick afterwards I would sometimes pass out on the way home, but I loved it. I lived all week for this class on Sunday!
I made new supportive friends and they are never grossed out when I have to get off the bike to run to the restroom to vomit in the middle of class, which happens more often than not.
After cycling for about a year I felt I could do more and now I am up to three hours of cycling most weeks as long as my weight holds. I get to feel normal and this has led to being
invited to other activities…most of which I cannot attend but the ones I can, I cherish.
These new friends even threw me a birthday party this past year, my first one since I got really sick! I had never wanted to celebrate before.
Marie's 42nd birthday party hosted by her cycling friends!
Although it is difficult for me, when I leave class I feel strong, loved and accomplished. It
gives me a purpose and makes me feel fulfilled!
Q: What is the achievement you're most proud of since being diagnosed?
A: My proudest moment since my diagnosis is when I achieved 100 rides at my cycle class. This usually takes others a few months, it took me a year and a half. All my new friends showed up and we had a party afterwards. It was huge for me!
Marie's party to celebrate hitting 100 rides!
I am now up to 350 rides and I am so proud of how far I have come!
Other special moments include buying my first bikini and actually letting others see my scar. I also feel proud when I can help/be of service to others. Right now I am helping to care for my husband’s grandmother and being able to be helpful to our family makes me feel worthwhile in this world again…like a contributor instead of just a taker. I am a Christian and I truly believe that God has allowed me to go through this suffering so I can light the way for others.
I have also begun sharing my story on my social media this past year. I never did so before because I didn’t want it to seem like I was fishing for pity and also I am embarrassed by my situation most of the time. As I have shared however, I have made new friends in the Gastroparesis community and we have been there for each other in ways no-one else can.
I have also realized there are lots of people out there rooting for me to come out on top and on the days when it hurts too bad to get off the bathroom floor, I read their comments and it gives me strength to keep trying.
I hope my participation here gives anyone reading this hope and a friend to call on. We didn’t come this far just to come this far!
Q: what’s one piece (or several pieces!) of advice you have carried with you during your journey that you want to pass on?
“The human spirit is stronger than anything that can happen to it.” - C.C.Scott
Never quit betting on yourself.
You are the only one that is going to stand up to fight and advocate for your health. Find doctors that root for you and don’t be afraid to combine natural and western medicine in order to get the best quality of life possible.
People will come and go on your journey…that is okay…not everyone is meant to be on this path with you. You will find the right people, I promise. This life you will lead will not be easy but it will still be pretty amazing at times…hold on for those moments!
You will learn what it is like to struggle, to lose yourself and to grow bitter but you will also learn what it’s like to overcome. You will learn these lessons over and over.
Your healing will not be linear…it will be up and down. Look for the blessings in even the worst situations, they will always be there as long as you keep a heart of gratitude.