For most of us, it is not too difficult to recall a time in life when we felt left out, misunderstood, or alone. As human beings we long for a connection with others. Connection strengthens us; helps us face life’s challenges; and deepens our appreciation for those who share common interests and experiences. When we’re connected with others we can accomplish far more than if we go the journey alone.
Henry Ford once said “Coming together is a beginning; staying together is progress; working together is success.” As we prepare to announce expansion of our CML Connection program in a number of locations around the country, we thought it would be good for our readers to hear directly from one who created that beginning for herself and has seen, first hand, the progress as her group has grown over the past few years.
Jen Schwarz is a busy commercial real estate professional, active wife and mother, CML survivor, and Co-Facilitator for our Chicagoland CML Connection group.
This is her story in her own words…
I grew up in a fairly large family. My parents were both divorced and remarried. On my mom’s side of the family there were four of us kids: me, my two younger sisters and my brother. On my dad’s side, there were six: me, my sister, two step-sisters and two step-brothers. Family gatherings were always fun and loud. I always felt safe and secure. I was never alone. I never felt alone. There was always someone there (whether I was happy about it or not).
A little over five years ago, I was diagnosed with CML. I had my family, including my husband and my own children to lean on, but it is really difficult to understand something fully if you are not the one with the diagnosis. The doctors told me that CML was very rare with approximately 5,000 people diagnosed in the United States that year. I certainly hadn’t ever heard of CML so I took to the internet to do some research (what else do you do these days?). I found a few articles here and there, but nothing that connected me to anyone else that had this disease. The local oncologist I was seeing at the time had only treated 10 CML patients. I felt really discouraged. and alone – very alone.
About two years after my diagnosis, I came across The National CML Society during one of my many internet searches. I decided to contact the organization because I wanted to help set up a local CML Connection group in my area so that I could meet other CML’ers like me. As it turned out, there was another CML’er in my area who also wanted to start a group. What??? Where had this person been for the last two years? The answer: practically in my own backyard. She lives about 15 minutes from me. The first time we met was wonderful! It was so nice to sit and talk to someone who knew EXACTLY how I felt and shared the same emotional and physical consequences of this rare disease.
A few months later we held our first CML Connection meeting. There were five of us at that first meeting – a small group. It felt fantastic to sit and share stories with others just like me! Since then our group has grown and we meet regularly. I feel very fortunate to be able to meet each and every CML patient in the Chicago area and around the world. We bring each other up and support each other. We’ve each had our own unique journey through this illness and even though those journeys may be very different, we share a commonness that binds us.
I am so very fortunate to be a part of the Chicago area CML Connection group. I appreciate each and every CML patient that has attended our meetings. I am not sure where I would be without their support – it’s priceless to say the least!
Jen (pictured far right) and Chicagoland CML Connection group Co-Facilitator, Lisa Llewandowski (center) facilitate a Q & A session with Dr. Luke Akard
The CML Connection program is expanding and a number of new groups are starting soon! We will announce these new groups during the first two weeks of October! Watch the National CML Society website and social media sites for more information.
In the meantime, if you have questions about CML Connection and how you might become involved, email us!