How ibdjourneys.com got it's start. By Sharon Coyle Saeed
In memory of Amy Blume Eberhart gone 2 years but not forgotten
ibdjourneys (yes its all lowercase letters) was born on August 2012 at Mount Sinai Hospital, NY. I...n the previous year, I had 2 back to back abdominal surgeries and was in the hospital for 7 out of 12 months. Let's just say I was a bit in turtle mode....arms and legs in shell, protected layer on and curtain pulled fully around my hospital bed.
I didn't leave the room during my stay and certainly didn't want to talk to roommates....until this one roommate. She also had IBD and was having intestinal blockages. I was answering her questions from behind the curtain, when all of a sudden, she whipped the curtain open and in her Lake Grove, NY accent asked, "How can you taWk behind this thing?"
For the rest of the day, she talked and talked. She told me about her two daughters and her son. I believe her youngest one was doing a gymnastics competition. She also was excited as a family cruise was being planned in the following week. "Look at this pocketbook I purchased from the gift shop for my cruise!"
Her name? Amy. We bonded instantly like sisters....sisters in IBD. We both didn't do hospital gowns. Amy wore Victoria Secrets Pink sweat pants and a zip up hoodie, and I opted for my t-shirts and shorts. When Amy walked into the bathroom we shared, she called out, "Girl, I thought I used a lot of product but you got me beat." (Yes, I am a sucker for lotions and body sprays).
Our favorite past time was putting on makeup in the morning and covering for her when she went out of the hospital to smoke. "Where is your roommate?" , the nurses would question. I came up with several replies. "At the giftshop, at Starbucks(yeap, there is a Starbucks inside of Mount Sinai Hospital. ..Upper East Side people... think Gossip Girl style), walking the halls, in the hallway bathroom....". One time when Amy ventured out, I had my eyes closed, music and headphones on. I was singing the song "For Good" from the musical Wicked. Not realizing she was back, Amy came over to my bed, poked me and said, "You really can sing....that is my favorite Broadway show and my favorite song from the show." This was getting uncanny for we had so many similarities.
One day, I had to go down for a Small Bowel Series. This test, especially when blocked, can last all day and night. After drinking Barium, X-rays are taken at certain times, following the Barium until it reaches the (in my case) J-Pouch. I left at 8 a.m. and was up by 6 p.m. When arriving in our room, something was different. Amy's bed sheets were still on, but her essence was gone. I looked in the bathroom, and sure enough, her things were not there. On my bed, was the People magazine I left her with that morning, and a note that said, "Thanks for the read. Call me." That evening, I downloaded on my itunes, "Ain't No Sunshine" by Bill Withers, and kept it on replay.....I still can't bring myself to listen to that song today.
I missed her bright smile, cheerful spirit, and then, it dawned on me. If she could make me feel so good, I can try to make others feel good as well. What is that saying about we are all living lives of quiet desperation? Well, who said we have to be alone in this suffering? For the rest of my visit, if I wasnt sleeping, I was in the dayroom or walking the hall and I would smile, start conversations, and try to brighten the day just a bit for anyone who crossed my path. I did collect several phone numbers as Mount Sinai's GI floor has primarily IBD patients.
When I reached home, Amy and I kept in touch all the time. I told her how she had such an impact on me and now I wanted to reach out to others as well. ibdjourneys was born---a place to connect (like we did), share(exchanging our war stories) and inspire(trying to extract the positive out of an adverse situation). In October 2012, the website and facebook page were created and Amy was the second person in the facebook group. As of December 2014, we now have 2,052 members on facebook, 1.6K followers on instagram and a youtube channel for shout outs. We are still reaching out to find our IBD family worldwide!!! Currently, we have members throughout the US, Canada, England, Israel, India, Ireland, Australia, South Africa and more. However, we want to connect with all of our IBD family, so no one will ever have to feel they are alone in this battle.
I was hospitilized at Mount Sinai from late November thru December 17, 2012. Amy texted and said she was at her local hospital and blocked again too. She said she would be coming to Sinai later in the week for surgery. We missed each other by 4 days.
On the day of her surgery, we texted. Right before they brought her in, I quickly copy pasted the lyrics, "For Good" from Wicked. The song's lyrics explain how two female characters have come into eachothers lives for a reason, and they were both changed "for good" by meeting eachother.
When she woke up, her texts and calls came, but something was wrong, and she had to head back into the operating room. Since I was in for two months straight (one month local, one in NYC hospital and in the hospital the past Christmas), I had a small bucket list for the holidays......take kids to Rockefeller Center and see the tree, go to my sisters for Christmas day, take the kids to see new animated movies in the cinema, and of course New Years Eve celebrations. I texted Amy holiday greetings and New Year greetings thinking she was out and spending time with family.
When New Years day rolled along and I didn't hear from her, I was very concerned. I logged into facebook to see if she updated her homepage. Someone wrote on her wall, "I cant believe this!" I thought, "Darn it, she is still in." I scrolled down more and that is when I felt the life being sucked out of me and as if the world was closing in around me. It was her obituary. Amy passed on December 25, 2012. She never made it out of that surgery leaving behind a husband, three beautiful children and a loving family.
I knew that I had to keep fighting on. How can people think this disease is just a stress related thing or an irritable bowel? This is a serious auto immune disease which can rob you of your life while you are living and take your life through complications (whether medical, surgical, extra manifestational). Then, I wrote on her legacy online. I made a promise that night. I promised that I would make sure until my last breath that we will be heard and that Inflammatory Bowel Disease WILL be a household name like Cancer and Heart Disease.
ibdjourneys is about the connecting part as that is where we gain our strength, but it is also about advocacy and speaking up. It is my dream for all of us to come together, and stand united. In greater numbers, we have power for change....and a change has gotta come.....a change in more effective medicines, a change in utilizing more alternative treatments, a change in having and receiving respect for our disease, a change in having more rights in regards to obtaining and not having to struggle to gain temporary or long term disability .....and yes, I still pray and send positive thoughts towards the dream of finding the cause, so we can be cured....for our current IBD family and for those yet to come.
Amy, I leave this off with our song lyrics, "For Good" from Wicked.
"People come into our lives for a reason.
Bringing something we must learn
And we are led, to those who help us most to grow, if we let them.
And we help them in return.
Well, I don't know if I believe that's true, but I know I'm who I am today
Because I knew you.
Whose to say if I've been changed for
Because i knew you, I have been changed for good."
Yes, my dearest friend, I have been changed for good. If it wasn't for you, I would still be in my shell with curtain drawn. Today, I announce that Amy Blume Eberhart is forever honorary Co-Founder of ibdjourneys. I hope you are looking down with that huge smile and saying, "Keep on fighting!" I know I wont give up this promise till I can't give anymore and we meet again. See you on the other side of the curtain. ~Sharon
Sharon Coyle Saeed Progresses our ibdjourneys.com I am so blessed to be on this path with you sister. So very blessed!!!