Maddie Hunter [MH]: How do you tell your myeloma diagnosis story to somebody that is new to the journey?
Cindy Chmielewski [CC]: I was completely naïve of the healthcare system, lived in an age of doctor knows best and just blindly followed doctor's orders. I was completely lost. How about you?
MH: My father had myeloma as well, so I'm one of the few people that when the physician said, "You have myeloma," I knew exactly what he meant. And it didn't matter that I knew something about it because the shock was there, too. My initial response was to learn and to get as much information as I could. It didn't take away the shock, but it helped me do something with the shock. So you had some emotional reaction at the very beginning, and yet I look at you now and I look at the confidence and the empowerment that you just ooze, in terms of all the work that you do. How did you go from that initial feeling lost to being the patient and the advocate that you are today?
CC: I was retiring, and I thought I was going to be that person sitting on the chair, watching soap operas. And you told me we would find something. You told me your story, how you became this life coach and how, you know, you have this whole second career. And I thought, "Well, no, I can't do that. That's not for me." And then I said, "No. Why not?" I realized that I'm sure there are other people out there that were like me, especially older people who are diagnosed with myeloma who say, "Oh, I trust my doctor. I believe in my doctor." I wanted to let them know you can trust and believe in your doctor, but that still doesn't mean you shouldn't be engaging in conversations and educating yourself.
MH: Our work together in the Philadelphia Multiple Myeloma Group, this has all come about because I need to be with other people as part of a community in order for me to learn best. And I knew by joining our group, I was going to get stories from other people. I was going to get facts. But I was going to get support to be able to be emotionally present. And I feel like there's a beacon of hope that I can represent. Not everybody will be stable like you and I, but it does offer a place to dream into. And I think we remind ourselves that maybe this hour and maybe this minute is what we really have.
CC: Right. Live in the minute. The other idea I learned about, and it's really good in our support group, too, is this idea of leaving space. Like sometimes we want to solve everybody's problems. We want to tell them what it is that they should be doing. But sometimes you just need to sit back and listen. Let them talk. That's hard, because sometimes you want to offer advice. But not every time someone is seeking advice. They just need someone to listen.
MH: We can trust each other to know what we need. This is one of the gifts that myeloma has offered to me, and I can tell it's offered that to you. So thank you.
CC: Thank you for inspiring me and being my mentor and showing me what I can do. Having myeloma has given me a whole different other life. Now, I'm not a 5th grade teacher anymore. I'm the myeloma teacher. So it's a continuation of my role of being an educator, and I'm just educating a whole different population of people.