Since 2011, our Peer Connect Program has united the chordoma community and fostered life-changing relationships between individuals affected by this disease.
Norma Jones was one of the first chordoma patients to be trained as a Guide in the Peer Connect Program back in 2011, and has been involved with the Foundation since we launched. Susan Garbett has been a Peer Guide for over a year and is the author of Confronting Chordoma Cancer: An Uncommon Journey.
Together with nine other trained Peer Guides, they offer free, confidential support for anyone who has been touched by chordoma and wants to connect with someone who’s had similar experiences. Conversations can take place by phone, email, or even in person; and with 80 matches since its launch, the Peer Connect Program has united the chordoma community in a way that was never available before.
As we celebrate the 10-year anniversary of the Chordoma Foundation this year, we have been reflecting on the history and impact of the Foundation’s various initiatives, and looking at the opportunities that lie ahead.
We recently had the opportunity to speak with Norma and Susan about their experiences with the Peer Connect Program and learn what the program has meant to them and those they’ve connected with.
What do you think people get from connecting with you?
Norma: I’m a counselor by profession. I think people need support in times when they face difficulty. Support is especially helpful if you have someone that’s been through the difficulty, and has first-hand knowledge of what you are experiencing. It gives you a better sense of, ‘Ok they understand what I’m telling them.’ It gives them that added sense that they’re not alone. It’s very important for those people who are scared, anxious, and need answers.
Susan: When I’m talking to a person, the first thing I explain is that this is a confidential communication. It’s my job not to give medical information, but to be an active listener and give them support wherever I can help. I give them a chance to tell their story, to talk about their fears and anxieties. It’s a chance to talk about some of the demands that this diagnosis places on them and their family. Of course they want to know details about me, but I want to hear about them first. And I want to validate what they’re feeling, to try to put them at ease so everything doesn’t seem too overwhelming.
What drove you to get involved in the Peer Connect Program?
Norma: When the Chordoma Foundation started, I was on the first Education and Outreach Committee. We thought it would be nice if we had people to support those who were newly diagnosed. Later on, I and a couple of others did the first training to be a Peer Guide. So you might say I was there from the very beginning.
Susan: I always did volunteering, whether it was in my synagogue or Johns Hopkins Children’s Center. My father struggled with vascular dementia and Alzheimer’s, and not long after he passed away, I became a support group facilitator for the Alzheimer’s Association. So when the opportunity arose to be a Peer Guide for chordoma patients, I thought I could make a difference.
Norma, what has it been like to see this program grow?
Norma: When I was finally diagnosed over 16 years ago, there was no one. There was no Foundation and there was very little information on the Internet. And what little information I did seek out was dire. You did not find very much that was promising or hopeful. And so I felt alone. Having both the Foundation, and now the Chordoma Survivors Facebook Group* and Peer Connect – this supplies so many people with a variety of resources to help them in their journey.
What have you taken away from your involvement in Peer Connect?
Susan: Being a Peer Guide is one of the most rewarding things I do. I have connected with interesting people from all over the country. I’m also learning from my peer partners. They have increased my knowledge about this very rare tumor – and just by sharing little details, different opinions from doctors, and some of the innovative procedures that I wasn’t aware of. The most gratifying part is when a partner says your support helped them during their journey. It doesn’t get any better than that.
Would you mind sharing a powerful experience from Peer Connect?
Norma: You get very, very involved and very close to people. I stay friends with some people for years.
I met one lady who has been very inspiring to me. She contacted the Chordoma Foundation because her situation got to the point where she was bedridden, hospice was called in, and she was so depressed. The Foundation reached out to me to speak to her. We’ve become very good friends, and I’ve actually visited her once.
This woman has shown great resilience, great inspiration. She has battled back. Her faith, I believe, has inspired anybody that talks to her. And her faith has caused her to become stronger. She’s doing a lot better now. She has gotten out of bed, and she is going to be trying a wheelchair soon. So that is to say, she’s done very well and encourages my life too.
Susan: I spoke with someone, a nurse, who was being treated at Johns Hopkins, just like me, with the same surgeon. When I was at one of my follow-up appointments, I was able to visit her in rehab. So I made a connection with a person on the telephone, and then months later, met her in person. That was wonderful.
“When you’re diagnosed with cancer or any type of debilitating disease, you can feel like you’ve lost control over your life. But giving of yourself to others can be rewarding—helping others so that they can learn the lessons that you have.” ~ Norma Jones, chordoma patient
What would you say to those who are thinking about becoming Guides themselves?
Norma: When you’re diagnosed with cancer or any type of debilitating disease, you can feel like you’ve lost control over your life. But giving of yourself to others can be rewarding—helping others so that they can learn the lessons that you have.
You shouldn’t take the disease as a punishment. Try to turn it around and say, ‘I can make this into something good.’ In Peer Connect, you can connect with another person, and by helping someone else, you can help yourself.
Through their experience, knowledge, and generosity of time and spirit, Peer Guides like Norma and Susan serve as a guiding light, illuminating the road ahead and offering a shoulder to lean on along the way.
Looking to connect with someone who understands the many challenges of dealing with or caring for someone who has chordoma? Learn how our Peer Connect Program can help you find support.
Do you understand the questions and fears someone might experience in their journey with chordoma? You may be uniquely qualified to give back to the chordoma community by becoming a Peer Guide. Apply today.
*Chordoma Survivors Support Group on Facebook: Newly diagnosed patients, chordoma survivors, and family members can connect with others in the chordoma community through a private Facebook group. While many members of this Facebook group are involved with the Foundation as volunteers and community advisors, the group is privately run and separate from the Foundation. Email approval from a group moderator is required simply to protect the privacy of members. If you are interested in joining, please send an email briefly describing your relationship with chordoma to the moderators at firstname.lastname@example.org.