Sharing your story after transplant

Posted March 8th, 2019 by Be The Match and filed in News
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Ted, transplant recipient

In 2005, Ted was diagnosed with acute lymphoblastic leukemia (ALL). Throughout his journey, he wrote in on his CaringBridge® website to keep his family and friends updated. Years later, those journal entries inspired his book with the dream to help other people through their struggles with illness.

Ted wrote his first journal entry shortly after being diagnosed. It started as a way to keep his family and friends updated on his journey, but quickly became the main source of support from his loved ones. “CaringBridge ultimately became my lifeline,” says Ted. “It allowed me to connect to everyone in the normal world…but it also became the place for my support army to post words of encouragement, letting me know what was going on ‘out there’.”

Re-connect with your experience

Fast-forward to about 8 years after his transplant, Ted was feeling frustrated with the effects of graft-versus-host disease (GVHD) and finding his “new normal.” He realized he was starting to forget the memories and life lessons from his journey. So, he decided to look back at his CaringBridge entries. “I was hesitant to cast myself back into the darkest days of my life to re-live the pain and sadness,” he says, “However, I wanted to re-live the hope, joy, and love that I felt throughout, and the many moments that molded the person I have become.” Re-living those memories and reflecting on them was a way for him to explore his emotions during his recovery.

While Ted was re-reading his journal, he noticed that there were things he wanted to write more about. “So,” he says, “I just sat down one day and I started to write.” To him, writing served as a way to heal and re-connect with his experience. What started with sharing a stapled copy with a couple of close friends, resulted in a published book, “My Extraordinary Demolition.”

Share your experience to help others… and you

Ted remembers being sick in the hospital, feeling isolated with very little information about the disease. He wanted to use what he’s learned to help other people during their transplant journey. He says, “I had been told by my doctor that people survive this illness, but I couldn’t get connected with someone. After my transplant, I wanted to be that survivor to talk to patients.”

Whether it’s been 6 months or 6 years since your transplant, you’ve come a long way. While most other people may not understand what you’ve been through, there are other transplant recipients out there who get it. Sharing your experience can help someone else who may be about to embark on their own journey, or in the midst of it. But it can also help you, too. Ted says, “I love helping people cope with issues after transplant because I dealt with them, too. Sharing my story not only helps the other person but it also helps me as I’m coping with my own recovery.”

Find what works for you

Thinking about sharing your story? Consider what information you want to share and how you’d like to share it.

If you’re comfortable sharing with close friends or family members, consider writing them a letter, an email or inviting them over for dinner. It can bring you closer with to your loved ones and they can better support you if they understand what your experience has been.

If you’re comfortable sharing with a small group of people, consider joining a support group. It can be a great way to connect with others that who understand what you’ve been through. Even if you don’t need the emotional support, sharing your experience can help other group members through their struggles.

If you’re comfortable sharing with a wider audience, consider:
• Writing to your local paper about transplant from a survivor’s perspective
• Sharing on social media, like Facebook

Today, Ted continues to share his story any way he can. He offers one last piece of advice, “There is nothing to lose and everything to gain by sharing your story. And, if you’re helping someone else, it’ll make you feel better. Absolutely guaranteed.”

The Be The Match Patient Support Center offers free:

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