Together We Are Stronger

In this month’s article, we are focusing on SUDEP Awareness Day, October 23rd, and sharing ideas about creating awareness, participating in a larger community, and motivating change. How might you play a part?

Become an Agent for Change

Raising awareness and understanding of sudden unexpected death in epilepsy (SUDEP) has an ultimate goal of finding its cause(s) and prevention.

As part of the SUDEP Institute, I am painfully aware of the countless families whose lives have been touched by SUDEP. In 1997, the loss of my own 17-year-old daughter Carei from SUDEP catapulted me, like many of you reading this, to search for answers. I grappled with trying to understand the pneumonic S-U-D-E-P. I had never heard it before the medical examiner shared the term with me, in spite of my 25-year-long nursing and medical career at the time. Like many of you who have lost a loved one to SUDEP, I felt an overwhelming and compelling need to spread the word and increase awareness. 

So many families ask, “What can I do to spread awareness? How can I become an agent for change?”

By definition, a change agent is someone who acts as a catalyst for change. There are five major characteristics:

1. Someone having a clear vision to work towards a common purpose.
2. Someone who is patient yet persistent.
3. Someone who has the ability to ask the tough questions because they are emotionally connected to something motivating them to push forward to find answers. 
4. Someone who is knowledgeable about a specific entity and leads by example. 
5. Someone who has strong relationships built on trust and is motivated to do what is right for the shared community.

Finding Connection

Many people are unsure where to begin to connect with a broader SUDEP community. The Epilepsy Foundation has just launched an online, closed Bereavement Support Group. As a closed group, participants’ interactions are only visible to each other, rather than the entire Internet, creating a safe, private outlet for sharing feelings and information. This is a great place to start and easy to join. Together, community members can become stronger and make change.

The Internet and its virtual platforms that connect people, including social media, are changing the way our society deals with life’s difficult questions, memorialization, and shared experiences. Online Support Communities are different than mainstream social media. Support communities have a distinct purpose and an additional emotional connection amongst its members. Participants are all struggling with a similar issue in their lives. 

These communities usually foster a greater social connectedness amongst their members because of their focused subject matter and the seriousness of the concern. Users can be emotionally vulnerable and feel they are in a safe place with a targeted population where shared concerns and experiences can be expressed. One participant stated, “They get it; I don’t have to explain myself.”

Hearing about the experiences of other group members can help: 

• Clarify gaps in your own understanding of SUDEP and motivate you to become more knowledgeable. Learn more about SUDEP. 
• Give you a greater awareness of other’s similar experiences and challenges and what their family has learned in the process. This can guide you to think about how to go about making change and take action with your own situation.  
• Decrease feelings of isolation.

Please share how our online community has been helpful to you in the comments below.

In honor of your loved one, you can make a difference.

Linda Coughlin Brooks is the SUDEP Institute Bereavement Support Facilitator; she contributes regular articles as part of our bereavement support services. You can contact Linda at sudep@efa.org. Watch for future articles and learn more about our support for bereaved.